Stay in the Blood, PLEASE

Let’s finish out this lazy, hazy summer month of August with another reader question. This one was quite straight forward:

“Any advice to slow down protein leaking into urine. Hard to build muscle when you keep excreting protein”

The condition of leaking protein into your urine is called proteinuria. That’s almost self-explanatory. The root of the word actually says protein while the suffix (group of related letters added to the end of a word which changes its meaning) is defined as,

“-uria.

  1. suffix meaning the “presence of a substance in the urine”: ammoniuria, calciuria, enzymuria.
  2. combining form meaning “(condition of) possessing urine”: paruria, polyuria, pyuria.

Thank you to the Medical Dictionary at https://medical-dictionary.thefreedictionary.com/-uria for the definition of uria.

Okay, so we know that protein is leaking into the urine. Not good. Why? We need it in our blood, not excreted in our urine. The following is from a previous blog on proteinuria. I used the dropdown menu in “Topics” on the right side of the blog page to find it or any other topic listed there. You can, too.

“According to WebMD at https://www.webmd.com/men/features/benefits-protein#1:

‘Protein is an important component of every cell in the body. Hair and nails are mostly made of protein. Your body uses protein to build and repair tissues. You also use protein to make enzymes, hormones, and other body chemicals. Protein is an important building block of bones, muscles, cartilage, skin, and blood.’”

Got it. Our reader is correct; it is hard to build muscle if you’re “excreting protein.” Now what? I usually stick to medical sites but this comment from Healthfully at https://healthfully.com/170108-how-to-reduce-excess-protein-in-the-kidney.html caught my eye.

“Continue monitoring how much protein your kidneys are spilling for several months. Since colds and infections can cause transient increases in protein, you will want at least several months of data.”

As Chronic Kidney Disease patients, we usually have quarterly urine tests… or, at least, I do. My urine protein level is included. I did not know that colds and infections are a factor here. Here’s an old urine analysis of mine. You can see Protein, Urine fourth from the bottom.

Component Your Value Standard Range
Color, Urine Yellow Colorless, Light Yellow, Yellow, Dark Yellow, Straw
Clarity, Urine Clear Clear
Glucose, Urine Negative mg/dL Negative mg/dL
Bilirubin, Urine Negative Negative
Ketones, Urine Negative mg/dL Negative mg/dL
Specific Gravity, Urine 1.013 1.007 – 1.026
Blood, Urine Negative Negative
pH, Urine 7.0 5.0 – 8.0
Protein, Urine Negative mg/dL Negative mg/dL
Urobilinogen, Urine <2.0 mg/dL <2.0 mg/dL
Nitrite, Urine Negative Negative
Leukocyte Esterase, Urine Negative Negative

 

Let’s say our reader did not have a cold or infection. What else could she do to slow down this loss of protein via her urine?

The American Kidney Fund at http://www.kidneyfund.org/kidney-disease/kidney-problems/protein-in-urine.html suggests the following:

“If you have diabetes or high blood pressure, the first and second most common causes of kidney disease, it is important to make sure these conditions are under control.

If you have diabetes, controlling it will mean checking your blood sugar often, taking medicines as your doctor tells you to, and following a healthy eating and exercise plan. If you have high blood pressure, your doctor may tell you to take a medicine to help lower your blood pressure and protect your kidneys from further damage. The types of medicine that can help with blood pressure and proteinuria are called angiotensin-converting enzyme inhibitors (ACE inhibitors) and angiotensin receptor blockers (ARBs).

If you have protein in your urine, but you do not have diabetes or high blood pressure, an ACE inhibitor or an ARB may still help to protect your kidneys from further damage. If you have protein in your urine, talk to your doctor about choosing the best treatment option for you.”

So far, we’ve discovered that frequent urine testing, determining if you have a cold or infection, keeping your diabetes and blood pressure under control, and/or ACE inhibitors may be helpful. But here’s my eternal question: What else can slow down the spilling of protein into our urine?

