Teachers Teach

Many of you have asked that I post the interview by The American Federation of Teachers. I aim to please, so here it is.

 Gail Rae-Garwood

From NYC teacher to international health advocate

Posted August 9, 2016 by Liza Frenette

Gail Rae-Garwood talks and writes all the time about slowing down — but she’s not referring to her lifestyle speed. She’s talking about putting the brakes on Chronic Kidney Disease.

When this retired high school English teacher and United Federation of Teachers member was diagnosed with CKD in 2008, she was shocked. A new doctor detected unhealthy levels for kidney functioning in routine blood and urine workups. She was sent to a nephrologist. “I didn’t know what it was and what it meant,” she said. “I was terrified and thought I had nowhere to turn.”

She began researching and finding ways to manage this inflammatory disease through a specialized, calibrated diet, exercise, stress reduction and proper sleep. Then she realized she wanted to help others steer toward solutions. Rae-Garwood writes a weekly blog, a daily post and has published four books designed for people with CKD. She answers questions from around the world. She has spoken at coffee shops, Kiwanis Clubs, independent bookstores and senior citizen centers. She’s been a guest blogger for the American Kidney Fund, which promotes prevention activities AKF logoand educational resources, and provides financial assistance for clinical research and for kidney patients who need help with dialysis and transplants.

While she is careful about getting enough sleep and eating right, Rae-Garwood does not let any waking time slip by unnoticed. She has been interviewed on Online with Andrea, The Edge Podcast, Working with Chronic Illness, and Improve Your Kidney Help. She has been interviewed for the Wall Street Journal’s Health Matters and The Center for Science in The Public Interest.

Her action is not all talk. She also puts on the sneakers: In addition to her regular walks for health, she hustled up a team for the National Kidney Foundation of Arizona Kidney Walk.

By now, even her heart is probably kidney shaped.

Rae-Garwood also organized several talks at the Salt River Pima-Maricopa Indian Community, not far from where she lives in Arizona.

Blacks, Hispanics, Native Americans and Asians are more prone to CKD, she said. “I wanted to bring awareness everywhere I could.”NKF-logo_Hori_OB

Education is vital because so many people are unaware they even have the disease. Rae-Garwood is one of many who did not have any symptoms. “Many, like me, never experienced any noticeable symptoms. 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.”

And CKD, left unchecked and untreated, can wreak havoc and death. According to the American Association of Kidney Patients, “The increase of kidney disease is now reaching epidemic proportions. The rates are even higher among racial and ethnic minorities. Chronic kidney disease can progress to end-stage renal disease and the need for dialysis or a kidney transplant.”

Rae-Garwood’s goal is to educate people and help them with their health. “You can slow down the progress of the decline of kidney function,” she said.

And she is the very living proof that people want to see.

kidneys5“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 nine years and even improved my health. 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,” she said.

After her first book was published, Rae-Garwood received an e-mail from a doctor in India. He said his patients were extremely poor and could not afford the book – yet the information she wrote about was so important to them.

“He asked how I could help. I thought: ‘I could write a blog!’” she said. Her efforts began by putting her book chapters on the blog, piece by piece. The doctor in India printed them and gave them to his patients. Newer blog posts have more up-to-date information, keeping patients informed.

Her informational blog has 106,000 readers from 107 different countries, she said, based on a report from WordPress. On her blog, Rae-Garwood answers questions from readers, lists books about CKD, reports on events, lists support groups, etc. She writes about things that have worked for her, such as using a stationary bike and stretching bands, and walking  — and cautions readers to seek advice from their doctor.

The year-round outdoor climate in Arizona helps Rae-Garwood stay active. While she loved living on Staten Island, she said she owned an old Victorian that she could not afford to fix up in retirement. With an arthritis condition, she also noticed that she was “becoming a bit of a shut-in in the winter.” So she moved to the southwest two months after retiring.

GFRRae-Garwood is not letting any of that sunshine go to waste. Since her 2008 diagnosis. she’s been driving on a steady road to wellness and spreading awareness like a modern day Johnny Appleseed. In her retirement from teaching, she has devoted much time to writing, speaking and teaching about how to thwart the disease. The skills she developed in 32 years as a teacher in Brooklyn, Staten Island, Queens and Manhattan have served her well in this new role as health advocate.

