Get the Lead Out

In case you haven’t heard yet, my youngest and her husband are having a little boy at the end of the month. I’ve noticed that, as millennials, their generation shares what they already have instead of running out to buy new as my generation – the baby boomers – did. One thing that was shared with them was a 16 year old crib in ace condition.

I thought it was painted white and got nervous about lead in the paint until I did a little digging. Luckily, the anti-lead paint laws came into existence 41 years ago in 1978.

Then I started to wonder what sustained lead exposure could do to someone with Chronic Kidney Disease and turned to one of my favorite sites to find out. According to the National Kidney Foundation at https://www.kidney.org/atoz/content/lead-exposure-and-kidney-function,

“Having too much lead in your body can affect all the organs in your body, including the kidneys. When it affects your kidneys, medical experts call it ‘lead-related nephrotoxicity.’  (‘Nephro’ refers to your kidneys, and ‘toxicity’ refers to poison.’) Kidney damage from lead exposure is very uncommon in the United States.  In fact, most experts believe that kidney damage from lead is rare nowadays, especially in the United States and Europe.

It’s believed that lead exposure causes less than 1% of all cases of kidney failure.  It is usually related to jobs where workers are exposed to very high levels of lead, such as stained glass artists, metal smelters, and people who work in battery factories or remodel old homes. The low levels of lead found in drinking water, house paint, dirt, dust, or toys rarely causes kidney damage.

But if it does happen, it is usually only after many years of lead exposure (5 to 30 years).  Also, it is more likely to affect people who are already at risk for kidney disease, or those who already have kidney disease. In children, however, even mild exposure over many years can lead to health effects later in life, including kidney damage.”

Let’s say (Heaven forbid!) that you were among the “less than 1% of all cases of kidney failure” caused by lead exposure. How would you even know you had lead poisoning? The National Institute for Occupational Safety and Health (NIOSH), part of the Centers for Disease Control and Prevention (CDC) at  https://www.cdc.gov/niosh/topics/lead/health.html had an answer ready for us.

“Lead poisoning can happen if a person is exposed to very high levels of lead over a short period of time. When this happens, a person may feel:

  • Abdominal pain
  • Constipated
  • Tired
  • Headachy
  • Irritable
  • Loss of appetite
  • Memory loss
  • Pain or tingling in the hands and/or feet
  • Weak

Because these symptoms may occur slowly or may be caused by other things, lead poisoning can be easily overlooked. Exposure to high levels of lead may cause anemia, weakness, and kidney and brain damage. Very high lead exposure can cause death.

Lead can cross the placental barrier, which means pregnant women who are exposed to lead also expose their unborn child. Lead can damage a developing baby’s nervous system. Even low-level lead exposures in developing babies have been found to affect behavior and intelligence. Lead exposure can cause miscarriage, stillbirths, and infertility (in both men and women).

Generally, lead affects children more than it does adults. Children tend to show signs of severe lead toxicity at lower levels than adults. Lead poisoning has occurred in children whose parent(s) accidentally brought home lead dust on their clothing. Neurological effects and mental retardation have also occurred in children whose parent(s) may have job-related lead exposure.…”

Did you catch the mention of kidney disease? Now what? How is lead poisoning treated? Let’s see what another favorite site of mine, The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/lead-poisoning/diagnosis-treatment/drc-20354723   has to say:

“The first step in treating lead poisoning is to remove the source of the contamination. If you can’t remove lead from your environment, you might be able to reduce the likelihood that it will cause problems. For instance, sometimes it’s better to seal in rather than remove old lead paint. Your local health department can recommend ways to identify and reduce lead in your home and community. For children and adults with relatively low lead levels, simply avoiding exposure to lead might be enough to reduce blood lead levels.

Treating higher levels For more-severe cases, your doctor might recommend:

  • Chelation therapy. In this treatment, a medication given by mouth binds with the lead so that it’s excreted in urine. Chelation therapy might be recommended for children with a blood level of 45 mcg/dL or greater and adults with high blood levels of lead or symptoms of lead poisoning.
  • EDTA chelation therapy. Doctors treat adults with lead levels greater than 45 mcg/dL of blood and children who can’t tolerate the drug used in conventional chelation therapy most commonly with a chemical called calcium disodium ethylenediaminetetraacetic acid (EDTA). EDTA is given by injection.”

Is that safe for your kidneys? Uh-oh, according to WebMD at https://www.webmd.com/balance/guide/what-is-chelation-therapy, it may not be.

“When chelation therapy is used the right way and for the right reason, it can be safe. The most common side effect is burning in the area where you get the IV. You might also experience fever, headache, and nausea or vomiting. Chelating drugs can bind to and remove some metals your body needs, like calcium, copper, and zinc. This can lead to a deficiency in these important substances. Some people who’ve had chelation therapy also have low calcium levels in the blood and kidney damage.”

It looks like this is another case when you’ll have to present the information to your nephrologist and see what he or she advises in your particular case. If it’s a primary care doctor who is treating you for lead poisoning, be certain to tell him or her that you CKD.

Until next week,

Keep living your life!

Dapagliflozin/SGLT2 inhibitors

I’ve been reading a lot about dapagliflozin lately. That’s a word I didn’t know. And this is the perfect opportunity to learn about it. Ready? Let’s start.

The obvious first stop to my way of thinking was Medline Plus, part of the U.S. Library of Medicine, which in turn, is part of the Institutes of National Health at https://medlineplus.gov/druginfo/meds/a614015.html.

“Dapagliflozin is used along with diet and exercise, and sometimes with other medications, to lower blood sugar levels in patients with type 2 diabetes (condition in which blood sugar is too high because the body does not produce or use insulin normally). Dapagliflozin is in a class of medications called sodium-glucose co-transporter 2 (SGLT2) inhibitors. It lowers blood sugar by causing the kidneys to get rid of more glucose in the urine. Dapagliflozin is not used to treat type 1 diabetes (condition in which the body does not produce insulin and, therefore, cannot control the amount of sugar in the blood) or diabetic ketoacidosis (a serious condition that may develop if high blood sugar is not treated).

Over time, people who have diabetes and high blood sugar can develop serious or life-threatening complications, including heart disease, stroke, kidney problems, nerve damage, and eye problems. Taking dapagliflozin, making lifestyle changes (e.g., diet, exercise, quitting smoking), and regularly checking your blood sugar may help to manage your diabetes and improve your health. This therapy may also decrease your chances of having a heart attack, stroke, or other diabetes-related complications such as kidney failure, nerve damage (numb, cold legs or feet; decreased sexual ability in men and women), eye problems, including changes or loss of vision, or gum disease. Your doctor and other healthcare providers will talk to you about the best way to manage your diabetes.”

SGLT2 inhibitors? Hey, that was going to be next week’s blog… or so ignorant me thought. The Food and Drug Administration (FDA) at https://www.fda.gov/drugs/postmarket-drug-safety-information-patients-and-providers/sodium-glucose-cotransporter-2-sglt2-inhibitors explains what a SGLT2 inhibitor is.

“SGLT2 inhibitors are a class of prescription medicines that are FDA-approved for use with diet and exercise to lower blood sugar in adults with type 2 diabetes. Medicines in the SGLT2 inhibitor class include canagliflozin, dapagliflozin, and empagliflozin. They are available as single-ingredient products and also in combination with other diabetes medicines such as metformin. SGLT2 inhibitors lower blood sugar by causing the kidneys to remove sugar from the body through the urine. The safety and efficacy of SGLT2 inhibitors have not been established in patients with type 1 diabetes, and FDA has not approved them for use in these patients.”

There are also quite a few warnings about amputations and urinary tract infections caused by SGLT2 inhibitors on this site, although they are dated 8/20/18.

 

So it seems that dapagliflozin is one of several medications classified as SGLT2 inhibitor. So let’s concentrate on SGLT2s inhibitors then. Hmmm, is this some medication requiring injections or do you just pop a pill? Pharmacy Times at https://www.pharmacytimes.com/publications/health-system-edition/2014/september2014/sglt2-inhibitors-a-new-treatment-option-for-type-2-diabetes more than answered my question. It’s their chart you see above this paragraph.

Wait a minute. According to their chart, dapagliflozin is not recommended if your GFR is below 60, or stage 3 CKD. Canagliflozin is not recommended if your GFR is below 45. Your kidney function is a big factor in whether or not this drug can be prescribed for you.

But why? Exactly how do the kidneys process this drug? The following diagram from The National Center for Biotechnology Information, part of the U.S. National Library, which in turn (again) is part of the National Institutes of Health at https://www.ncbi.nlm.nih.gov/core/lw/2.0/html/tileshop_pmc/tileshop_pmc_inline.html?title=Click%20on%20image%20to%20zoom&p=PMC3&id=3889318_13300_2013_42_Fig1_HTML.jpg will give you the visual. Basically, the SLGT2 inhibitor prevents the glucose in your blood from re-entering your blood stream after your blood has been filtered. The glucose has nowhere to go, so it exits your body via your urine along with the other wastes.

What about the side effects, since we already know the limitations of prescribing SLTG2 inhibitors? I thought  WebMd at  https://www.medicinenet.com/sglt2_inhibitors_type_2_diabetes_drug_class/article.htm#how_do_sglt2_inhibitors_work might enlighten us and they certainly did.

”On Aug. 29, 2018, the FDA issued a warning that cases of a rare but serious infection of the genitals and area around the genitals have been reported with the class of type 2 diabetes medicines called SGLT2 inhibitors. This serious rare infection, called necrotizing fasciitis of the perineum, is also referred to as Fournier’s gangrene.

SGLT2 inhibitors are FDA-approved for use with diet and exercise to lower blood sugar in adults with type 2 diabetes. SGLT2 inhibitors lower blood sugar by causing the kidneys to remove sugar from the body through the urine. First approved in 2013, medicines in the SGLT2 inhibitor class include canagliflozin, dapagliflozin, empagliflozin, and ertugliflozin. In addition, empagliflozin is approved to lower the risk of death from heart attack and stroke in adults with type 2 diabetes and heart disease. Untreated, type 2 diabetes can lead to serious problems, including blindness, nerve and kidney damage, and heart disease.

Seek medical attention immediately if you experience any symptoms of tenderness, redness, or swelling of the genitals or the area from the genitals back to the rectum, and have a fever above 100.4 F or a general feeling of being unwell. These symptoms can worsen quickly, so it is important to seek treatment right away.

On May 15, 2015, the FDA informed the public that SGLT2 inhibitors have been associated with increased risk of ketoacidosis in people with diabetes.

Common side effects

The most common side effect of SGLT2 inhibitors include:

Serious side effects of SGLT2 inhibitors include:

Whoa. It looks like there will have to be some serious discussions with your nephrologist before you agree to taking a SLGT2 inhibitor should he or she suggest it. Make sure you have your list of questions ready and someone to listen carefully and take notes.

Until next week,

Keep living your life!

Needling Me

Years ago, as a young woman in my twenties (Could that really be at least 50 years ago????), I was horrified to discover I needed surgery for bleeding hemorrhoids. It was embarrassing, my younger self thought. It was private, my younger self thought. So my younger self looked for an alternative and discovered acupuncture. Not only would I be spared someone – even though that someone would be a doctor – dealing with private parts of my body, but I would also be spared the insult to the body that surgery can be… and my insurance covered it.

Hmmm, I was fully clothed and the needles didn’t hurt although I had expected the process to be painful. Best? I did get relief from the bleeding hemorrhoids and avoided the surgery.

Remembering that incidence today for some unknown reason, I wondered what – if anything – acupuncture could do for those of us with Chronic Kidney Disease. So, I went searching for information.  But wait, I’m getting ahead of myself – as usual. Let’s go back to talking about what acupuncture is.

Acupuncture is a form of medical treatment that’s been used for hundreds — even thousands — of years. Acupuncture originated in Asian medical practices. That’s why many licensure and oversight boards use the term ‘Oriental Medicine’ to classify acupuncture.

Acupuncture is practiced by tens of thousands of licensed acupuncturists. Expert acupuncturists train for three to four years. The training includes both instruction in the use of needles and instruction in diagnosing conditions. Practitioners have direct supervision from another senior or expert practitioner.

In addition to this training, acupuncturists must undergo testing from a national board of examiners and continue to take instructional courses each year to maintain their license.

The American Medical Association accepts acupuncture as a medical treatment, and some insurance companies may cover the cost of treatment.”

Thank you, Healthline at https://www.healthline.com/health/dry-needling-vs-acupuncture for the above information.

The University of California, San Diego, School of Medicine, Center for Integrative Medicine in the Department of Family Medicine and Public Health at https://medschool.ucsd.edu/som/fmph/research/cim/clinicalcare/Pages/About-Acupuncture.aspx  had a succinct description of the process.

“First, your acupuncturist will ask about your health history. Then, he or she will examine your tongue’s shape, color, and coating, feel your pulse, and possibly perform some additional physical examinations depending on your individual health needs. Using these unique assessment tools, the acupuncturist will be able to recommend a proper treatment plan to address your particular condition. To begin the acupuncture treatment, you lay comfortably on a treatment table while precise acupoints are stimulated on various areas of your body. Most people feel no or minimal discomfort as the fine needles are gently placed. The needles are usually retained between five and 30 minutes. During and after treatments, people report that they feel very relaxed.”

PubMed, part of the US National Library of Medicine, National Institutes of Health at https://www.ncbi.nlm.nih.gov/pubmed/28422526 concluded via a small, fairly recent study:

“Acupuncture at bilateral Hegu, Zusanli, and Taixi for 12 weeks reduced creatinine levels and increased eGFR levels. The study only provided a feasibility method for the treatment of patients with CKD. However, the results of this preliminary study warrant further investigation.”

I think we all need a little help here to understand this conclusion. The three words we are not familiar with are all acupuncture points. The Acupuncture Massage College’s site at https://www.amcollege.edu/blog/commonly-used-acupuncture-points explained in language I could understand.

“Large Intestine Channel: LI4, Hegu
This point is located on the back side of the hand between the thumb and first finger. The primary use of this point is to relieve pain and treat inflammatory and feverish diseases.

Stomach Channel: ST36, Zusanli
This point is located on the front of the leg, just below the knee. It is helpful for digestive disorders. Research shows that using this point results in positive effects in treating anemia, immune deficiency, fatigue, and numerous diseases.

Kidney Channel: KI3, Taixi
This point is located just behind the inner ankle. It is used for disorders in several areas of the body, including sore throat, toothache, deafness, tinnitus, dizziness, asthma, thirst, insomnia, lower back pain and menstrual irregularities.”

Inflammatory? CKD. Anemia? CKD. Immune deficiencies? CKD.  Kidney? CKD. Now we know why acupuncture can help us. There seems to be a split among doctors as to whether it will or not, so you’ll have to be careful to talk to your nephrologist. Some will give you an emphatic, “YES!”  Others will give you a questioning look. And still others will ask you, “Why bother?” Be prepared with your answers. You don’t want to alienate the doctor in charge of your treatment and you want to keep the lines of communication open. Well, at least I do.

 

If you’re excited about the idea of acupuncture, you may be asking yourself how to find a good, safe practitioner. Sure you can look in the phone book, but – just as with any doctor – what would you know about how this particular acupuncturist functions? Before I had CKD, when I was plagued by another medical problem but had already moved to Arizona away from my NYC acupuncturist, I asked my stepdaughter about the acupuncturist she saw. If your nephrologist is onboard, you can ask for a referral. Sometimes, your primary care physician can be a good source here, too.

If you’re not excited about acupuncture, don’t push yourself. My husband tried it once to please me and swore never to do that again because he just didn’t like it. Okay, he has other ways of dealing with his back pain. While I am in favor of acupuncture and plan to incorporate this into my medical team once I’m done with surgery and rehab, I also like peace in the house.

Until next week,

Keep living your life!

It’s Like the Sahara in There

I like my dentist, especially when he tells me something I didn’t know. When I went to see him last time, I told him my chemo experience and how dry my mouth was. I thought they might be related. He patiently gave me the same information as the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/dry-mouth/symptoms-causes/syc-20356048.

“Dry mouth, or xerostomia (zeer-o-STOE-me-uh), refers to a condition in which the salivary glands in your mouth don’t make enough saliva to keep your mouth wet. Dry mouth is often due to the side effect of certain medications or aging issues or as a result of radiation therapy for cancer. Less often, dry mouth may be caused by a condition that directly affects the salivary glands.

Saliva helps prevent tooth decay by neutralizing acids produced by bacteria, limiting bacterial growth and washing away food particles. Saliva also enhances your ability to taste and makes it easier to chew and swallow. In addition, enzymes in saliva aid in digestion.

Decreased saliva and dry mouth can range from being merely a nuisance to something that has a major impact on your general health and the health of your teeth and gums, as well as your appetite and enjoyment of food.

Treatment for dry mouth depends on the cause.”

The joke’s on me. I developed dry mouth before the radiation treatments began. At least my salivary glands weren’t having any issues of their own. It seems we discussed xerostomia at the right time.

Wait a minute. Something is pulling on my memory. Something about Chronic Kidney Disease and dry mouth. Of course, periodontics and CKD. The Journal Of Clinical Periodontology at https://onlinelibrary.wiley.com/action/doSearch?AllField=chronic+kidney+disease&SeriesKey=1600051x had just what I was trying to remember. By the way, this is a fascinating free online library by John Wiley, a publisher I remember well from when I worked as an educator.

“Periodontitis had significant direct effect, and indirect effect through diabetes, on the incidence of CKD. Awareness about systemic morbidities from periodontitis should be emphasized.”

In other words, if you have CKD or diabetes, make certain your dentist knows so he or she can monitor you for the beginning of periodontic problems. Just as with any other medical issue, the sooner you start treatment, the better. I can attest to this since I caught my pancreatic cancer early, which gave me a much better chance of eradicating it from my body.

The treatment for dry mouth seems simple enough, as explained by Healthline (Thank you again for the two awards!) at https://www.healthline.com/symptom/dry-mouth.

“Dry mouth is usually a temporary and treatable condition. In most cases, you can prevent and relieve symptoms of dry mouth by doing one or more of the following:

  • sipping water often
  • sucking on ice cubes
  • avoiding alcohol, caffeine, and tobacco
  • limiting your salt and sugar intake
  • using a humidifier in your bedroom when you sleep
  • taking over-the-counter saliva substitutes
  • chewing sugarless gum or sucking on sugarless hard candy
  • over- the-counter toothpastes, rinses, and mints

If your dry mouth is caused by an underlying health condition, you may require additional treatment. Ask your doctor for more information about your specific condition, treatment options, and long-term outlook.”

The sugarless gum works well for me and, as an added benefit, quelled the nausea from the radiation treatments, too. While I don’t drink or smoke, I will have an occasional half cup of coffee when I can tolerate it. I didn’t know this was something to be avoided. As both a CKD patient and a type 2 diabetic (Thanks, pancreatic cancer.), I was already avoiding salt and sugar. So, without realizing it, I was already helping myself deal with dry mouth. Lucky me.

That got me to thinking. What other problems could dry mouth cause? I went to NHS Inform at https://www.nhsinform.scot/illnesses-and-conditions/mouth/dry-mouth to look for an answer. Indeed, this is a Scottish website, but a mouth is a mouth no matter where it’s located, right?

  • “a burning sensation or soreness in your mouth
  • dry lips
  • bad breath (halitosis)
  • a decreased or altered sense of taste
  • recurrent mouth infections, such as oral thrush
  • tooth decay and gum disease
  • difficulty speaking, eating or swallowing”

On a personal note, I found the halitosis embarrassing and the altered sense of taste frustrating. And here, I’d been blaming the chemo for that. Maybe it was the chemo, although my age could also be the cause of my dry mouth. I do admit that 72 could be considered “aging.” My husband orders the groceries and we now have a pantry full of food I used to love but all taste, well, funny now. Poor guy, he was just trying to get me to eat when he ordered the food. He knew calorie intake is important when you’re dealing with cancer.

I wondered what the symptoms of dry mouth were… well, other than a dry mouth, that is.

“Common symptoms include:

  • A sticky, dry feeling in the mouth
  • Frequent thirst
  • Sores in the mouth; sores or split skin at the corners of the mouth; cracked lips
  • A dry feeling in the throat
  • A burning or tingling sensation in the mouth and especially on the tongue
  • A dry, red, raw tongue
  • Problems speaking or trouble tasting, chewing, and swallowing
  • Hoarseness, dry nasal passages, sore throat
  • Bad breath

Thank you to WebMD at https://www.webmd.com/oral-health/guide/dental-health-dry-mouth#1 for the above information.

Will you look at that! Just as diabetes can cause CKD and CKD can cause diabetes, bad breath (halitosis), soreness or burning sensation in the mouth can both be symptoms of dry mouth and problems caused by dry mouth.

Let’s see now. What else can I tell you about dry mouth? DentistryIQ at https://www.dentistryiq.com/clinical/oral-cancer/article/16356305/facts-about-dry-mouth is a new site for me. They describe themselves as “… a leading source of information that helps dental professionals achieve excellence in their positions, whether that position is dentist, dental practice owner, dental hygienist, dental office manager, dental assistant, or dental school student.” I went there to find out just how many people suffer from dry mouth.

“It is estimated to affect millions of people in the United States, particularly women and the elderly…. Current research indicates that approximately one in four adults suffer from dry mouth, and this figure increases to 40 percent in populations over the age of 55….”

This was back in 2006, and unfortunately are the most current figures I could find. Please let us know if you can find more current numbers.

Personal note: Tomorrow I will be having surgery to remove the pancreatic cancerous tumor I’ve been dealing with since last February. The blogs will be posted right on time, but comments, emails, etc. probably won’t be answered for a while. I’ve been told this is an arduous surgery with a long, slow recovery period. Keep well until we can communicate again.

Until next week,

Keep living your life!

re·​ha·​bil·​i·​ta·​tion 

What! As if staying in the hospital for six to thirteen days weren’t enough, it turned out that I would be in a rehabilitation center for an additional six to eight weeks. Again, while this was for pancreatic cancer, many Chronic Kidney Disease patients who have had surgery may require a stay in such places, too. I look for new experiences, but not this kind.

human-438430Let’s go to my favorite dictionary, the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/rehabilitation for the definition of the word.

“: to bring (someone or something) back to a normal, healthy condition after an illness, injury, drug problem, etc.

b: to teach (a criminal in prison) to live a normal and productive life

c: to bring (someone or something) back to a good condition”

I hope it’s clear that it’s the first definition we’re dealing with today.

Forgive me for being dense, but I still didn’t get how that’s going to be done. So I searched for help and MedlinePlus, which is part of the U.S. National Library of Congress which, in turn, is part of the National Health Institutes, at https://medlineplus.gov/rehabilitation.html did just that.

What happens in a rehabilitation program?a.d.

When you get rehabilitation, you often have a team of different health care providers helping you. They will work with you to figure out your needs, goals, and treatment plan. The types of treatments that may be in a treatment plan include

  • Assistive devices, which are tools, equipment, and products that help people with disabilities move and function
  • Cognitive rehabilitation therapy to help you relearn or improve skills such as thinking, learning, memory, planning, and decision making
  • Mental health counseling
  • Music or art therapy to help you express your feelings, improve your thinking, and develop social connections
  • Nutritional counseling
  • Occupational therapy to help you with your daily activities
  • Physical therapy to help your strength, mobility, and fitness
  • Recreational therapy to improve your emotional well-being through arts and crafts, games, relaxation training, and animal-assisted therapy
  • Speech-language therapy to help with speaking, understanding, reading, writing and swallowing
  • Treatment for pain
  • Vocational rehabilitation to help you build skills for going to school or working at a job

Depending on your needs, you may have rehabilitation in the providers’ offices, a hospital, or an inpatient rehabilitation center. In some cases, a provider may come to your home. If you get care in your home, you will need to have family members or friends who can come and help with your rehabilitation.”

Personally, I won’t need some of these such as cognitive rehabilitation, speech-language therapy, and vocational rehabilitation. Brain and speaking aren’t involved in pancreatic surgery and I’m retired. You may be in the same situation if you have rehabilitation or you may not. It’s a list that’s made unique for each patient. I’ve got to remind you here that I’m not a doctor; this is a lay person giving her opinion.

IMG_1843(Edited)

Hmmm, it seemed pretty clear that each type of surgery requires its own sort of rehabilitation. Now that we know what’s involved, let’s see who would be involved if you required rehabilitation after a surgery. WebMD at https://www.webmd.com/healthy-aging/rehab-after-surgery#1 offered a succinct, easy to understand answer.

Who Works With You

Different experts help with different parts of your rehab. Some people who might be on your team:

Physiatrist. He’s a doctor who specializes in rehab. He tailors a plan to your needs and oversees the program to make sure it’s going well.

Physical therapist. He teaches you exercises to improve your strength and the range you have when you move your arm, leg, or whatever part of your body had the operation.

Occupational therapist. He helps you regain the skills you need for some basic activities in your everyday life. He might teach you how to cook meals, get dressed, shower or take a bath, and use the toilet. He’ll also show you how to use gadgets that can help you care for yourself more easily, such as a dressing stick or elastic shoelaces. Some occupational therapists will visit your home to make sure it’s safe and easy for you to get around.

Dietitian. He’ll help you plan healthy meals. If your doctor has told you to avoid salt, sugar, or certain foods after your surgery, the dietitian can help you find other choices.

Speech therapist. He helps with skills like talking, swallowing, and memory. Speech therapy can be helpful after surgery that affects your brain.

Nurses. They care for you if you’re staying for a few weeks or months in a rehab center. They may also come to your home to help track your recovery and help you with the transition to life back at home.

Psychologist or counselor. It’s natural to feel stressed out or depressed after your surgery. A mental health professional can help you manage your worries and treat any depression.

It can take many months to recover from an operation, but be patient. A lot depends on your overall health and the kind of procedure you had. Work closely with your rehab team and follow their instructions. Your hard work will pay off.”

Looking over the list, I won’t need a speech therapist and neither would you if you have some kind of kidney related surgery. I’m not so sure about a psychologist or counselor, either. I’m sort of thinking that going through chemotherapy and radiation treatments without one, I won’t need one after surgery. Then again, I’ve never had major surgery before and I’ve been told this is major major surgery. However, should I find myself in a position where my medical team and/or I feel I need counseling, I would not hesitate to ask for it… just as I’ve asked for help with the cancer.ot

Rehabilitation offers so much. I had no idea this was available until my surgeon told me about it. Nor did I know that Medicare will pay for it… sort of. This is from Medicare at https://www.medicare.gov/coverage/inpatient-rehabilitation-care.

 

“You pay this for each benefit period:

  • Days 1-60: $1,364 deductible.*
  • Days 61-90: $341 coinsurance each day.
  • Days 91 and beyond: $682 coinsurance per each “lifetime reserve day” after day 90 for each benefit period (up to 60 days over your lifetime).
  • Each day after the lifetime reserve days: all costs.

*You don’t have to pay a deductible for care you get in the inpatient rehabilitation facility if you were already charged a deductible for care you got in a prior hospitalization within the same benefit period. This is because your benefit period starts on day one of your prior hospital stay, and that stay counts towards your deductible.”

Excuse me while I go check my bank account.

Until next week,

Keep living your life!

Adult Toys

In keeping with my promise to myself that August would be answer-readers’-questions month, this week I’ll be writing about the occupational therapy toys a reader asked about. Did you think I meant the other kind of adult toys? Hmmm, maybe it would make sense to know why toys are used in dealing with neuropathy in the first place.

As my occupational therapist explained it, the therapy toys are used to stimulate the nerve endings to bud so that new pathways may be created. I don’t fully understand it, but this is what I wrote in my July 29th blog:

“I have a bag of toys. Each has a different sensory delivery on my hands and feet. For example, there’s a woven metal ring that I run up and down my fingers and toes, then up my arms and legs. I do the same with most of the other toys: a ball with netting over it, another with rubber strings hanging from it. I also have a box of uncooked rice to rub my feet and hands in… and lots of other toys. The idea is to desensitize my hands and feet.”

Ah, but now we know these therapy toys are used for more. Desensitization? Good. Building new pathways for sensations? Better. Yes, I want my hands and feet to stop feeling so tingly all the time, but I also want to be able to feel whatever it is I’m holding or touching. Remember, for me, this was an unexpected side effect of chemotherapy, although it could have just as easily been diabetic peripheral neuropathy. Aha! Now you see why I’ve included this in the blog posts in the first place: Diabetes is the number one cause of Chronic Kidney Disease.

Ready to explore some therapy toys? Well, all rightee. Let’s start with my favorite, the one I call the smoosh ball. Oh, since I bought a bag full of these different therapy toys on Amazon, none were labeled so I made up my own names for them. Hey, I’m a writer. I can get away with that.

This one is soft and rubbery. It’s the “another with rubber strings hanging from it,” mentioned above that I rub on my toes and up my legs, then my fingers and up my arms as I do with most of these therapy toys. It causes the loveliest goose bumps. I’m surprised that Shiloh, our 80 pound dog, doesn’t go after it just for the way it seems to shimmer. I also squeeze the smoosh ball with each hand.

The opposite of the smoosh ball is the steel ring. This one is almost painful if I’m not careful. In addition to using it on my hands, arms, fingers, and toes as I did the smoosh ball, I also use it as a ring on each toe and finger moving it up and down. Notice I’m not mentioning how many repetitions I do for each of the therapy toys. That’s because everyone is different. Your neuropathy may be worse than mine, or – hopefully – not as bad as mine.

The pea pod is the hardest therapy toy for me to use. The idea is to squeeze the pod to cause the peas to pop up one by one. Sounds easy, right? Nope. You need to isolate these fingers you can’t even feel until you get the right ones pressing on the right places to make that little fellow pop out.

The brush is a comforting therapy toy. I wonder if this is why horses like being curried (brushed). It’s a soft, rubber brush which feels almost luxuriant as I rub it up my fingers, arms, toes, and legs. It was also the first therapy toy I was introduced to since the occupational therapist used it during my first treatment.

Then there’s the ball with the netting around it. I do the usual rub the fingers, arms, toes, and legs with it. I also squeeze it like a stress ball. It feels completely different than the smoosh ball and even makes a sort of flatulence sound when I squeeze it. Well, that was unexpected.

I have a small ball that looks like a globe. Maybe that’s because children use these therapy toys, too? All I can figure out to do with this is to squeeze it like a stress ball. I’ll have to remember to ask the occupational therapist if that’s what it’s meant for.

The little beads can defeat me. The idea is to place them in a bowl and then pick them up using your thumb and the different fingers one at a time. At first, I was using my long nails to pick them up. Once I realized what I was doing, I cut my nails. It is surprising to me to realize how weak some of my fingers are as compared to how strong others are.

The mesh has a bead in it. You move it back and forth from one end of the mesh to the other, using each finger plus your thumb individually. Of course, this one feels really good on the toes, legs, fingers, and arms because it’s a soft mesh (but not as soft as the mesh on the net ball).

The snake is a long piece of soft rubber. Before I execute the usual rubbing on the toes, legs, fingers, and arms, I use it the way you use an elastic band for stretching across your chest. It is more flexible than you’d think.

Not part of my bag of tricks – I mean therapy toys – is the foot roller. This is another therapy toy I bought on Amazon after trying one out at an occupational therapy treatment.  Have you ever heard the expression ‘hurts so good?’ That’s what this feels like while you roll it back and forth under your feet. Lest you get me wrong, it does not hurt enough to make you want to stop, just enough to make those tingly feet tingle even more.

I also do stretching exercises for my hands, place my feet in rice, and try to pick up a wash cloth with my toes. It takes a long time to exercise, but I think it’s worth it.

Until next week,

Keep living your life!

Diabetic Neuropathy or Not: I WILL Dance Again

I come from a family of dancers. My parents and their siblings were all light on their feet and danced from the time they were teens right up until just before their deaths. It was a delight to watch them. The tradition continued with me… and my youngest who actually taught blues dancing for several years.

Ah, but then my neuropathy appeared. This was years before the diabetes diagnosis. Hmmm, there’s still a question as to whether or not the diabetes was caused by the pancreatic cancer. After all, the pancreas does produce insulin.