The Kidney & Urology Foundation of America, Inc. at http://www.kidneyurology.org/Library/Kidney_Health/Proteinuria.php has some more ideas about that:

“In addition to blood glucose and blood pressure control, restricting dietary salt and protein intake is recommended. Your doctor may refer you to a dietitian to help you develop and follow a healthy eating plan.”

As CKD patients, we know we need to cut down on salt intake. I actually eliminate added salt and have banned the salt shakers from the kitchen. No wonder no one but me likes my cooking. You do lose your taste for salt eventually. After all these years, I taste salt in restaurant food that makes that particular food unpalatable to me.

Hmmm, it seems to me that a list of high protein foods might be helpful here.

POULTRY…

  • Skinless chicken breast – 4oz – 183 Calories – 30g Protein – 0 Carbs – 7g Fat
  • Skinless chicken (Dark) – 4 oz – 230 Calories – 32g Protein – 0 Carbs – 5g Fat
  • Skinless Turkey (White) – 4 oz – 176 Calories – 34g Protein – 0 Carbs – 3.5g Fat
  • Skinless Turkey (Dark) – 4 oz – 211 Calories – 31g Protein – 0 Carbs – 8.1 g Fat

FISH…

  • Salmon – 3 oz – 119 Calories – 17g Protein – 0 Carbs – 5.5g Fat
  • Halibut – 3 oz – 91 Calories – 18g Protein – 0 Carbs – 3g Fat
  • Tuna – 1/4 cup – 70 Calories – 18g Protein – 0 Carbs – 0g Fat
  • Mackerel – 3 oz – 178 Calories – 16.1g Protein – 0 Carbs – 12g Fat
  • Anchovies (packed in water) – 1 oz – 42 Calories – 6g Protein – 1.3g Fat
  • Flounder – 1 127g fillet – 149 Calories – 30.7g Protein – 0 Carbs – 0.5g Fat (High Cholesterol)
  • Swordfish – 1 piece 106g – 164 Calories – 26.9g Protein – 0 Carbs – 1.5g Fat (High Cholesterol)
  • Cod – 1 fillet 180g – 189 Calories – 41.4g protein – 0 Carbs – 0.3g Fat (High Cholesterol)
  • Herring – 1 fillet 143g – 290 Calories – 32.9g Protein – 0 Carbs – 3.7g Fat (High Cholesterol)
  • Haddock – 1 fillet 150g – 168 Calories – 36.4g Protein – 0 Carbs – 0.3g Fat (High Cholesterol)
  • Grouper – fillet 202g – 238 Calories – 50.2g Protein – 0 Carbs – 0.6g Fat (High Cholesterol)
  • Snapper – 1 fillet 170g – 218 Calories – 44.7g Protein – 0 Carbs – 0.6g Fat (High Cholesterol)

BEEF…

  • Eye of round steak – 3 oz – 276 Calories – 49g Protein – 2.4g Fat
  • Sirloin tip side steak – 3 oz -206 Calories – 39g Protein – 2g Fat
  • Top sirloin – 3 oz – 319 Calories – 50.9g Protein – 4g Fat
  • Bottom round steak – 3 oz – 300 Calories – 47g Protein – 3.5g Fat
  • Top round steak – 3 oz – 240 Calories – 37g Protein – 3.1g Fat

PORK…

  • Pork loin – 3 oz – 180 Calories – 25g Protein – 0 Carbs – 2.9g Fat (High in cholesterol)
  • Tenderloin– 3 oz – 103 Calories – 18g Protein – 0.3g Carbs – 1.2g Fat (High in cholesterol)

GAME MEATS…

  • Bison – 3 0z – 152 Calories – 21.6g Protein – 0 Carbs – 3g Fat
  • Rabbit – 3 oz – 167 Calories – 24.7g Protein – 0 Carbs – 2.0g Fat
  • Venison (Deer loin broiled) – 3 oz – 128 Calories – 25.7g Protein – 0 Carbs – 0.7g Fat