Her own four self-published books are “SlowItDownCKD 2015,” “The Book of Blogs, Moderate Stage Kidney Disease Part 1,” “The Book of Blogs, Moderate Stage Kidney Disease Part2” and “What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.” The books are available online at Barnes and Noble and Amazon.

For more information on the disease and this active, 69-year-old retiree, check out https://gailraegarwood.wordpress.com.

I hope that this interview has been both enjoyable and informative. It’s how I live my life…

Until next week,

Keep living YOUR life!

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CKD Treatment Interruptus

Recently, someone close to me experienced a major burglary.  After calling the police, he called me. That’s what my friends do and I’m thankful they do. I kept him on the phone while I threw on some clothes and sped over to his house. This is a strong, independent man who was shocked at the intimacy of the invasion of his home. When I got there, we walked from room to room, astonished at how much had been stolen.

That night, I couldn’t leave – not even to go home for my evening medications and supplements. That night, I couldn’t sleep while my buddy was in such turmoil. So we sat up staring at the empty space where the TV had been.  He’s not on the renal diet and all he had that I could eat was some chicken, no fruit, no vegetables. And I was too busy being with him to exercise. This was my good buddy of over 30 years standing.

The next morning, another friend came over to help with security devices and spend time with our mutual friend.  I got to go home, take my morning medications, and crawl into bed for ½ an hour. But then our mutual friend had to go to work, so I went back to my buddy’s house and spent the day helping him try to list what was missing, what to do about the insurance, how to handle going to work, etc. The word spread, and, suddenly, a third friend was coming to spend the night with him and another couple joined them to make dinner.  I could go home again.    friends

But I was exhausted. I ate stupidly: Chinese restaurant food with all that sodium. I even ate rice, and here I am on a low carbohydrate diet. I sat in the living room like a zombie while Bear waited on me hand and foot.

Even with all this help, my buddy needed to see me daily. I was his strength. So we ran around rummaging up some receipts he’d need for the insurance. But I could see he was feeling better. Our mutual friends were amazing, including those who couldn’t leave work to come so kept phoning and texting instead. A different someone else stayed with him overnight again.  Then he only needed to see me for a quick hug… and yet another someone else stayed with him overnight again. He didn’t really need me anymore, which is great because I started breaking down.

sad faceI have Chronic Kidney Disease. I need to sleep adequately – and with my BiPap. I need to follow the renal diet. I need to exercise. I need to rest.  I did very little of any of this during the trauma itself, and that’s alright. This is my long term buddy – as grown up and mature as he is – and he needed me. But what did I do to myself?

You guessed it. Right away, my blood pressure shot up and that’s a bad thing. Why? Let me tell you… or you can go to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, page 9.  FullSizeRender (2)

“Through my research, I began to understand what high blood pressure [HPB] has to do with renal disease.  HPB can damage small blood vessels in the kidneys to the point that they cannot filter the waste from the blood as effectively as they should. Nephrologists may prescribe HBP medication to prevent your CKD from getting worse since these medications reduce the amount of protein in your urine.  Not too surprisingly, most CKD related deaths are caused by cardiovascular problems.”

FullSizeRender (3)What about the stress?  What was that doing to my poor overworked kidneys?  I went to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 for the answer to that one:

“First you feel the fight or flight syndrome which means you are releasing hormones.  The adrenal glands which secrete these hormones lay right on top of your kidneys. Your blood sugar raises, too, and there’s an increase in both heart rate and blood pressure.  Diabetes {Blood sugar} and hypertension {Blood pressure} both play a part in Chronic Kidney Disease.”

That’s two strikes against me. I almost hesitate to think about exercise… or the lack of it for several consecutive days.  This is one of the points about treating prediabetes (which I have and so do so many of you) from the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/prediabetes/basics/treatment/con-20024420 which was included in SlowItDownCKD 2015:IMG_2980

“Losing excess pounds. If you’re overweight, losing just 5 to 10 percent of your body weight — only 10 to 20 pounds (4.5 to 9 kilograms) if you weigh 200 pounds (91 kilograms) — can reduce the risk of developing type 2 diabetes. To keep your weight in a healthy range, focus on permanent changes to your eating and exercise habits. Motivate yourself by remembering the benefits of losing weight, such as a healthier heart, more energy and improved self-esteem.”