I just reread the above two paragraphs and see so much that needs some basic explanation. Let’s start with those explanations this week. How many of you know what neuropathy is? I didn’t either until I was diagnosed with it. According to my favorite dictionary since college a million years ago, The Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/neuropathy defines neuropathy as:

“damage, disease, or dysfunction of one or more nerves especially of the peripheral nervous system that is typically marked by burning or shooting pain, numbness, tingling, or muscle weakness or atrophy, is often degenerative, and is usually caused by injury, infection, disease, drugs, toxins, or vitamin deficiency “

If you clicked though on ‘peripheral nervous system’ in the dictionary definition, you know it means,

“the part of the nervous system that is outside the central nervous system and comprises the cranial nerves excepting the optic nerve, the spinal nerves, and the autonomic nervous system”

Since the neuropathy was so minor before the pancreatic cancer, I wasn’t even aware of it until my neurologist did some testing. I knew my feet were tingly sometimes, but I thought they had fallen asleep. It did sort of feel like that.

Then, I started chemotherapy in March. The tingling became so bad that I couldn’t feel my feet under me and had to rely on a cane to keep my balance. We thought it was the chemo drugs causing the neuropathy. Uh-oh, that was just about when my hands became affected, too, and my A1C (Remember that one? It’s the blood test for the average of your blood glucose over a three month period.) rose all the way to 7.1.

Healthline at https://www.healthline.com/health/type-2-diabetes/ac1-test#understanding-the-results tells us,

“Someone without diabetes will have about 5 percent of their hemoglobin glycated [Gail here: that means glucose bonded to hemoglobin]. A normal A1C level is 5.6 percent or below, according to the National Institute of Diabetes and Digestive and Kidney Diseases.

A level of 5.7 to 6.4 percent indicates prediabetes. People with diabetes have an A1C level of 6.5 percent or above.”

Mind you, during chemotherapy I’d been ordered to eat whatever I could. Getting in the calories would cut down on the expected weight loss. In all honesty, I’m the only person I know what gained weight while on chemotherapy.

Now, what is this about the pancreas producing insulin? Might as well get a definition of insulin while we’re at it. MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=3989 offered the simplest explanation:

“A natural hormone made by the pancreas that controls the level of the sugar glucose in the blood. Insulin permits cells to use glucose for energy. Cells cannot utilize glucose without insulin.”

That would explain why my energy is practically nil, but it also seems to indicate that I won’t be able to do anything about it until after the surgery to remove the tumor. Although, when I start radiation next week, I may be able to go back to the diabetic diet. By the way, after following the Chronic Kidney Disease diet for 11 years, none of the new – off the CKD diet – foods I tried are appealing to me.

But I digress. So, what now? I need to dance; it’s part of who I am. My oncologist referred me to Occupational Therapy. Now I have exercises and tactile surfaces to explore that may be helpful. But what about those who are not going through chemotherapy, but do have diabetic neuropathy? Remember diabetes is the number cause of CKD.

Oh, my goodness. It looks like there are as many ways to treat neuropathy as there are different kinds of neuropathy. I hadn’t expected that. EverydayHealth at https://www.everydayhealth.com/neuropathy/guide/treatment/ gives us an idea of just how complicated choosing the proper treatment for your neuropathy can be:

What Are the Main Ways That Neuropathy Is Treated?

Treating neuropathy in general focuses first on identifying and then addressing the underlying condition to help prevent further damage and give nerves the time they need to heal to the extent that they can.

“The treatment for the neuropathy is to reverse whatever it is that is causing the neuropathy,” says Clifford Segil, DO, a neurologist at Providence Saint John’s Health Center in Santa Monica, California. “We try to reverse the insult to the nerves first and then do symptomatic control.”

For people with diabetic neuropathy, the first step physicians take is getting the person’s blood glucose level under control, says Matthew Villani, DPM, a podiatrist at Central Florida Regional Hospital in Sanford, Florida.

This treatment approach aims to remove the “insult” created by the excess sugar to peripheral nerves throughout the body — but especially the extremities, Dr. Segil explains.

Here are some other ways diabetic neuropathy may be treated:

  • Numbness or complete loss of sensation can lead to complications such as ulcers, sores, and limb amputations. It is addressed by monitoring the affected areas — often the feet — for injuries and addressing wounds before they become more serious, as well as prescribing protective footwear and braces.
  • Orthostatic hypotension (a drop in blood pressure upon standing up), which is an autonomic symptom, can be treated with increased sodium intake, a vasopressor such as ProAmatine (midodrine) to constrict blood vessels, a synthetic mineralocorticoid such as fludrocortisone to help maintain the balance of salt in the body, or a cholinesterase inhibitor such as pyridostigmine, which affects neurotransmitters.
  • Gastroparesis, a delayed emptying of the stomach, is another autonomic symptom, which can be treated with medication to control nausea and vomiting, such as Reglan (metoclopramide), Ery-Tab (erythromycin), antiemetics, and antidepressants, as well as pain medication for abdominal discomfort.
  • Motor neuropathy symptoms can include weakness and muscle wasting, particularly in the lower extremities, as well as deformities of the feet and loss of the Achilles’ heel tendon reflex. Treatments can include physical therapy to regain strength, as well as braces and orthotics.

I’ve got to think about this. Any questions? Well, then,

Until next week,

Keep living your life!

Don’t Know Much about FSGS…

Being on chemotherapy is very tiring, so I stay home a lot and delve into anything that catches my eye, like FSGS. I’ve seen the letters before and had sort of a vague idea of what it might be, but what better time to explore it and whatever it may have to do with Chronic Kidney Disease than now?

Let’s start at the beginning. FSGS is the acronym for focal segmental glomerulosclerosis. Anything look familiar? Maybe the ‘glomerul’ part of glomerulosclerosis? I think we need to know the definition of glomerulosclerosis to be able to answer that question. The National Institutes of Health’s U.S. National Library of Congress’s Medline Plus at https://medlineplus.gov/ency/article/000478.htm defines it this way:

“Focal segmental glomerulosclerosis is scar tissue in the filtering unit of the kidney. This structure is called the glomerulus. The glomeruli serve as filters that help the body get rid of harmful substances. Each kidney has thousands of glomeruli.

‘Focal’ means that some of the glomeruli become scarred. Others remain normal. ‘Segmental’ means that only part of an individual glomerulus is damaged.”

So, we do know what the ‘glomerul’ part of glomerulosclerosis means. It refers to the same filters in the kidneys we’ve been discussing for the past eleven years: the glomeruli. This former English teacher can assure you that ‘o’ is simply a connective between the two parts of the word. ‘Sclerosis’ is a term you may have heard of in relation to the disease of the same name, the one in which the following occurs (according to Encarta Dictionary):

“the hardening and thickening of body tissue as a result of unwarranted growth, degeneration of nerve fibers, or deposition of minerals, especially calcium.”

Wait a minute. When I first started writing about CKD, I approached NephCure Foundation… not being certain what it was, but seeing Neph in its name. They were kind enough to ask me to guest blog for them on 8/21/11. By the way, as of August 15, 2014, NephCure Foundation became NephCure Kidney International. That makes the connection to our kidneys much more clear.

Back to FSGS. The NephCure Kidney International website at https://nephcure.org/ offers us this information:

“How is FSGS Diagnosed?

FSGS is diagnosed with renal biopsy (when doctors examine a tiny portion of the kidney tissue), however, because only some sections of the glomeruli are affected, the biopsy can sometimes be inconclusive.

What are the Symptoms of FSGS?

Many people with FSGS have no symptoms at all.  When symptoms are present the most common include:

Proteinuria – Large amounts of protein ‘spilling’ into the urine

Edema – Swelling in parts of the body, most noticeable around the eyes, hands and feet, and abdomen which causes sudden weight gain.

Low Blood Albumin Levels because the kidneys are removing albumin instead of returning it to the blood

High Cholesterol in some cases

High Blood Pressure in some cases and can often be hard to treat

FSGS can also cause abnormal results of creatinine in laboratory tests. Creatinine is measured by taking a blood sample. Everyone has a certain amount of a substance called creatinine floating in his or her blood. This substance is always being produced by healthy muscles and normally the kidneys constantly filter it out and the level of creatinine stays low. But when the filters become damaged, they stop filtering properly and the level of creatinine left in the blood goes up.”

Whoa! Look at all the terms we’ve used again and again in the last eleven years of SlowItDownCKD’s weekly blog: proteinuria, edema, albumin, cholesterol, high blood pressure, and creatinine. This is definitely something that we, as CKD patients, should know about.

Okay. Let’s say you are diagnosed with FSGS. Now what? The National Kidney Organization at https://www.kidney.org/atoz/content/focal was helpful here:

How is FSGS treated?

The type of treatment you get depends on the cause. Everyone is different and your doctor will make a treatment plan that is right for your type of FSGS. Usually, treatments for FSGS include:

  • Corticosteroids (often called “steroids”)
  • Immunosuppressive drugs
  • ACE inhibitors and ARBs
  • Diuretics
  • Diet change

Corticosteroids and immunosuppressive drugs: These medications are used to calm your immune system (your body’s defense system) and stop it from attacking your glomeruli.

ACE inhibitors and ARBs: These are blood pressure medications used to reduce protein loss and control blood pressure.”

Diuretics: These medications help your body get rid of excess fluid and swelling. These can be used to lower your blood pressure too.

Diet changes:  Some diet changes may be needed, such as reducing salt (sodium) and protein in your food choices to lighten the load of wastes on the kidneys.”

I think we need another definition here. Yep, it’s Plasmapheresis. Back to the Encarta Dictionary.

“a process in which blood taken from a patient is treated to extract the cells and corpuscles, which are then added to another fluid and returned to the patient’s body.”

Let’s go back to The NephCure Kidney International website at https://nephcure.org/ for a succinct summary of FSGS Facts.

“More than 5400 patients are diagnosed with FSGS every year, however, this is considered an underestimate because:

  • a limited number of biopsies are performed
  • the number of FSGS cases are rising more than any other cause of Nephrotic Syndrome…

NephCure estimates that there are currently 19,306 people living with ESRD due to FSGS…, in part because it is the most common cause of steroid resistant Nephrotic Syndrome in children,… and it is the second leading cause of kidney failure in children…

NephCure estimates that people of African ancestry are at a five times higher diagnosis rate of FSGS…

About half of FSGS patients who do not respond to steroids go into ESRD each year, requiring dialysis or transplantation…

Approximately 1,000 FSGS patients a year receive kidney transplants… however, within hours to weeks after a kidney transplant, FSGS returns in approximately 30-40% of patients….”

As prevalent and serious as this sounds, please remember that FSGS is a rare kidney disease. Knowing what we now know just may help you keep your eyes open for it.

Until next week,

Keep living your life!

Oh, the Places You’ll Go!

Thank you to Dr. Seuss for lending us the title of today’s blog. Oh, you haven’t heard of him yet? According to Encyclopaedia Britannica at https://www.britannica.com/biography/Dr-Seuss:

“Dr. Seuss, pseudonym of Theodor Seuss Geisel, (born March 2, 1904, Springfield, Massachusetts, U.S.—died September 24, 1991, La Jolla, California), American writer and illustrator of immensely popular children’s books, which were noted for their nonsense words, playful rhymes, and unusual creatures.”

And why begin the blog with the title of his book you ask. Last month, I received an email from booknowmed.com. Now, I’m not endorsing this new company since I’m not on dialysis and so have not made use of their services myself. However, after reading about the difficulties my dialysis readers were having finding a clinic while they traveled, I was intrigued. Could this be another way to lessen the burden of being on dialysis?

This is from that email:

“What is booknowmed.com?

Whether you travel for holidays or for work, with booknowmed.com you can now find dialysis clinics that have availability for your treatment dates and book your treatments on the spot, anywhere in the World. And most importantly, booknowmed.com is FREE for patients.

  • Browse 440+ dialysis centers, in 380 destinations across 5 continents.
  • Find clinics that have availability based on your search criteria.
  • Know the price of treatment, before booking.
  • See ratings and read reviews from previous patients at the clinic.
  • Book your treatments on the spot in safety.
  • No booking fees, no hidden costs.
  • Track the progress of your booking, directly from your account.

Booknowmed.com is supported by the European Union and 60 national Kidney Patient Associations globally.”

Based on this alone, I asked Vassia Efstathiou, the User Experience Manager, if she’d be interested in guest blogging… and she was.  This is what she had to say, with just a bit of editing from me.

“Free booking engine for dialysis treatments? Dream or reality?

Travelling while on dialysis is a challenge on its own. Consider having to research, book and coordinate your dialysis treatments abroad. This process can be particularly stressful for dialysis patients, especially when faced with language barriers, lack of information – like the availability of clinics and cost of treatments- and, of course, safety concerns.

Many dialysis patients know this already but the power of the Internet alone cannot do much in this case. So it is definitely good news to hear that the first booking engine for holiday dialysis is live, and even better news to see that it actually works. Let alone the fact that it is free for patients!

Since its launch, thousands of dialysis patients have used booknowmed.com to book more than 27,000 treatments around the globe.

booknowmed.com allows dialysis patients to browse, find and book their dialysis treatments anywhere in the World. We are talking literally – anywhere.

By visiting booknowmed.com you will be able to browse more than 450 dialysis centers in 380 destinations, across five continents. This includes standard holiday options like Spain, Greece, and Turkey, as well some less ordinary destinations like Bali, Sri Lanka, Miami, Brazil and Argentina. Cuba, Barbados, and Curacao are coming up this month.

Bookings are completely free for patients, meaning there are no booking or other hidden costs. Overall the platform is very user-friendly and the booking process is very simple:

  1. Patients select their treatment dates and desired destination.
  2. They are then presented with a list of the clinics that match their search criteria and – most importantly – have availability for the requested dates.
  3. Booking is completed after a simple registration process, which is there for safety reasons. The process takes three minutes and includes registering the patient’s full name, email, and telephone number.

But let’s examine what differentiates booknowmed.com to the online directories currently available to dialysis patients.

Firstly, we are talking about a booking engine where you can book your treatments on the spot. In contrast to online directories, booknowmed.com allows you to know the availability and price before booking. You can select your exact treatment dates and preferred shift, and complete your booking without picking up the phone or waiting for a reply that takes weeks. Consider that the average booking time on booknowmed.com is six minutes compare to 15 days, the average booking time when you contact the clinic directly or go through a directory service.

Secondly, you have a wide variety of options to choose from, not only in terms of destination but also in terms of the type of the medical facility. booknowmed.com offers the largest network of independent dialysis centers. From global leaders – like Diaverum – to public and private hospitals as well as independent state-of-the-art clinics around the globe.

Thirdly, the simplicity of the booking process itself.

And last, but definitely not least, the great features offered to patients, which promote transparency and allow them to have all the information in hand before booking. These include:

  • Know the price of treatment before booking.
  • Use smart filters to narrow down your research. If you are an EU patient, for example, you can select to be presented with only the clinics that accept the EHIC.
  • See ratings and read reviews written by real patients who have completed treatment at this particular clinic.
  • Track the progress of your booking through your account. All the details of the booking including the exact time frame of the treatment, contact details of the clinic, and even a map with instructions on how to get there can be found in your account.

booknowmed.com was created by professionals with years of expertise in renal healthcare and the goal to serve a true need for patients. It has received the support of the European Union as well as of national kidney patient associations globally.

The company has plans to expand the functionalities of the platform, with the goal to become a 360o platform serving various everyday needs of renal patients, from nutrition and supplements to an online database and the online exchange of medical reports.

booknowmed.com is the living proof that we have entered a new era for dialysis patients, who can now find and book treatments abroad, with no hassle, no risk, and no language barriers.

Gail here, hoping this is exactly what you’ve been looking for to make your travel while on dialysis an easier experience for you.

Until next week,

Keep living your life!

 

CKD and Me

Okay, so I was finally ready to give up World Kidney Day and National Kidney Month. Maybe it’s time to give up the 1in9 chapter contribution, too. Since each contributing author also had their biography accompanying their chapter, I think the best way to do that is to print the biography… although it’s all me, me, me. Indulge me, please.

*****

Ms. Rae-Garwood’s writing started out as a means to an end for a single parent with two children and a need for more income than her career as a NYC teacher afforded. Gail retired from both college teaching and acting – after a bit of soul searching about where her CKD limited energy would be best spent – early in 2013. Since her diagnose, Ms. Rae-Garwood writes most often about Chronic Kidney Disease, although she does write fiction. She has a three time award winning weekly blog (Surprise!) about this topic at https://gailraegarwood.wordpress.com and social media accounts as @SlowItDownCKD.

*****

Hmmm, it seems to me I’ve done a lot more with Chronic Kidney Disease awareness advocacy since I started with this in 2010. Let’s see what else there is. Aha! These are on my website at www.gail-raegarwood.com.

 

Arizona Health & Living  (West Valley)  6/2018

 

MyTherapy Guest Blog    3/8/18

eCareDiary: Coping with Chronic Kidney  Disease  3/06/18

NephJC: One More Patient Voice on CKD Staging and Precision Medicine  12/08/16

 

Center for Science in the Public Interest: Nutrition Action Healthletter   9/16

New York State United Teachers: It’s What We Do   8/9/16

American Kidney Fund: Slowing DownCKD – It Can Be Done   7/14/16

The Edge Podcast  5/19/16

Dear Annie   3/10/14

Renal Diet Headquarters Podcast   2/12/14

 

Accountable Kidney Care Collaborative: Bob’s Blog   1/23/14

Wall Street Journal: Patients Can Do More to Control Chronic Conditions  1/13/14

The Neuropathy Doctor’s News   9/23/13

Series of five Monthly CKD education classes in The Salt River Pima-Maricopa

Indian Community   9/12/13

 

KidneySteps: Gail Rae and SlowItDown  9/11/13

Salt River Pima-Maricopa Indian Community: 4th Annual Men and Women’s Gathering  8/29/13

National Kidney Foundation: Staying Healthy  6/6/13

KidneySteps: Learning Helps with CKD    7/04/12

Life Options Links for Patients and Professionals   5/30/12

It Is Just What It Is    3/9/12

Online with Andrea    03/07/12

 

Working with Chronic Illness  2/17/12

 

Libre Tweet Chat with Gail Rae   1/10/12

Kevinmd.com   1/1/12

Improve Your Kidney Health with Dr. Rich Snyder, DO   11/21/11

Glendale Community College Gaucho Gazette   8/22/11

 

The NephCure Foundation   8/21/11

Authors Show Radio    8/8/11

Renal Support Network: Another 30 Years  1/11/10

Working with Chronic Illness: Are You Aching to Write    1/11/10

I’m going to keep today’s blog very short so you have the time to click though on the hyperlinked podcasts and articles. When I was teaching college, my students thoroughly enjoyed the time to choose what they’d like to hear or read from a prescribed list. I hope it’s the same for you.

Until next week,

Keep living your life!

I’m Finally Ready to Let National Kidney Month Go

As you already know, I’ve been posting the chapter I contributed to the book 1in9 as my contribution to National Kidney Month. This will probably be the final post of that chapter, unless I decide to post the biography that goes along with the chapter at a later date.

Most of you are aware that I now have pancreatic cancer and the chemo effects are getting in my way. I’m hoping that I’ll not be feeling them so severely in the near future and will be able to research some new material for you. Right now, that’s just not possible. You may have noticed that my Twitter, Instagram, and Facebook pages no longer contain original posts. That’s due to the same reason.

But let’s complete the book chapter:

When I was diagnosed back in 2008, there weren’t that many reader friendly books on anything having to do with CKD. Since then, more and more books of this type have been published. I’m laughing along with you, but I don’t mean just SlowItDownCKD 2011, SlowItDownCKD 2012 (These two were The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, until I realized how unwieldy both the book and the title were – another learning experience), SlowItDownCKD 2013, SlowItDownCKD 2014 (These two were formerly The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2), SlowItDownCKD 2015, SlowItDownCKD 2016, and SlowItDownCKD 2017. By the way, I’m already working on SlowItDownCKD 2018. Each book contains the blogs for that year.

I include guest blogs or book review blogs to get a taste of the currently available CKD news. For example, 1in9 guest blogged this year. Books such as Dr. Mandip S. Kang’s, The Doctor’s Kidney Diets (which also contains so much non-dietary information that we – as CKD patients – need to know), and Drs. Raymond R. Townsend and Debbie L. Cohen’s 100 Questions & Answers about Kidney Disease and Hypertension.

I miss my New York daughter and she misses me, so we sometimes have coffee together separately. She has a cup of coffee and I do at the same time. It’s not like being together in person, but it’s something. You can find support the same way via Facebook Chronic Kidney Disease Support Groups. Some of these groups are:

Chronic Kidney Disease Awareness

Chronic Kidney Disease in India

CKD (Kidney Failure) Support Group International

Dialysis & Kidney Disease

Friends Sharing Positive Chronic Kidney Disease

I Hate Dialysis

Kidney Disease Diet Ideas and Help

Kidney Disease Ideas and Diets1

Kidney Disease is not a Joke

Kidney Disease, Dialysis, and Transplant

Kidney Warriors Foundation

Kidneys and Vets

Mani Trust

Mark’s Private Kidney Disease Group

P2P

People on Dialysis

Sharing your Kidney Journey

Stage 3 ‘n 4 Kidneybeaners Gathering Place

The Transplant Community Outreach

UK Kidney Support

Women’s Renal Failure

Wrap Up Warm for Kidney Disease

What I hit over and over again in the blogs is that diabetes is the foremost cause of CKD with hypertension as the second most common cause. Simple blood and urine tests can uncover your CKD – if you’re part of the unlucky 96% of those in the early stages of the disease who don’t know they have it.

Each time I research, I’m newly amazed at how much there is to learn about CKD…and how many tools you have at your disposal to help slow it down. Diet is the obvious one. But if you smoke or drink, stop, or at least cut down. If you don’t exercise, start. Adequate, good quality sleep is another tool. Don’t underestimate rest either; you’re not being lazy when you rest, you’re preserving whatever kidney function you have left. I am not particularly a pill person, but if there’s a medication prescribed that will slow down the gradual decline of my kidney function, I’m all for it.

I was surprised to discover that writing my SlowItDownCKD book series, maintaining a blog, Facebook page, Twitter, Instagram, and Pinterest accounts of the same name are not enough for me for me to spread the word about CKD screening and education. I’m determined to change this since I feel so strongly that NO ONE should have this disease and not be aware of it.

That’s why I’ve brought CKD awareness to every community that would have me: coffee shops, Kiwanis Clubs, independent bookstores, senior citizen centers, guest blogging for the likes of The American Kidney Fund and The National Kidney Foundation, being interviewed by publications like the Wall Street Journal’s Health Matters, The Center for Science in The Public Interest, and The United Federation of Teachers’ New York Teacher, and on podcasts such as The Renal Diet Headquarters, Online with Andrea, The Edge Podcast, Working with Chronic Illness, and Improve Your Kidney Health.

I’ve been very serious about sharing about CKD before it advances to end stage… meaning dialysis. To that end, I gathered a team for the National Kidney Foundation of Arizona Kidney Walk one year. Another year, I organized several meetings at the Salt River Pima-Maricopa Indian Community. Education is vital since so many people are unaware they even have the disease.

You can slow down the progression of the decline of kidney function. I have been spending a lot of time on my health and I’m happy to say it’s been paying off. There are five stages. I’ve stayed at the middle one for over a decade despite having both high blood pressure and diabetes. That’s what this is about. People don’t know about CKD. They get diagnosed. They think they’re going to die. Everybody dies, but it doesn’t have to be of CKD. I am downright passionate about people knowing this.

Thanks for taking the time to finish the chapter. The more people who know about Chronic Kidney Disease, the more people can tell others about it. I’d hate for anyone to be part of the 90% of those with CKD who don’t know they have it.

Until next week,

Keep living your life!

National Kidney Month Extended

The chapter I contributed to 1in9 goes on beyond National Kidney Month, so since I think every day should be World Kidney Day, I decided to just keep printing it until it was finished. Gotcha! Bet you thought I was going to write every month should be National Kidney Month. Although, that’s not a bad idea either. So, for those of you just tuning in, this is actually part three of that chapter. You can just scroll back on the blog to read the first two parts. Ready? Let’s go.

*****

I realized I needed to rest, too. Instead of giving a lecture, running to an audition, and coming home to meet a deadline, I slowly started easing off until I didn’t feel like I was running on empty all the time. The result was that I ended up graciously retiring from both acting and teaching at a local college, which gave me more time to work on my CKD awareness advocacy.

But, I had to be oh-so-vigilant with other medical practitioners. One summer I had four different infections and had to quickly research the medications prescribed in the emergency room. One hospital insisted I could take sulfa drugs because I was only stage 2 at the time. My nephrologist disagreed. They also prescribed a pain killer with acetaminophen in it, another no-no for us.  I didn’t return to them when I developed the other infections.

My experience demonstrates that you can slow down CKD. I was diagnosed at stage 3 and I am still there, over a decade later. It takes knowledge, commitment and discipline—but it can be done, and it’s worth the effort. I’m sneaking up on 72 now and know this is where I want to spend my energy for the rest of my life: chronic kidney disease awareness advocacy. I think it’s just that important.

At the time of my diagnosis, I was a college instructor. My favorite course to teach was Research Writing. I was also a writer with an Academic Certificate in Creative Non-Fiction and a bunch of publications under my belt. It occurred to me that I couldn’t be the only one who had no clue what this new-to-me disease was and how to handle living with it. I knew how to research and I knew how to write, so why not share what I learned?

I wasn’t sure of what had to be done to share or how to do it. I learned by trial and error. People were so kind in teaching me, pointing out what might work better, even suggesting others that might be interested in what I was doing. I love people. I’d written quite a few how to(s), study guides, articles, and literary guides so the writing was not new to me. I asked for suggestions as to what to do with my writing and that’s when I learned about unscrupulous, price gouging vanity publishers. I’m still paying for the unwitting mistakes I made, but they were learning experiences.

My less-than-stellar experience with being diagnosed and the first nephrologist are what prompted me to write What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. Why, I wondered, should any new CKD patient be as terrified as I was? Of course, I constantly remind my readers that I’m not a doctor and they need to consult their nephrologists or renal dietitians before making any changes to their regiment.

I didn’t feel… well, done with sharing or researching once I finished the book so I began writing a weekly blog: SlowItDownCKD. Well, that and because a nephrologist in India told me he wanted his newly diagnosed patients to read my book, but most of them couldn’t afford the bus fare to the clinic, much less a book. I published each chapter as a blog post. The nephrologist translated my posts, printed them and distributed them to his patients—who took the printed copies back to their communities. It would work!

But first I had to teach myself how to blog. I made some boo-boos and lost a bunch of blogs until I got it figured out. So why do I keep blogging? There always seems to be more to share about CKD. Each week, I wonder what I’ll write… and the ideas keep coming. I now have readers in something like 106 different countries who ask me questions I hadn’t even thought of. I research for them and respond with a blog post, reminding them to speak with their nephrologists and/or renal nutritionists before taking any action… and that I’m not a doctor. The blog has won several awards. Basically, that’s because I write in a reader friendly manner. After all, what good is all my researching if no one understands what I’m writing?

Non-tech savvy readers asked if I could print the blogs; hence, the birth of the SlowItDownCKD series of books. Some people think SlowItDownCKD is a business; it’s not. Some think it’s a profit maker; it’s not. So, what is it you ask? It’s a vehicle for spreading awareness of Chronic Kidney Disease and whatever goes along with the disease. Why do I do it? Because I had no idea what it was, nor how I might have prevented the disease, nor how to deal with it effectively once I was diagnosed. I couldn’t stand the thought of others being in the same position.

One of my daughters taught me about social media. What???? You could post whatever you wanted to? And Facebook wasn’t the only way to reach the public at large? Hello, LinkedIn. A friend who is a professional photographer asked me why I wasn’t using my fun photography habit to promote awareness. What??? You could do that? Enter Instagram. My step-daughters love Pinterest. That got me to thinking and suddenly SlowItDownCKD had a Pinterest account. Then someone I met at a conference casually mentioned she offers Twitter workshops. What kind of workshops? She showed me how to use Twitter to raise CKD awareness.

*****

There’s more and you’ll get to read it next week. I hope you’re enjoying your look into how I entered the world of Chronic Kidney Disease Awareness Advocacy.

Until next week,

Keep living your life!

To Continue…

National Kidney Month is just flying by. This is actually the last week and I doubt I’ll be able to post the rest of the 1in9 chapter before next month. But then again, it’s always Kidney Month for those of us with Chronic Kidney Disease. By the way, thank you to the reader who made it a point of telling me she can’t wait to read the rest of the chapter. Sooooo, let’s get started!

***

Nephrologist switch. The new one was much better for me. He explained again and again until I understood and he put up with a lot of verbal abuse when this panicky new patient wasn’t getting answers as quickly as she wanted them. Luckily for me, he graciously accepted my apology.

After talking to the nephrologist, I began to realize just how serious this disease was and started to wonder why my previous nurse practitioner had not caught this. When I asked her why, she responded, “It was inconclusive testing.” Sure it was. Because she never ordered the GFR tested; that had been incidental! I feel there’s no sense crying over spilled milk (or destroyed nephrons, in this case), but I wonder how much more of my kidney function I could have preserved if I’d known about my CKD earlier.

According to the Mayo Clinic, there are 13 early signs of chronic kidney disease. I never experienced any of them, not even one. While I did have high blood pressure, it wasn’t uncontrollable which is one of the early signs. Many, like me, never experienced any noticeable symptoms. Unfortunately, many, like me, may have had high blood pressure (hypertension) for years before CKD was diagnosed. Yet, high blood pressure and diabetes are the two leading causes of CKD. I find it confusing that uncontrollable high blood pressure may be an early sign of CKD, but hypertension itself is the second leading cause of CKD.

Here’s the part about my researching. I was so mystified about what was happening and why it was happening that I began an extensive course of research. My nephrologists did explain what everything meant (I think), but I was still too shocked to understand what they were saying. I researched diagnoses, descriptions of tests, test results, doctors’ reports, you name it. Slowly, it began to make sense, but that understanding only led to more questions and more research.

You’ve probably already guessed that my world changed during that first appointment. I began to excuse myself for rest periods each day when I went back East for a slew of family affairs right after. I counted food groups and calories at these celebrations that summer. And I used all the errand running associated with them as an excuse to speed walk wherever I went and back so I could fit in my exercise. Ah, but that was just the beginning.

My high blood pressure had been controlled for 20 years at that time, but what about my diet? I had no clue there was such a thing as a kidney diet until the nutritionist explained it to me. I’m a miller’s granddaughter and ate anything – and I do mean anything – with grain in it: breads, muffins, cakes, croissants, all of it. I also liked lots of chicken and fish… not the five ounces per day I’m limited to now.

The nutritionist explained to me how hard protein is on the kidneys… as is phosphorous… and potassium… and, of course, sodium. Out went my daily banana—too high in potassium. Out went restaurant burgers—larger than my daily allowance of protein. Chinese food? Pizza? Too high in sodium. I embraced an entirely new way of eating because it was one of the keys to keeping my kidneys functioning in stage 3.

I was in a new food world. I’d already known about restricting sodium because I had high blood pressure, but these other things? I had to keep a list of which foods contain them, how much was in each of these foods, and a running list of how much of each I had during the day so I knew when I reached my limit for that day.

Another critical piece of slowing down CKD is medication. I was already taking meds to lower my blood pressure when I was first diagnosed with CKD. Two more prescriptions have been added to this in the last decade: a diuretic that lowers my body’s absorption of salt to help prevent fluid from building up in my body (edema), and a drug that widens the blood vessels by relaxing them. I take another drug for my brand new diabetes. (Bye-bye, sugars and most carbs.) The funny thing is now my favorite food is salad with extra virgin olive oil and balsamic vinegar. I never thought that would happen: I was a chocoholic!

Exercise, something I loved until my arthritis got in the way, was also important. I was a dancer. Wasn’t that enough? Uh-uh, I had to learn about cardio and strength training exercise, too. It was no longer acceptable to be pleasantly plumb. My kidneys didn’t need the extra work. Hello to weights, walking, and a stationary bike. I think I took sleep for granted before CKD, too, and I now make it a point to get a good night’s sleep. A sleep apnea device improved my sleep—and my kidney function rose.

I realized I needed to rest, too. Instead of giving a lecture, running to an audition, and coming home to meet a deadline, I slowly started easing off until I didn’t feel like I was running on empty all the time. The result was that I ended up graciously retiring from both acting and teaching at a local college, which gave me more time to work on my CKD awareness advocacy.