GRAINS…

  • Cooked Quinoa – 1/2 cup – 115 Calories – 4.1g Protein – 22 Carbs – 2g Fat
  • Cooked Brown Rice – 1/2 cup – 106 Calories – 2.7g Protein – 23 Carbs – 0.7g Fat
  • Regular Popcorn (Air Popped no oil) – 1 cup – 60 Calories – 2g Protein – 11 Carbs – 0.6g Fat
  • Steel cut Oatmeal – 1 cup – 145 Calories – 7g Protein – 25g Carbs – 2.5g Fat
  • Multi grain bread – 1 slice – 68.9 Calories – 3.5g Protein – 11.3g Carbs – 0.2g Fat

BEANS (All nutrition values calculated for cooked beans)…

  • Tofu – 1/2 cup – 98 Calories – 11g Protein – 2g Carbs – 6g Fat
  • Lentils – 1/2 cup – 119 Calories – 9g Protein – 20g Carbs – 0.3g Fat
  • Black beans – 1/2 cup – 115 Calories – 7.8g Protein – 20 Carbs – 0.4g Fat
  • Kidney beans – 1/2 cup – 111 Calories – 7.2g Protein – 20.2 Carbs – 0.4g Fat
  • Lima beans – 1/2 cup – 110 Calories – 7.4g Protein – 19.7 Carbs – 0.3g Fat
  • Soy beans – 1/2 cup – 133 Calories – 11g Protein – 10 Carbs – 5.9g Fat

DAIRY…

  • Skim milk – 1 cup – 90 Calories – 9g Protein – 12g Carbs – 4.8g Fat
  • Low fat Yogurt – 1 cup – 148 Calories – 12g Protein – 17Carbs – 3.2g Fat
  • Non fat Yogurt – 1 cup – 130 Calories – 13g Protein – 16.9 Carbs – 0.4 Fat
  • Cheddar cheese – 1 oz – 116 Calories – 7g Protein – 0.4 Carbs – 9.2g Fat
  • Low fat Cottage Cheese – 1/2 cup – 82 Calories – 14g Protein – 3.1g Carbs – 0.7g Fat
  • One large egg – 73 Calories – 6.6g Protein – 0 Carbs – 6g Fat
  • Low fat Milk – 1 cup – 119 Calories – 8g Protein – 12 Carbs – 4.6g Fat

NUTS & SEEDS…

  • Raw Almonds – 1 oz about 22 whole – 169 Calories – 22g Carbs – 6.2g Protein – 1.1g Fat
  • Raw Pistachios – 1 oz about 49 Kernels – 157 Calories – 7.9g Carbs – 5.8g Protein – 1.5g Fat
  • Pumpkin seeds – 1 oz – 28g about 100 hulled seeds – 151 Calories – 5g Carbs – 6.0g Protein – 2.4g Fat
  • Raw Macadamia nuts – 1 oz about 10- 12 kernels – 203 Calories – 4g Carbs – 2.2g Protein – 3.4g Fat
  • Chia seeds – 1 oz – 137 Calories – 12.3g Carbs – 4.4g Protein – 0.9g Fat
  • Walnuts – 1 cup in shell about 7 total – 183 Calories – 3.8g Carbs – 4.3g Protein – 1.7g Fat
  • Raw Cashews1oz – 28g – 155 Calories – 9.2g Carbs – 5.1g Protein – 2.2g Fat

MORE HIGH PROTEIN FOODS…

  • Natural peanut butter – 1 oz – 146 Calories – 7.3g Protein – 10g Carbs – 1.6g Fat
  • Natural almond butter – 1 tbsp – 101 Calories – 2.4g Protein – 3.4 Carbs – 0.9g Fat
  • Natural cashew butter – 1 tbsp – 93.9 Calories – 2.8g Protein – 4.4 Carbs – 1.6g Fat
  • Hummus – 1 oz – 46.5 Calories – 2.2g Protein – 4.0g Carbs – 0.4g Fat
  • Tempeh Cooked – 1 oz – 54 Calories – 5.1g Protein – 2.6g Carbs – 1.0g Fat

There’s a vegan list on the same site. Be leery of protein sources that are not on your kidney diet.

Until next week,

Keep living your life!

 

But Why?