And the renal diet? We mustn’t forget about the renal diet. In The Book of Blogs: Moderate Kidney Disease, Part 1 I quoted from http://www.yourkidneys.com/kidney-education/Treatments/Living-a-full-life-after-a-chronic-kidney-disease-diagnosis/3189 which is part of Yourkidneys.com from DaVita:

“Depending on what stage of Chronic Kidney Disease you’re in, your renal dietitian will adjust the amounts of protein, sodium, phosphorus and potassium in your diet. In addition, carbohydrates and fats may be controlled based on conditions such as diabetes and cardiovascular disease. The IMG_2982CKD non-dialysis diet includes calculated amounts of high quality protein. Damaged kidneys have a difficult time getting rid of protein waste products, so cutting back on non-essential protein will put less stress on your kidneys.”

Have I done more permanent damage to my kidneys? I’m hoping not since it was just a few days and I made the conscious decision to be with my buddy instead of tending to myself. Let’s consider this a cautionary tale instead.

Until next week,

Keep living your life!

Maybe for You, But Not for Me

hairLast week, when I wrote about thinning hair, I received loads of suggestions. While I was pleased with all the interaction, it was clear to me that we had people answering from three different positions: pre-dialysis (like me at Stage 3 Chronic Kidney Disease), dialysis, and post-transplant. What also became clear is that the ‘rules’ for each position are different. That got me to wondering.

But first, I think a definition of each of these is necessary. My years teaching English ingrained in me that ‘pre’ is a prefix meaning before; so pre-dialysis means before dialysis. In other words, this is CKD stages 1-4 or 5 depending upon your nephrologist. It’s when there is a slow progression in the decline of your kidney function.

I remembered a definition of dialysis that I liked in SlowItDownCKD 2015, and so, decided to repeat it here.IMG_2980

“According to the National Kidney Foundation at https://www.kidney.org/atoz/content/dialysisinfo,

‘Dialysis is a treatment that does some of the things done by healthy kidneys. It is needed when your own kidneys can no longer take care of your body’s needs. There are several different kinds of dialysis. Basically, they each eliminate the wastes and extra fluid in your blood via different methods.’”

And post -transplant?  Simply put, it means after having had an kidney (or other organ) placed in your body to replace one that doesn’t work anymore.

I know as a pre-dialysis that I have certain dietary restrictions.  Readers have told me some of theirs and they’re very different. It’s not the usual difference based on lab results that will tell you whether you need to cut back more on one of the electrolytes this quarter. It seemed like an entirely different system.

FullSizeRender (2)Let’s go back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to see what my basic dietary restrictions as a pre-dialysis CKD patient are.

 “The (e.g. renal) diets seem to agree that protein, sodium, phosphorus and potassium need to be limited. … Apparently, your limits may be different from mine or any other patient’s.  In other words, it’s personalized.”

Well, what about those on dialysis? What do their dietary guidelines look like? I found this in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“Knowing End Stage Renal Disease is not my area of expertise, I took a peek at National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC), A service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)National Institutes of Health (NIH), at http://kidney.niddk.nih.gov/KUDiseases/pubs/eatright/index.aspx#potassium anyway to see what dialysis patients can eat.

“Potassium is a mineral found in many foods, especially milk, fruits, and vegetables. It affects how steadily your heart beats. Healthy kidneys keep FullSizeRender (3)the right amount of potassium in the blood to keep the heart beating at a steady pace. Potassium levels can rise between dialysis sessions and affect your heartbeat. Eating too much potassium can be very dangerous to your heart. It may even cause death.”

I suspected that potassium is not the only dietary problem for dialysis and dug a bit more.  I discovered this information on MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=78054, along with the caveat that these also need to be individualized as per lab results.