***

There’s so much more to tell you about my personal CKD journey… and you’ll read more of it next week. Although, I should remind you that the entire book is available in print and digital on both Amazon.com and B&N.com, just as the entire SlowItDownCKD series of books is.

Until next week,
Keep living your life!

From a Book…

I was trying to figure out a new angle from which to write about Chronic Kidney Disease during National Kidney Month and decided that my chapter in the newly released 1in9 just might be the way.

By the way, I really don’t like shopping, but did so for a ‘fancy blouse’ for the fancy book launch. The day of the launch turned out to be the day I unexpectedly had anesthesia and I ended up not being able to go. From the pictures I’ve seen of the event, it was a fun event. Now I need another fun event to wear that ‘fancy blouse’ to.  After all, we can’t let a dreaded shopping trip go to waste, can we?

Without further ado, I present the first part of my 1in9 chapter:

My name is Gail Rae-Garwood. I like to think of myself as an average older woman with two adult daughters, a fairly recent husband, and a very protective dog. But I’m not. What makes me a little different is that I have Chronic Kidney Disease… just like the estimated 30 million or 15% of the adult population in the United States. Unlike 96% of those in the early stages of the disease, I know my kidneys are not functioning well.

Once upon a time, a long, long time ago, before I’d ever heard the word nephrology, I paid no attention to my kidneys. I had just a vague idea of where they were located because I had big brothers. Every time they watched boxing, one or the other of them would yell, “Oh! Right in the kidneys!” when one guy hit the other on the back, sort of near the waist.  My mother attempted to feed us kidney beans once or twice, but three voices chorusing the 1950’s equivalent of “Uh, gross!” was enough to convince her they weren’t that necessary. My father had a friend who’d moved up in the world and had a kidney shaped pool. Of course, I never had a bird’s eye view of that as a child. So, we were a family pretty much ignorant about kidneys.

When I grew up, I never let my children watch boxing; it was too violent. I never even tried to feed them kidney beans, probably due to some residual abhorrence left over from my own childhood. I had no friends with kidney shaped pools, but I had flown in an airplane and could recognize one if we were flying low. That was the sum total of my kidney education. I didn’t even recall if they were covered in high school biology. My daughters, now grown women, said they were, but I didn’t remember anything about that.

I was blindsided over a decade ago. That’s when I started seeing a new doctor solely because she was both on my insurance plan and so much closer to home than the one I’d been seeing. It seems everything is at least half an hour away in Arizona; her office wasn’t. As a diligent primary care physician, she ordered a whole battery of tests to verify what she found in my files which, by the way, contained a kidney function reading (called the GFR) of 39%. That was something I’d never been told about.

39%. I’d been a high school teacher for 35 years at that point. If a student had scored 39% on a test, we would have talked and talked until we had gotten to the root of the problem that caused such a low score. No one talked to me about my low kidney function until I changed doctors.

“That’s not normal,” said my new doctor as she looked at my blood test results.

I made the supreme effort of tearing my eyes away from the height and weight chart to ask, “What’s not normal?”

“Your GFR,” she told me.  I looked at her blankly. (In retrospect, I can understand how hard it probably was for her not to laugh at my empty eyes and a face without a shred of interest showing on it.) I said nothing. She said nothing.

Finally, I asked, “What’s that?”  She gave me a simple explanation with no indication that I should panic in any way, but of course I did.

“It’s what!  It’s below normal?  My kidneys aren’t functioning to full capacity? Why wasn’t I told? What do I do now? How do I fix the problem? I want them at 100%.”

Her voice rose over mine in a steady, sure manner. “This does not mean there is a problem. It means you must go to a specialist to see if there really is a problem.”

“Oh.” I didn’t believe her, but she not only talked, she had me in a nephrologist’s (kidney and hypertension specialist) office the next day. That’s when I started worrying. Who gets an appointment with a specialist the very next day? I was diagnosed at stage 3; there are only 5 stages. I had to start working to slow down the progression in the decline of my kidney function immediately.

I read just about every book I could find concerning this problem. Surprisingly, very few books dealt with the early or moderate stages of the disease.  Yet these are the stages when CKD patients are most shocked, confused, and maybe even depressed—and the stages at which they have a workable chance of doing something to slow down the progression in the decline of their kidney function.

This first nephrologist might have been reassuring, but I’ll never know. I was terrified; he was patriarchal. All I heard was, “I’ll take care of your kidneys. You just do as I say,” or something to that effect.

Nope, wrong doctor for me. I wanted to know how medication, diet, exercise and other lifestyle changes could help. I didn’t want to be told what to do without an explanation as to why… and when I couldn’t get an explanation that was acceptable to me, I started researching. (More about that later.) You see, I’d already had a terrific Dad who’d known better than to ask me to give up control of myself. I didn’t need a doctor assuming his role… especially in a way I resented.

… to be continued. (This will take several weeks. It is a chapter in book, so it’s longer than my usual 1,000 or so word blog.)

Until next week,

Keep living your life!

A Little Bit of This, A Little Bit of That

A long time reader mentioned she had a kind of kidney disease I wasn’t familiar with, so I decided to find out what I could about it. Are you aware of Uromodulin Kidney Disease?

This is what the U.S. National Library of Medicine at https://ghr.nlm.nih.gov/condition/uromodulin-associated-kidney-disease had to say:

“Uromodulin-associated kidney disease is an inherited condition that affects the kidneys. The signs and symptoms of this condition vary, even among members of the same family.

Many individuals with uromodulin-associated kidney disease develop high blood levels of a waste product called uric acid. Normally, the kidneys remove uric acid from the blood and transfer it to urine. In this condition, the kidneys are unable to remove uric acid from the blood effectively. A buildup of uric acid can cause gout, which is a form of arthritis resulting from uric acid crystals in the joints. The signs and symptoms of gout may appear as early as a person’s teens in uromodulin-associated kidney disease.

Uromodulin-associated kidney disease causes slowly progressive kidney disease, with the signs and symptoms usually beginning during the teenage years. The kidneys become less able to filter fluids and waste products from the body as this condition progresses, resulting in kidney failure. Individuals with uromodulin-associated kidney disease typically require either dialysis to remove wastes from the blood or a kidney transplant between the ages of 30 and 70. Occasionally, affected individuals are found to have small kidneys or kidney cysts (medullary cysts).”

Since this is inherited, I suspect the only way to prevent it is gene editing. I researched gene editing a bit but discovered there is quite a bit of controversy as to the legal and ethical aspects of this procedure right now. However, this doesn’t mean it isn’t possible.

The only other information I could find was far too technical for this lay person to understand, much less explain. Readers, do you have more information?

Something else that was new to me this week: pitaya or dragon fruit. I always buy myself a birthday present and this was mine for this year. By the way, thank you to all the readers who took the time to wish me well on my 72nd yesterday. Back to pitaya.

According to Healthline (Thank you again for the two awards.) at https://www.healthline.com/nutrition/dragon-fruit#what-it-is, pitaya is:

“Dragon fruit is a tropical fruit native to Mexico and Central America. Its taste is like a combination of a kiwi and a pear…. Dragon fruit is a low-calorie fruit that is high in fiber and provides a good amount of several vitamins and minerals…. Dragon fruit contains several antioxidants that protect your cells from damage. These include betalains, hydroxycinnamates, and flavonoids…. Animal studies suggest that dragon fruit may improve insulin resistance, liver fat, and heart health. However, the results of human studies are inconsistent…. To date, there have been two reported cases of a severe allergic reaction to dragon fruit.”

I like that it contains less sugar and calories than other tropical fruits, but I didn’t find the taste appealing. It was bland with just a hint of a woody aftertaste. Was it too ripe? Not ripe enough? Surprisingly, my Utah raised son-in-law loves it and jumped at the chance to finish mine.

I ran into what might have been more new information this past week when the P.A. taking my husband’s blood pressure used a wrist monitor on his right wrist. I was always told an arm cuff monitor was better because the pressure was only taken through one bone, whereas there are two in the wrist. I was also told that the left arm was best because it was closer to the heart. This advice was from my PCP’s nurse and that of my nephrologist. However, this P.A. insisted the wrist monitor measures atomic movement of the blood so it didn’t matter whether a wrist or arm cuff were used, nor which arm was used. It didn’t sound right to me.

This is from SlowItDownCKD 2014 and may be helpful here:

“Well, what about the different kinds of blood pressure monitors? I use a wrist monitor which my PCP is simply not thrilled with.  Her feeling is that I’m taking my pressure through two bones, the radius and the ulna, as opposed to only one bone, the humerus, with an arm device. There’s also the finger monitor, but that could be a problem if you have thin or cold fingers.

There are manual and battery operated versions of these monitors.  If you use an arm monitor, be aware that larger cuffs are available if needed. The one thing most blood pressure sites agree upon is that it’s not a good idea to rely on drugstore monitors for your readings.”

I have been researching for over two hours. I cannot find anything about atomic movement within the blood being measured by a blood pressure monitor of any kind. I’ve been to professional pages, checked studies, and even looked at advertisements. So, unless you have other information, I do believe I’ve been had. I just can’t wait to meet this young man at the follow up appointment in two weeks when I’ll ask him for resources and the monitor manufacturers’ information.

On another note, I’ve written about KDIGO during the last two years. This is from SlowItDownCKD 2017 and was repeated in the Sept. 17th blog in 2018.

“This stands for KIDNEY DISEASE | IMPROVING GLOBAL OUTCOMES. Their homepage at KDIGO.org states:

KDIGO MISSION – Improving the care and outcomes of kidney disease patients worldwide through the development and implementation of global clinical practice guidelines.’”

So why mention it again, you ask? Well, you know how I’m always saying I’m not a doctor and neither are you, but doctors need to know what we, as kidney patients, need to say? KDIGO is now inviting patients – including those with CKD – to join their patient network. What better way to be heard as a kidney patient? I joined and I hope you will, too. The link to join is:

https://sydneypublichealth.au1.qualtrics.com/jfe/form/SV_72LdurS2QicQFKd.

This is the announcement the Dr. Joel Topf (on Twitter as @kidney_boy) brought to my attention:

Until next week,

Keep living your life!

I’ll be Glowing!

Not really, but that was my first thought when a nuclear medicine (NM) test was ordered for me. It required radioactive material to be injected into my veins. The test is called NM Hepatobiliary Scan with Pharmacologic Intervention.

Let’s get a definition of hepatobiliary before we do anything else. Thank you MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=19515 for this one:

“Hepatobiliary: Having to do with the liver plus the gallbladder, bile ducts, or bile. For example, MRI (magnetic resonance imaging) can be applied to the hepatobiliary system. Hepatobiliary makes sense since “hepato-” refers to the liver and “-biliary” refers to the gallbladder, bile ducts, or bile.”

That’s my kind of definition. Clear and easy for those of us who are not doctors to understand. It makes sense, too, since we were exploring what I called discomfort and my PCP called pain just under the lowest rib on my right side… very close to the gall bladder. The more than occasional nausea helped her to decide this test was necessary.

According to the test report, this is how it works:

“TECHNIQUE:

Frontal standing images of the abdomen and pelvis were obtained immediately and 30 minutes following the intravenous administration of Tc99m IDA. Pharmacologic intervention with CCK (or equivalent) and/or morphine with additional dynamic imaging was also performed.”

I didn’t know what Tc99mIDA or CCK was, so I’m guessing you don’t either.  Wikipedia at

https://en.wikipedia.org/wiki/Technetium_(99mTc)_mebrofenin  tells us,

“Technetium (99mTc) mebrofenin is a diagnostic radiopharmaceutical used for imaging of the liver and the gallbladder.”

Hmmm, we could have figured that out from the way the term is used in the context of the technique.

Let’s try CCK. This is also from Wikipedia but this time at https://en.wikipedia.org/wiki/Cholecystokinin.

“Cholecystokinin (CCK or CCK-PZ; from Greek chole, “bile”; cysto, “sac”; kinin, “move”; hence, move the bile-sac (gallbladder)) is a peptide hormone of the gastrointestinal system responsible for stimulating the digestion of fat and protein. Cholecystokinin, officially called pancreozymin, is synthesized and secreted by enteroendocrine cells in the duodenum, the first segment of the small intestine.” 

Well, that’s fairly explanatory, but keep in mind that Wikipedia entries can be edited by anyone.

I know, now you want to know the results. Back to the test report:

“HIDA scan:

Gallbladder clearly visualized. Gallbladder ejection fraction calculated at 37% at 30 minutes. Greater than 35% is normal.

Study Result Impression:

Gallbladder clearly visualized. Borderline abnormal gallbladder response to cholecystokinin challenge.”

Here’s where I got lost. If my gall bladder ejection fraction is normal, how can I have a borderline abnormal gall bladder response to cholecystokinin challenge? Yep, it’s time to make an appointment with my family doctor since she ordered these tests and, being who she is, can probably explain that in terms I can understand.  More on that after next week’s liver MRI and an appointment with her to discuss the findings of both tests.

While this is all interesting, what does it have to do with the kidneys? I went back to SlowItDownCKD 2013 to find out what I’d written about that after my New York daughter’s gall bladder was removed.

“After speaking with my daughter, I still wondered what gallstones have to do with Chronic Kidney Disease.  Searching the web only garnered this one article from January, 2009 … and the study only covered Taiwan. Of course, I found it at the National Institutes of Health at https://www.ncbi.nlm.nih.gov/pubmed/19352299.

‘The prevalence of gallbladder stones in patients with Chronic Kidney Disease is significantly higher than in those without Chronic Kidney Disease. Our findings suggest that increasing age, Chronic Kidney Disease, body mass index > or =27 kg/m {greater than 59 pounds}, metabolic syndrome, and cirrhosis are the related factors for gallbladder stone formation.’

Now think about it another way: you already have a compromised immune system because you have CKD.  Gallstones can cause infection of the gallbladder. As in Nima’s experience, infection causes white blood cell elevation. So you know you have an infection, you might even realize it could be in the bile ducts, too.  But did you check to see if there’s infection in other areas of your body? That would mean you can read your own test results or have the kind of relationship with your doctors – especially your nephrologist – to freely ask questions.

As for what this organ does, this is what MedlinePlus at https://vsearch.nlm.nih.gov/vivisimo/cgi-bin/query-meta?v%3Aproject=medlineplus&v%3Asources=medlineplus-bundle&query=gall+bladder&_ga=2.56082859.126205281.1548540376-1108406265.1544652518 had to say.

‘Your gallbladder is a pear-shaped organ under your liver. It stores bile, a fluid made by your liver to digest fat. As your stomach and intestines digest food, your gallbladder releases bile through a tube called the common bile duct. The duct connects your gallbladder and liver to your small intestine.’

Keep in mind that your liver, the largest organ in your body {The skin is actually the largest organ, but it’s external.} is the other organ that filters your blood.  Since your CKD has been diagnosed, your liver is already working harder. Add losing your gallbladder and you’ve got one very hard working – possibly overworked – liver.”

Needless to say, while I was taking this in stride, especially since my kidney function is the best it’s been in the over a decade since I’ve been diagnosed with CKD, I am now eager to have the liver MRI and get back to my primary care doctor (PCP) so she can explain what a lay person can’t understand from reading the results-  even with further researching.

A few announcements, if you please:

Our friends at @antidote_me are hosting the first of their new free monthly patient focused webinars. This one is about how medical research really works and is this Wednesday, January 30th. It’s a 15 minute webinar.  Register now: https://hubs.ly/H0gc_KV0.

Also, I write the blogs from a U.S. angle since that’s where I live. There is a new Facebook CKD support group which is from the British angle. It’s Chronic Kidney Disease Support Group for UK! Another is CKD Support UK. These are only two of several from across the sea. If you’d like to find the others, go to Facebook and in the search bar on top, enter CKD Support in UK. That little word “in” is what makes it searchable.

Until next week,

Keep living your life!

Double Whammy

Just as the flu was walking out the door, sinusitis walked in. No fair! Although, I must be feeling better because I’m starting to open all the doors and windows again.

I live in Arizona. We don’t have an actual winter, but we do have a flu season with all its accompanying ailments. Having a compromised immune system is not exactly a first choice, but I have Chronic Kidney Disease.

I know I need to slow down with this explanation. Good thinking. First off, what is the immune system? I went to NCBI, The National Center for Biotechnology Information at https://www.ncbi.nlm.nih.gov/books/NBK279364/ for an answer.

“The immune system (from the Latin word immunis, meaning: “free” or “untouched”) protects the body like a guardian from harmful influences from the environment and is essential for survival. It is made up of different organs, cells and proteins and aside from the nervous system, it is the most complex system that the human body has.

As long as our body’s system of defense is running smoothly, we do not notice the immune system. And yet, different groups of cells work together and form alliances against just about any pathogen (germ). But illness can occur if the performance of the immune system is compromised, if the pathogen is especially aggressive, or sometimes also if the body is confronted with a pathogen it has not come into contact before.”

Notice the word “compromised” in the last sentence. According to Dictionary.com at https://www.dictionary.com/browse/compromised, that means

“unable to function optimally, especially with regard to immune response, owing to underlying disease, harmful environmental exposure, or the side effects of a course of treatment.”

So when you have a compromised immune system, you are not receiving the full protection against germs that you could be receiving. Well, how does CKD affect the immune system?

My GFR (the numbers above the arc in the photo to the left and defined later in this blog) is usually between 49% and 59%. That means at any given time I’m missing quite a bit of the function normal kidneys would have. In other words, my kidneys are working more than twice as hard as those of someone without kidney disease. This is a fact that’s easy to forget now that I have the renal diet down pat … until I get sick… and it takes me longer to recuperate… or I slide right into another illness.

Let’s take a look at the jobs performed by the kidneys to see exactly why. This is what I wrote in SlowItDownCKD 2014:

“Your kidneys filter toxins and waste products from your blood.  They also regulate electrolyte levels and blood pressure and produce hormones, among their many jobs.”

Let’s say I eat some bad food. It would take me more than twice as long to recover and I could be more than twice as sick since my kidneys are compromised. Or maybe I actually took one of Bear’s medications instead of my own (which will never happen since they’re kept far, far from mine. This is just an example.) Same thing. I only have less than half the ability to remove a toxin from my body as someone with normal kidney function does. As for germs? You guessed it. My compromised immune system leaves me open to far more than I would be if I didn’t have CKD.

Now for sinusitius. I had that one covered in SlowItDownCKD 2013:

“The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/acute-sinusitis/symptoms-causes/syc-20351671 has this to say about acute sinusitis:

‘Acute sinusitis (acute rhinosinusitis) causes the cavities around your nasal passages (sinuses) to become inflamed and swollen. This interferes with drainage and causes mucus to build up.

With acute sinusitis, it may be difficult to breathe through your nose. The area around your eyes and face may feel swollen, and you may have throbbing facial pain or a headache.’

Before we get any more detailed here, a few reminders are in order {taken from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease’s Glossary}.

Acute – Extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic.

Antibiotic – Medication used to treat infection.

Chronic – Long term, the opposite of acute.

GFR  – Glomerular filtration rate [if there is a lower case “e” before the term, it means estimated glomerular filtration rate] which determines both the stage of kidney disease and how well
the kidneys are functioning.”

Keeping it plain and simple, that just about covers my double whammy of sliding from the flu into sinusitis.

For those interested in KidneyX, this may be for you:

KidneyX: #RedesignDialysis Twitter Chat
The KidneyX: Redesign Dialysis prize challenge has a total prize purse of $2,625,000 and aims to accelerate the development and commercialization of next-generation dialysis products. Now through February 28, 2019, the KidneyX Redesign Dialysis competition will be accepting proposals for solutions or components of solutions that offer patients significant alternatives to dialysis as it is generally practiced today.
Innovators that are interested in applying for KidneyX: Redesign Dialysis are encouraged to participate in Twitter chat on January 24, 2019 from 1:00pm – 2:00pm EST.
Representatives from the U.S. Department of Health and Human Services and American Society of Nephrology will be available during the chat to answer your questions and provide more information about KidneyX, the Redesign Dialysis competition, and innovation in kidney care.. To participate and follow the chat, use the #RedesignDialysis hashtag.

For those of you who are caretakers for people with CKD, this may interest you:

Please join us on Wednesday, January 23 at 1 p.m. ET for an educational webinar titled: Taking Care of Yourself While Taking Care of Your Loved Ones – Coping Strategies for Kidney Patient Caregivers!
As a caregiver for a loved one with kidney disease, it is important to remember to take time for yourself. Hear from social worker Renee Bova-Collis, MSW, LCSW, and caregivers Brenda Vasser-Taylor and Ashley Martin … as they share coping strategies to help you take care of yourself so that you can support your loved ones.

 

Click here to Register!

 

After registering, you will receive a confirmation email with information on how to join the webinar. To call-in without connecting to a computer, use this #:

United States: +1 (562) 247-8422

You will be asked to enter the following Access Code: 399-056-972#

Audio PIN: Shown after joining the webinar

Until next week,

Keep living your life!

Take Good Care of Yourself, Caretakers.

Tonight is New Year’s Eve. We all know what that means: resolutions. While they may be a good idea and we may intend to keep them when we make them, I think we can accept that most of us don’t. So instead of resolutions, I have some recommendations for a special group of people.

I am a Chronic Kidney Disease patient, holding steady at stage 3 for the last decade. While you all know that, I’m not so sure that many of you know that I am also an Alzheimer’s care partner. That’s what the Alzheimer’s Association calls the more commonly used term ‘caretaker.’ I love my husband, but this is hard… harder than I’d expected it to be, even though I’d been a caretaker before.

For those of you not in this position, a caretaker is “one that gives physical or emotional care and support,” according to the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/caretaker.

The Alzheimer’s Association offered me quite a bit of advice about how to preserve my own health while being a care partner. Lori Hartwell’s Renal Support Network does, too. And then there are so many, many other organizations offering advice that always seems to be helpful. Now I offer it as recommendations to you, the care partners of your loved ones.

Why? The Family Caretaker Alliance at https://www.caregiver.org/taking-care-you-self-care-family-caregivers phrases the answer to this question so well:

“On an airplane, an oxygen mask descends in front of you. What do you do? As we all know, the first rule is to put on your own oxygen mask before you assist anyone else. Only when we first help ourselves can we effectively help others. Caring for yourself is one of the most important—and one of the most often forgotten—things you can do as a caregiver. When your needs are taken care of, the person you care for will benefit, too.”

I had trouble with this idea at first, thinking it selfish when it was my husband who needed help – not me. I was wrong. The Mayo Clinic at https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784 explains why:

As a caregiver, you may be so focused on your loved one that you don’t realize that your own health and well-being are suffering. Watch for these signs of caregiver stress:

  • Feeling overwhelmed or constantly worried
  • Feeling tired often
  • Getting too much sleep or not enough sleep
  • Gaining or losing weight
  • Becoming easily irritated or angry
  • Losing interest in activities you used to enjoy
  • Feeling sad
  • Having frequent headaches, bodily pain or other physical problems
  • Abusing alcohol or drugs, including prescription medications

Too much stress, especially over a long time, can harm your health. As a caregiver, you’re more likely to experience symptoms of depression or anxiety. In addition, you may not get enough sleep or physical activity, or eat a balanced diet — which increases your risk of medical problems, such as heart disease and diabetes.

Hmmm, that would explain the irritability and overeating, I suppose. But I had to do something about this or I’d be as large as my little house soon.

Let’s get back to Lori’s site for a minute. Dr. Michael Fisher guest blogged at https://www.rsnhope.org/rsn-blog/6-tips-to-survive-your-partners-kidney-disease-diagnosis/ and offered the following as one bit of advice:

Enlist friends and family to help you, or hire the help you need. Get a neighbor to drive the kids to and from school or enroll them in an after-school program for help with their homework; hire a housekeeper; negotiate flex-time or permission to work from home; and ask family members and friends to volunteer for regular assistance. This is an all-hands-on-deck occasion!”

He’s right. We now have a house cleaning service every other week, bottled water delivery, and a mobile vet. Decades ago when I was a caretaker for a different loved one and was in a pretty poor financial state, my friends and neighbors took my kids to school and after school activities. Family came on the weekends with marketing they’d done for us and to let me run down to the basement to do the laundry. While money makes it easier to have help, it’s not impossible to ask for help without money behind you.

U.S. News Health’s most important tip for caretakers is:

“If you’ve taken on the role of caregiver, the first thing to do is learn as much you can about your loved one’s disease or illness to know what to expectOtherwise, you’ll be driving blind.

Imagine getting in your car, turning on the ignition, closing your eyes and then driving. What do you think will happen? Before long, you’ll crash into something or someone, resulting in damage and even injuries.

The world’s roadways operate smoothly (most of the time) because drivers know what to expect and follow the rules. Likewise, caregivers who learn more about their care recipient’s disease will be more aware of the challenges that lie ahead.”

You can find them at https://health.usnews.com/health-news/patient-advice/articles/2015/05/01/the-2-most-important-caregiver-tips.

I always go for education first; I was a teacher for over 50 years. But sometimes that just isn’t enough. I know, I couldn’t believe it either when I first realized that. So?  I started listening to the advice about how to take care of my emotions while care partnering. VeryWell Mind at https://www.verywellmind.com/caregiver-support-caregivers-and-stress-relief-3144520 offered the best recommendation for me:

“It may be difficult for you to find time alone, especially if you’re the sole provider of care, but don’t forget that you need to give to yourself in order to have the ability to give to others. However, taking an hour or two for journaling in a coffee shop, seeing a movie by yourself, getting exercise with a long walk, or going to a nearby park and immersing yourself in a good book are all excellent, restorative options that can help you to stave off burnout.”

I found I craved silence… or just listening to the birds or the horses that lived behind my house. When I could leave my husband alone and couldn’t get the silence I needed while being at home, I took off to a coffee shop with my Kindle. It helped. Hopefully these recommendations will help the caretakers among you.

Have a happy and safe New Year’s Eve.

Until next year,

Keep living your life!

Happy Holidays!

The holiday season is upon us full strength right now, but you have Chronic Kidney Disease. You don’t need the stress associated with the holiday season. The National Kidney Fund at https://www.kidney.org/atoz/content/Stress_and_your_Kidneys explains why:

“As the blood filtering units of your body, your kidneys are prone to problems with blood circulation and blood vessels. High blood pressure and high blood sugar can place an additional strain or burden on your kidneys. People with high blood pressure and diabetes are at a higher risk for kidney disease. People with kidney disease are at higher risk for heart and blood vessel disease. If you already have heart and blood vessel disease and kidney disease, then the body’s reactions to stress can become more and more dangerous. Therefore, whether your goal is to prevent heart and/or kidney disease, or improve your health while living with heart and/or kidney disease, managing stress is an important part of maintaining your overall health.”

So what’s a CKD patient to do? First, you need to identify that you are stressed. In an article on caretaker stress at https://www.davita.com/education/ckd-life/caregiver/caregiver-stress-and-chronic-kidney-disease, DaVita outlined some of the symptoms. These are the same whether you’re the patient or the caretaker. I happen to be both a CKD patient and my Alzheimer’s husband’s caretaker, although we call me his care partner as suggested by the Alzheimer’s Association.

Physical signals

  • Inability to sleep or sleeping too much
  • Weight gain or loss
  • Feeling tired all the time
  • Change in posture—walking with your head down or with a stooped posture
  • Chronic headaches, neck pain or back pain

Emotional signals

  • Anger
  • Frequent crying spells
  • Inability to think clearly or concentrate
  • Excessive mood swings
  • Feelings of sadness that don’t go away

Behavioral signals

  • Withdrawing from usual activities and relationships
  • Quitting or changing jobs frequently
  • Becoming more impulsive and over-reacting to things
  • Using alcohol or drugs to feel better

Uh-oh, I recognize quite a few of these in myself. How about you?

Today is the last day of the eight day Chanukah celebration for us and all of you who celebrate this holiday. We usually throw a blowout party for anywhere from 30 to 50 people. But just a couple of months ago, we hosted a blowout pre-wedding potluck party for my daughter and her fiancé … and it was wonderful. Yet, it was clear that we can no longer handle undertaking such large parties. I had expressed my doubts last year about how long we’d be able to keep up the Chanukah party.

I was getting more and more stressed dealing with Bear’s medical issues and my own and then the party, so I did what I consider the logical thing to do, I delegated. We’ll still have the party, but a friend of my daughter’s will be hosting it. Instead of assigning different foods to specific guests, we’ve asked them to let us know what they’re be bringing. No prepping of the house (Shiloh sheds an entire other dog every few days) and no post party clean up. More importantly, no stress. I just bring the religious articles necessary and toss in a batch of cranberry chicken as my food contribution. Easy-peasy.

My very capable neighbor came in with cookies she’d just baked the other day. She knows about Bear’s sweet tooth. We started chatting as we’re wont to do and she brought up the point that she finds delegating stressful. Amy wants to make sure whatever it is that’s being delegated is done and done well, so she has to be careful about who she choices. I see her point, but I think that if you know your friends and family and how responsible (or not) each is, this shouldn’t be a problem.

But enough about me. What else can you do to reduce your stress at this time of year?

One thing is make sure you aren’t overeating. Avoiding comfort eating can be a real struggle. According to Baylor College of Medicine’s Dr. Sreedhar Mandayam in an article at https://medicalxpress.com/news/2017-11-overeating-holidays-bad-kidneys.html,

“For people with kidney disease, even eating normal amounts of food puts stress on their kidneys. If you consume large amounts of carbohydrates, protein or fat the stress on an overworked, half functioning kidney will get even worse and can accelerate your kidney dysfunction.”

How about exercising? This is when I get on the exercise bike and watch a good movie. Why? The Mayo Clinic at  https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/exercise-and-stress/art-20044469 explains far better than I could:

Exercise increases your overall health and your sense of well-being, which puts more pep in your step every day. But exercise also has some direct stress-busting benefits.

  • It pumps up your endorphins. Physical activity helps bump up the production of your brain’s feel-good neurotransmitters, called endorphins. Although this function is often referred to as a runner’s high, a rousing game of tennis or a nature hike also can contribute to this same feeling.
  • It’s meditation in motion. After a fast-paced game of racquetball or several laps in the pool, you’ll often find that you’ve forgotten the day’s irritations and concentrated only on your body’s movements.

As you begin to regularly shed your daily tensions through movement and physical activity, you may find that this focus on a single task, and the resulting energy and optimism, can help you remain calm and clear in everything you do.

  • It improves your mood. Regular exercise can increase self-confidence, it can relax you, and it can lower the symptoms associated with mild depression and anxiety. Exercise can also improve your sleep, which is often disrupted by stress, depression and anxiety. All of these exercise benefits can ease your stress levels and give you a sense of command over your body and your life.

 

Of course, you could give yourself permission to curl up with a good book for half an hour or so. You might like Portal in Time or Sort of Dark Places for sheer escapism or any of the SlowItDownCKD series (including What Is It and How Did I Get It? Early Stage Chronic Kidney Disease) for edifying yourself. Oh, the shameless self-promotion here! All are available on Amazon although,personally, if I’m stressed, I want pure escapism.

 

Until next week,

Keep living your life!

Kidney Transplant: Cure or Treatment? 

I’ve already mentioned that there’s an active network of kidney disease awareness advocates… and that we find each other. I met Steve at a think tank last spring. I wasn’t really sure why I’d been invited, but as soon as he and his wife started talking, I knew why they were.

I hesitated to ask Steve to guest blog since, at the time, I was only writing about Chronic Kidney Disease. Since then, readers have asked me to write about all sorts of topics dealing with the kidneys, not just CKD. So I did. Steve and his thoughts on being a transplant fit right in to this new agenda. When I did ask him to guest blog, I received a return response that was one of the most gracious acceptances… and they’ve all been gracious. I’ll turn the blog over to Steve Winfree now.

The other day I was speaking with some friends and one made mention to me how incredibly lucky I was. I received a new kidney from my wife, Heather, just last year and I was feeling as if I were on top of the world. Given that fact, I had to agree with him, but I inquired further to find out what he meant. He responded that it must be such a relief to be cured and to no longer have to worry about kidney issues, dialysis, and the mess that comes with it.

That really got me thinking about what a kidney transplant actually means outside of the wonderful opportunity for a second chance at a more normal life. It also reminded me that there is a knowledge gap between those close to kidney failure and those who are not.