As Chronic Kidney Disease patients, we all know that proteinuria is one indication of our disease. Would you like a reminder about what proteinuria is? Here’s one from The American Kidney Fund at http://www.kidneyfund.org/kidney-disease/kidney-problems/protein-in-urine.html:

“Healthy kidneys remove extra fluid and waste from your blood, but let proteins and other important nutrients pass through and return to your blood stream. When your kidneys are not working as well as they should, they can let some protein (albumin) escape through their filters, into your urine. When you have protein in your urine, it is called proteinuria (or albuminuria). Having protein in your urine can be a sign of nephrotic syndrome, or an early sign of kidney disease.”

I used to think that’s all it was: an indicator of CKD. That is until my occupational therapist and I got to talking about the edema caused by neuropathy.

Ah! Flash! We did also talk about Havimat which I wrote about last week and I checked on a number of sites to see if it were safe for an active tumor. The consensus of the sites agreed it was safe to use on someone with an active tumor that was being treated as long as it was not used on the location of the tumor itself. I feel better now about having had three sessions with Havimat since the occupational therapist was careful not to use it anywhere near my pancreas – the site of the tumor.

But I digress. Back to the topic at hand: proteinuria. It seems that protein is needed in the body, rather than being excreted in the urine. You guessed it. My question became the topic of today’s blog: But Why?

According to WebMD at https://www.webmd.com/men/features/benefits-protein#1:

“Protein is an important component of every cell in the body. Hair and nails are mostly made of protein. Your body uses protein to build and repair tissues. You also use protein to make enzymes, hormones, and other body chemicals. Protein is an important building block of bones, muscles, cartilage, skin, and blood.”

Okay, got it that protein is very necessary but what does that have to do with the chemotherapy I had that seemed to cause the proteinuria problem?  After looking at bunches of different sites (Today’s blog is taking a very long time to write.), I gleaned a little hint here and a little hint there until I figured out that certain types of chemotherapy may make proteinuria worse if you already have it, or cause it. Boo for me; I lost on that one since I already had proteinuria.

Well, what about the edema from the neuropathy? Was proteinuria affecting that in some way? Or did I have it backwards and it was the neuropathy that was causing the edema. I went to eMedicineHealth at https://www.emedicinehealth.com/neuropathy/article_em.htm#what_is_neuropathy for some help with this.

“Certain drugs and medications can cause nerve damage. Examples include cancer therapy drugs such as vincristine(Oncovin, Vincasar), and antibiotics such as metronidazole (Flagyl), and isoniazid (Nydrazid, Laniazid).”

This little tidbit is from MedicalNewsToday at https://www.medicalnewstoday.com/articles/323481.php :

“Chemotherapy can damage nerves that affect feeling and movement in the hands and feet. Doctors call this condition chemotherapy-induced peripheral neuropathy (CIPN). Symptoms can be severe and may affect a person’s quality of life.”

By the way, diabetic neuropathy is another form of peripheral neuropathy.

Uh-oh, now what do I do? The HonorHealth Research Institute in Scottsdale, Arizona, where I’m being treated offered both the gabapentin for the pain (which I skipped since I want to try non-drug treatment first) and occupational therapy. Let’s see what that might do for me. Please note that occupational therapy works at reducing the pain of the neuropathy.

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.

I was also given physical exercises to do, like raising my fisted hands above my head and straightening out my fist several times.  This is one of many exercises. Do you remember the old TV show, E.R? It takes me slightly longer than one 43 minute episode to complete the exercises.

When I go to see the therapist, she uses the Havimat (electrical stimulation), another machine that sucks the chemo out (no kidding… and it doesn’t hurt either.), and a third that pulses. I am amazed at how the edema disappears when she uses these. But, unfortunately, the effect doesn’t stay very long. Compression socks have helped and, despite their not-so-pleasing appearance are quite comfortable.

Wow! Proteinuria is so much more than just an indication that you may have Chronic Kidney Disease.

Ready for a topic change? The following is part of an email I received from KDIGO (Kidney Disease – Improving Global Outcomes).