  1. Fluids: Allowance is based primarily on the type of dialysis and urine output. If you have any edema, are taking a diuretic, and/or have congestive heart failure, your allowance will be adjusted.
  2. Sodium: This will be modified to maintain blood pressure and fluid control and to help prevent congestive heart failureand pulmonary edema.
  3. Potassium: Your intake of this will be adjusted to prevent your blood levels from going too high or too low.
  4. bananaPhosphorus: The majority of dialysis patients require phosphate binders and dietary restrictions in order to control their blood phosphorus levels.
  5. Protein: Adequate protein is necessary to maintain and replenish your stores. You may be instructed on increasing your intake now that you are on dialysis.
  6. Fiber: There is a chance that constipation may be a problem due to fluid restrictions and phosphate binders, so it’s important to keep fiber intake up. You will need guidance on this because many foods that are high in fiber are also high in potassium.
  7. Fat: Depending on your blood cholesterol levels, you may need to decrease your intake of trans fat, saturated fat, and cholesterol.
  8. Calories: If you are over or underweight, you will be instructed on adjusting the amount of calories that you take in each day.
  9. Calcium: Most foods that contain calcium also contain phosphorus. Due to your phosphorus restrictions, you will need guidance on how to get enough calcium while limiting your intake of phosphorus.

Big difference here!  More protein, less calcium, phosphate binders, fat and calcium. No wonder the responses I got to last week’s blog were so varied.

And post-transplant? What about those dietary restrictions? The Mayo Clinic at http://www.mayoclinic.org/tests-procedures/kidney-transplant/manage/diet-nutrition/nuc-20209734 has that one covered, with the same warning as the other two groups’ diets: your labs dictate your amounts.

  • Eating at least five servings of fruits and vegetables each dayfruits and veggies
  • Avoiding grapefruit and grapefruit juice due to its effect on a group of immunosuppression medications (calcineurin inhibitors)
  • Having enough fiber in your daily diet
  • Drinking low-fat milk or eating other low-fat dairy products, which is important to maintain optimal calcium and phosphorus levels
  • Eating lean meats, poultry and fish
  • Maintaining a low-salt and low-fat diet
  • Following food safety guidelines
  • Staying hydrated by drinking adequate water and other fluids each day

So it looks like you get to eat more servings of fruits and vegetables a day, must avoid grapefruit and its juice, and be super vigilant about calcium and phosphorus levels. Notice the same suggestion to have enough fiber in your diet as when on dialysis.

Whoa! We have three different sets of diet guidelines for three different stages of CKD, along with the strict understanding that everything depends upon your lab results. That means that the post-transplant patients were right – for them – that I needed more protein.  And the dialysis patients were right – for them – too. But for the pre-dialysis patients? Nope, got to stay below five ounces daily. IMG_2982

Until next week,

Keep living your life!

Hair Today, Gone Tomorrow (Heaven Forbid)

I have noticed my hair coming out in alarming amounts when I wash it in the shower. At first, I thought, “I don’t brush it so this must be the way I shed dead hairs.”  Sure, Gail, keep telling yourself that. I have always had a glorious mane. No more. You can see more and more of my scalp with each shower. OMG! (Forgive the cigarettes in the modeling shot. It was a long, long time ago.)IMG_2944early shots

I’ve read pleas for help from Chronic Kidney Disease patients about just this issue…but they were dialysis patients. I’m Stage 3, more often with a GFR in the low 50s rather than the low 30s. Could it be my Chronic Kidney Disease causing the hair loss – I’ll feel better if we called it ‘hair thinning’ – or simply my almost seventy decades on Earth?

FullSizeRender (2)I can appreciate those of you asking, “Her what is in the low 50s?” Let’s take a peek at What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for a definition of GFR.

“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.”

Of course, now you want to know, and rightfully so, what those numbers mean. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, I included a helpful chart from DaVita along with some of my own comments which explains.

“Think of the stages as a test with 100 being the highest score.  These are the stages and their treatments:FullSizeRender (3)

STAGE 1: (normal or high) – above 90 – usually requires watching, not treatment, although many people decide to make life style changes now: following a renal diet, exercising, lowering blood pressure, ceasing to smoke, etc.