It is essential that, as a kidney transplant recipient, I clarify the difference between a cure and a treatment. Chronic Kidney Disease is a disease that progresses over time. This is due to the fact that CKD is a disease in which your body attacks your kidneys, or is a genetic disorder (PKD), or is a result of a primary disease such as diabetes and/or high blood pressure. The common factor among the types of kidney disease is that an outside source, not the kidney itself, is the reason for the issues.

This is why receiving a new kidney is a treatment and not a cure. A genetic disorder is still active in your body even when the new kidney is placed. Diabetes and high blood pressure can still be prevalent even with a new kidney, thus causing the implanted kidney to be affected in the same way as the old one. It is due to these reasons that a transplant is a treatment and not a cure. My new kidney has allowed my body to filter out the toxins much more easily, freed me from dialysis, and granted me the ability to get around easier since my arthritis was derived from my kidney disease.

The truth is that while this second opportunity at a much better life is an enormous blessing, the reality is that there is a good chance I will need another transplant one day. The reason is that the cause of my initial kidney failure is still within my body and attacking the new kidney. That is in addition to another main reason that a new kidney is not a final cure: organ rejection.

A new kidney is looked at as a foreign object by your body. Our bodies are designed to keep the body in balance and when something out of the ordinary, such as a virus invading, it attacks to bring balance back. The same is applied to a kidney that is transplanted from another source. Your body sees it as a foreign object and attacks it. That is why we must take immunosuppressant drugs to trick our bodies into not realizing there is a foreign organ inside.

With all of this being said about my new transplant being a treatment and not a cure, I want to mention how my life has changed forever. At the age of 33, I feel better right now than I have since I was a young teenager. My entire adult life has been spent in hospitals and doctors’ offices. I am now free to use my time to travel, enjoy life, and be the foster parent that I have always wanted to be.

A big part of receiving a kidney transplant is the medicine that is involved. The medicine you have to take every day is known as an immunosuppressant, or anti-rejection. While this is a medicine that you must take for the rest of your life, there are steps you can take to ensure that you are able to receive the medicine in an affordable manner. Kidney transplant patients qualify for Medicare. Medicare helps take care of a lot of the costs associated with taking these medications, but not all of it. The best advice I can give you in regards to your medications is to educate yourself on Medicare, MediGap, manufacturer coupons, and be in a close relationship with your transplant team’s social worker. It can be overwhelming at times, but I promise you that there are resources out there to help you!

I am extremely lucky in the fact that my wife, Heather, donated her kidney to me. While this is a treatment, it is the most remarkable and life changing treatment I have ever been blessed to receive! While all kidney disease patients would love to be cured, we understand that will never be the case, but that does not mean our lives cannot be just as remarkable and enjoyable with our treatments.

While we all watched our different renal diets during the weekend we were together, I never once saw Steve or Heather bemoan their new regiment with the transplanted kidney. While they talked about the exorbitant cost of the medications, they were accepting. One other thing I noticed about this delightful couple is that they were grateful every minutes of the time we spent together. I’m hoping Steve’s transplant lasts him as long as is medically feasible.

Until next week,

Keep living your life!

Shining a Light on 1in9 

Last week, I began my blog post by mentioning that kidney disease awareness advocates have a habit of finding each other. This time, we had a little help.  I transferred to a new nephrologist because he was so much closer to my house. We spent some time getting to know each other as people new to each other do. Then he told me about another patient of his who is also working on spreading awareness, but via a documentary. Raymond, a transplant recipient that you’ll meet in a moment, and his brother who is also his donor, are both veterans. It made sense to me when his wife and partner on their documentary, Analyn Scott, suggested I post her guest blog about their project today since Veterans’ Day which was yesterday. Readers, meet Analyn; Analyn, meet the readers of the blog.

By now it shouldn’t surprise me that as I’m out and about I’m constantly meeting more and more people with a connection to kidney disease. That was not the case 21 years ago, or even four years ago for that matter. What changed? The opening of my eyes to statistics I was previously unaware of, and frankly I found to be quite shocking and unacceptable. I’ll get to those stats a little later.

21 years ago this month I met my now husband, Raymond Scott, on a blind date. A year out of the Army, here was this 29 year old handsome, kind, Southern gentlemen that swept me off my feet. Little did either of us know that three months later his kidneys would unexpectedly fail and that our journey would lead us to where we are today.

Like many others, although Raymond ‘crashed’ into dialysis, his previous medical records revealed that he had Kidney Disease, but he was not properly made aware of his status or what he could do to improve it. So our journey with Chronic Kidney Disease (CKD) began together with Raymond finding out he had End Stage Renal Disease (ESRD) and needing to start on dialysis right away.

Throughout the past 20, going on 21 years, Raymond has been on both peritoneal dialysis and in-center hemodialysis, had a kidney transplant that lasted for five years, and for the past five years has his hemodialysis treatments administered by me five days a week from the comforts of our home. With that, we’ve also had many twists and turns with Raymond’s health that often go along with ESRD. But, despite our own experiences, it wasn’t until we were invited as guests to attend the National Kidney Foundation’s Dancing With The Stars Arizona 2015 Gala that our eyes would start to be opened to the staggering statistics surrounding Kidney Disease.

As we enjoyed the lively and energetic dance performances I turned to Raymond and teasingly said, “Hey, that could be you dancing next year.” My eyes got big and my giggles stopped, and before I could get the words out of my mouth, Raymond already knew that look on my face very well and anticipated my next words, “Wait, why not you? You can do this!.”

Sure enough, Raymond was the first celebrity star dancer who was an active dialysis patient at the National Kidney Foundation’s 10th Annual Dancing With the Stars Arizona Gala on February 20th, 2016…..18 years to the exact day that his kidneys failed! He and his dance partner and instructor, Brianna Santiago, spent six months of grueling practices preparing for their energetic performance to Pharrell William’s song Happy, demonstrating the improved quality of life home dialysis can provide, and that dialysis does not have to be a death sentence.

As we picked up the torch of advocacy, we were led to start filming a documentary and create a non-profit organization to create hope and change the trajectory of kidney disease. As I was brainstorming with a dear friend about potential names for the organization, she said, “Wait, go back to that statistic you mentioned: 26 Million Americans, 1 in 9 adults have Kidney Disease….that’s it…..1in9.” That and meeting our incredible videographer was how 1in9 was birthed!

You may have guessed it, but 1 in 9 American adults having Kidney Disease was one of those stats that caught us off guard. And hearing that 90% of those with CKD weren’t aware was totally unacceptable to us. Diabetes is the leading cause of Kidney Disease, and high blood pressure….which took Raymond’s kidneys….is second. Kidney disease is the ninth leading cause of death in the U.S. and kills more people than breast cancer or prostate cancer. Surprising, right? It sure was to us, and we figured if this was news to us after all these years of living with it, then the general population must really be in the dark.

Our vision for 1in9 is to save millions of lives globally through awareness, prevention, and expedited research and development of regenerative medicine treatments and solutions. Last year our family headed out across country on an RV tour to raise awareness and film, while keeping up Raymond’s dialysis treatments five days a week on the RV. We met some incredible people near and far that continue to inspire us to keep pushing the wheels of change. Like our friends at…..

University of Arizona http://deptmedicine.arizona.edu/news/2017/1in9-kidney-challenge-founders-visit-ua-nephrology-faculty-researchers

Washington University https://nephrology.wustl.edu/1in9-kidney-awareness-documentary-visits-division-nephrology/

The Veterans’ Administration Medical Center in Washington DC https://www.washingtondc.va.gov/features/Living_Well_with_Kidney_Disease.asp

And our visit to UCSF with Dr. Shuvo Roy, co-Director of The Kidney Project, where we were able to hold the 3D printed bio-artificial kidney prototype in our own hands! Friends, if you haven’t already heard, change is not only on the way, it’s here!

We are still filming our documentary, releasing our 1in9 Compilation Book next March, and excited about other impactful programs we are launching that will help us bring Kidney Disease out of the public shadows of silence and misunderstanding and confront it head on with solutions.

To learn more and link arms to help keep the torch illuminating bright on our life saving mission please visit, follow, and/or contact us at: www.1in9kidneychallenge.com 
www.facebook.com/1in9kidneychallenge/ 1in9kidneychallenge@gmail.com

Analyn and Raymond have asked me to contribute a chapter to their book. I will be delighted to do so. As a Chronic Kidney Disease awareness advocate, I can’t begin to tell you how much pleasure I have at meeting more and more people with the same mission in life. We get to help each other spread awareness.

Until next week,

Keep living your life!

Where Did This All Come From?

Some people think SlowItDownCKD is a business; it’s not. Some think it’s a profit maker; it’s not. So, what is it you ask? It’s a vehicle for spreading awareness of Chronic Kidney Disease and whatever goes along with the disease. Why do I do it? Because I had no idea what it was, nor how I might have prevented the disease, nor how to deal with it effectively once I was diagnosed.

At that time I was a college instructor. My favorite course to teach was Research Writing. I was also a writer with an Academic Certificate in Creative Non-Fiction and a bunch of publications under my belt. It occurred to me that I couldn’t be the only one who had no clue what this new-to-me disease was and how to handle living with it. I knew how to research and I knew how to write, so why not share what I learned?

I wasn’t sure of what had to be done to share or how to do it. I learned by trial and error. People were so kind in teaching me, pointing out what might work better, even suggesting others that might be interested in what I was doing. I love people.

First came the books. I’d written quite a few how to(s), study guides, articles, and literary guides so the writing was not new to me. I asked for suggestions as to what to do with my writing and that’s when I learned about unscrupulous, price gouging vanity publishers. I’m still paying for that mistake with my first book What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, but it was a learning experience.

You already know the blog was born of necessity when an Indian doctor explained to me that he wanted his new patients to read What Is It and How Did I Early It? Early Stage Chronic Kidney Disease, but they couldn’t even afford the bus fare to the clinic. That’s when I got the bright idea of blogging a chapter a week so he could translate and print the blog post, and then the patients that did make it to the clinic could bring the blog back to their villages for others to read.

It would work! But first I had to teach myself how to blog. I made some boo-boos and lost a bunch of blogs until I got it figured out. So why do I keep blogging? There always seems to be more to share about CKD. Each week, I wonder what I’ll write… and the ideas keep coming.

Then my New York daughter, Nima, started teaching me about social media. What???? You could post whatever you wanted to? And Facebook wasn’t the only way to reach the public at large? Hello LinkedIn. A friend who is a professional photographer asked me why I wasn’t using my fun photography habit to promote awareness. What??? You could do that? Hello Instagram. My step-daughters love Pinterest. That got me to thinking…. Then someone I met at a conference casually mentioned she offers Twitter workshops. What kind of workshops? She showed me how to use Twitter to raise CKD awareness.

When I was diagnosed back in 2008, there weren’t that many reader friendly books on anything having to do with CKD. Since then, more and more books on the subject have been published. I’m laughing along with you, but I don’t mean just SlowItDownCKD 2011, SlowItDownCKD 2012 (These two were The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, until I realized how unwieldy both the book and the title were – another learning experience), SlowItDownCKD 2013, SlowItDownCKD 2014 (These two were formerly The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2), SlowItDownCKD 2015, SlowItDownCKD 2016, and SlowItDownCKD 2017. By the way, I’m already working on SlowItDownCKD 2018. Each book contains the blogs for that year. 

Have you read the guest blogs or book review blogs to get a taste of what’s available now? Last week, Suzanne Ruff guest blogged. She wrote The Reluctant Donor, which I just wrote a review for on Amazon. Her guest blog explains what her book is about. Don’t forget Dr. Mandip S. Kang’s book, The Doctor’s Kidney Diets which also contains so much non-dietary information that we as CKD patients need to know. Another very helpful book is Drs. Raymond R. Townsend and Debbie L. Cohen’s 100 Questions & Answers About Kidney Disease and Hypertension. Neuropharmacologist Dr. Walter Hunt wrote Kidney Disease: A Guide for Living. Renal Dietitian Nina Kolbe wrote from her perspective: 10 Step Diet & Lifestyle Plan for Healthier Kidneys. Dr. Mackenzie Walser wrote Coping with Kidney Disease: A 12 – Step Treatment Program to Help You Avoid Dialysis. I also just wrote an Amazon review for Who Lives, Who Dies With Kidney Disease by Drs. Mohammad Akmal and Vasundhara Raghavan.

While I may or may not agree with all or part of the information in these books, they have either been mentioned, reviewed, or guest blogged on SlowItDownCKD because I want you to be aware of whatever help may be available to you.

That, of course, brings us to the Facebook support groups. I miss my New York daughter and she misses me, so we sometimes have coffee together separately. She has a cup of coffee and I do at the same time. It’s not like being together in person, but it’s something. You can find support the same way via Facebook. Since I’m both running out of room and have periodically reviewed these groups, I’m just going to list a few. You can use the search bar at the top of your Facebook page for others.

Kidney Disease, Dialysis, and Transplant

The Transplant Community Outreach

P2P

Kidney Disease Ideas and Diets1

People on Dialysis

Chronic Kidney Disease in India

Friends Sharing Positive Chronic Kidney Disease

Chronic Kidney Disease Awareness

CKD (Kidney Failure) Support Group International

Kidney Warriors Foundation

Kidney Disease is not a Joke

Kidney Disease Diet Ideas and Help

Sharing your Kidney Journey

Mani Trust

Dialysis & Kidney Disease

Kidneys and Vets

Women’s Renal Failure

I Hate Dialysis

Mark’s Private Kidney Disease Group

UK Kidney Support

Wrap Up Warm for Kidney Disease

Stage 3 ‘n 4 Kidneybeaners Gathering Place

 

Until next week,

Keep living your life!

 

 

How Does That Work Again?

I’ve had so many questions lately about how clinical trials work that when Antidote asked me if I’d consider including their infograph in a blog, I jumped at the chance. There’s even more information about clinical trials at https://www.antidote.me/what-are-clinical-trial-phases.

I’ve written about Antidote before… and I’ve written about clinical trials before. It seems more and more people are becoming interested in the process for a multitude of diseases, not only Chronic Kidney Disease.

As a newly diagnosed diabetes patient, I’ve noticed clinical trials for diabetes. A family member has Alzheimer’s; his neurologist keeps an eye out for clinical trials for him. Whatever your disease is, you can search for clinical trials.

While this is not everyone’s cup of tea, it is a chance to help others who may develop the same diseases in the future. Who knows, maybe the new treatment will be FDA approved during your own lifetime and help you with your own disease.

In case you are one of those people who have always wondered just what the FDA is, their website is https://www.fda.gov. That’s right: it’s a government site which is part of the U.S. Health and Human Services. What’s that? You’d like a more precise definition?

No problem. This is from the United States of American Government website at https://www.usa.gov/federal-agencies/food-and-drug-administration and offers basic information about the FDA.

Food and Drug Administration

The Food and Drug Administration (FDA) is responsible for protecting the public health by assuring the safety, efficacy, and security of human and veterinary drugs, biological products, medical devices, our nation’s food supply, cosmetics, and products that emit radiation. The FDA also provides accurate, science-based health information to the public.

                                                                                                                                                      Agency Details

Acronym: FDA

Website: Food and Drug Administration (FDA)

Contact: Contact the Food and Drug Administration

 Report a Problem with a Product

Main Address: 10903 New Hampshire Ave.
Silver Spring, MD 20993

Toll Free: 1-888-INFO-FDA (1-888-463-6332)

Forms: Food and Drug Administration Forms

Government branch: Executive Department Sub-Office/Agency/Bureau

By the way, they are also responsible for both recalls and safety alerts for the treatments they’ve approved.

In the infograph above, you’ll notice, “Sometimes, only healthy volunteers participate.” in Phase 1. Should you decide to apply for a clinical trial, you need to keep this in mind to save yourself a bit of heartache. I firmly believe in paying back for the wonderful things in my life and have applied for several clinical trials for other diseases in an effort to do so. I must have missed the small print because I was rejected for having CKD.

I wanted to help eradicate or ameliorate whatever the disease was. Sometimes it was a disease that was ravaging a loved one. It was just a little bit of a heartbreak not to be able to do so.

As for Phase 2, I went to the blog’s site at gailraegarwood.wordpress.com to use the antidote widget at the bottom of the right side of the page. It’s the turquoise one. You can’t miss it. Face Palm! You can also go directly to www.antidote.me to search for clinical trials.

Why Antidote? It’s simply an easier way to find a clinical trial. This is from SlowItDownCKD 2017:

“Antidote Match™

Matching patients to trials in a completely new way
Antidote Match is the world’s smartest clinical trial matching tool, allowing patients to match to trials just by answering a few questions about their health.

Putting technology to work
We have taken on the massive job of structuring all publicly available clinical trial eligibility criteria so that it is machine-readable and searchable.

This means that for the first time, through a machine-learning algorithm that dynamically selects questions, patients can answer just a few questions to search through thousands of trials within a given therapeutic area in seconds and find one that’s right for them.

Patients receive trial information that is specific to their condition with clear contact information to get in touch with researchers.

Reaching patients where they are
Even the smartest search tool is only as good as the number of people who use it, so we’ve made our search tool available free of charge to patient communities, advocacy groups, and health portals. We’re proud to power clinical trial search on more than a hundred of these sites, reaching millions of patients per month where they are already looking for health information.

Translating scientific jargon
Our platform pulls information on all the trials listed on clinicaltrials.gov and presents it into a simple, patient-friendly design.

You (Gail here: this point is addressed to the ones conducting the clinical trial) then have the option to augment that content through our free tool, Antidote Bridge™, to include the details that are most important to patients – things like number of overnights, compensation, and procedures used. This additional information helps close the information gap between patients and researchers, which ultimately yields greater engagement with patients.

Here’s how Antidote Match works
1. Visit search engine → Patients visit either our website or one of the sites that host our search.
2. Enter condition → They enter the condition in which they’re interested, and begin answering the questions as they appear
3. Answer questions → As more questions are answered, the number of clinical trial matches reduces
4. Get in touch: When they’re ready, patients review their matches and can get in touch with the researchers running each study directly through our tool

Try it from the blog roll. I did. I was going to include my results, but realized they wouldn’t be helpful since my address, age, sex, diseases, and conditions may be different from everyone else’s. One caveat: search for Chronic Renal Insufficiency or Chronic Renal Failure (whichever applies to you) rather than Chronic Kidney Disease.”

Before I sign off, this came in from the American Association of Kidney Patients:

Please join us on Tuesday, October 9, 2018 at 1 p.m. ET for an educational webinar on Making the Perfect Team: Working with Your Dialysis Technician in partnership with National Association of Nephrology Technicians/Technologists (NANT).  Keep in mind that’s tomorrow. Hit this link if you’d like to register https://register.gotowebinar.com/register/7744206034004582403

Until next week,

Keep living your life!

For the Younger Women

You’d think that leaves me out, but you’d be wrong. I’m writing for pre-menopausal women…and for anyone who wants to know what menstrual cycles have to do with Chronic Kidney Disease. I’m one of those who wants to know.

I was already in my sixties when I was diagnosed with CKD, but I have many woman readers who have not yet reached that rite of passage known as menopause. Does their menses have any effect on their CKD, I wondered? Or, conversely, does their CKD have any effect on their menses?

Back to the beginning for those who have just plain forgotten what the menses is and why women experience it. Thank you to the Medical Dictionary at https://medical-dictionary.thefreedictionary.com/menses for starting us off today. Menses is:

“the periodic discharge from the vagina of blood and tissues from a non-pregnant uterus; the culmination of the menstrual cycle. Menstruation occurs every 28 days or so between puberty and menopause, except during pregnancy, and the flow lasts about 5 days, the times varying from woman to woman.”

I clearly remember the days of anxiously awaiting my period only to find I had miscalculated its start. Commence the washing-out-the-underwear-nightly-during-my-period era which lasted decades. It was messy, but apparently menstruation was necessary. Why? you ask.

Back to Wikipedia. By the way, when I was teaching research writing in college, I always found this a good source to start researching from despite the fact that anyone can edit it. This is the explanation I was looking for. I found it at https://en.wikipedia.org/wiki/Menstrual_cycle.

“The menstrual cycle is the regular natural change that occurs in the female reproductive system (specifically the uterus and ovaries) that makes pregnancy possible. The cycle is required for the production of oocytes [Me here: this means an immature egg] and for the preparation of the uterus for pregnancy….”

As someone who had always planned to be a mother, you can see why I felt this was a necessary – albeit messy – function of my body. I have a biological grandchild and another being planned. Thank you, menstruation.

But what if I had developed CKD when I was premenopausal? Would things have been different for me? DaVita at https://www.davita.com/education/kidney-disease/risk-factors/womens-health-risks-and-chronic-kidney-disease-ckd explains some of what I might have had to deal with.

“When a woman has chronic kidney disease her periods tend to be irregular. Once she begins dialysis her periods may even stop altogether. As kidney function drops below 20 percent of normal, a woman is less likely to conceive because dialysis doesn’t perform all of the tasks of the kidneys. The body retains a higher level of waste products than it would with a normal kidney, which can prevent egg production and affect menstruation.

Erythropoietin treatments will cause about 50 percent of woman on dialysis to get their periods again. This is attributed to the improved hormone levels and the treatment of anemia. Therefore, erythropoietin treatments can increase a woman’s fertility, so birth control should be used if a woman is sexually active and does not want to become pregnant.”

Okay, but I’m not on dialysis and my GFR hovers in the 50-55% range. I see from the quote above that my periods might have become irregular. I also noted that a ‘higher level of waste products is being retained.” (Why does that give me the creeps?)

Let’s go back to those waste products. Remember what they are? Shodor, a site for undergraduate students, at https://www.shodor.org/master/biomed/physio/dialysis/kidney.htm was helpful here:

“The kidneys are the filtering devices of blood. The kidneys remove waste products from metabolism such as urea, uric acid, and creatinine by producing and secreting urine. Urine may also contain sulfate and phenol waste and excess sodium, potassium, and chloride ions. The kidneys help maintain homeostasis by regulating the concentration and volume of body fluids. For example, the amount of H+ and HCO3  secreted by the kidneys controls the body’s pH.”

Whoa! I wouldn’t want even more of these substances in my body. Not only would they make the CKD worse, but also its effects on my body. According to Medical News Today at https://www.medicalnewstoday.com/articles/172179.php, these effects include:

  • anemia
  • blood in urine
  • dark urine
  • decreased mental alertness
  • decreased urine output
  • edema – swollen feet, hands, and ankles (face if edema is severe)
  • fatigue (tiredness)
  • hypertension (high blood pressure)
  • insomnia
  • itchy skin, can become persistent
  • loss of appetite
  • male inability to get or maintain an erection (erectile dysfunction)
  • more frequent urination, especially at night
  • muscle cramps
  • muscle twitches
  • nausea
  • pain on the side or mid to lower back
  • panting (shortness of breath)
  • protein in urine
  • sudden change in bodyweight
  • unexplained headaches

Is there anything else I should know?

The Huffington Post at https://www.huffingtonpost.com/leslie-spry-md-facp/women-with-chronic-kidney_b_10163148.html let Dr. Leslie Spry, Spokesman for the National Kidney Foundation, answer this one and I will, too.

“Women with CKD have been shown to commonly experience menstrual irregularities. This can include excessive bleeding, missed periods, and early onset of menopause. In studies of patients with CKD, women enter menopause from 3 to 5 years earlier than patients without CKD. Treatment can be very challenging. Studies of estrogen replacement therapy have shown an increased risk of heart disease and blood clotting disorders. Kidney transplantation will usually correct these abnormalities.”

Now I wonder if I’d had CKD even earlier than when I’d caught it on a lab report a decade ago. Excessive bleeding? Check. Early menopause? Check. Hmmm.

But wait. There’s some good news in here, too.

“’Thus, recurring changes of sex hormone levels, as brought about by the natural menstrual cycle, might be involved in periodic tissue remodeling not only in reproductive organs, but to a certain extent in the kidneys as well,’ she added.

Lechner [Me here: She’s the study author – Dr. Judith Lechner, of the Medical University of Innsbruck in Austria] hypothesizes that estrogen might help to replace damaged cells. During cycle phases of high estrogen exposure, kidney cells might be induced to grow, she explained, ‘while at time points of decreasing estrogen levels damaged or simply older cells might be discarded into the urine.’”

You can read more about this small study published in the Journal of the American Society of Nephrology in Medical Daily at https://www.medicaldaily.com/sex-differences-menstrual-cycle-kidney-failure-384251.

Now I know… and so do you. Younger women, your CKD menstrual future may not be as dismal as you’d thought.

Until next week,

Keep living your life!

Backed Up

Granted this is weird, but I have wondered for quite a while what – if anything – constipation has to do with Chronic Kidney Disease. Maybe my memory is faulty (Hello, brain fog, my old friend), but I don’t remember having this problem before CKD entered my life… or did I?

In my attempt to find out if there is a connection, I hit pay dirt on my first search.

“Chronic kidney disease (CKD) and end-stage renal disease (ESRD) are more likely to develop in individuals with constipation than in those with normal bowel movements, according to a new study published online in the Journal of the American Society of Nephrology.

More severe constipation, defined as using more than one laxative, was associated with increasing risks of CKD and its progression.”

You can read the entire Renal and Urology News article at https://www.renalandurologynews.com/chronic-kidney-disease-ckd/constipation-associated-with-ckd-esrd-risk/article/572659/.

Wait a minute. This is not quite as clear as I’d like it to be. For example, what exactly is constipation? The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/digestive-diseases/constipation was of help here:

“Constipation is a condition in which you may have fewer than three bowel movements a week; stools that are hard, dry, or lumpy; stools that are difficult or painful to pass; or a feeling that not all stool has passed. You usually can take steps to prevent or relieve constipation.”

Well then, what’s severe constipation? A new site for me, HealthCCM at https://health.ccm.net/faq/267-acute-constipation defines severe or acute constipation as,

“Acute constipation is usually defined by a slowing of intestinal transit generating a decrease in bowel movements and the appearance of dehydration. The person will have difficulty defecating or may not be able to at all.”

This sounds downright painful, so let’s go back to my original query about how constipation and CKD relate to each other.

But first I want to share this very clear explanation of how constipation happens from Everyday Health at https://www.everydayhealth.com/constipation/guide/.

“The GI tract, which consists of a series of hollow organs stretching from your mouth to your anus, is responsible for digestion, nutrient absorption, and waste removal.

In your lower GI tract, your large intestine, or bowel — which includes your colon and rectum — absorbs water from your digested food, changing it from a liquid to a solid (stool).

Constipation occurs when digested food spends too much time in your colon.

Your colon absorbs too much water, making your stool hard and dry — and difficult for your rectal muscles to push out of your body.”

Keep in mind that diabetes is the number one cause of CKD as you read this. According to the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/constipation/symptoms-causes/syc-20354253

“Hormones help balance fluids in your body. Diseases and conditions that upset the balance of hormones may lead to constipation, including:

  • Diabetes
  • Overactive parathyroid gland (hyperparathyroidism)
  • Pregnancy
  • Underactive thyroid (hypothyroidism)”

Many of the sites I perused suggested drinking more water to avoid or correct constipation. But we’re CKD patients; our fluid intake (Well, mine, anyway) is restricted. I’m already drinking my maximum of 64 ounces a day. In the words of Laurel and Hardy’s Hardy, “Well, here’s another nice mess you’ve gotten me into!” It’s possible constipation contributed to my developing CKD and drinking more may help, but with CKD you’re limited to how much you can drink.

Another suggestion I ran into on many sites was increase your fruit and vegetable intake. Great, just great. I’m already at my maximum of three different fruits and three different vegetables – each of different serving sizes, mind you – daily.

Wikipedia at https://en.wikipedia.org/wiki/Constipation#Medications has a great deal of information about constipation. Remember though that anyone can edit any Wikipedia article at any time. Be that as it may, this sentence leaped out at me:

“Metabolic and endocrine problems which may lead to constipation include: hypercalcemiahypothyroidismhyperparathyroidismporphyriachronic kidney diseasepan-hypopituitarismdiabetes mellitus, and cystic fibrosis….”

Thank you, MedicineNet for reminding us that iron can cause constipation. How many of us (meaning CKD patients) are on iron tablets due to the anemia that CKD may cause? I realize some patients are even taking injections of synthetic iron to help with red blood production, something the kidneys are charged with and slow down on when they are in decline.

Apparently, another gift of aging can be constipation since your metabolic system slows down. That’s also what makes it so hard to lose weight once you reach a certain weight. I’m getting a lot of information here, but I’m still not clear as to how one may cause the other. Let’s search some more.

I think I just hit something. We already know that diabetes is the number one cause of CKD. Did you remember that high blood pressure is the second most usual cause of CKD? Take a look at this from Health at https://www.health.com/health/gallery/0,,20452199,00.html#inflammatory-bowel-disease-3:

“Constipation can be a side effect of some common drugs used to treat high blood pressure, such as calcium channel blockers and diuretics.

Diuretics, for instance, lower blood pressure by increasing urine output, which flushes water from your system. However, water is needed to keep stools soft and get them out of the body.”

Now we’re getting somewhere.

It gets even better. The American Association of Kidney Patients at https://aakp.org/dialysis/relieving-constipation/ not only offered more clarification, but offered a list of high fiber foods without going over most of our potassium and phosphorous limits. Fiber intake is considered another way to both avoid and help with constipation.

“Adults need 20-35 grams of fiber daily. However, for dialysis patients who have to limit their fluid intake, this may be too much since it is thought increased dietary fiber may require an increased fluid intake. Also, all patients are different so the amount of fiber needed to relieve constipation varies from person to person.

High Fiber Foods

Bran muffin                 ½ muffin

Brown rice (cooked)   ½ cup

Broccoli*                    ½ cup

Peach                          1 medium

Prunes*                       3

Prunes*                       3

Spaghetti (cooked)      ½ cup

Turnips*                      ¾ cup

(Each serving contains about 150mg potassium, 20-90mg phosphorus and 1 – 5.4 grams of fiber.) (*Items contains 2 or more grams of fiber per serving.)”

I’ve got the connection between constipation and CKD now; do you?

Until next week,

Keep living your life!

Not That Kind of Trial

I enjoy reading murder mysteries and thrillers, especially Victorian era ones like the work of Anne Perry.  Sometimes they include –  or even start with – the trial and work their way backwards to the crime. The trial. That got me to thinking about a different kind of trial: clinical trials. How did they begin? What are they? WHY are they?

According to the National Institutes of Health (part of the U.S. Department of Health and Human Services) at https://www.nhlbi.nih.gov/studies/clinicaltrials/:

“Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. These studies also may show which medical approaches work best for certain illnesses or groups of people. Clinical trials produce the best data available for health care decision making.

The purpose of clinical trials is research, so the studies follow strict scientific standards. These standards protect patients and help produce reliable study results.

Clinical trials are one of the final stages of a long and careful research process. The process often begins in a laboratory (lab), where scientists first develop and test new ideas.

If an approach seems promising, the next step may involve animal testing. This shows how the approach affects a living body and whether it’s harmful. However, an approach that works well in the lab or animals doesn’t always work well in people. Thus, research in humans is needed.

For safety purposes, clinical trials start with small groups of patients to find out whether a new approach causes any harm. In later phases of clinical trials, researchers learn more about the new approach’s risks and benefits.

A clinical trial may find that a new strategy, treatment, or device
• improves patient outcomes;
• offers no benefit; or
• causes unexpected harm

All of these results are important because they advance medical knowledge and help improve patient care.”

That seemed to answer my last question, too, since their purpose is safely test new drugs or therapies.

Are these something recent? Something developed since the Federal Drug Administration (FDA) was instituted? No, they are far, far older. This is from Dr. Arun Bhatt’s Evolution of Clinical Research: A History Before and Beyond James Lind, which you can find at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3149409/. I found it fascinating.

“The world’s first clinical trial is recorded in the ‘Book of Daniel’ in The Bible…. This experiment resembling a clinical trial was not conducted by a medical, but by King Nebuchadnezzar a resourceful military leader…. During his rule in Babylon, Nebuchadnezzar ordered his people to eat only meat and drink only wine, a diet he believed would keep them in sound physical condition…. But several young men of royal blood, who preferred to eat vegetables, objected. The king allowed these rebels to follow a diet of legumes and water — but only for 10 days. When Nebuchadnezzar’s experiment ended, the vegetarians appeared better nourished than the meat-eaters, so the king permitted the legume lovers to continue their diet…. This probably was the one of the first times in evolution of human species that an open uncontrolled human experiment guided a decision about public health.”