“We … invite your comments at any time.  Suggest topics, look for opportunities for KDIGO to implement its work in your area, bring new ideas to us, and help us become more relevant to the lives of patients like you. As a global organization, we seek to continue to develop communication channels to patients throughout the world.  This is difficult to do from one perspective, but if we work together we can build a robust base of individuals and ideas that will help us plan and carry out our mission.

KDIGO doesn’t have any members or local entities to whom we are accountable.  We only are accountable to you, our patients.  Outcomes of your care are our mission.  We can do it better if you work with us and give us your constructive input.

Again, thanks for letting us know you’d like to be a part of this global effort.  Your ideas are welcome and will be taken into account. “

Keep those comments coming, folks. Their email is kdigocommunications@kdigo.org.

Until next week,

Keep living your life!

Rising to the Challenge

Remember Loyal Reader from a few years ago? He and I are still in touch and toss around ideas here and there. He sent me an article about Chronic Kidney Disease patients being at higher risk for Hepatitis C along with the comment, “Hmmm, I wonder why?” I know a challenge when I see one, so let’s find out.

Back to basics: what is Hepatitis C anyway? As I mentioned in SlowItDownCKD 2013, Hepatitis is from the … Greek word root, hepa, which means liver.” Interesting, but not enough information for our purposes.

According to our old friend the MayoClinic at https://www.mayoclinic.org/diseases-conditions/hepatitis-c/symptoms-causes/syc-20354278,

“Hepatitis C is a viral infection that causes liver inflammation, sometimes leading to serious liver damage. The hepatitis C virus (HCV) spreads through contaminated blood.”

The National Kidney Foundation at https://www.kidney.org/sites/default/files/HepC_Infographic.pdf explained why hepatitis C is associated with Chronic Kidney Disease:

“Hepatitis C infection is strongly associated with kidney disease. Hepatitis C is more common in people with kidney disease than the general population. Hepatitis C can be a cause of kidney disease, or make existing kidney disease worse. People receiving a kidney transplant, or donating a kidney, are routinely tested for hepatitis C.

Hemodialysis and Hepatitis C People receiving long-term hemodialysis have a risk of getting hepatitis C through transmission in the dialysis clinic. The risk is small because of strict standard health precautions used in dialysis units today. However, some cases of hepatitis C being spread between patients have been reported.”

By the way, NKF uses infographs which are easy to understand.

In SlowItDownCKD 2017, I explained what KDIGO is. We’re going to need that explanation in just a moment.

“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.”

Here’s where KDIGO comes in. Way back in 2008, the following was published in the April issue of the official journal of the International Society of Nephrology, Kidney International, which supports the KDIGO:

“‘HCV infection is associated with an increased prevalence of reduced kidney function, albuminuria, and an increased risk of developing end stage renal disease,’ says Dr. Jaber, who is also vice chair for clinical affairs, Department of Medicine at Caritas St. Elizabeth’s Medical Center, ‘HCV infection is also associated with increased mortality among patients undergoing maintenance hemodialysis and among kidney transplant recipients.'”

But, in 2018, KDIGO updated their recommendations: “We recommend screening all patients for hepatitis C virus (HCV) infection at the time of initial evaluation of chronic kidney disease (CKD).”

Hmmm, as Loyal Reader would say, I wonder if this has something to do with the albuminuria Dr. Jaber mentioned in 2008.

Let’s see what we can find out. I found this in SlowItDownCKD 2015:

“Albumin is a protein.  It will show up as microalbumin in your urine test.  It may also show up as proteinuria since albumin is a protein.”

We can figure out that microalbumin is extremely small particles of albumin, but what about proteinuria? I went back, back, back to my first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the definition:

“Protein in the urine, not a normal state of being.”

Does anyone else feel like we’re going down the rabbit hole here? Of course it’s not normal! It means we have CKD. Now, if there’s any amount   of protein in our urine… and there may be since we do have Chronic Kidney Disease… it looks like Hepatitis C Virus can raise that amount and lower our GFR. Not good, not good at all.