 STAGE 2: (mild) – 60-89 – Same as for stage one

STAGE 3A: (moderate) – 45-59 – This is when you are usually referred to a nephrologist (Kidney specialist). You’ll need a renal (Kidney) dietitian, too, since you need to be rigorous in avoiding more than certain amounts of protein, potassium, phosphorous, and sodium in your diet to slow down the deterioration of your kidneys. Each patient has different needs so there is no one diet.  The diet is based on your lab results.  Medications such as those for high blood pressure may be prescribed to help preserve your kidney function.

STAGE 3B: (moderate) – 30-44 – same as above, except the patient may experience symptoms.

STAGE 4:  (severe 15-29) – Here’s when dialysis may start. A kidney transplant may be necessary instead of dialysis (Artificial cleansing of your blood). Your nephrologist will probably want to see you every three months and request labs before each visit.

STAGE 5: (End stage) – below 15 – Dialysis or transplant is necessary to continue living.”

GFR

As for the hair itself, I wondered what it’s made of so I started googling and came up with Hilda Sustaita, Department Chair of Cosmetology at Houston Community College – Northwest’s, definition. You can read more of her insights about hair at http://www.texascollaborative.org/hildasustaita/module%20files/topic3.htm

“Hair is made of protein which originates in the hair follicle.  As the cells mature, they fill up with a fibrous protein called keratin. These cells lose their nucleus and die as they travel up the hair follicle. Approximately 91 percent of the hair is protein made up of long chains of amino acids.”

keratinUh-oh, Chronic Kidney Disease patients need to lower their protein intake. I’m constantly talking about my five ounce daily limitation. I remembered quoting something about protein limitation in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and so looked for that quote. This is what I found.

“This is part of an article from one of DaVita’s sites.  You can read the entire article at http://www.yourkidneys.com/kidney-IMG_2982education/Treatments/Living-a-full-life-after-a-chronic-kidney-disease-diagnosis/3189. …

Depending on what stage of Chronic Kidney Disease you’re in, your renal dietitian will adjust the amounts of protein, sodium, phosphorus and potassium in your diet. … The CKD non-dialysis diet includes calculated amounts of high quality protein. Damaged kidneys have a difficult time getting rid of protein waste products, so cutting back on non-essential protein will put less stress on your kidneys.”

But I have friends near my age without CKD whose hair is thinning, too. They’re not on protein restricted diets, so what’s causing their hair thinning?

According to WebMD at http://www.webmd.com/beauty/aging/does-your-hair-make-you-look-old,

“’The diameter of the hair shaft diminishes as we get older,’ explains Zoe Draelos, M.D., clinical associate professor of dermatology at Wake Forest hair follicleUniversity School of Medicine. That means you may have the same number of follicles, but thinner individual strands will make it look like there’s less volume. (They’re also more prone to break, and since hair growth slows as you age, the damage becomes more obvious.)

Even if you do see extra hairs in your brush or in the shower drain, you don’t necessarily need to worry. Although 40 percent of women experience hairsome hair loss by menopause, shedding around 100 strands a day is normal, reports Paul M. Friedman, M.D., clinical assistant professor of dermatology at the University of Texas Medical School at Houston.”

So it may be my CKD that’s causing the hair thinning or it may not. Either way, I wanted to know what to do about it. Dr. Doris Day (I kid you not.) has other suggestions than protein as she discusses in a New York Times article at http://www.nytimes.com/2014/01/23/fashion/Hair-Aging-thinning-dry-dull.html.

Dr. Doris Day, a dermatologist in New York, agreed that the right foods are necessary for healthy hair.

‘I believe that inflammation is negative for the hair follicle, that it can accelerate stress shedding and compromise growth,’ she said. She suggests eating pomegranate, avocado, pumpkin and olive oil, and herbs like turmeric, mint and rosemary.”

You do remember that CKD is an inflammatory disease, right? Hmmm, better check with your renal nutritionist before you start eating pomegranates or pumpkin. They’re on my NO! list, but yours may be different from mine.IMG_2980

By the way, I’ve noticed there are no reviews for SlowItDownCKD 2015 on either Amazon.com or B&N.com. Can you help a writer out here? Just click on either site name to leave a review. Thanks.