Well, then, who is this James Lind mentioned in the title of Dr. Bhatt’s paper? I turned to England’s The Museum: Brought to Life at http://broughttolife.sciencemuseum.org.uk/broughttolife/people/jameslind for the answer:

“The Scottish surgeon James Lind was born in Edinburgh and served an apprenticeship at the Edinburgh College of Surgeons. He then worked as a ship’s surgeon until he opened his own practice in Edinburgh in 1748. Lind discovered the use of citrus fruit as a cure for scurvy when he conducted an early clinical trial. While working as a naval surgeon, Lind encountered cases of scurvy, a disease which often struck sailors on long voyages. The cause, a lack of essential vitamins, was unknown at the time. Earlier doctors had suggested that fresh fruit could be used to treat scurvy, but Lind was the first to test the effects of different diets systematically on a group of patients in a clinical trial. In 1754 he began to feed 12 scurvy patients different foods and found that patients eating citrus fruits such as lemons and oranges recovered much faster than those who were given other kinds of food.”

And now? Why are clinical trials important to us as kidney patients? In this year’s May 21st blog (Use the topic dropdown to the right of the blog itself; it’s easier than scrolling through all the blogs.), I wrote about the benefits of All of Us Research Project. The following is from that blog.

“The goal is to advance precision medicine. Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.

Researchers Share Discoveries

Research may help in many ways. It may help find the best ways for people to stay healthy. It may also help create better tests and find the treatments that will work best for different people.”

KidneyX is also involved. On June 24th (Use the topic dropdown again.), I included their principles in the blog.

Principles

  • Patient-Centered Ensure all product development is patient-centered
  • Urgent Create a sense of urgency to meet the needs of people with kidney diseases
  • Achievable Ground in scientifically-driven technology development
  • Catalytic Reduce regulatory and financial risks to catalyze investment in kidney space
  • Collaborative Foster multidisciplinary collaboration including innovators throughout science and technology, the business community, patients, care partners, and other stakeholders
  • Additive Address barriers to innovation public/private sectors do not otherwise
  • Sustainable Invest in a diverse portfolio to balance risk and sustain KidneyX”

Did you notice that first principle: patient-centered? Or the fifth one: collaborative? We are included in that; we’re the patients.

IDEA Lab is one of the U.S. Department of Health and Human Services’ partners. This is how they define themselves:

‘We test and validate solutions to solve challenging problems in the delivery of health and human services.’”

I know, I know. Now you want to know where you can join clinical trials. How about Antidote? You can go to their website at https://antidote.me/match/search/questions/1?utm_campaign=unisearch&utm_source=slowitdownckd_com&utm_medium=ctsearch&utm_content=no_js or use the widget to the bottom right of the blog. If you’d like a bit more information, I wrote about them on Oct. 7th, 2017 (Use the month dropdown if you’d like to read that blog.)

I could go on and on, but I think you get the idea… and I’ve run out of space.

Until next week,

Keep living your life!

Cindy Tells All

On June 11th of this year, I wrote about Polycystic Kidney Disease after having met Cindy Guentert-Baldo at a kidney event. She has a type of kidney disease that I had no clue about until she started explaining it. What she had to say caught my attention, so I asked her if she would be willing to guest blog. I knew she had a family and is both a lettering artist and YouTube creator. That’s a lot of busy, especially if you’re dealing with a chronic illness. Luckily for us, she was able to work a guest blog into her busy schedule.

*****

In some ways, I live the typical middle class American mom life. I have a middle schooler and a high schooler. I work from home, my husband works a 9-5 in an office. The kids go to school, do their homework, go to activities. I have coffee dates with friends and dinner out with family, we go to the movies, we stay home and do yard work. Same routine, same rhythm as so many other families we know.

This picture doesn’t tell the whole story: I have polycystic kidney disease. I am currently in Stage 4, with my eGFR hovering around 25. My kidneys, at last measurement, were 27 and 25 cm in length.

Part of my daily rhythm is taking 10 different medications to control my blood pressure, manage other symptoms of being in Stage 4 of kidney disease and to help with my pain levels. Another part is having to take breaks when my energy flags or my pain levels get high enough to make sitting at a desk impossible. My kids have learned to read my body language so they know when Mom’s having a bad pain day. They’ve also learned to not hug me around my stomach, as my kidneys are so large that a loving hug could send me to bed for a few days.

I’ve burst a cyst making my bed, tying my shoe, twisting at the waist. I currently have a cyst the size of a healthy kidney underneath my left ribs that is a constant reminder that I am sick.

Aside from the physical problems that come with ADPKD (Let me help Cindy out here with a definition from emedicine at https://emedicine.medscape.com/article/244907-overview: “Autosomal dominant polycystic kidney disease (ADPKD) is a multisystemic and progressive disorder characterized by cyst formation and enlargement in the kidney … and other organs (eg, liver, pancreas, spleen). Up to 50% of patients with ADPKD require renal replacement therapy by 60 years of age.”), there is also the emotional baggage I carry.

This disease is genetic – I have multiple family members in different stages. In some ways, I am grateful to have people to talk to who understand without my having to explain. On a recent vacation my sister (who is in Stage 5) and I lay next to each other and just let out our frustrations and difficulties, knowing we had someone listening who understood. Our grandmother is in her 15th year with her transplant – she has impressed upon us how crucial it is to be informed about the disease in general and our health specifically.

I carry a lot of emotional, painful baggage due to this disease. Our father passed away from a brain stem aneurysm at age 40, brought on due to high blood pressure and PKD. My sister and I were diagnosed shortly afterwards. These days, as I approach 40, I live with a certain amount of terror. What if I die and leave my kids the way my dad left me? I’m aware of how unreasonable of a fear that is – my father died because he was unable to get health insurance and, thus, was unable to care for himself as his kidney disease progressed. I have learned from that.

That doesn’t change the deep fear inside me.

I also live with the guilt that I may have passed this disease to one or both of my children. Was I selfish becoming a parent knowing the kids themselves could wind up with PKD? I was healthy when I had them. I had no idea what I would be feeling like as my kidneys grew and began to fail. Make no mistake; I adore my children, and the world is a better place with them in it. But that doesn’t make the guilt go away.

I worry about having access to healthcare. I worry about dialysis with kids still in school. I worry about something happening to me the way it did to my dad. I worry about something happening to my sister the way it did to our dad. I struggle with my body image as my kidneys grow and I look more and more pregnant. I fight with my expectations of what I think my body should be able to do, and what I am actually able to do. I fight against the idea that I am a sick person.

Despite ALL of this, I love my life. I love my family. I love my friends. I live a mundane, repetitive, fantastic, beautiful life of a mom, a wife, a sister, a friend, an artist, a woman.

I am not PKD. I am a person with PKD…

And I am so much more.

*****

I have to admire Cindy for her honesty here. She would be having these feelings whether or not she shared them with us, but the fact that she did may just make it easier for other PKD patients to speak about their own fears.

By the way, The American Kidney Fund’s next webinar, Advocating for a rare disease, is on Thursday, July 26, 2018 from 2:00 – 3:00 p.m. EDT. The speakers will be Angeles Herrera, Holly Bode, You can register at https://register.gotowebinar.com/register/7986767093922676227.

In other news, the SlowItDownCKD book series now includes SlowItDownCKD 2011, 2012, 2013, 2014, 2015, 2016, and 2017, all available from Amazon.com and B & N.com. I had contemplated changing the title of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to SlowItDownCKD 2010 but rejected the idea. I like that title; don’t you? Of course, expect SlowItDownCKD 2018 early next year. These books were written for those of you who have requested the blogs in print form for those family members and friends who are either not computer savvy or don’t have easy access to a computer. It’s my pleasure to comply with that request. Oh, I still have one desk copy each of the retired The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 & 2 if you’ve not received a free book from me before and would like one of them. Just respond with a comment so I know you were the first to ask.

Until next week,

Keep living your life!

No Longer an Actor, Now I’m a Reviewer (Of Sorts)

Last month I received an email from Screen Media asking if I’d like to preview Chicken Soup for the Soul’s One Last Thing. It stars two actors I know about, “…Wendell Pierce (TV’s The Wire) and Jurnee Smollett-Bell (TV’s Underground) and is primarily set in Brooklyn.” Hmmm, two appealing actors AND it was set in Brooklyn. I still wasn’t sure so I emailed back asking if SlowItDownCKD was the intended recipient for this email. Once assured it was, I agreed. Hey, I’m always up for an adventure.

When I saw the movie, I understood. One story line in the movie deals with a kidney dysplasia patient’s need for a donor. That’s all I’ll say about the movie so I don’t ruin the story for you. In other words, you’ll get no spoiler alerts from me.

In addition to crying at the most poignant parts of the movie, my brain was working overtime. Granted the character suffered from a rare kidney disease, but so rare that I’d never heard of it? You can tell what’s coming, can’t you? If I hadn’t heard of it, have my readers? And that’s what I’ll be writing about today.

Okay now, let’s see what this rare kidney disease is. It made sense to me to go to one of the tried and true websites I usually go to for information. This is what The National Institute of Diabetes, Digestive, and Kidney Diseases, a part of the U.S. Department of Health and Human Services, at https://www.niddk.nih.gov/health-information/kidney-disease/children/kidney-dysplasia had to offer:

“Kidney dysplasia is a condition in which the internal structures of one or both of a fetus’ kidneys do not develop normally while in the womb. During normal development, two thin tubes of muscle called ureters grow into the kidneys and branch out to form a network of tiny structures called tubules. The tubules collect urine as the fetus grows in the womb. In kidney dysplasia, the tubules fail to branch out completely. Urine that would normally flow through the tubules has nowhere to go. Urine collects inside the affected kidney and forms fluid-filled sacs called cysts. The cysts replace normal kidney tissue and prevent the kidney from functioning.

Kidney dysplasia can affect one kidney or both kidneys. Babies with severe kidney dysplasia affecting both kidneys generally do not survive birth. Those who do survive may need the following early in life:

  • blood-filtering treatments called dialysis
  • a kidney transplant

Children with dysplasia in only one kidney have normal kidney function if the other kidney is unaffected. Those with mild dysplasia of both kidneys may not need dialysis or a kidney transplant for several years.

Kidney dysplasia is also called renal dysplasia or multicystic dysplastic kidney.”

They also offered some clarifying diagrams.

So now we know what it is, but what causes it? I went to MedicineNet at https://www.medicinenet.com/kidney_dysplasia/article.htm#what_is_kidney_dysplasia for the answer to this question.

“Kidney dysplasia may be caused by the mother’s exposure to certain drugs or by genetic factors. Pregnant women should talk with their health care providers before taking any medicine during their pregnancy. Drugs that may cause kidney dysplasia include prescription medicines, such as drugs to treat seizures and blood pressure medicines called angiotensin-converting enzyme (ACE) inhibitors and angiotensin receptor blockers (ARBs). A mother’s use of illegal drugs-such as cocaine-can also cause kidney dysplasia in her unborn child.

Kidney dysplasia can also have genetic causes. The disorder appears to be an autosomal dominant trait, which means one parent may pass the trait to a child. When kidney dysplasia is discovered in a child, an ultrasound examination may reveal the condition in one of the parents.

Several genetic syndromes that affect other body systems may include kidney dysplasia as one part of the syndrome. A syndrome is a group of symptoms or conditions that may seem unrelated but are thought to have the same cause-usually a genetic cause. A baby with kidney dysplasia might also have problems of the digestive tract, nervous system, heart and blood vessels, muscles and skeleton, or other parts of the urinary tract.

A baby with kidney dysplasia might have other urinary problems that affect the normal kidney. On the left, urine is blocked from draining out of the kidney. On the right, urine flows backward from the bladder into the ureter and kidney, a condition called reflux.

(Me, here: You’ll be able to figure out which was the cause of Jurnee Smollett-Belle’s character once you see the movie.)

Problems of the urinary tract that lead to kidney dysplasia might also affect the normal kidney. For example, one urinary birth defect causes blockage at the point where urine normally drains from the kidney into the ureter. Another birth defect causes urine to flow from the bladder back up the ureter, sometimes all the way to the kidney. This condition is called reflux. Over time, if these problems are not corrected, they can damage the one working kidney and lead to total kidney failure.”

I’m thankful this is a rare disease, but wondered just how rare it was. Back to NIKKD at the same URL as before:

“Scientists estimate that kidney dysplasia affects about one in 4,000 babies…. This estimate may be low because some people with kidney dysplasia are never diagnosed with the condition.”

I’m not a numbers person, but that seems like a lot of babies.

Now, the biggie. What can be done before the need for dialysis or transplant rears its head? I went directly to Urology Care Foundation at http://www.urologyhealth.org/urologic-conditions/kidney-(renal)-dysplasia-and-cystic-disease/printable-version since the kidneys are part of your urologic system.

  • “Treatment may only include symptom management.
  • Monitoring should include blood pressure checks, kidney function tests, and urine testing for protein.
  • Periodic ultrasound can be used to make sure the other kidney continues to grow normally and no other problems develop.
  • Antibiotics may be needed for urinary tract infections.
  • The kidney should be removed only if it causes pain or high blood pressure, or ultrasound is abnormal.”

The AAKP Conference I wrote about last week opened my eyes to how much I don’t know about other kidney diseases and those that might affect CKD. The result is that I’ve asked quite a few people and organizations to guest blog about those areas in which they are experts. Expect to see these guest blogs throughout the summer.

Until next week,

Keep living your life!

Let Your Voice Be Heard

Someone on a Facebook Chronic Kidney Disease Support Group Page asked how we can make others more aware of what CKD patients want. I’ve been tweeting (exchanging remarks on Twitter) with those who could answer this question just recently. How perfect was that?

The first thing the American Society of Nephrology requested is that those of you who are familiar with Twitter, or are willing to become familiar with this social media, join the monthly #AskASN twitter chats. To join Twitter you simply go to Twitter.com and sign yourself up, no special expertise necessary. That pound sign, or as it’s commonly known now – hashtag, before the words signify that this is a person or group with a Twitter account. What comes after the hashtag is your handle, the name you choose for yourself. Mine is – naturally – #SlowItDownCKD. You can search for me on Twitter.

#AskASN is one of the hashtags of the American Society of Nephrology, the ASN which you’ve often seen me quote. Yes, they are respected. Yes, they are doctors. And, yes, they do want to know what we as kidney disease patients want them to know about our lives as their patients. Big hint: their next Twitter Chat will be in late July.

This year’s May 28th blog was about KidneyX, the same topic as June’s Twitter Chat. Here’s a little reminder of what KidneyX stands for:

“Principles

  • Patient-Centered Ensure all product development is patient-centered
  • Urgent Create a sense of urgency to meet the needs of people with kidney diseases
  • Achievable Ground in scientifically-driven technology development
  • Catalytic Reduce regulatory and financial risks to catalyze investment in kidney space
  • Collaborative Foster multidisciplinary collaboration including innovators throughout science and technology, the business community, patients, care partners, and other stakeholders
  • Additive Address barriers to innovation public/private sectors do not otherwise
  • Sustainable Invest in a diverse portfolio to balance risk and sustain KidneyX”

Did you notice that first principle: patient-centered? Or the fifth one: collaborative? We are included in that; we’re the patients.

IDEA Lab is one of the U.S. Department of Health and Human Services’ partners. This is how they define themselves:

“We test and validate solutions to solve challenging problems in the delivery of health and human services.”

And this is what they had to say during the KidneyX Twitter Chat:

HHS IDEA Lab‏Verified account @HHSIDEALabJun 19

Absolutely. Patients are innovators and we need to recognize that #askASN#KidneyX

Patients. They want to hear from us, patients.

Before reproducing a small part of the @AskASN KidneyX Twitter Chat, I want to introduce the players.

Kevin J. Fowler (@gratefull080504) is a patient who has had a preemptive kidney transplant and is highly involved in the patient voice being heard.

Tejas Patel (@GenNextMD) is a nephrologist with a large social media presence who advocates “for halting the progression of ckd so no dialysis or transplant [is necessary].”

James Myers (@kidneystories) is a fairly recent transplant with a strong advocacy for transplant patients.

I’m me; you already know me.

Now, the excerpt:

Thank you @GenNextMD Me too! #AskASNhttps://twitter.com/GenNextMD/status/1009245134964318209 …

Kevin J. Fowler added,

  • Tejas Patel @GenNextMD

Replying to @kidneystories

I am advocating for halting the progression of ckd so no dialysis or transplant #askasn #moonshot

Replying to @gratefull080504@GenNextMD

@GenNextMD That’s what those of us pre-dialysis want, too. The question is how do we do that? As a lay person, I’m at a loss here.

Replying to @Slowitdownckd@gratefull080504

Major undertaking by medical community, organizations (ASN, AAKP, NKF, RPA) and implementation of breakthrough therapies keeping patient central. Engaging all stakeholders will help prioritize what works for patients. Dialogue via formal & social media helps us understand better.

Replying to @GenNextMD@Slowitdownckd@gratefull080504

We recently had patient editorial in @CJASN by @gratefull080504 and interview https://www.kidneynews.org/kidney-news/features/patient-engagement … Lot of work needs to be done

I read the article. I think you should, too. Kevin makes the point that patient voices need to be heard and the nephrologist who was interviewed with him, Dr. Eleanor D. Lederer, agrees.

From reading my blog alone, you’re already familiar with the oft quoted American Society of Nephrology (ASN), American Association of Kidney Patients (AAKP) which was the subject of June 25th blog, and the National Kidney Foundation (NKF), a staple in the blog. But what is the RPA?

Let’s find out. It turns out that this is the Renal Physicians Association. Their website is at https://www.renalmd.org/. If you go there, you’ll notice four different choices. One of them is Advocacy. That’s the one I clicked. Keep in mind that this site is for physicians.

Become An Advocate for Excellence in Nephrology Practice

It is not only your right but also your obligation to let elected officials and policy makers know how you feel about important issues. It is your responsibility to speak out on matters that affect you directly or no one else will. RPA has developed pathways to allow you to do this.

Recognizing that nephrologists and their practice teams have limited time, an easy way to get involved in federal advocacy is by joining the RPA Political Action Committee (PAC) and Nephrology Coverage Advocacy Program (NCAP).

Take Action Nationally!

RPA’s Legislative Action Center (LAC) facilitates the important communication between RPA members and their members of Congress as well as representatives in their state legislatures. The LAC allows RPA members to track the progress of and search for all current legislation being considered by Congress.”

Our doctors are being asked to speak with the government on our behalf. But how will they know what we want or need, you ask. Easy enough: you tell them when you see them. You have regular appointments; that’s when you can talk with them about legislation you feel is necessary.

I never knew how much my opinion is wanted. I never knew how much YOUR opinion is wanted. Now we all know, so how about speaking out, raising your voice, and advocating for yourself. It’s not that scary if you start by just speaking with your doctor.  Although, I’ll be looking for you on ASN’s #askASN Twitter Chat in late July.

Until next week,

Keep living your life!

Sorry Spiderman, That was Webinars not Webshooters

So much has been going on in my world lately that it was hard to choose what to write about today. In addition to my family, there’s the experience of my first American Association of Kidney Patients Conference, PKD, KidneyX and the list goes on. It was hard to choose, that is, until the American Kidney Fund sent me the following information. They explain who they are, what they do, and why they hold their free monthly educational seminars. Good timing here since the next webinar is this Friday. I’ll let them take over for a while and write some more once they’re done.

Oh, wait. First we need to know what a webinar is. My favorite online dictionary, Merriam-Webster, at https://www.merriam-webster.com/dictionary/webinar defines this in the following way:

“a live online educational presentation during which participating viewers can submit questions and comments”

That means it’s real time; you have to be online to participate. Don’t worry if the time doesn’t work for you because AKF has former webinars on their websites. You just won’t be able to ask your own questions, although you will be able to hear the questions others have asked during the webinar and the answers they received. Okay, now we turn this section of the blog over to The American Kidney Fund.

“The American Kidney Fund (AKF) is a non-profit organization dedicated to helping people fight kidney disease and lead healthier lives.  Living with chronic kidney disease (CKD) or kidney failure is incredibly taxing, and can put strain on all elements of a person’s life. And although doctors are available for patients to ask questions about their disease, many kidney patients do not know what they should ask, and are left needing answers even after leaving a doctor’s appointment.

AKF believes every patient and caregiver has the right to understand what is going on with their health, or the health of their loved one, and how to best manage it. That is where we come in.

The American Kidney Fund hosts free, monthly, educational webinars meant for patients and caregivers. Each webinar explores a different topic relevant to living well with kidney disease. Since the webinar program’s launch in 2016, AKF has hosted over 27 webinars on many topics including nutrition, employment, insurance, transplant, exercise, heart disease, advocacy, pregnancy, mental health, and more.

Webinar speakers are carefully chosen based on their knowledge, and ability to connect with a patient audience. This ensures we deliver the highest quality of information in the best way. Some speakers are kidney patients or kidney donors themselves.  The webinars are delivered from a variety of perspectives so that the advice given is both relatable and reliable.

AKF aims to take complex topics and simplify the content without taking away from the quality of information.  In an effort to be inclusive of non-English speakers, AKF has hosted a webinar entirely in Spanish on preventing and treating kidney disease, and is in the process of translating even more webinars into Spanish.

One of the highlights of the American Kidney Fund webinars is the live Q&A session held during the last 15-20 minutes of each presentation, when the audience can ask their questions in real time and receive an immediate answer from our speaker. This creates a unique space for our attendees to interact anonymously with an expert in a judgement-free zone. We understand the time-demands of being a kidney patient or caregiver, which is why all our webinars, along with the PowerPoint slides, are also uploaded to the AKF website for on-demand viewing.

Our next webinar is on Friday, June 22 from 1-2pm (EST) and will discuss why phosphorus is an important nutrient for kidney patients to consider, and the best ways to manage phosphorus through diet and medicine.  Carolyn Feibig, the dietitian and speaker for this webinar is exceptionally knowledgeable and enthusiastic about her field. If you have questions about how to manage a CKD-friendly diet, this is your opportunity to learn more and to ask your questions.

After each webinar we ask for feedback and suggestions from our audience about future webinars.  We invite you to register now, and then share which topics you would like to hear about next. We hope you will use our webinars as a tool to live the healthiest life possible with kidney disease.

American Kidney Fund www.kidneyfund.org/webinars

I looked at some of their past webinar topics and was impressed with the variety.

My office is abuzz. SlowItDownCKD 2013, both digital and print, is available on Amazon. Give it a few weeks before it appears on B&N.com. I’m excited because I vowed to separate the unwieldy, small print, indexless The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 into two separate books with a SlowItDownCKD title, index, and larger print just as I’d done with The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 (which is no longer available since it is now SlowItDownCKD 2011 and SlowItDownCKD 2012). That’s half way done now, boys and girls… I mean readers.

Here’s something a bit unusual: I have a request from a reader who has the rare kidney disease Calyceal Diverticulum. Rather than asking me to write about it, she’s looking for others with the same disease. Do we have any readers here with this disease? If so, we could make the blog a safe place to connect. Or you could email me and I’d pass on your information to her. Alternately, with her permission, I could pass her information to you. I can understand her need to communicate with others with the same disease, so please do let me know if you’d like to communicate with her.

And last, but not least, and I have to admit brain fog has me here, so bear with me if you’ve read this before. In digging through the morass of my desk, (I have been traveling a lot lately.) I uncovered a beta copy of SlowItDownCKD 2017. That means it has all the content, but I didn’t like the formatting so I re-did it. Would you like it? If so, just be the first one to contact me to let me know. Oh, one restriction: only those who haven’t received a free book from me before, please. I’d like to share the CKD information with as many people as possible.

Until next week,

Keep living your life!

 

 

Eating Makes Me Hungry

I couldn’t figure it out. I had my renal diet down pat (That only took ten years, she thought snidely.) When the foods I’m sensitive to had to be removed from that diet, I worked the new-reduced-possibilities-for-food-choices diet out pretty quickly, too. But then I noticed that I was hungry pretty much only after I ate.

I’d prefer to eat only if I’m hungry, but some of my medications require food first. Okay, so I knew I had to eat at least twice a day and graze several times during the day to keep my blood glucose level. I thought I took care of that by eating a small breakfast, lunch as my main meal when I got hungry, and a much smaller, almost snack type meal for dinner.

So why did eating make me hungry? Was I not taking enough food in? Nope. I counted calories to check and was not much under my allotted 1,200 per day. So what was it?

Women’s Health at https://www.womenshealthmag.com/food/g19920742/foods-that-make-you-hungrier/ named the following seven foods that make you hungrier:

  1. Whole wheat bread
  2. Fruit juices
  3. Egg whites
  4. Green smoothies
  5. Non-fact dairy
  6. Pickles
  7. Whole wheat crackers

Hmmm, between the renal diet and my food sensitivities I don’t eat any of these. Wait, I do eat whole eggs which contain egg whites, but I think Dr. Caspero meant only the whites for the purposes of this list.

Of course, I wanted to know why these foods make you hungrier. This quote is from the same article.

“For the most part, fat, fiber, and protein help with satiation,” says Alex Caspero, R.D. “So foods without those components will likely leave you searching for your next meal in no time.”

Reminder: R.D. means registered dietician.

I don’t eat whole wheat anything because I have sensitivity to it, but doesn’t it have fiber? That’s a yes and no answer. It does have fiber, but is more processed than regular flour which means less fiber. Fiber helps to fill you up. Side bar here:  Did you know that flour of any kind has wheat in it since it’s made from one or more of the three parts of the grain? That’s mean no bread for me.

Nope, Dr. Caspero didn’t answer my question as fully as I wanted it to be answered. Back to the drawing board, boys and girls.

Wait a minute. This from the BBC at http://www.bbc.co.uk/guides/zt22mp3 looks like it’s getting close to answering my question.

“Different types of food we eat affect the brain in various ways. For example, fatty foods trick the brain into believing that you have eaten fewer calories than you actually have, causing you to overeat. This is because fatty foods such as butter and fried foods contain a lot of densely packed energy.

However, other foods give a lasting sense of fullness. Fibre triggers the release of gut hormones that make you feel full. A low fibre diet though, with little or no wholemeal produce or fruit and vegetables, may leave you open to feelings of hunger.

Foods with a low GI (glycaemic index) such as nuts, vegetables and beans release energy more slowly than high GI food such as white bread and sugar. Eating more low GI foods will suppress your hunger by increasing levels of gut hormones that help you feel fuller for longer.”

Foods with a low GI, huh? This brings me back to the lessons from the Diabetes Nutritionist my family doctor sent me to when she discovered I was (and still am four years later) pre-diabetic. Okay, I can take a hint. What are some of these low GI foods?

The American Diabetes Association at http://www.diabetes.org/food-and-fitness/food/what-can-i-eat/understanding-carbohydrates/glycemic-index-and-diabetes.html  was able to help us out here:

“Low GI Foods (55 or less)

  • 100% stone-ground whole wheat or pumpernickel bread
  • Oatmeal (rolled or steel-cut), oat bran, muesli
  • Pasta, converted rice, barley, bulgar
  • Sweet potato, corn, yam, lima/butter beans, peas, legumes and lentils
  • Most fruits, non-starchy vegetables and carrots

Medium GI (56-69)

  • Whole wheat, rye and pita bread
  • Quick oats
  • Brown, wild or basmati rice, couscous

High GI (70 or more)

  • White bread or bagel
  • Corn flakes, puffed rice, bran flakes, instant oatmeal
  • Shortgrain white rice, rice pasta, macaroni and cheese from mix
  • Russet potato, pumpkin
  • Pretzels, rice cakes, popcorn, saltine crackers
  • melons and pineapple”

According the renal diet I follow, the Northern Arizona Council on Renal Nutrition Diet, I could eat all of these foods. According to my food sensitivities, I could only eat oatmeal, some fruits, and vegetables. Maybe that’s why eating makes me hungry.

Take a look at this. Redbook (and to think I smirked at my mom for reading this magazine when I was a teenager) at https://www.redbookmag.com/body/healthy-eating/g2819/foods-that-make-you-hungry/?slide=1 explains about fruit making you feel hungrier:

“’Fruit juice may already be on your no-go list, but if you’re eating more than one serving of the whole variety (i.e. one banana or one cup of berries), you may want to scale back. It may have nutritional benefits, but fruit is not going to help suppress your appetite,’ says Perlmutter. ‘It contains both fructose and glucose, which won’t signal insulin, causing your appetite to rage on.’”

Perlmutter is David Perlmutter, MD, a board-certified neurologist and author of Brain Maker.

Got it: More fiber, less sugar. Now the only question is can I get myself to adhere to that… and can you if you choose to stop being hungrier after eating than you were before.

Talking about magazines, Arizona Health and Living at https://issuu.com/arizonahealthandliving/docs/arizona_health_and_living_magazine__9a2d374f4dffc2 is helping me spread awareness of Chronic Kidney Disease. This is in their June 2018 issue.

 

Guess what I found when I was preparing my non-CKD book for last Thursday night’s reading at our local The Dog Eared Pages Used Book Store. You’re right. It’s a copy of the newly minted (um, printed) SlowItDownCKD 2017. Would you like it? All that I require is your address and that you haven’t received a free book from me before.

Random thought: I cannot believe I just chose a Father’s Day gift for my son-in-law’s first Father’s Day. Add my youngest’s upcoming nuptials and this is a very happy world I live in. Here’s hoping yours is a happy one, too.

Until next week,

Keep living your life!

Last Week, The Country… This Week, The World

Last week, I wrote about a U.S. clinical trial program, AllofUs Research Program. This week we’re going global. Huh? What’s that, you ask. It’s KidneyX.

I can just feel you rolling your eyes. (Ask my children if you don’t think I can do that.)  Hold on a minute and I’ll let KidneyX explain what they are from their website at http://www.kidneyx.org.

“The Kidney Innovation Accelerator (KidneyX) is a public-private partnership to accelerate innovation in the prevention, diagnosis, and treatment of kidney diseases. KidneyX seeks to improve the lives of the 850 million people worldwide currently affected by kidney diseases by accelerating the development of drugs, devices, biologics and other therapies across the spectrum of kidney care including:

Prevention

Diagnostics

Treatment”

I know, I know. Now you want to know why you should be getting excited about this program you don’t know much about. Let’s put it this way. There hasn’t been all that much change in the treatment of kidney disease since it was recognized. When was that? This question was answered in SlowItDownCKD 2015:

“…nephrologist Veeraish Chauhan from his ‘A Brief History of the Field of Nephrology’ in which he emphasizes how young the field of modern nephrology is.

‘Dr. Smith was an American physician and physiologist who was almost singlehandedly responsible for our current understanding of how the kidneys work. He dominated the field of twentieth century Nephrology so much that it is called the “Smithian Era of Renal Physiology“ .He wrote the veritable modern Bible of Nephrology titled, The Kidney: Structure and Function in Health and Disease. This was only in 1951.”

1951?????? It looks like I’m older than the history of kidney disease treatment is. Of course, there were earlier attempts by other people (Let’s not forget Dr. Bright who discovered kidney disease in the early 1800s.) But treatment?

Hmmm, how did Dr. Smith treat kidney disease I wondered as I started writing about KidneyX.

Clinics in Mother and Child Health was helpful here. I turned to their “A Short History of Nephrology Up to the 20th Century” at https://www.omicsonline.org/open-access/a-short-historic-view-of-nephrology-upto-the-20th-century-2090-7214-1000195.php? and found this information:

“His NYU time has been called the Smithian Era of renal physiology for his monumental research clarifying glomerular filtration, tubular absorption, and secretion of solutes in renal physiology …. His work established the concept that the kidney worked according to principles of physiology both as a filter and also as a secretory organ. Twenty-first century clinical nephrology stems from his work and teaching on the awareness of normal and abnormal functioning of the kidney.”

I see, so first the physiology and function of the kidney had to be understood before the disease could be treated.

 

I thought I remembered sodium intake as part of the plan to treat CKD way before the Smithian Era. I was wrong. This is also from SlowItDownCKD 2015:

“With all our outcry about following a low sodium diet, it was a bit shocking to realize that when this was first suggested as a way to avoid edema in 1949, it was practically dismissed. It wasn’t until the 1970s that the importance of a low sodium diet in Chronic Kidney Disease was acknowledged.”