So what do we do about it? WebMD at https://www.webmd.com/hepatitis/digestive-diseases-hepatitis-c#2 held the least medicalese answer about the drugs that all the sites I viewed saw as the best treatment plan:

“Your treatment will depend on many things including what type of hepatitis C virus you have. In the U.S., the most common type is genotype 1, followed by genotypes 2 and 3. Genotypes 4, 5, and 6 are very rare in the U.S. Your doctor will help you figure out what’s right for you, based on your medical needs and insurance coverage. “

I know. I had the same question. What is a genotype? Hello, Dictionary.com, my old friend, at https://www.dictionary.com/browse/genotype.

“the genetic makeup of an organism or group of organisms with reference to a single trait, set of traits, or an entire complex of traits.”

Well, that makes sense. Just one more thing, though. Is it possible to know we have Hepatitis C before we’re diagnosed with CKD – at which time we should be tested for HCV – or even if we don’t have CKD? That is a loaded question. According to the Centers for Disease Control (CDC), fully 80% of those with acute or short term HCV won’t have any symbols. The other 20% may experience mild symptoms you might experience with any illness: fever, joint pain, being tired and/or nauseous, and the like. However with chronic or long term HCV, you might experience dark urine and/or jaundice of the skin and eyeballs. To complicate matters even more, there are three different kinds of hepatitis. You can read much more about hepatitis at https://www.cdc.gov/hepatitis/hcv/cfaq.htm

There’s one thing that I haven’t yet made clear. Your body rids itself of wastes and excess fluids through either the kidneys or the liver. If you have CKD, your kidneys are already not functioning as well as they should which means you’re not getting rid of either wastes or excess fluids efficiently. Guess what. One of the functions of the liver is to also clean your blood. Having two organs that are not effectively cleansing your blood is not a position you want to be in… ever.

This was a difficult blog to write. There were so many little pieces to link together. But thanks for the challenge, Loyal Reader, I learned a lot.

Switching topics now. Since the weather has been,uh, difficult lately (to say the least), I thought this might be helpful.  Use this link rather than clicking below: https://ecs.page.link/SVpB 

Until next week,

 

Keep living your life!

Only One?

Loads of good things have been happening in my family lately, among them a couple of marriages. That, of course, brings new people into the family. There’s always that obligatory meet-the-new-in-laws dinner.  At one of these, a just added family member mentioned that she only had one kidney. Then she asked me what that means as far as Chronic Kidney Disease… and I didn’t know. Today’s blog is for her.

Let’s jump right in with this explanation from the U.S. Department of Health’s National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at https://www.niddk.nih.gov/health-information/kidney-disease/solitary-kidney.

When a person has only one kidney or one working kidney, this kidney is called a solitary kidney. People born with kidney dysplasia have both kidneys; however, one kidney does not function (top right). When a kidney is removed surgically due to disease or for donation, both the kidney and ureter are removed (bottom right).

Well that was pretty straight forward. I wondered if she should be taking any kind of special cautions. According to the National Center for Biotechnology Information of the U.S. National Library of Medicine, National Institutes of Health, PubMed at https://www.ncbi.nlm.nih.gov/pubmed/16985610,

Removal of one kidney leads to structural and functional changes by the remaining kidney, including increased filtration of the remaining glomeruli. These functional changes have generally been considered beneficial because they mitigate the reduction in the total glomerular filtration rate that would otherwise occur, but experimental evidence suggests that these changes may have an adverse effect on the remaining kidney.

That sounded great… until I got to ‘adverse effect.’ So, naturally, I wanted to know what they meant. The Kidney and Urology Foundation of America, Inc. at http://www.kidneyurology.org/Library/Kidney_Health/Solitary_Kidney.php told me what I wanted to know.