Until next week,

Keep living your life!

We, the People Who Have CKD…

Happy Independence Day! Here in the United States, we usually celebrate with fireworks and bar-b-ques that may include renal friendly foods, at fireworksleast at my house. We take our pets inside and try to shield them from the sounds of the fireworks that make them so uncomfortable and then we try to enjoy the heat, the sun, and the parades.

I’m all for Independence Day celebrations, but shy away from them myself. I’m like our pets; I can do without the noise. Since getting older (or medically ‘elderly,’ which always gives me a giggle), I can also do without the heat and the crowds. We used to have renal friendly bar-b-ques at our house, but now our kids are older and visit fiancés, go to bachelorette weekend celebrations, or go camping in other states during this long holiday weekend.

And I realize I do not want to be that far from what is euphemistically called a ‘restroom’ here in Arizona for all that long. There could be many reasons for that, my elderly state (Humph!); a urinary tract infection (UTI); a weak bladder; or interstitial cystitis.

A reader and good online friend – another Texas connection, by the way – asked me to write about interstitial cystitis today. There seems to be some confusion among us – meaning Chronic Kidney Disease patients – between chronic UTIs and interstitial cystitis.Digital Cover Part 2 redone - Copy

UTI is a descriptive term we probably all know since we have CKD and have to be aware of them. We have to be careful they don’t spread to the bladder and, eventually (but rarely), to the kidneys.  That can cause even more kidney damage. I explained a bit more in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“The second nephrologist to treat me referred me to an urologist when he realized I was on my fifth UTI in the same summer and he suspected this one had spread to my bladder. The urologist actually had me look through the cystoscope (I’m adding this today: a sort of long, narrow tube inserted to view both the urethra and bladder) myself to reassure me that the lower urinary tract infection had not spread to the upper urinary tract where the bladder is located.”

We know we have to be vigilant.  That’s where interstitial cystitis comes in. Let’s take a look at SlowItDownCKD 2015 for more information about cystitis:

“Another standby, WebMD, at http://www.webmd.com/a-to-z-guides/understanding-bladder-infections-basic-information explains:

‘Bladder infections are known as cystitis or inflammation of the bladder. They are common in women, but very rare in men. More than half of all women get at least one bladder infection at some time in their lives. However, a man’s chance of getting cystitis increases as he ages, due to in part to an increase in prostate size….

SlowItDownCKD 2015 Book Cover (76x113)Bladder infections are not serious if treated right away. But they tend to come back in some people. Rarely, this can lead to kidney infections, which are more serious and may result in permanent kidney damage. So it’s very important to treat the underlying causes of a bladder infection and to take preventive steps to keep them from coming back.’”

Okay so we get the cystitis part of the condition, but what does interstitial mean? MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=9587defines it this way:

“Pertaining to being between things, especially between things that are normally closely spaced. The word interstitial is much used in medicine and has specific meaning, depending on the context. For instance, interstitial cystitis is a specific type of inflammation of the bladder wall.”

Hang on, just one more definition. This one is from the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/basics/definition/con-20022439

“Interstitial cystitis (in-tur-STISH-ul sis-TIE-tis) — also called painful bladder syndrome — is a chronic condition in which you experience bladder pressure, bladder pain and sometimes pelvic pain, ranging from mild discomfort to severe pain. Your bladder is a hollow, muscular organ that stores urine. The bladder expands until it’s full and then signals your brain that it’s time to urinate, communicating through the pelvic nerves. This creates the urge to urinate for most people. With interstitial cystitis, these signals get mixed up — you feel the need to urinate more often and with smaller volumes of urine than most people….”bladder

Hmmm, then this is clearly not a UTI. So why do we have to be careful about it? Time to look at the causes – or not. According to The National Institute of Diabetes, Digestive, and Kidney Diseases at http://www.niddk.nih.gov/health-information/health-topics/urologic-disease/interstitial-cystitis-painful-bladder-syndrome/Pages/facts.aspx,

“Researchers are working to understand the causes of IC/PBS and to find effective treatments.