Aha! So one of our dietary restrictions wasn’t accepted until the 1970s. I was already teaching high school English by then. Things did seem to be moving slowly when it came to Chronic Kidney Disease treatment.

Let’s see if I can find something more recent. This, from the National Kidney Fund at https://www.kidney.org/professionals/guidelines/guidelines_commentaries sounds promising, but notice that this has only been around since 1997. That’s only 21 years ago. It has been updated several times, but there doesn’t seem to be that much difference… or maybe I just didn’t understand the differences.

“The National Kidney Foundation Kidney Disease Outcomes Quality Initiative (NKF KDOQI)™ has provided evidence-based clinical practice guidelines for all stages of chronic kidney disease (CKD) and related complications since 1997…. KDOQI also convenes a small work group of U.S. based experts to review relevant international guidelines and write commentary to help the U.S. audience better understand applicability in their local clinical environment.

Clinical Practice Guidelines are documents that present evidence-based recommendations to aid clinicians in the treatment of particular diseases or groups of patients. They are not intended to be mandates but tools to help physicians, patients, and caregivers make treatment decisions that are right for the individual. With all guidelines, clinicians should be aware that circumstances may appear that require straying from the published recommendations.”

Time to get back to KidneyX before I run out of room in today’s blog. Here’s more that will explain their purpose:

“Principles

  • Patient-Centered Ensure all product development is patient-centered
  • Urgent Create a sense of urgency to meet the needs of people with kidney diseases
  • Achievable Ground in scientifically-driven technology development
  • Catalytic Reduce regulatory and financial risks to catalyze investment in kidney space
  • Collaborative Foster multidisciplinary collaboration including innovators throughout science and technology, the business community, patients, care partners, and other stakeholders
  • Additive Address barriers to innovation public/private sectors do not otherwise
  • Sustainable Invest in a diverse portfolio to balance risk and sustain KidneyX”

This may explain why think tanks for kidney patients, all types of kidney patients, are beginning to become more prevalent.

Let’s go back to the website for more information. This is how they plan to succeed:

“Building off the success of similar public-private accelerators, KidneyX will engage a community of researchers, innovators, and investors to bring breakthrough therapies to patients by:

Development

Driving patient access to disruptive technologies via competitive, non-dilutive funding to innovators.

Coordination

Providing a clearer and less expensive path to bringing products to patients and their families.

Urgency

Creating a sense of urgency by spotlighting the immediate needs of patients and their families.”

One word jumped out at me: urgency. I am being treated for my CKD the same way CKD patients have been treated for decades…and decades. It’s time for a change.

One thing that doesn’t change is that we celebrate Memorial Day in the U.S. every year. And every year, I honor those who have died to protect my freedom and thank my lucky stars that Bear is not one of them. There is no way to describe the gratitude those of us who haven’t served in the military – like me – owe to those who have and lost their lives in doing so.

Until next week,

Keep living your life!

All of Me, uh, Us

When I was a little girl, I liked to listen to my father whistle ‘All of Me,’ written by Marks and Simon in 1931 when Charlie, my father, was just 16. Only a few years later, it became a sort of love language for my mother and him. Enter a former husband of my own and my children. When my folks visited from Florida and my then husband’s side of the family journeyed over to Staten Island from Brooklyn to visit them, they all sang the song with great emotion. (By then, Bell’s palsy had robbed my father of the ability to whistle.)

To this day, I start welling up when I hear that song. But then I started thinking about the lyrics:

“All of me
Why not take all of me?”

Suddenly, it popped. For us, those with chronic kidney disease, it should be:

“All of us

Why not take all of us?”

For research purposes. To “speed up health research breakthroughs.” For help in our lifetime. To spare future generations whatever it is we’re suffering… and not just for us, but for our children… and their children, too.

The National Institutes of Health has instituted a new research program for just that purpose, although it’s open to anyone in the U.S. over the age of 18 whether ill with any disease or perfectly healthy. While only English and Spanish are the languages they can accommodate at this time, they are adding other languages.

I’m going to devote most of the rest of this blog to them. By the way, I’m even more inclined to be in favor of this program because they launched on my first born’s birthdate: May 6. All of Us has its own inspiring welcome for you at https://launch.joinallofus.org/

This is how they explain who they are and what they intend to do:

“The goal is to advance precision medicine. Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.

To get there, we need one million or more people. Those who join will share information about their health over time. Researchers will study this data. What they learn could improve health for generations to come. Participants are our partners. We’ll share information back with them over time.”

You’ll be reading more about precision medicine, which I’ve written about before, in upcoming blogs. This is from All of Us’s website at https://www.joinallofus.org/en, as is most of the other information in today’s blog, and makes it easy to understand just what they are doing.

How It Works

Participants Share Data

Participants share health data online. This data includes health surveys and electronic health records. Participants also may be asked to share physical measurements and blood and urine samples.

Data Is Protected

Personal information, like your name, address, and other things that easily identify participants will be removed from all data. Samples—also without any names on them—are stored in a secure biobank.

Researchers Study Data

In the future, approved researchers will use this data to conduct studies. By finding patterns in the data, they may make the next big medical breakthroughs.

Participants Get Information

Participants will get information back about the data they provide, which may help them learn more about their health.

Researchers Share Discoveries

Research may help in many ways. It may help find the best ways for people to stay healthy. It may also help create better tests and find the treatments that will work best for different people.

I’m busy, too busy to take on even one more thing. Or so I thought. When I read the benefits of the program (above) and how easy it is to join (below), I realized I’m not too busy for this and it is another way to advocate for Chronic Kidney Disease awareness. So I joined and hope you will, too.

Benefits of Taking Part

Joining the All of Us Research Program has its benefits.

Our goal is for you to have a direct impact on cutting-edge research. By joining the program, you are helping researchers to learn more about different diseases and treatments.

Here are some of the benefits of participating in All of Us.

Better Information

We’re all human, but we’re not all the same. Often our differences—like age, ethnicity, lifestyle habits, or where we live—can reveal important insights about our health.

By participating in All of Us, you may learn more about your health than ever before. If you like, you can share this information with your health care provider.

Better Tools

The goal of the program is better health for all of us. We want to inspire researchers to create better tools to identify, prevent, and treat disease.

You may also learn how to use tools like mobile devices, cell phones and tablets, to encourage healthier habits.

Better Research

We expect the All of Us Research Program to be here for the long-term. As the program grows, the more features will be added. There’s no telling what we can discover. All thanks to participants like you.

Better Ideas

You’re our partner. And as such, you are invited to help guide All of Us. Share your ideas and let us know what works, and what doesn’t.

Oh, about joining:

Get Started – Sign Up

Here’s a quick overview of what you’ll need to do to join.

1

Create an Account

You will need to give an email address and password.

2

Fill in the Enrollment and Consent Forms

The process usually takes 18-30 minutes. If you leave the portal during the consent process, you will have to start again from the beginning.

3

Complete Surveys and More

Once you have given your consent, you will be asked to complete online health surveys. You may be asked to visit a partner center. There, you’ll be asked to provide blood and urine samples and have your physical measurements taken. We may also ask you to share data from wearables or other personal devices.

Before I leave you today, I have – what else? – a book give away. The reason? Just to share the joy that’s walked into my life lately. It’s easy to share the troubles; why not the joys? If you haven’t received one of my books in a giveaway before, all you have to do is be the first person to let me know you want this copy of SlowItDownCKD 2017.

 

I need to get back to that online health survey for All of Us now.

Until next week,

Keep living your life!

 

Published in: on May 21, 2018 at 10:38 am  Leave a Comment  
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Dare You Have Your First Mother’s Day?

Mother’s Day is this Sunday… and it’s my step-daughter’s first. That led me to remember my first with Ms. Nima Beckie Rosensfit and  I realized I’d never even heard of Chronic Kidney Disease then. But what if I had and I wanted to have a baby. What would I have to know?

That got me going. I know I blogged about this topic in February of this year, but I wanted to see if there was enough information for a part 2 to that blog. But, first, let’s take a look at how pregnancy affects the kidneys in a non-ckd woman.

The US National Library of Medicine, National Institutes of Health at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4089195/  helpful here:

“GFR rises early to a peak of 40% to 50% that of prepregnancy levels, resulting in lower levels of serum creatinine, urea, and uric acid. There is a net gain of sodium and potassium, but a greater retention of water, with gains of up to 1.6 L. Through effects of progesterone and alterations in RAAS, the systemic vascular resistance falls, leading to lower blood pressure and an increased RPF.”

You may need a reminder of some of these terms. Let’s see if What Is It and How Did I Get It? Early Stage Chronic Kidney Disease has their definitions. Aha! There are potassium and creatinine.

““Creatinine is … a compound released by voluntary muscle contraction. It tells the body to repair itself and grow stronger.

“Potassium: One of the electrolytes, important because it counteracts sodium’s effect on blood pressure.”

Why is this counteraction important you ask.  This tidbit from SlowItDownCKD 2011 explains:

“Then I found this in BrightHub.com’s February 13th article The Importance of the Potassium and Sodium Balance.

‘When there is potassium and sodium balance, cells, nerves and muscles can  all  function  smoothly.  With  an  imbalance,  which  is almost  always due to both an excess of sodium, and a deficiency of potassium, a set of reactions occurs leading to high blood pressure and unnecessary strain on blood vessels, the heart and the kidneys. Research has shown that there is a direct link between chronic levels of low potassium and kidney disease, lung disorders, hypertension and stroke’.”

And urea? The newly published SlowItDownCKD 2017 contains this information:

http://www.patient.co.uk/health/routine-kidney-function-blood-test has the simplest explanation.

‘Urea is a waste product formed from the breakdown of proteins. Urea is usually passed out in the urine. A high blood level of urea (‘uraemia’) indicates that the kidneys may not be working properly or that you are dehydrated (have low body water content).’”

It’s probably common knowledge that serum means in the blood rather than urine and that uric acid is the waste that remains when your body’s cells die. What baffled me was RAAS and RPP. It turns out that RAAS is renin-angiotensin-aldosterone system which, while interesting, would simply take too long to explain for this blog’s purpose. RPF is renal plasma flow. I love words, but this was getting to be a bit much for even me. I wanted to get to CKD in pregnancy. So let’s do that.

Let’s say I needed more reassurance that I could have a baby even though I had CKD. I felt like I found just that when I discovered RareRenal  at http://rarerenal.org/patient-information/pregnancy-and-chronic-kidney-disease-patient-information/and what they had to say about pregnancy and CKD.

“Good antenatal care from the earliest stages of pregnancy improves outcomes generally. This is particularly true for women with CKD. Planning for pregnancy allows women with CKD to get pregnant at the right time, while on the right medications and in the best possible health. To achieve this all women with significant CKD should receive pre-pregnancy advice so that they can assess the potential risk and to ensure that everything is in place to minimise it.

These are the key things to think about before getting pregnant:

When should a woman with CKD get pregnant?  This depends on the nature of the kidney disease. In general if a woman’s kidney function is likely to get worse over time it is better to plan the pregnancy sooner rather than later while function is still good. On the other hand, for a kidney disease that flares up and then settles down, such as Lupus nephritis, it is better to wait until the flare has settled for at least six months. Other factors to take into account are a woman’s age and fertility. They may have had drugs in the past to treat a kidney condition that can impair fertility (e.g. cyclophosphamide). If so they may need to take advice on whether this is an additional problem. Should she get pregnant at all? There are very few women these days who are advised not to get pregnant. Even then it is always up to the woman (and her partner) whether to take the risk. It is much better to be forewarned of the possible problems and to discuss these in advance.

Will she need extra medicines when she’s pregnant?  Women trying to get pregnant should start taking the vitamin folic acid to reduce the chance of their baby having spina bifida, an abnormality of the spinal cord. The normal dose of folic acid is 400ug per day and can be bought over the counter. However, if the folate level is low or a patient is on the drug azathioprine which affects the way folic acid works, the dose of 5mg daily may be prescribed. No other over the counter vitamins are required unless specifically advised by a doctor or midwife. All pregnant patients should avoid additional supplements of vitamin A. If vitamin D levels are low GPs will advise correction with high dose prescribed vitamin D (also known as cholecalciferol). Women with kidney diseases are at higher risk of pre-eclampsia. Aspirin lowers the risk of pre eclampsia, and women with CKD are usually offered a low dose aspirin (75mg once daily) throughout pregnancy unless there are specific reasons not to take it e.g. they are allergic to aspirin. Pregnant women with a high level of protein in their urine have an increased risk of developing blood clots (thrombosis). This can be reduced by small daily injections of low molecular weight heparin. Heparin reduces the way the blood clots. Both pregnancy and CKD can cause a low blood count (anaemia). When combined, anaemia can be more of a problem. Iron tablets or injections may be used and some women need to take the hormone erythropoietin (EPO) as  a weekly or monthly injection to overcome the anaemia. Blood transfusions are usually avoided in pregnancy. Pregnancy alters the control of sugar (glucose) in the body. This may be worse for patients on steroids (e.g. prednisolone), those from an Asian or African background, or who are overweight. Patients may develop a condition called gestational diabetes (diabetes caused by pregnancy) and require treatment with insulin.” How very reassuring. I’m ready… I mean are you ready to have your baby?

Until next week,

Keep living your life!

Something Else I Didn’t Know

One of the members of a Facebook Chronic Kidney Disease support group and I got into a bit of give and take about last week’s blog. It started with one topic and, as conversations are wont to do, ended up being about something entirely different: mgus. This is what I ended up responding:

“I don’t know mgus, either. I think the only way I can be of any help to you is to suggest you speak with your renal nutritionist and make sure she knows you also have mgus. Sorry! Hmmm, maybe I should learn about mgus and blog about it.”

As the week went on, I realized there was no “maybe” about it. So let’s learn about mgus together.

According to my old time favorite The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362, mgus is:

“Monoclonal gammopathy of undetermined significance (MGUS) is a condition in which an abnormal protein — known as monoclonal protein or M protein — is in your blood. The protein is produced in a type of white blood cell (plasma cells) in your bone marrow.

MGUS usually causes no problems. But sometimes it can progress over years to other disorders, including some forms of blood cancer.

It’s important to have regular checkups to closely monitor monoclonal gammopathy so that if it does progress, you get earlier treatment. If there’s no disease progression, MGUS doesn’t require treatment.”

Whoa! Looks like we need a lot of backtracking here. Let’s start with monoclonal. We know ‘mono’ means one and the ‘al’ at the end of the word means of or about. Now let’s deal with the unknown: ‘clon’. Dictionary.com at http://www.dictionary.com/browse/clone tells us it’s really clone (which you’ve probably already guessed) and means:

  1. a cell, cell product, or organism that is genetically identical to the unit or individual from which it was derived.
  2. a population of identical units, cells, or individuals that derive from the same ancestral line.

Oh, clone… as in Dolly, the sheep back in Scotland in 1995. Got it.

And gammopathy? That ‘o’ in the middle is just a connective so we’re really dealing with ‘gamm’ and ‘pathy’. You probably already know ‘pathy’. The Free Dictionary at https://www.thefreedictionary.com/-pathy offers a few definitions.

  1. indicating feeling, sensitivity, or perception: telepathy.
  2. (Pathology) indicating disease or a morbid condition: psychopathy.
  3. (Pathology) indicating a method of treating disease: osteopathy.

Number two is what we need for our purposes.

That leaves us with ‘gamm’, which I thought was part of gamma considering the definition of the disease. The first medical definition in The Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/gamma was helpful here.

“of or relating to one of three or more closely related chemical substances

  • the gamma chain of hemoglobin
  • γ-yohimbine

—used somewhat arbitrarily to specify ordinal relationship or a particular physical form and especially one that is allotropic, isomeric, or stereoisomeric (as in gamma benzene hexachloride)”

I’d have to agree if you’re thinking this is getting a bit too technical to continue down this particular road. Let’s go back to the disease itself and see what it may have to do with CKD. Hmmm, protein is mentioned in the definition and proteinuria can be a problem in CKD. Is that the connection?

We Are Macmillan, a cancer support group from England at https://www.macmillan.org.uk/information-and-support/diagnosing/causes-and-risk-factors/pre-cancerous-conditions/mgus.html, tells us:

“People with MGUS make an abnormal protein, called a paraprotein or M-protein, which is found in the urine or blood.”

I see. This M-protein does show up in the urine.

That did it. I jumped right back to the Mayo Clinic and learned that Chronic Kidney Disease may be a complication of MSUG. But, then again, so may blood clots and bone fractures.

Feeling a bit frustrated, I thought maybe symptoms would be helpful. The University of Rochester Medical Center at https://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=134&ContentID=121 offers this list.

Symptoms of monoclonal gammopathies vary among these conditions, but can include:

  • Anemia or low red blood cells counts
  • Lack of energy (fatigue) or tiredness
  • Weakness
  • Pain in the bones or soft tissues
  • Tingling or numbness in the feet or hands
  • Infection that keeps coming back
  • Increased bruising
  • Bleeding
  • Weight loss
  • Headache
  • Vision problems
  • Swelling
  • Mental changes

Anemia and fatigue may also be symptoms of CKD. Yet, both MSUG and CKD are often symptomless.

To complicate matters, there’s also a disease called monoclonal gammopathy of renal significance. That’s when the monoclonal gammopathy causes the CKD. It sounds like this was not the case with the reader. She just happens to have both monoclonal gammopathy and CKD.

I’m going to switch gears here. I received an email from the American Kidney Fund (AKF) asking me if I would write about their upcoming webinar on Depression. Who could say no to that request?

“Each month, AKF hosts an educational webinar for kidney patients and their loved ones about living well with kidney disease…. Experts cover important topics and there is always a live Q&A session afterwards where viewers can send in their questions. You can find more information about the upcoming webinar here: http://www.kidneyfund.org/training/webinars/

Our next webinar for May 23rd is Depression: the overlooked complication of kidney disease.”

I’ve watched some of the webinars and found them helpful. I think you will, too.

You know that promise I made about separating my unwieldy The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 into two separate books – SlowItDownCKD 2013 & SlowItDownCKD 2104 – with larger print and a more comprehensive index? You know, just as I did when I separated The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 (now ‘retired’ as a book no longer in print is called) into SlowItDownCKD 2011 & SlowItDownCKD 2102. I am proud to announce that I’ve actually started that process.

For a retired person, my calendar sure is full and busy seems to be my middle name. I vow to have the SlowItDownCKD series completed (until it’s time to publish SlowItDownCKD 2018, that is) by the end of the summer.

Happy Mother’s Day this coming weekend. I’m going to enjoy the fact that it’s my step-daughter’s first…. and hope we get to meet The Little Prince sooner rather than later. Living in two different states was never this hard before his birth.

Until next week,

Keep living your life!

Something’s Fishy Here

I saw this headline the other day: Another Nail in the Coffin for Fish Oil Supplements. When I read the article, I realized it was referring to fish oil supplements for heart problems. You can read it for yourself at  https://jamanetwork.com/journals/jama/fullarticle/2679051. By the way, JAMA is the Journal of the American Medical Association.

But then I wondered why I’ve been taking it all these years since I don’t have cardiology problems.  Hmmm, I do have osteoarthritis and can’t take NSAIDS. In What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, NSAIDS are explained this way:

“Non-steroidal anti-inflammatory drugs such as ibuprofen, aspirin, Aleve, or naproxen usually used for arthritis or pain management, can worsen kidney disease, sometimes irreversibly.”

Okay, so I don’t take NSAIDS or fish oil supplements for heart problems, but I do take fish oil supplements for osteoarthritis. Well, that’s good since my favored medical food for osteoarthritis – Limbrel – is still in recall by the FDA for possibly causing liver problems. Who wants both liver and kidney problems? Not me.

Anyhoo (as I’ve seen it written), that got me to thinking about osteoarthritis. This is from SlowItDownCKD 2016:

“According to The U.S. National Library of Medicine at http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0024677/:

‘Arthritis is a general term for conditions that affect the joints and surrounding tissues. Joints are places in the body where bones come together, such as the kneeswristsfingers, toes, and hips. The two most common types of arthritis are osteoarthritis and rheumatoid arthritis.”

I’ve since discovered there’s also psoriatic arthritis. All of these are inflammatory diseases. This is from this week’s newly published SlowItDownCKD 2017 (How about a review on Amazon.com or B&N.com as long as I’ve mentioned the book?):

“Arthritis is an inflammatory disease; psoriasis is an inflammatory disease; and Chronic Kidney Disease is an inflammatory disease. The common factor here is obvious – inflammatory disease.”

Bingo! I take the fish oil supplements for inflammation. Before I forget, inflammation is the topic of one blog or another – and usually several – in each of the books in the SlowItDownCKD series. Wikipedia’s definition helps to explain why:

“Inflammation is part of the complex biological response of body tissues to harmful stimuli, such as pathogens, damaged cells, or irritants, and is a protective response involving immune cells, blood vessels, and molecular mediators. The function of inflammation is to eliminate the initial cause of cell injury, clear out necrotic cells and tissues damaged from the original insult and the inflammatory process, and initiate tissue repair.”

Keep in mind, though, that anyone can edit a Wikipedia entry.

Since I’m writing about inflammation and CKD, I was thrilled to find this in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“By the way, are you taking Omega 3 {Fish oil} supplements?  There’s a theory it helps retard the progress of CKD.”

Aha! Now to the heart… I mean the kidneys… of the matter. How do Omega 3 supplements retard the progress of CKD?

Let’s lead off our answer with this quote from the #NephMadness 2017: Nutrition Region article in the March issue of The American Journal of Kidney Diseases at https://ajkdblog.org/2017/03/07/nephmadness-2017-nutrition-region/

“There is some evidence that omega-6 is proinflammatory and omega-3 are anti-inflammatory.”

Of course there’s much more to the article, but it gets pretty technical.

“What’s omega-6?” you ask. I went to my long term buddy The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/heart-disease/expert-answers/omega-6/faq-20058172 for some help in explaining.

“Your body needs fatty acids and can make all but two of them, which is why they are called essential fatty acids. Linoleic and linolenic acids are derived from foods containing omega-6 and omega-3 fatty acids, respectively, which serve different functions in the body. Some of these fatty acids appear to cause inflammation, but others seem to have anti-inflammatory properties.”

But we’re getting far afield from the anti-inflammatory properties of omega-3 that can help retard the progress of CKD. I decided to see what the natural health community had to say about this and discovered the following in Healthy Fellow at http://www.healthyfellow.com/742/fish-oil-and-kidney-health/ :

“However, based on what we know now, it seems that fish oil supports both cardiovascular and renal health in part by moderating blood pressure, heart rate and triglycerides in at-risk patients.”

This was back in 2011, but look at all it tells us. We know that hypertension is the number two cause of CKD. Moderating our blood pressure will (hopefully) slow down the progression of the decline of our kidney function. Kidney & Urology Foundation of America, Inc. at http://www.kidneyurology.org/Library/Kidney_Health/High_Blood_Pressure_and_Kidney_Disease.php explains this succinctly:

“High blood pressure makes your heart work harder and, over time, can damage blood vessels throughout your body. If the blood vessels in your kidneys are damaged, they may stop removing wastes and extra fluid from your body. The extra fluid in your blood vessels may then raise blood pressure even more. It’s a dangerous cycle.”

And heart rate? The conclusion of a study published in the Journal of Nephrology reads:

“Heart rate is an independent age-dependent effect modifier for progression to kidney failure in CKD patients.”

You can read the entire study at https://www.researchgate.net/publication/232714804_Heart_rate_age_and_the_risk_of_progression_to_kidney_failure_in_patients_with_CKD.

Then there are triglycerides. I included this information from the American Kidney Fund in SlowItDownCKD 2012.

“Your triglycerides are also important. People with high triglycerides are more at risk for kidney disease, heart disease and stroke.”

I am convinced. I will be one of those who continues taking my fish oil supplements to get in that omega-3 which is going to help me with inflammation which – in turn – will help me slow down the progression in the decline of my kidney function. How about you?

We’re going to do this a little differently this time. To celebrate the publication of SlowItDownCKD 2017, the first person who hasn’t won a book giveaway yet and can correctly tell me if my new grandchild is a boy or a girl will win a copy of Portal in Time. I hope you like time travel romances.

Until next week,

Keep living your life!

Unforgetting Us

Again, and again you’ve heard me rant about why we, as CKD patients, are not diagnosed earlier so we can start treating our Chronic Kidney Disease with – at least – life style changes earlier. That could help us slow down the progression of decline in our kidney function. I maintain that if only my primary care physician had told me when he first noticed that 39% GFR, maybe I wouldn’t be in stage 3 of 5. Maybe those now on dialysis or searching for a transplant wouldn’t be in the position they are, either.

It looks like our doctors are starting to feel the same way. Thank goodness. As a CKD Awareness Advocate, I’ve met others with the same advocacy. Robin is a doctor who feels the same, and someone I consider a friend. When I read her article, I jumped at the chance to guest blog it since she has the understanding of the medicalese that can frustrate the rest of us. Without further ado, Dr. Robin Rose…

Doctor, doctor give me this news: Primary care and CKD

Nephrology News & Issues, March 2018
Robin Rose, MD

Everyone’s mind jumps right to end-stage renal disease and dialysis when kidney disease is mentioned, even among clinicians. By the time a patient needs dialysis, pathology has been smoldering, sometimes for prolonged periods of time. Nephrology gracefully manages later-stage kidney disease, but it seems the incipient cases remain in the shadows. In general practice, kidneys are often ignored.

What I want to know is this: How can we effectively forge a path between nephrology and primary care — take the reins and together harness the epidemic, starting early while the pathology of the disease may be more easily addressed?

Too many patients and too many of their primary care providers are simply unaware of renal status. The staggering number of stage 3 chronic kidney disease (CKD) cases dramatically dwindles by stage 4, and CKD exacerbates so many underlying pathologies. Morbidity leads to mortality, often without recognition of underlying kidney damage as the prominent culprit. With the worldwide nephrologist shortage, and clearly with the high cost of end-stage care, it may well be time to expand the renal education and early/moderate CKD clinical savvy in primary care.

Build CKD recognition

As a physician, I recognize pharmaceutical options as a small part of longitudinal CKD care. The point of early diagnosis is assisting patients with the arduous and necessary journey to lifestyle change. Primary care has embraced this supportive role for other diagnoses, such as cancer, diabetes, heart disease, etc. This type of synergistic/collaborative care — reinforcing specialist input, following each person with his or her myriad issues — is the perfect fit for CKD.

How do we communicate to make our generalist and specialist intent merge into one clear target — enhanced patient quality of life? How can we make this work — to commence having a serious problem-solving conversation?

The literature suggests early nephrologist involvement improves long-term outcomes. Proactive primary care offers longitudinal guidance for making the enormous lifestyle changes in diet, exercise, stress management, hydration, sleep and toxic exposures, while offering psychological counseling that is required to achieve such changes. The cross-over benefits for patients’ other diagnoses is well known.

This concept of primary care nephrology could unfold into clinical reality as a professional, collaborative cooperation. With the diagnostic refinement of the nephrologist, a primary care physician can guide patients with CKD with the balancing act of comorbidities, medication management and optimal kidney lifestyle.

Likewise, what this family physician recognizes as critically useful from the consulting nephrologist is the expert focus on pathology with a diagnosis and back-up. We must agree that things like diet, exercise, sleep, stress and toxins have longitudinal importance for our patients with CKD — important enough for the primary care physician to make time with motivated patients to assess and co-discover actionable adaptations. Comorbidities with time will certainly guide the process. The success of this requires supportive enthusiasm from the specialist.

Vision of collaboration

Here is an example: A 46-year-old perimenopausal working single mother, with a history 12 years prior of pregnancy-induced hypertension and diabetes, has moderate proteinuria and a creatinine of 1.2. A nephrology consult will crystallize her individual needs. A primary care plan will address medications, CKD lifestyle needs and illuminate the notable overlap of benefits for her other diagnoses.

During the course of four visits looking at her stress, relationship to food and exercise needs, she exhibits admirable motivation, paying attention to what and how she eats and enjoying a lunchtime walking program. Reinforcing these successes while addressing medications, diet, sleep, etc. every 3 months offers an opportunity to protect nephrons and proceed further in the adaptations needed.

At this time, nephrologists cannot assume this is taking place in all primary care settings. Primary care providers, guiding patients with CKD safely through commonplace medical scenarios — like infectious illnesses, traumatic injuries, surgeries, travel and stress — need to grasp a breadth of nephrology basics. Our patients with CKD are at increased risk of acute kidney injury. Astute protection means we save nephrons. This author would welcome renal rotations at all levels of medical training, with a facet of focus on longitudinal outpatient, early and moderate CKD care. This vision of collaboration, with a commitment to early diagnosis and intervention, offers the opportunity to learn how to guide patients to a less inflammatory lifestyle.

The urgency is there. Can we talk?

  • For more information:
  • Robin Rose, MD, is a semi-retired family physician with a long-time interest in chronic illness and the role of lifestyle, with an interest in incipient and moderate CKD as a current focus. She lives in Molokai, Hawaii.

Disclosure: Rose reports no relevant financial disclosures.

Here’s a suggestion. Why not bring this article to your primary care physician? It could be that renal disease has never really crossed his mind despite the fact that 90% of the 31 million people in the U.S. who have CKD are unaware they do. You may not benefit from this – already having been diagnosed – but the next patient may… and the one after that… and the one after that…keep going.

Until next week,

Keep living your life!

Compliance 101

Welcome to the last blog of National Kidney Month 2018. We all know I rarely write about dialysis or transplant, but a friend who is awaiting a transplant brought this book to my attention. This particular section of the book sparked my interest since non-compliance can be an issue in any stage of kidney disease. One part of my mission is to create awareness among Chronic Kidney Disease patients, their friends, families, and loved ones of how important compliance with their medical team is. Dr. Michael B. Fisher is a nephrologist who thinks the same way.

Today’s blog is mostly an excerpt from the upcoming book Surviving Kidney Disease. According to his book’s web page:

“Dr. Fisher received his medical degree from SUNY in 1968 and did his nephrology fellowship at UCLA in 1972. He has been the Medical Director of Acute Dialysis at Santa Barbara Cottage Hospital from 1984 to present. He has done 131 teaching lectures at this hospital including topics such as management of malignant hypertension, renal management of toxic shock syndrome, and NSAID drug-induced renal failure. Dr. Fisher was voted by the medical residents the outstanding teacher of the year on 1988. He is active in promoting well-being among renal patients and educating them on care options.”

Dr. Fisher, the floor (er, keyboard) is yours:

“Each patient is unique. A teenager will have different issues than a professor in his fifties, or an elderly diabetic lady whose understanding of English is limited. Therefore, the only effective way to deal with non-compliance is to understand the issues that will interfere with the learning curve for a patient and then customize the lesson plan for the specific needs. The goal is to prevent major non-compliance by initiating a program of education where the patient and family learn why it is critical to make the sacrifice and are motivated to follow doctor’s orders.

The patient will gradually feel better over time after just having started dialysis and that is when the teaching really begins. If the patient is a transplant candidate, discussion of how to get a kidney is uplifting and sets the stage for the need to follow the prescription, no matter how difficult.

The truth is this is a difficult challenge because of the complex nature of kidney disease and the human mind.  I have found that by immediately presenting the possibility for a kidney transplant while also explaining why the need for a strict diet and appropriate fluid restriction, people begin to see a way out of their predicament, spirits soar, and their inner source of strength takes over.  Hope inspires people to find the how to overcome the most daunting challenges.

Here is a synopsis of a recent patient care meeting with a 22 year -old, father of 2 who has been on hemodialysis for 5 years. He is on the transplant list and could be called at any time. If he were called tomorrow, he would be rejected because his parathyroid hormone level (PTH) is ten times above the target number.

He appeared at a patient care meeting, attended by our full staff. When we reminded him that his PTH level was 2000 and that we had been aiming for 200 he was unfazed. Then I explained to him again that even though he felt well, at any time he might suffer from severe bone pain from a disease which is silent even though it is damaging the bones and every organ system. I discovered that he works five days a week despite having dialysis treatments three times in a week. His mother-in-law prepares his lunch every day which consists of a half of a chicken which provides high quality protein and with it an enormous amount of phosphorus. He also failed to take a drug called Sensipar which lowers PTH.