If having a single kidney does affect your health, the changes are likely to be so small and happen so slowly that you won’t notice them. Over long periods of time, however, these gradual changes may require specific measures or treatments. Changes that may result from a single kidney include the following:

  • High blood pressure. Kidneys help maintain a healthy blood pressure by regulating how much fluid flows through the bloodstream and by making a hormone called renin that works with other hormones to expand or contract blood vessels. Many people who lose or donate a kidney are found to have slightly higher blood pressure after several years.
  • Proteinuria. Excessive protein in the urine, a condition known as proteinuria, can be a sign of kidney damage. People are often found to have higher-than-normal levels of protein in their urine after they have lived with one kidney for several years.
  • Reduced GFR. The glomerular filtration rate (GFR) shows how efficiently your kidneys are removing wastes from your bloodstream. People have a reduced GFR if they have only one kidney.

In the nephron …, tiny blood vessels intertwine with urine-collecting tubes. Each kidney contains about 1 million nephrons.

You can have high blood pressure, proteinuria, and reduced GFR and still feel fine. As long as these conditions are under control, they will probably not affect your health or longevity. Schedule regular checkups with your doctor to monitor these conditions.

Wait a minute! Those are also the effects of Chronic Kidney Disease. And as you read on, you’ll see that the precautions are the same as those for someone who already has CKD.

What, then, is my new in-law supposed to do since she has a solitary kidney? I went to Medic8, a new site for me, at http://www.medic8.com/kidney-disorders/solitary-kidney.htm for the following suggestions.

Monitoring

Your doctor should monitor your kidney function by checking your blood pressure and testing your urine and blood once a year.

  • Normal blood pressure is considered to be 120/80 or lower. You have high blood pressure if it is over 140/90. People with kidney disease or one kidney should keep their blood pressure below 130/80. Controlling blood pressure is especially important because high blood pressure can damage kidneys.
  • Your doctor may use a strip of special paper dipped into a little cup of your urine to test for protein. The colour of the “dipstick” indicates the presence or absence of protein. A more sensitive test for proteinuria involves laboratory measurement and calculation of the protein-to-creatinine ratio. A high protein-to-creatinine ratio in urine (greater than 30 milligrams of albumin per 1 gram of creatinine) shows that kidneys are leaking protein that should be kept in the blood.
  • … scientists have discovered that they can estimate a person’s GFR based on the amount of creatinine in a small blood sample. The new GFR calculation uses the patient’s creatinine measurement along with weight, age, and values assigned for sex and race. …. If your GFR stays consistently below 60, you are considered to have chronic kidney disease.

Controlling Blood Pressure

If your blood pressure is above normal, you should work with your doctor to keep it below 130/80. Great care should be taken in selecting blood pressure medicines for people with a solitary kidney. Angiotensin-converting enzyme (ACE) inhibitors and angiotensin receptor blockers (ARBs) are two classes of blood pressure medicine that protect kidney function and reduce proteinuria. But these medicines may be harmful to someone with renal artery stenosis (RAS), which is the hardening of the arteries that enter the kidneys. Diuretics can help control blood pressure by removing excess fluid in the body. Controlling your blood pressure may require a combination of two or more medicines, plus changes in diet and activity level.

Eating Sensibly

Having a single kidney does not mean that you have to follow a special diet. You simply need to make healthy choices, including fruits, vegetables, grains, and low-fat dairy foods. Limit your daily salt (sodium) intake to 2,000 milligrams or less if you already have high blood pressure. Reading nutrition labels on packaged foods to learn how much sodium is in one serving and keeping a sodium diary can help. Limit alcohol and caffeine intake as well.

Avoid high-protein diets. Protein breaks down into the waste materials that the kidneys must remove, so excessive protein puts an extra burden on the kidneys. Eating moderate amounts of protein is still important for proper nutrition. A dietitian can help you find the right amount of protein in your diet.

Avoiding Injury

…. Having a solitary kidney should not automatically disqualify you from sports participation. Children should be encouraged to engage in some form of physical activity, even if contact sports are ruled out. Protective gear such as padded vests worn under a uniform can make limited contact sports like basketball or soccer safe. Doctors, parents, and patients should consider the risks of any activity and decide whether the benefits outweigh those risks.

I am happy to say I think our new relative is going to find this a comforting blog. I know I did.

Oh, talking about one. I have one desk copy of the now retired The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 left. Leave a comment if you’d like to have it. All I ask is that you not have received a free book from me before.

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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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!

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!