He has felt well, looks muscular, and rather healthy, so in his mind why fix it if it doesn’t seem broken?  I must have finally reached him when I told him what likely happening to his bones and other organs. The most powerful argument that I presented was that he was so close to being called for a kidney transplant, his ticket to a normal life, one where he could eat and drink that things he loved the most.

The bell rang in his mind. He asked questions, took notes, made an appointment to see me to further discuss kidney transplant, his diet and medicines. The social worker connected with him as did the dietician who was going to talk to the mother-in-law about reducing phosphorus in the diet and placing his pills in an organizer. He left with more knowledge and hope that if he talk (sic) ownership of his diet, he would soon receive that kidney transplant that would change his life forever.”

When I was a high school English teacher in New York City a million years ago – or so it seems – my feeling was that you have to meet the student at whatever level they are and start their education from there. I carried that feeling with me into my CKD Awareness Advocacy. It seems Dr. Fisher does, too. As CKD patients, we are each unique.

That’s one of the many and varied reasons I cover so many different topics and often revisit a topic several years later. Just as with my high school students, CKD patients may not be ready to hear medical advances or suggestions to make living with CKD easier the first, second, third, or even 99th time they hear – or read – it. They may gloss over it when it’s presented one way, but glom onto it when presented another.

Just in case you’re wondering how Dr. Fisher knows what a patient feels like, this is from his website at http://www.michaelfishermd.com/:

“I suddenly became a patient myself and came face-to-face with the idea that I was no longer a part of the ‘temporarily healthy.’ Walking in the slippers of my patients allowed me to more fully understand the challenges they faced and the courage that they found to overcome them….”

Although not a renal patient, he could see for himself just how brave you need to be to listen, to comply, to ask questions, to make suggestions as a patient who is probably scared out of your mind with your diagnose to begin with.

Here’s to all of us: the nephrologists, renal nutritionists, phlebotomists, schedulers, and the patients themselves. May this be your month for learning all you can about Chronic Kidney Disease.

Until next week,

Keep living your life!

Just a Little Bit Pregnant

We are in Dayton, Ohio, right now and have attended the surprise baby shower for one of my daughters. Wow, just wow! Every other phrase from the guests’ lips was baby this or baby that… and rightly so. It was a baby shower, for goodness’ sake. I loved the oohing and aahing, the happy tears, the stories about when the mom and dad to be were babies themselves. I loved seeing how excited the parents to be were and how thrilled we all were for them.

Yep, I got to thinking. Is it the same for those pregnant moms with CKD? When I first started writing about Chronic Kidney Disease back in 2010, this was included in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“Pregnancy is risky for women with CKD. The risks for both the mother and fetus are high as is the risk of complications.  You’ll need to carefully discuss this with your nephrologist and your gynecologist should you absolutely, positively want to bear a child rather than adopt.”

How dismal. And how outdated. Eight years can make one heck of a lot of difference in the medical field.

The National Kidney Foundation at https://www.kidney.org/atoz/content/pregnancy has information which is far more recent so I’m going to turn this week’s blog over to them for a while:

“A new baby is a joy for any family. But pregnancy can put a lot of stress on your body. If you have kidney disease or kidney failure, it can put you and the health of your unborn child at risk.

Are you thinking about pregnancy? If so, you should discuss it beforehand with your doctor or other healthcare provider. They know you, and they can help you make a decision that is based on your own personal health. There are many things to consider. You and your doctor should discuss them all very carefully. Some things that can affect a healthy pregnancy include:

  • Your stage of kidney disease
  • Your general health
  • Your age
  • Having high blood pressure, diabetes, or heart disease
  • Having other serious health conditions
  • Protein in your urine

Here are a few brief answers to some common questions about kidney disease and pregnancy.

Can a woman with “mild” kidney disease have a baby?

That depends. There is good evidence to suggest that women with very mild kidney disease (stages 1-2), normal blood pressure, and little or no protein in the urine (called “proteinuria”) can have a healthy pregnancy. What is proteinuria? It’s a sign of kidney damage. Your body needs protein. But it should be in your blood, not your urine. Having protein in your urine usually means that your kidneys cannot filter your blood well and the protein is leaking out.

In women with moderate to severe kidney disease (stages 3-5), the risk of complications is much greater. For some women, the risk to mother and child is high enough that they should consider avoiding pregnancy.

If you are thinking of becoming pregnant, ask your doctor or other healthcare provider about your stage of kidney disease, your risk for complications, your degree of proteinuria, and any other health conditions you may have.

Can a woman who is on dialysis have a baby?

Some changes in your body make it hard to become pregnant. For example, most women on dialysis have anemia (a low red blood cell count) and hormone changes. This may keep them from having regular menstrual periods.

Women with kidney failure are usually advised against becoming pregnant. The rate of complications is very high. Risks to both the mother and developing baby are high. If you are thinking of becoming pregnant, talk to your healthcare provider. If you become pregnant, you will need close medical supervision, changes in medicine, and more dialysis to have a healthy baby.

Can a woman who has a kidney transplant have a baby?

Yes. If you have a kidney transplant, you are likely to have regular menstrual periods and good general health. Therefore, getting pregnant and having a child is possible. But you should not become pregnant for at least one year after your transplant, even with stable kidney function. Some medicines that you take after a kidney transplant can cause problems to a developing baby. In some cases, pregnancy may not be recommended because there is a high risk to you or the baby. Another reason is if there is a risk of losing the transplant.

Talk with your healthcare provider if you have a transplant and are thinking about getting pregnant. Your healthcare provider may need to change your medications so that it is safe for you to become pregnant. It is very important to use birth control until you and your healthcare provider have agreed that it is safe for you to become pregnant.”

There is even more information at the URL for this article. What I found encouraging is that for each stage of kidney disease – chronic, dialysis, transplant – there is hope. I see the cautions, I know it means extra care and extra work, but it is possible. Nowhere did I read that pregnancy is not for those with CKD.

By the way, I didn’t develop CKD until my youngest was in her twenties and my doctor still had to take my general health, age, and if I had high blood pressure, diabetes, heart disease, or other serious health conditions into account.

The baby whose shower we attended is our first grandchild. When I was diagnosed with CKD a decade ago, I doubted I would live to see this day… and that had nothing to do with the fact that I had just met the man who was to be my husband and hadn’t yet met his daughter who will be this baby’s mother.

My point here is that I’ve learned so much about keeping my CKD under control and it’s pretty much been through asking questions and working with my nephrologist, as well as researching. And now I’m urging you to learn as much as you can if you’d like to have a baby. Well, in general too, but today’s blog is about pregnancy.

Until next week,

Keep living your life!

The Elusive Diet Plan

I find it amazing, absolutely amazing, how limited my diet has become in the last decade. It’s not just the renal diet, or even the renal diet with the prediabetes way of eating added. I had some testing done and found ‘food sensitivities’ as well as out and out allergies that needed attention. And now? It turns out I have Irritable Bowel Syndrome or IBS, which requires I change my eating habits yet again.

When I was first diagnosed with Chronic Kidney Disease, I was introduced to the Northern Arizona Council on Renal Nutrition Diet. I reproduced that in SlowItDownCKD 2015 and here it is again…still crooked. (Can I blame that on macular degeneration? No? Oh well.) Unfortunately for me, I can’t just “limit,” which is what the second column on each page suggests, so I have to avoid. One exception leads to a second and then a third, so to me, “limit” means Do.not.eat.

I understood I had to limit my phosphorous, potassium, protein, and sodium to preserve my kidney function and was scared enough by my diagnosis to follow this diet religiously, recording the amounts I ate in a little notebook. Nowadays, there are apps that will help you track these electrolytes. I listed a few in SlowItDownCKD 2016, but that list surely needs updating a full year or more later. Perhaps I should write about that next week.

Back to the renal diet. This meant changes for me, lots of them. My staple – bread – would now be limited, as would potatoes. I am so the grandchild of my grandfather, a Russian miller. I am also lactose intolerant so those limitations were not a problem since I didn’t eat dairy in the first place. The measuring is what I had to get used to in all categories… and I did, to the point where I can eye measure just about all the foods.

Then came the pre-diabetes dietary changes. My A1C was continually elevated. I didn’t want to develop diabetes, so I knew this test that measures blood glucose had to start registering lower readings. Hmmm, I was able to adhere to the renal diet. I’ll just modify that with these new changes, I thought.

Writing The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2  helped me  understand how to do this:

“Ahh! So all carbohydrates, whether from starches or sugars break down into sugar glucose. This is starting to sound familiar. When I brought my pre-diabetes to the nutritionist at my nephrologist’s office, she gave me quite a bit of information and a handout from DCE, a dietetic practice group of the American Dietetic Association. Did you know that starchy vegetables, fruits, juices and milk also contain carbohydrates? It hadn’t occurred to me…. The Mayo Clinic has a good diet plan for diabetes, but it won’t work for Chronic Kidney Disease patients as it is. For example, whole wheat flour raises your blood glucose less than white flour, but has too much phosphorous for us, so we are warned to avoid it. Yoghurt, cheese, beans, and nuts are no-nos on my renal diet, but are often recommended in diabetes diets.”

My diet became noticeably more limited. But I was still willing to work on it. I remembered that CKD can cause diabetes, just as diabetes can cause CKD. I had enough trouble without diabetes, thank you very much.

Boom! Enter food allergies and sensitivities. Lettuce? I was living on salads at this point, but no more unless I could get a spinach salad. I wouldn’t necessarily miss lima beans, brazil nuts, buckwheat, celery, cherries, corn, cucumbers, lamb (ugh), oranges, red raspberries, and watermelon. Whine: some of my staples were on the list, too: rice, shellfish, vanilla, and yeast. Oh yeah, the little bit of mustard I cheatingly ate every once in a while was on the allergy list, too. *sigh*

It took quite a bit of telling myself I could do this and referring to this NEW list constantly to get my now three purpose diet under control. It was especially hard during sad times in my life.

As happens (thank goodness), the sad times with their emotional eating passed and I could get back to doing what my body needed. So why was I feeling so unwell? Was it a UTI? An ulcer? Something worse?

Welcome to eating modification number four. It’s Irritated Bowel Syndrome… and stress can be the source. The stress was caused by sadness in my case: my brother’s death, a bad outcome for testing on another family member, a third one’s hospitalization, a friend’s death, another’s illness. Now that my sad times were ended, at least temporarily, I had to deal with the aftermath.

While the disease is self-explanatory and the causes apparent, I still needed to know how to treat it. The MayoClinic at https://www.mayoclinic.org/diseases-conditions/irritable-bowel-syndrome/diagnosis-treatment/drc-20360064 was helpful, but also informed me that each person with IBS may need different treatments and that there were different kinds of IBS and different tests for each kind. This is the information I found most helpful, although two more of my staples – broccoli and cauliflower – are no longer available to me.

“Your doctor might suggest that you eliminate from your diet:

• High-gas foods. If you experience bloating or gas, you might avoid items such as carbonated and alcoholic beverages, caffeine, raw fruit, and certain vegetables, such as cabbage, broccoli and cauliflower.
• Gluten. Research shows that some people with IBS report improvement in diarrhea symptoms if they stop eating gluten (wheat, barley and rye) even if they don’t have celiac disease.
• FODMAPs. Some people are sensitive to certain carbohydrates such as fructose, fructans, lactose and others, known as FODMAPs — fermentable oligo-, di-, and monosaccharides and polyols. FODMAPs are found in certain grains, vegetables, fruits and dairy products. Your IBS symptoms might ease if you follow a strict low-FODMAP diet and then reintroduce foods one at a time.”

I’m laughing right now. This could not get more complicated. Uh, maybe I shouldn’t say that. Don’t want to draw attention from the diet gods, do I? At any rate, I see this as a challenge. Until I get tired, that is. Then it’s a formidable task.

Until next week,
Keep living your life!

To Eat It Or Not To Eat It

Merry Christmas… and for tomorrow, Happy Kwaanza. Oh, all right, let’s throw in Happy Chanukah although that’s already passed this year. What all these celebrations – yes, and New Year’s Eve, too – have in common is food. And food has potassium and phosphorous in it. Those are two of the electrolytes that Chronic Kidney Disease patients have to curtail.

Let’s backtrack a little bit and find out what these are. Each was included in the glossary of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“Phosphorus: One of the electrolytes, works with calcium for bone formation, but too much can cause calcification where you don’t want it: joints, eyes, skin, and heart.

Potassium: One of the electrolytes, important because it counteracts sodium’s effect on blood pressure.”

Now, let’s see if we can get a bit more information about the ill effects of having too much of either one.

This is from SlowItDownCKD 2011:

“Be aware that kidney disease can cause excessive phosphorus. And what does that mean for Early Stage CKD patients? Not much if the phosphorous levels are kept low. Later, at Stages 4 and 5, bone problems including pain and breakage may be endured since excess phosphorous means the body tries to maintain balance by using the calcium that should be going to the bones.”

And potassium? SlowItDownCKD 2012 has the answer:

“Too much potassium can cause irregular heart beat and even heart attack. This can be the most immediate danger of not limiting your potassium.”

We all have limitations on these (as well as sodium and protein) based upon our latest blood and urine lab results. Since my lab results registered normal for both electrolytes, I have pretty generous daily limitations: potassium: 3000 mg; phosphorous: 800 mg. If you’re like me, the numbers didn’t mean much.

Let’s try this another way. My husband’s traditional family Christmas dinner consists of standing rib roast, sweet potatoes baked in orange juice with marshmallow topping, string bean casserole, dinner rolls, tea or coke, and apple pie. (I added salad so there would be something I could eat.)

We’ll need a list of high potassium and high phosphorous foods before we can to analyze the meal. Luckily, there is one for phosphorus in SlowItDownCKD 2015:

HIGH PHOSPHORUS FOOD TO LIMIT OR AVOID

Beverages:
ale                                                    beer
chocolate drinks                           cocoa
drinks made with milk                dark colas
canned iced teas

Dairy Products:
cheese                                              cottage cheese

custard                                            ice cream

milk                                                 pudding

cream soups                                  yogurt

Protein:
carp                                                crayfish
beef liver                                       chicken liver
fish roe                                          organ meats
oysters                                           sardines

Vegetables:
dried beans and peas                  baked beans
black beans                                   chick peas
garbanzo beans                            kidney beans
lentils lima                                    northern beans
pork’n beans                                 split peas
soy beans

Other foods:
bran cereals                                brewer’s yeast
caramels                                      nuts
seeds                                            wheat germ
whole grain products

Now we need a list of high potassium foods. The National Kidney Foundation at https://www.kidney.org/atoz/content/potassium was helpful here. They also have a list for “Other Foods.”:

Fruits and Vegetables:
Apricot, raw (2 medium) dried (5 halves)    Acorn Squash
Avocado (¼ whole)                                           Artichoke
Banana (½ whole)                                             Bamboo Shoots
Cantaloupe                                                          Baked Beans
Dates (5 whole)                                                  Butternut Squash
Dried fruits                                                          Refried Beans
Figs, dried                                                            Beets, fresh

then boiled
Grapefruit Juice                                                  Black Beans
Honeydew                                                            Broccoli, cooked
Kiwi (1 medium)                                                 Brussels Sprouts
Mango(1 medium)                                             Chinese Cabbage
Nectarine(1 medium)                                        Carrots, raw
Orange(1 medium)                                             Dried Beans and Peas
Orange Juice                                                       Greens, except Kale
Papaya (½ whole)                                              Hubbard Squash
Pomegranate (1 whole)                                      Kohlrabi
Pomegranate Juice                                             Lentils
Prunes                                                                    Legumes
Prune Juice                                                           White Mushrooms,

cooked (½ cup)
Raisins                                                                    Okra
Parsnips

Potatoes, white and sweet
Pumpkin  

Rutabagas
Spinach, cooked
Tomatoes/Tomato products
Vegetable Juices

(Looks like my formatting is on vacation. Sorry about that, folks.)

Okay, here comes the hard part. Let’s scan the lists to see which of the foods in the dinner my husband craved are on this list. I see canned iced teas, dark colas, orange juice, and sweet potatoes. The potassium and phosphorous in one serving (?) of each is as follows:

food                                  potassium                                    phosphorous
canned iced tea                    18 mg.                                            32 mg.
dark cola                               44 mg.                                            62 mg.
orange juice                       235 mg.                                            40 mg.
sweet potatoes                   542 mg.                                            81 mg.
totals                                   839 mg.                                          215 mg.

Doesn’t look bad at all, does it? But it’s all guesswork. Is your liquid serving an ounce? Eight ounces? What about the juice in the sweet potato dish? Surely it’s not just one ounce. And maybe not eight depending upon how much of the juice is in the size portion of the sweet potato dish you had. Maybe you had seconds. Same for the sweet potatoes.

Since this is not at all a precise science, you’re better off practicing more limiting rather than less. I’m not a doctor as I keep mentioning, but I don’t see anything wrong with a just a taste or a small serving of each.

Of course, I’m not a fan of soda or any canned drink, so I get a pass on that. If you’re not sure how much of what you can eat on a daily basis, make an appointment with your renal dietician after the holidays and just enjoy today’s Christmas meal.

Hey, that doesn’t give you free reign to eat all those things expressly not on your renal diet. I know if I decide to eat some of the standing rib roast, I’m still limited to five ounces of protein a day… including the hardboiled egg I had for breakfast.

Lay.off.the.salt.shaker.too. Sodium is not your friend if you have CKD. Ask your hostess if he or she has Mrs. Dash’s seasoning or garlic powder (NOT SALT) should you be asked if you’d like the salt. Oh, was the green bean casserole made with canned, creamy soup? That’s going to up the salt content. Just another thing to be aware of when salivating at the sight of the scrumptious meal in front of you today.

I’d go really light on the hot chocolate, too, if you were planning on having some. The message here is to enjoy, but limit, those high phosphorous and potassium holiday foods you really crave.

Until next week (and next year),
Keep living your life!

Decisions, Decisions

A reader asked me how I choose the articles or studies I include in the blogs. Now you’ve got to remember that researching and I go way back. I was fortunate in that Research Writing was my favorite course to teach before I retired as a community college instructor. I loved it.

I was going to give you my take on researching when I stumbled across Dr. Alicia White’s piece on the United Kingdom’s National Health Services site at https://www.nhs.uk/news/Pages/Howtoreadarticlesabouthealthandhealthcare.aspx. She’s already written what I would have, so I’m dedicating today’s blog to that. I have not reproduced all of it only because I don’t have the room in the blog for that. Oh, those are not typos; they’re the UK spelling. Take it away, Dr. White:

If you’ve just read a health-related headline that has caused you to spit out your morning coffee (“Coffee causes cancer” usually does the trick), it’s always best to follow the Blitz slogan: “Keep Calm and Carry On”. On reading further, you’ll often find the headline has left out something important, such as: “Injecting five rats with really highly concentrated coffee solution caused some changes in cells that might lead to tumours eventually (study funded by The Association of Tea Marketing).”

The most important rule to remember is: don’t automatically believe the headline. …, you need to analyse the article to see what it says about the research it is reporting on….

Does the article support its claims with scientific research?

Your first concern should be the research behind the news article. If an article touts a treatment or some aspect of your lifestyle that is supposed to prevent or cause a disease, but doesn’t give any information about the scientific research behind it, then treat it with a lot of caution. The same applies to research that has yet to be published.

Is the article based on a conference abstract?

Another area for caution is if the news article is based on a conference abstract. Research presented at conferences is often at a preliminary stage and usually hasn’t been scrutinised by experts in the field. Also, conference abstracts rarely provide full details about methods, making it difficult to judge how well the research was conducted. …

Was the research in humans?

Quite often, the “miracle cure” in the headline turns out to have only been tested on cells in the laboratory or on animals. … Studies in cells and animals are crucial first steps and should not be undervalued. However, many drugs that show promising results in cells in laboratories don’t work in animals, and many drugs that show promising results in animals don’t work in humans. If you read a headline about a drug or food “curing” rats, there is a chance it might cure humans in the future, but unfortunately a larger chance that it won’t…..

How many people did the research study include?

In general, the larger a study the more you can trust its results. Small studies may miss important differences because they lack statistical “power”, and are also more susceptible to finding things (including things that are wrong) purely by chance. … When it comes to sample sizes, bigger is usually better. So when you see a study conducted in a handful of people, treat it with caution.

Did the study have a control group?

…. If the question being asked is about whether a treatment or exposure has an effect or not, then the study needs to have a control group. A control group allows the researchers to compare what happens to people who have the treatment/exposure with what happens to people who don’t. …

Also, it’s important that the control group is as similar to the treated/exposed group as possible. The best way to achieve this is to randomly assign some people to be in the treated/exposed group and some people to be in the control group. This is what happens in a randomised controlled trial (RCT) and is why RCTs are considered the “gold standard” for testing the effects of treatments and exposures. … Without either, retain some healthy scepticism.

Did the study actually assess what’s in the headline?

…. For example, you might read a headline that claims: “Tomatoes reduce the risk of heart attacks.” What you need to look for is evidence that the study actually looked at heart attacks. You might instead see that the study found that tomatoes reduce blood pressure. This means that someone has extrapolated that tomatoes must also have some impact on heart attacks, as high blood pressure is a risk factor for heart attacks. Sometimes these extrapolations will prove to be true, but other times they won’t. Therefore if a news story is focusing on a health outcome that was not examined by the research, treat it with a pinch of salt.

Who paid for and conducted the study?

This is a somewhat cynical point, but one that’s worth making. The majority of trials today are funded by manufacturers of the product being tested – be it a drug, vitamin cream or foodstuff. This means they have a vested interest in the results of the trial, which can potentially affect what the researchers find and report in all sorts of conscious and unconscious ways. This is not to say that all manufacturer-sponsored trials are unreliable. Many are very good. However, it’s worth seeing who funded the study to sniff out a potential conflict of interest….

Many thanks to Dr. White for her explanations.

Here we are in the middle of madness, holiday madness that is. Of course, that means we need to remind ourselves to slow down and de-stress. Exercising is one way to de-stress. We all have different ways to do that. The important thing is to do it… and stick to your renal diet if you follow one.

To those of who you celebrate Chanukah, I wish you a happy and a healthy first night tomorrow night. We’ll be lighting the Menorah along with you. It’ll be hard not to eat the chocolate gelt (money), but you can do it.

Until next week,
Keep living your life!

Taming the Wild Weed

I know someone who is a kidney donor. That’s actually how we met. I went to a conference to learn what I could learn and she was there at the invitation of the presenters. I was drawn to her right away not knowing who she was or why she was there… something about her magnetic personality, I think. That was years ago and since then I’ve attended her social media workshop and followed her closely on Instagram. Now she’s involved with medical marijuana. That got me to thinking.

So I did a little searching. Back in 2013, the National Kidney Foundation answered a reader’s question in their Ask the Doctor blog by responding more to the smoking than the marijuana:
“Smoking is not good for any person. Smoking is not safe for any person. I know of no specific ill effects of marijuana on the kidney.”

It seemed to me something must have been discovered about medical marijuana and chronic kidney disease in the last four years, so I kept digging and found this 2014 article from Phoenix New Times at http://www.phoenixnewtimes.com/arts/can-i-get-a-medical-marijuana-card-for-chronic-kidney-disease-6577499:

“Medical-grade cannabis can help with pain management, but there are still alternating schools of thought as to whether weed helps or hurts the kidneys. Claims that marijuana injures the kidneys often point to smoking as a damaging factor, but there are alternative methods of ingesting cannabis, including vaporizing, tinctures, and infusing the drug into food.

Additionally, a joint study by the University of Calgary and the University of Alberta concluded that, ‘Even small improvements in symptoms with the use of THC: CBD [cannabinoids, the active ingredients in cannabis] in patients with difficult-to-treat symptoms may be clinically meaningful.’

It seems, if you avoid smoking it, much more evidence exists that cannabis can help with the side effects of CRD, including nausea, loss of appetite, and weight loss.”

CRD means Chronic Renal Disease, an alternative name for CKD.

Well, that’s a bit more informative, but still, three years old. By now I was curious to know how marijuana worked in the first place. United Patients Group at https://unitedpatientsgroup.com/resources/how-medical-marijuana-works had the answer and the date on their site was only last year.

“Major Cannabinoids in Medical Marijuana

What THC Is and Its Effects

THC stands for delta-9-tetrahydrocannibinol. It is probably the best known cannabinoid present in medical marijuana. Physically it acts as a muscle relaxant and anti-inflammatory and psychologically it acts as a stimulant. This makes medical marijuana strains high in THC a good choice for patients who need relief while also to remain alert and active.

THC in medical marijuana acts in the following ways:
• anti-epileptic
• anti-inflammatory
• anti-depressant
• stimulates appetite
• lowers blood pressure
• apoptosis (self induced cell death)

What CBD Is and Its Effects

CBD stands for cannabidiol. Cannabidiol actually reduces the psychological effects of medical marijuana. For most patients, a strain that has high THC and high cannabidiol will have fewer “mental” effects and more physical ones. High cannabidiol medical marijuana strains, like Blueberry and Harlequin, are especially effective for illnesses with strong physical symptoms.

Cannabidiol’s effects include:
• reduced pain
• reduced anxiety
• reduced nausea
• sedative effects
• anti-convulsive
• anti-schizophrenic
• arrests the spread of cancer

What CBN Is and Its Effects

CBN is cannabinol, not to be confused with Cannabidiol. Cannabinol is very similar to THC, but has less psychological effects. It is produced as THC breaks down within the medical marijuana plant. High THC will make cannabinol’s effects stronger, and very high cannabinol concentrations can produce undesirably strong head highs.

Cannabinol levels tend to be high in medical marijuana strains like Strawberry Haze and Blue Rhino, which can be particularly helpful for:
• lowering pressure in the eye (such as with glaucoma)
• analgesic
• anti-seizure

What CBC Is and Its Effects

CBC stands for cannabichromene. Cannabichromene’s main action is to enhance the effects of THC. High cannabichromene levels will make a high-THC medical marijuana strain much more potent.

Cannabichromene working together with THC is known to be a:
• sedative
• analgesic
• anti-inflammatory

What CBG Is and Its Effects

CBG is an abbreviation for cannabigerol. Cannabigerol has no psychological effects on its own, and is not usually found in high amounts in most medical marijuana. Scientists believe that cannabigerol is actually one of the oldest forms of cannabinoids, meaning it is essentially a “parent” to the other cannabinoids found in medical marijuana. It also has anti-microbial properties.

Cannabigerol has physical effects such as:
• lowering pressure in the eye
• anti-inflammatory
• sedative
• sleep assistance

Combining Strains

Alone, none of the five major cannabinoids are as effective as when they work together. These five cannabinoids also work with the minor compounds in marijuana, and this is probably one reason that medical marijuana replacements like Marinol do not work very well.

Professional medical marijuana growers can analyze their medical marijuana strains to breed and grow medication for patients with the desired range of levels of each major cannabinoid. Using this knowledge of what each compound does helps medical marijuana pharmacists, or budtenders, find the right combination for patients to treat specific conditions and find maximum relief.”

I am not at a point where I would consider medical marijuana since my only symptoms are occasional brain fog and tiredness. Should I be experiencing the kind of pain some CKD users do, I would revisit this decision but I’d have to keep in mind that using this substance could hurt my chances of a transplant.

According to Joshua L. Rein, DO and Christina M. Wyatt, MD of the Division of Nephrology, Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, NY as stated in their research study at http://www.ajkd.org/article/S0272-6386(17)30810-7/, as of this year:

“Twenty-nine US states have established medical marijuana programs, 8 of which have also legalized recreational marijuana, and Canada is expected to legalize recreational marijuana in 2018. Advanced chronic kidney disease (CKD) and end-stage renal disease (ESRD) are chronic conditions with significant associated morbidity and mortality.”

Don’t get confused. Medical marijuana is not a cure for CKD and is not suggested as one. However, should you have need of pain relief, it may offer you some… IF you live in a place where it is legal and IF your doctor thinks it’s a good option for you.

Until next week,
Keep living your life!

Giving Thanks

Thursday is the American Thanksgiving. This is what we were taught in grade school when I was a child:

“In 1621, the Plymouth colonists and Wampanoag Indians shared an autumn harvest feast that is acknowledged today as one of the first Thanksgiving celebrations in the colonies. For more than two centuries, days of thanksgiving were celebrated by individual colonies and states. It wasn’t until 1863, in the midst of the Civil War, that President Abraham Lincoln proclaimed a national Thanksgiving Day to be held each November.”

Thank you History.com at http://www.history.com/topics/thanksgiving/history-of-thanksgiving for that information.

Thanksgiving is celebrated in one form or another all over the world since it is basically a celebration of the harvest. For example, Canadians celebrate theirs on the second Monday of October since the harvest is earlier there. Then there’s China’s Mid-Autumn Moon Festival, Korea’s Chuseok, the Liberian Thanksgiving, Ghana’s Homowo Festival, and the Jewish Sukkot.

One thing all the different forms of Thanksgiving worldwide have in common is the delicious danger of overeating… and that is not good for our kidneys (no matter how scrumptious the food is). This report – which deals with just that topic – popped up on my news feed the other day. The source is Baylor College of Medicine at https://www.bcm.edu/news/kidney/overeating-holidays-bad-for-kidneys.

“‘The body absorbs nutrients from the gut and then the liver metabolizes them. Whatever is left that can’t be used by the body is excreted by the kidneys,” said Mandayam, associate professor of medicine in the section of nephrology. “The more you eat, the more you deliver to your kidneys to excrete, so eating a lot of substances that are very high in proteins or toxins can put a strain on your kidneys because they now have to handle the excess calories, toxins or proteins you’ve eaten.

During holidays like Thanksgiving, people tend to eat very heavy meals with lots of proteins and carbohydrates, and this can impact not only kidney function, but also liver, pancreas and cardiac function,’ Mandayam said.

‘When you consume carbohydrates, the body will use what is necessary for immediate energy release but any extra carbohydrates are converted into fat and stored underneath the skin and in the muscles and the liver. Similarly, when you eat a lot of fat, if the fat can’t immediately be converted into energy-producing adenosine triphosphate, then all of the fat will be stored in various fat deposits in the body,’ Mandayam explained.

‘The building up of fat inside your liver can lead to liver failure or cirrhosis, and fat inside your blood vessels can lead to heart attacks. Additionally, eating a lot of protein that your body can’t metabolize can lead to an increase in blood urea nitrogen, which adds stress on kidneys because they have to work harder to excrete this.

It is especially important for people with chronic kidney disease and kidney stones to not overeat,’ he said.

‘For people with kidney disease, even eating normal amounts of food puts stress on their kidneys,’ he said. ‘If you consume large amounts of carbohydrates, protein or fat the stress on an overworked, half functioning kidney will get even worse and can accelerate your kidney dysfunction.’”

It always made sense to me that overeating is detrimental to your health, but I was thinking in terms of obesity which could lead to diabetes which, in turn, could lead to CKD. I’ve also noticed that since I read this report, I’ve been eating less without making an effort. For years, I’ve been struggling with my weight and all I had to do is read this report????? Life is weird.

Let’s talk about carbohydrates for a minute. I instantly think of bread, all kinds of bread which is even weirder because I’ve been on a low carb diet for a while. I know, you thought of cakes and pies, didn’t you? Did you know that fruits and vegetables contain carbohydrates, too?

Hmmm, that was a revelation to me the first time I saw those charts. Now I’m wondering about excess calories. I’m limited to 1200 a day and find that this is fine with me. Bear is larger, being both male and bigger than I am, so his calorie limitations are higher. Your renal dietician can tell you what your ideal calorie count per day is if you don’t know.

So, why limit calories? Renal Medical Associates at http://renalmed.com/wp-content/uploads/2015/08/Nutrition-and-the-CKD-diet.pdf explain this succinctly:

  Why being overweight matters and what you can do about it.

We used to think that those “few extra pounds” were just dead weight. We now know that those extra pounds work together to disrupt your body’s normal functioning-with the goal of making you gain more weight. That’s why losing weight is such a difficult task.

I’m back. It’s important to limit your calorie limit so that you don’t add those extra pounds. The extra pounds not only make it more difficult to lose weight, but can lead to obesity… which can lead to diabetes… which can lead to CKD. This is starting to sound familiar, isn’t it?

If you already have CKD, the extra pounds you gain without calorie restrictions make it more difficult for your poor, already overworked and struggling kidneys to do their jobs.

What are those jobs you ask? Let’s take a look at Verywell.com at https://www.verywell.com/kidney-functions-514154 ‘s answer:

• Prevent the Buildup of Waste Products – The kidneys function as an intricate filter, removing normal waste products of metabolism, as well as toxins from the body. In the process of removing toxins, the kidneys may be damaged   by these substances.
• Regulate Fluid – Through holding on to fluids when a person is dehydrated, or eliminating excess fluids, the kidneys control fluid balance in the body.
• Regulate Electrolytes – The kidneys play an important function in electrolyte balance in the body, regulating the levels of sodium, potassium, and phosphate. This maintaining of optimal levels of electrolytes is referred to as homeostasis – or equilibrium.
• Regulate Blood Pressure – Through the production of a hormone called renin, the kidneys play an important role in regulating blood pressure. Learn more about the renin-angiotensin system.
• Regulate Production of Red Blood Cells – The kidneys produce a hormone called erythropoietin which controls the production of red blood cells in the bone marrow.
• Bone Health – The kidneys produce an active form of vitamin D which keeps the bones healthy.

Hey, it’s Thanksgiving. You can enjoy the holiday meal without overeating.

Until next week,
Keep living your life!

Any Veterans Here?

Veterans Day was Saturday, although many schools and businesses chose to celebrate it on Friday. That confused me since I mistakenly thought all national holidays falling on the weekend in the U.S. were celebrated on the following Monday. Once that was straightened out for me, I wondered if we were the only country to honor those who fought for us.

According to The United States Department of Veterans Affairs at https://www.va.gov/opa/vetsday/vetday_faq.asp, we’re not:

Q. Is Veterans Day celebrated in other countries?

A. Yes, a number of countries honor their veterans each year on November 11, although the name and types of commemorations differ somewhat from Veterans Day celebrations in the United States. For example, Canada and Australia observe “Remembrance Day” on November 11, and Great Britain observes “Remembrance Day” on the Sunday nearest to November 11. There are similarities and differences between these countries’ Remembrance Day and America’s Veterans Day. Canada’s observance is actually quite similar to the U.S. celebration, in that the day is intended to honor all who served in Canada’s Armed Forces. However, unlike in the U.S., many Canadians wear red poppy flowers on November 11 in honor of their war dead. In Australia, Remembrance Day is very much like America’s Memorial Day, a day to honor that nation’s war dead.

In Great Britain, the day is commemorated by church services and parades of ex-service members in Whitehall, a wide ceremonial avenue leading from London’s Parliament Square to Trafalgar Square. Wreaths of poppies are left at the Cenotaph, a war memorial in Whitehall, which was built after the First World War. At the Cenotaph and elsewhere in the country, a two-minute silence is observed at 11 a.m., to honor those who lost their lives in wars.

There are 600,000 veterans with kidney disease in the U.S. Considering that kidney disease is a medically dischargeable disease (Can you imagine soldiers in the field trying to stick to the renal diet?), I began to wonder just how our veterans were being treated once they were no longer active military.

I went to the National Institute of Diabetes and Digestive and Kidney Diseases at http://bit.ly/2ABGeli for the following information:

The prevalence of chronic kidney disease (CKD) in the Veteran population is estimated to be 34% higher than in the general population, due to demographic differences and the existence of significant co-morbidities associated with CKD in the Veteran population—diabetes mellitus and hypertension. VA currently cares for over 600,000 Veterans with kidney disease in their 153 medical treatment facilities or 800 community based outreach clinics (CBOC’s) across the United States. Those Veterans who progress to kidney failure are treated either at home or in one of the 70 VA dialysis units, or if dialysis services are not directly available, may be treated in the community under VA contracted care. Currently over 15,000 Veterans receive care directly by VA or through the community under VA contracted care. Eligible Veterans may also elect to receive dialysis care in the community using Medicare or other personal health benefits programs. Renal transplantation is also offered through the VA as a regionalized service at 5 centers.

Wait a minute. Why did “demographic differences and the existence of significant co-morbidities associated with CKD in the Veteran population—diabetes mellitus and hypertension” lead to a whopping 34% of veterans having kidney disease?

I know when Bear spoke with me about his 25 year military career, he talked of people with different ethnic backgrounds from different parts of the country… some from different parts of the world.

I remembered writing this in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“…Native American, Alaskan Native, Hispanic, Pacific Islander or Afro-American ethnic groups…have a 15 to 17% higher occurrence of CKD.”

And I was off and running. Last Veterans Day’s Huffington Post was able to help out here.

“According to the U.S. Department of Defense, as of 2012 there were over 22,000 American Indians and Alaska Natives on active duty, and the 2010 Census identified over 150,000 American Indian and Alaska Native veterans.”

You can read the entire article at https://www.huffingtonpost.com/national-museum-of-the-american-indian/american-indians-serve-in-the-us-military_b_7417854.html.

And Hispanics? Journalist Erika L. Sanchez wrote in 2013 that over 157, 000 Hispanics served in the military then. By the way, her article at http://nbclatino.com/2013/01/01/u-s-military-a-growing-latino-army/ gives the rest of us a little insight into the Latino community’s military leanings.

I hesitate to come up with the number of Pacific Islanders serving in the military since the information is even older than that for Native Americans and Alaskan Natives (Did you notice they were grouped together?) or Hispanics. It’s also included with that of Asians, so the categories are Asian-Pacific Islanders rather than Pacific Islanders.

As for Afro-Americans or Blacks – readers, which name do you prefer? – the closest I can figure out is that 370,842 Blacks or 16% of the Blacks in the United States served in the U.S. military… in 2011.

None of these statistics is current. It takes time for the military to collect and compose their data, but I had been hoping for numbers that were a little more timely.

And now the biggie: just how much is The Veterans Administration spending on veterans with kidney disease?

Finally, a fairly current article. In April of this year, MedPage Today at https://www.medpagetoday.com/meetingcoverage/nkf/64668 offered this information from Kristen Monaco’s article:

Rajiv Saran, MD, of the University of Michigan, and colleagues found the total cost of CKD care in the Department of Veterans Affairs healthcare system increased from $12 billion in 2006 to $19 billion in 2014 in current dollars. Adjusted for inflation, the increase was 26%, the researchers reported as a late-breaking abstract at the National Kidney Foundation’s 2017 Spring Clinical Meeting.

More than three-fourths of the VA’s aggregate spending each year on CKD patients was dedicated to patients with either stage 3a or 3b disease. However, the average cost per patient to treat increased with each worsening stage of CKD, with non-dialysis stage 5 CKD being the most expensive.

To all those who served, whether or not you developed kidney disease, thank you from the bottom of my heart.

 

Until next week,
Keep living your life!

Snap, Crackle, and Pop

I haven’t taken to eating boxed cereals, although I do thank Rice Krispies for coming up with that slogan. I’ve discovered there are drawbacks to being independent that I hadn’t thought about… like the one that landed me in my new chiropractor’s office where I heard those sounds coming from within my body.

It started off so innocently. Our outdoor swing bit the dust so Bear took it apart. I decided our hammock chairs would look great where the swing had been. Ah, but Bear was busy moving the parts of the swing from that part of the patio.

I could do it if I went slowly. So I pulled one of them partway down the walkway, then pulled the second one. Of course, pulling meant going backwards. Why I was looking forward instead of backward, I’ll never know. I managed to trip over the foot of the first hammock frame.

My arm was scraped from one end to the other. My thigh had the biggest black and blue mark I’d seen on my body to date. But worse of all, my neck hurt. No problem, I figured. I’ll just wash out the scrapes, ice the neck and the thigh and I’ll be fine. But I wasn’t. Hence, the chiropractic visits.

It’s been two weeks. The arm is almost healed, the black and blue mark moving toward disappearing and the neck barely hurts at all. Hmmm, if chiropractic is so good for these aches and pains, could it also be good for my kidneys?
The Medical Dictionary of The Free Dictionary at http://medical-dictionary.thefreedictionary.com/chiropractic defines chiropractic for us:

Chiropractic is from Greek words meaning done by hand. It is grounded in the principle that the body can heal itself when the skeletal system is correctly aligned and the nervous system is functioning properly. To achieve this, the practitioner uses his or her hands or an adjusting tool to perform specific manipulations of the vertebrae. When these bones of the spine are not correctly articulated, resulting in a condition known as subluxation, the theory is that nerve transmission is disrupted and causes pain in the back, as well as other areas of the body.

Chiropractic is one of the most popular alternative therapies currently available. Some would say it now qualifies as mainstream treatment as opposed to complementary medicine. Chiropractic treatment is covered by many insurance plans and in 2004, the U.S. Department of Veterans Affairs announced full inclusion of chiropractic care for veterans. It has become well-accepted treatment for acute pain and problems of the spine, including lower back pain and whiplash.…

I didn’t see anything in my research to connect this type of medicine and the kidneys, so I tried thinking about it another way. What are the major causes of Chronic Kidney Disease? We know diabetes is the first and hypertension the second.

I took a look at NaturalNews.com (https://www.naturalnews.com/035546_chiropractic_blood_sugar_diabetes.html) and found the following:

The average person may not recognize how diabetes and chiropractic are connected. What does the back have to do with blood sugar? Often, an electrician understands this faster than most people. Interfere with the current flowing through the wires and the appliances or areas of the house lose normal function or might even catch fire.

If the nerve supply from the upper neck or middle back (the two areas that supply the pancreas) are disturbed, pancreatic function suffers; maybe in its ability to produce enzymes to digest proteins, fats and carbohydrates, or maybe insulin production, or both. Blood sugar and digestion become unbalanced, resulting in either in diabetes or hypoglycemia.

Nutritionist Carolyn Heintz further explains:

Chiropractic care might be helpful to diabetics if problems in the spine affect blood flow to the pancreas. The pancreas releases insulin in the body which is necessary to regulate proper levels of glucose in the blood. If the pancreas is not receiving enough oxygen and nutrients through proper blood circulation, perhaps this might have an effect on insulin production.

Another way chiropractic treatment might help those who suffer from diabetes is by alleviating pressed nerves on the spine to allow for a regenerated connection between the brain and the systems that are involved in the endocrine system and a body’s metabolism. Also, when the nervous system is free to work properly, the body can work to heal itself better.

You can read the rest of her article at http://belviderechiropractic.com/conditions/can-chiropractic-care-help-treat-diabetes/.

This makes sense. If there’s a ‘short’ in the system, it’s just not going to work. If you correct the short allowing the current to flow, you could be shortcutting diabetes… and maybe Chronic Kidney Disease.

Well, how about hypertension? How can chiropractic help with that?

This caught my eye, but it will need some explaining. I discovered it at https://www.echiropractor.org/chiropractic-blood-pressure/.

Upper cervical chiropractic treatment, “performed by a mechanical chiropractic adjusting device” was noted to decrease both systolic and diastolic blood pressures, and these findings were published in 1988…. More recently, it was found that the Atlas Adjustment lowered blood pressure with the effectiveness of “two blood pressure medications given in combination”, according to Dr. George Bakris. The drop in blood pressure as a result of the realignment of the Atlas vertebra was “an average of 14 mm Hg greater drop” (systolic) and “an average 8 mm Hg greater drop” (diastolic), compared to “sham-treated patients”.

Cervical means “relating or belonging to the neck, or to any body part that resembles a neck,” according to Encarta Dictionary. In the paragraph above, it means the neck. Here’s a picture of a mechanical chiropractic adjusting device. It’s used if more than finger or hand pressure is needed for spinal adjustment and sounds almost like a stapler. It doesn’t break the skin, simply manipulates the spine.

The Atlas Adjustment is a little harder to explain. The topmost vertebra of your neck is called the Atlas because it holds up the globe better known as your head. Remember your Greek mythology? Atlas supported the world. It’s this vertebra that is being manipulated.

I, for one, am convinced. I was wondering whether or not to continue the visits since I’m feeling better. It sounds like something I should do. How about you?

Until next week,
Keep living your life!

There’s Always the Exception

And this is one of them. We all know I don’t write about dialysis, but I’ve been receiving bunches of emails lately asking if I would consider including this product, that book, or the other social media kidney disease awareness item. My response is usually thank you, but I don’t allow advertising or product promotion on the blog. When Dr. Bruce Greenfield, a Los Angeles nephrologist with 37 years experience, sent me a link to his dialysis rap with the following message, I was forced to think twice: “My goal is to reach every dialysis patient in America, in part to make people more informed, in part to shed a little light into their world in a fun way, and of course- to make them smile!”

But why? Are smiles and laughter necessary in the treatment of illness? According to Dr. Jordan Knox, a resident in family medicine, they are. This is how he summarized the need for physicians to use humor in his essay on KevinMD.com at http://www.kevinmd.com/blog/2017/10/theres-place-humor-medicine.html last Friday: “Patch Adams, MD is one of the best-known physicians to use humor in healing. He focuses more on silliness to reach pure joy, nourishing the soul as much as the body. There is something about the contrast, when silliness uproots the expectation of seriousness, that is more powerful than pure humor alone. I think that’s why humor can be so powerful in the doctor’s office; because the expectation is all business, seriousness, and authority. Humor can break down those rigid roles of “patient” and “doctor,” or “team leader” and “team member.” It can level the playing field and align people on the same side, working toward a shared goal.”

Being a Groucho Marx fan, I keep thinking of his one liner, “A clown is like an aspirin, only he works twice as fast.” Hey, CKD patients can’t take aspirin (if they’re NSAIDS or nonsteroidal anti-inflammatory drugs), so why not take humor instead?

But what happens to us physically when we laugh? I checked in with my old standby, The Mayo Clinic, at https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress-relief/art-20044456?pg=1 and found the following information about laughter and your body.

Short-term benefits

Laughter can:

Stimulate many organs. Laughter enhances your intake of oxygen-rich air, stimulates your heart, lungs and muscles, and increases the endorphins that are released by your brain.

Activate and relieve your stress response. A rollicking laugh fires up and then cools down your stress response, and it can increase your heart rate and blood pressure. The result? A good, relaxed feeling.

Soothe tension. Laughter can also stimulate circulation and aid muscle relaxation, both of which can help reduce some of the physical symptoms of stress.

Keep in mind that I am not a dialysis patient but hope that this rap is helpful to those who are. Sit back, turn up the speakers, and have some short term benefits courtesy of Dr. Greenfield.

I laughed… and I learned, but I was really interested in the effects of laughter that could help Chronic Kidney Disease patients in the early and moderate stages. WebMD at https://www.webmd.com/balance/features/give-your-body-boost-with-laughter#2 had a bit more information about that. Mind you, these results are observational or the results of very small studies.

Blood flow. Researchers at the University of Maryland studied the effects on blood vessels when people were shown either comedies or dramas. After the screening, the blood vessels of the group who watched the comedy behaved normally — expanding and contracting easily. But the blood vessels in people who watched the drama tended to tense up, restricting blood flow.

Immune response. Increased stress is associated with decreased immune system response, says Provine. (He’s a professor of psychology and neuroscience at the University of Maryland, Baltimore County and author of Laughter: A Scientific Investigation.) Some studies have shown that the ability to use humor may raise the level of infection-fighting antibodies in the body and boost the levels of immune cells, as well.

Blood sugar levels. One study of 19 people with diabetes looked at the effects of laughter on blood sugar levels. After eating, the group attended a tedious lecture. On the next day, the group ate the same meal and then watched a comedy. After the comedy, the group had lower blood sugar levels than they did after the lecture.

Reminder: Diabetes is the number one cause of CKD. CKD means a compromised immune system. Healthy blood flow is necessary for healthy kidneys.

Tomorrow is Halloween (Happy birthday to my brother Paul!), so I wanted to try my hand at some macabre humor.

 

Obituary –

The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 died peacefully on October 20th, 2017, on Amazon.com and B & N.com at the age of three. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 is survived by SlowItDownCKD 2011 & SlowItDownCKD 2012, which were both born of a need for larger print, more comprehensive indexes, and a less wieldy book to hold. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 was preceded by What Is It and How Did I Get It? Early Stage Chronic Kidney DiseaseThe Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 gave birth to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, SlowItDownCKD 2015 and SlowItDownCKD 2016. Flowers and condolences in the form of Chronic Kidney Disease Awareness may be sent to any and all vehicles for spreading awareness of this disease.

Researching laughter and CKD led to only laughter and dialysis sites. I wasn’t satisfied with that and kept looking only to find this generalized, but easily understood, image from The Huffington Post Partners at .

I don’t think we can forget that anything that’s good for your heart will benefit the kidneys. Since CKD is an inflammatory disease, reducing inflammation of any kind in the body can only be a good thing. Look at that! Both bad cholesterol and systolic blood will be lowered. These are all kidney related. Hypertension is the second most common cause of CKD. Cholesterol makes the heart work harder, which can raise your blood pressure. Uh-oh.

Another thing I realized is that if I find something wrong, you know like the termite invasion or the a/c breaking in 100 degree weather, my first response is laughter. I never knew why. Hmmm, maybe I’ve been protecting my body all along.

Until next week,

Keep living your life!

Not a Drug, a Medical Food

On a Facebook Chronic Kidney Disease support page, I mentioned that I use a medical food to help with my osteoarthritis. And then the questions started flying. Those of us who would prefer no more Rx drugs seemed the most interested. I already take Rx drugs for both hyperlipidemia and hypertension. I didn’t want to add yet another Rx drug that may have side effects. This is a lot safer for my poor little kidneys.

Let’s start at the beginning with a definition. According to the Free Dictionary’s Medical Dictionary at http://medical-dictionary.thefreedictionary.com/Medical+food, a medical food is:
A food formulated by the selective use of nutrients and manufactured for the dietary treatment of a specific condition or disease

I am not referring to dietary supplements here, but rather a replacement for a drug that can be prescribed for a specific disease. In my case, it’s osteoarthritis. CoverMyMedicalFoods.com explains that:

Medical foods are prescription medicines made from natural molecules found in food.

One pill can equal natural ingredients found in five pounds of fruits and vegetables.

Purified, natural ingredients equal fewer side effects.

Large amounts of these purified molecules help the body fight disease.

Unlike dietary supplements or Rx drugs, the ingredients are designated G.R.A.S. “Generally Recognized as Safe,” which is the highest standard of safety at the FDA.

Also unlike dietary supplements or Rx drugs, medical foods are intended for a disease or condition that has distinctive nutritional requirements.

Like Rx drugs, but unlike dietary supplements, they must be supervised by a physician and dispensed by prescription. (My rheumatologist performs this task for me.)

Pharmacist Gayle Nicholas Scott explains The Federal Food and Drug Administration’s (FDA) rules for medical foods on Medscape at https://www.medscape.com/viewarticle/744036.

The FDA specifies that medical foods are foods specifically formulated for dietary management of diseases or conditions with distinctive nutritional needs that cannot be met by diet alone. Generally, a product must meet the following criteria to be labeled a “medical food”:
• A specific formulation (as opposed to a naturally occurring foodstuff in its natural state) for oral or tube feeding;
• Labeled for the dietary management of a specific medical disorder, disease, or condition with distinctive nutritional requirements;
• Intended for use under medical supervision; and
• Intended only for a patient receiving active and ongoing medical supervision for a condition requiring medical care on a recurring basis so that instructions on the use of the medical food can be provided.

This is all getting a bit technical so I decided to go to my medical food’s website for an example. I take Limbrel. This is from their website (as mentioned) at http://www.limbrel.com/hcp-medical-food.php.

Limbrel is a prescription medical food product for the daily nutritional management of the metabolic aspects of osteoarthritis. Limbrel is not a drug, nor a dietary supplement. Because Limbrel is a Medical Food (MF) product, we are required to describe it differently from how a drug or dietary supplement is described.

By statutory and regulatory definition, product claims must be explicitly different for medical food products versus drugs versus dietary supplements. Generally, Medical Food claims reference the “dietary management” or “distinctive nutritional requirements” of a particular disease or the metabolic processes of that disease, whereas drug claims reference “curing, treating, preventing or mitigating” the effects or symptoms of a particular disease, while dietary supplement claims reference “supporting” healthy function of the body or particular body organ or system.

First, osteoarthritis patients are shown to have distinctive nutritional requirements and metabolic imbalances. Then, for example, a Medical Food may claim the dietary management of metabolic processes of osteoarthritis, whereas a drug may claim the reduction of osteoarthritis pain, while a dietary supplement may claim the support of overall health of joints. A Medical Food must meet the distinctive nutritional requirements of a disease through dietary management, whereas a drug may address the symptoms of a disease or its treatment or prevention of the disease.

Claims for both MFs and drugs must be supported by solid laboratory and clinical data. But, by contrast, for a drug, the safety of the product and both the therapeutic claims and the ingredients must be pre-approved by the FDA through extensive clinical testing. MFs have up-front safety obtained through GRAS (Generally Recognized As Safe) status of the ingredients, including use of the food or food additive or component in perhaps millions of people, whereas drugs have unproven safety that must first be shown in animals and then be tested in human clinical trials, which typically exclude wider populations with various health problems. Medical Food ingredients have GRAS designation, the highest FDA standard of safety given to food. Most MFs are also tested in clinical trials to confirm their “traditional use” safety.

The use of Medical Food, regulated by the FDA, represents an entirely different approach to managing diseases. For example, unlike drugs, Limbrel does not treat or mask the symptoms of osteoarthritis. Instead, Limbrel manages the underlying metabolic processes of osteoarthritis to restore the proper metabolic balance of inflammatory metabolites at the cellular level, and thereby promotes normal physiologic function.

A little reminder is in order here: metabolic has to do with your metabolism. The Merriam Webster Dictionary at https://www.merriam-webster.com/dictionary/metabolism defines that as
a: the sum of the processes in the buildup and destruction of protoplasm; specifically: the chemical changes in living cells by which energy is provided for vital processes and activities and new material is assimilated…
• Regular exercise can help to increase your metabolism.
b: the sum of the processes by which a particular substance is handled in the living body
c: the sum of the metabolic activities taking place in a particular environment
• the metabolism of a lake

I believe it’s the second definition that concerns us here.

 

What I can say for certain is that, at one point, I doubted it was worth the $50 a month to pay for this medical food so I stopped it. That was a mistake. In retrospect, it seemed that my body’s reaction to stopping was instantaneous… which I doubt is possible. But my elbows started to hurt too much, so I got my prescription. While I may feel some aches and pains on those rare rainy Arizona days, I am relatively pain free the rest of the time.

Until next week,
Keep living your life!

Sex?

I know, I know. When you see that question on an application, you want to answer ‘yes,’ but you’re only given the choice of male or female. Well, at least that’s my experience. Okay, got that out of the way.

Way back in 2011, the following was included in my first Chronic Kidney Disease book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. This was way before the website, Facebook page, the blog, the Instagram, Pinterest, Twitter, and LinkedIn accounts. Way before the articles, radio shows, and interviews, book signings, and talks about CKD. Come to think of it, this was way before SlowItDownCKD was born.

I haven’t found too much about sex that’s different from the problems of non-CKD patients although with this disease there may be a lower sex drive accompanied by a loss of libido and an inability to ejaculate. Usually, these problems start with an inability to keep an erection as long as usual. The resulting impotency has a valid physical, psychological or psycho-physical cause.

Some of the physical causes of impotence, more recently referred to as Erectile Dysfunction [E.D.] for a CKD patient could be poor blood supply since there are narrowed blood vessels all over the body. Or maybe it’s leaky blood vessels. Of course, it could be a hormonal disturbance since the testicles may be producing less testosterone and the kidneys are in charge of hormones….

While E.D. can be caused by renal disease, it can also be caused by diabetes and hypertension. All three are of importance to CKD patients. Sometimes, E.D. is caused by the medications for hypertension, depression and anxiety. But, E.D. can also be caused by other diseases, injuries, surgeries, prostate cancer or a host of other conditions and bodily malfunctions. Psychologically, the problem may be caused by stress, low self-esteem, even guilt to name just a few of the possible causes….

Women with CKD may also suffer from sexual problems, but the causes can be complicated. As with men, renal disease, diabetes and hypertension may contribute to the problem. But so can poor body image, low self-esteem, depression, stress and sexual abuse. Any chronic disease can make a man or a woman feel less sexual….

Common sense tells us that sex or intimacy is not high on your list of priorities when you’ve just been recently diagnosed….

Sometimes people with chronic diseases can be so busy being the patient that they forget their partners have needs, too. And sometimes, remembering to stay close, really close as in hugging and snuggling, can be helpful….

Well, what’s changed since I was writing What Is It and How Did I Get It? Early Stage Chronic Kidney Disease? in 2010?

The National Kidney Foundation at https://www.kidney.org/atoz/content/sexuality now includes the following on their website:

It’s important to remember that people with kidney failure can have healthy marriages and meaningful relationships. They can fall in love, care for families, and be sexual. Staying intimate with those you love is important. It’s something everyone needs.

Many people think that sexuality refers only to sexual intercourse. But sexuality includes many things, like touching, hugging, or kissing. It includes how you feel about yourself, how well you communicate, and how willing you are to be close to someone else.

There are many things that can affect your sexuality if you have kidney disease or kidney failure — hormones, nerves, energy levels, even medicine. But there are also things you and your healthcare team can do to deal with these changes. Don’t be afraid to ask questions or get help from a healthcare professional.

DaVita at https://www.davita.com/kidney-disease/overview/living-with-ckd/sexuality-and-chronic-kidney-disease/e/4895 also offers advice:

Once again, it’s important to remember, you are not alone.

There are no limits with regard to sexual activities you may engage in as a patient with renal disease, as long as activity does not place pressure or tension on the access site, causing damage. (Me: This is for advanced CKD.)

If you are sexually active, practicing safe sex and/or using birth control are needed, even if you think you may be physically unable to have children.

Activities such as touching, hugging and kissing provide feelings of warmth and closeness even if intercourse is not involved. Professional sex therapists can recommend alternative methods as well.

Keeping an open mind and having a positive attitude about yourself and your sexuality may lower the chances of having sexual problems.

There are both medical and emotional causes for sexual dysfunction. The reason for your dysfunction can be determined through a thorough physical exam in addition to an assessment of your emotional welfare and coping skills.

Relaxation techniques, physical exercise, writing in a journal and talking to your social worker or a therapist can help you to feel better about your body image and/or sexual dysfunction.

Resuming previous activities, such as dining out or traveling, as a couple or single adult, can be helpful.

Provide tokens of affection or simple acts of kindness to show you care.

Communicate with your partner or others about how you feel.

According to the Kidney Foundation of Canada at file:///C:/Users/Owner/AppData/Local/Packages/Microsoft.MicrosoftEdge_8wekyb3d8bbwe/TempState/Downloads/Sexuality%20and%20CKD.pdf, these may be the causes of sexual problems in CKD.

Fatigue is a major factor. Any chronic illness is tiring, and chronic kidney disease, which is often accompanied by anemia and a demanding treatment, practically guarantees fatigue.

Depression is another common issue. Almost everyone experiences periods of depression, and one of the symptoms of depression is loss of interest in sexual intimacy.

Medications can also affect one’s ability or desire to have intercourse. Since there may be other medications which are just as effective without the side effect of loss of sexual function or desire, talk to your doctor about your pills.

Feelings about body image Having a peritoneal catheter, or a fistula or graft, may cause some people to avoid physical contact for fear of feeling less attractive or worrying about what people think when they look at them. (Me: Again, this is for late stage CKD.)

Some diseases, such as vascular disease and diabetes, can lead to decreased blood flow in the genital area, decreased sexual desire, vaginal dryness and impotence.

It looks like the information about CKD and sexuality hasn’t changed that much, but it does seem to be more available these days.

Until next week,
Keep living your life!

Book It!

Every once in a great while, I’ll come across a Chronic Kidney Disease book that I want to share. I think there were only three or four of these in the last six years. Today, I add another one. Dr. Kang, the author, is a local doctor. That was the first thing that caught my eye.

I thought I would be reading the usual information … and I did, but it was written with verve and included some information I hadn’t known. So I did the obvious. I contacted the good doctor to see if he’d be interested in sharing his knowledge with us on the blog. I’m so very glad he agreed.

Dr. Mandip S.Kang, is not only a senior partner in Southwest Kidney Institute right here in Phoenix, but he is also a Fellow in the American Society of Nephrologists I like so much. Just last week, I gleefully accepted their invitation to join the Twitter chat (#AskASN) about staging in CKD and often refer to them in both my blogs and books. He is also the author of the IBPA Gold Award winning book: The Doctor’s Kidney Diets……A Nutritional Guide to Managing and Slowing The Progression of Chronic Kidney Disease, the book that caught my eye.

This is what he wrote for us:

Receiving a diagnosis of kidney disease is not a death sentence for patients, but is often overwhelming and a life changing event. Patients are often confused and the information they receive from different healthcare providers may not be the same. Patients often ask, “What should I do?”

Having experience as a former Assistant Clinical Professor of Medicine at University of Utah School of Medicine and currently as a Senior Nephrologist (kidney specialist), I have gained some insight into how to alleviate my patients’ fears and I have come up with a four point plan that I try to teach my kidney patients. I believe that the role of the physician is to be a teacher and a coach as patients navigate their way into the complexities of a Chronic Kidney Disease diagnosis. I believe that every kidney specialist should have a chalk board in the patient exam rooms and lay out the plan for his or her approach to their patients just like we were taught in schools.

Here is a four point plan that all kidney patients should remember as they visit their kidney specialists and at home. The acronym for the plan is very simple: D.A.M.E.

1. ‘D’ in the acronym stands for diet. The reason I chose diet first comes from the Chinese wisdom in treating any disease: ‘He that takes medicine and neglects diet, wastes the skills of the physician.’ Patients must be taught what the kidney diet is and why they need to follow it for the rest of their lives. Since the kidney diet is complex, they must be provided with educational materials that outline the diet and be strongly encouraged to visit a kidney dietitian who will tell them what and how much to eat.

Dietitians and kidney doctors will teach them about the benefits of eating fresh foods and avoiding processed foods. Patients should remember that the ‘p’ in ‘p’rocessed foods is akin to ‘p’acked with calories. Learning to read a Nutrition Facts label is a must if the doctor wants to do all he or she can to help the patient slow down – and sometimes halt – the progression of kidney disease. It is important to remember that in the earlier stages of kidney disease, the diet may not be as strict – but if progression of the disease is noted, then dietary modifications are more stringent and frequent laboratory tests may need to be performed to assess progress.

2. ‘A’ in the four point CKD plan stands for activity. “What is activity?” you might say. It could mean walking more, taking more steps daily, joining a gym, hiking, biking or any activity that keeps you on your feet. As most Americans already know, the obesity rates in the USA are skyrocketing leading to most chronic health conditions such as Chronic Kidney Disease, Coronary Artery Disease, Stroke, Arthritis, Lung Disease, etc. These chronic health conditions stem from lack of activity and consuming excessive calories. Many patients lead a sedentary lifestyle such as watching TV for long hours which leads to worsening of their health issues. Patients should be encouraged to do the activities they enjoy the most such as dancing, or walking in a park or on a beach. Patients should weigh themselves on a weekly basis to monitor their weight.

3. ‘M’ in the acronym stands for medications that your doctor prescribes. Your doctor may also tell you not to take certain over the counter medications that may harm your kidneys such as Advil, Motrin, Aleve, Ibuprofen, Celebrex, Prilosec, herbal remedies, etc. I encourage all patients to memorize their medications and keep a list with them at all times. Remember that all medications are prescribed because the benefit to the patient outweighs the risk and no medication is entirely safe; therefore, it should be taken as prescribed and any side effects reported to your doctor. You should not take any new medicine unless it has been cleared by your kidney specialist.

4. ‘E’ in the above acronym stands for education. This is the key element in the D.A.M.E plan to treat patients with CKD. Unless the patient has a clear understanding of their disease process, labs, treatment plan, and the role of diet, activity, and medications, they will not be successful in managing and slowing the progression of Chronic Kidney Disease. How well a patient does will depend on their knowledge of their disease and if they comply with the instructions given to them by the kidney doctors.

I hope that all kidney doctors and patients keep the D.A.M.E. acronym in mind. Patients who are active participants in their care lead healthier and productive lives. I wish all of the readers well.

I hadn’t heard of the D.A.M.E. method before but I like it, especially “the ‘p’ in ‘p’rocessed foods is akin to ‘p’acked with calories.” Many thanks, Dr. Kang, for introducing this common sense theme to us.

Until next week,
Keep living your life!