…Scientists believe IC/PBS may be a bladder manifestation of a more general condition that causes inflammation in various organs and parts of the body.”

* IC means interstitial cystitis; PBS is painful bladder syndrome

Maybe we should be looking at the cure instead – or not. “At this time there is no cure for interstitial cystitis (IC).” But ichelp does mention a number of possible treatments, some of which we cannot use as CKD patients since they may harm the kidneys. Take a look for yourself at: http://www.ichelp.org/diagnosis-treatment/

Whoa! No definitive cause, no cure, and treatments which may harm our kidneys. Where’s the good news in this?  Take another look at the information from The National Institute of Diabetes, Digestive, and Kidney Diseases again. Notice the word ‘inflammation’?

Bingo. CKD is also an inflammatory disease and may be that “more general condition that causes inflammation in various organs and parts of the body.” Wait, I just remembered this from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:DIGITAL_BOOK_THUMBNAIL

“Cancer is a disease caused by inflammation, just as Chronic Kidney Disease is.  By the way, it’s said that alkaline foods are a better way of eating should cancer rear its ugly head in your life.”

So it all comes back to inflammation.  Say, didn’t I recently write a blog about acidity vs. alkaline and inflammation?  Now there’s a good way to avoid the heat, the sun, and the parades of Independence Day. Stay inside (maybe while someone is bar-b-queuing renal friendly food outside) and peruse old blog posts.

What is itUntil next week,

Keep living your life!

Bridging the Gap…

Which gap? The anion. What’s that, you say.

“The anion gap deals with the body’s acidity. A high reading for the anion gap could indicate renal failure.”

Book CoverThat’s what I wrote in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. But you know what? It’s just not enough information any more. Why? I’m glad you asked.  Oh, by the way, if you want to check your own reading look in the Comprehensive Metabolic Panel part of your blood tests, but only if your doctor requested it be tested.

I mentioned a few blogs back that I returned to a rheumatologist I hadn’t seen in years and she chose to treat me as a new patient. Considering how much had happened medically since I’d last seen her, that made sense to me and I agreed to blood tests, an MRI, and a bone density test.

The only reading that surprised me was an abnormally high one for anion gap. The acceptable range is 4 – 18. My reading was 19.  While I have Chronic Kidney Disease, my kidneys have not failed (Thank goodness and my hard work.) In addition, I’ve become quite aware of just how important acidity and alkaline states are and have been dealing with this, although apparently not effectively.

MedFriendly at http://www.medfriendly.com/anion-gap.html – a new site for me written by Dr. Dominic Carone for the express purpose of simplifying complex medical terms for the lay person – explains it this way:diabetes equipment

“…. Too high of an anion gap level can mean that there is acidosis (too much acid in the blood) due to diabetes mellitus. The high anion gap level can also be due to lactic acidosis, in which the high level of acid is due a buildup of a substance called lactic acid. … A high anion gap can also be due to drug poisoning or kidney failure. …When the anion gap is high, further tests are usually needed to diagnose the cause of the problem.”

Ah, I remember writing a bit about acidosis in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1. It had to do with DIGITAL_BOOK_THUMBNAILfruits and vegetables.

“’After three years, consuming fruits and vegetables or taking the oral medication reduced a marker of metabolic acidosis and preserved kidney function to similar extents. Our findings suggest that an apple a day keeps the nephrologist away,’ study author Dr. Nimrit Goraya, of Texas A&M College of Medicine, said in a university news release.

Apparently, some CKD suffers have metabolic systems that are severely acidic. Fruits and vegetables are highly alkaline.  This may counteract the acidity in the patients mentioned above AND those that have less metabolic acidosis (acid in the body).

You can find the complete article at http://kidneygroup.blogspot.com/2012/11/eating-fruits-and-vegetables-may-help.html

Okay, I like fruit and I like vegetables. Ummm, will my limitation of three servings of each within the kidney friendly fruit and vegetable lists do the trick, I wonder. Looks like I’ll be questioning both the rheumatologist and the renal dietician about that.

Recently I’ve written about alkaline being the preferred state of a CKD patient’s body. That is the antithesis of an acid body state. Years ago, Dr. Richard Synder was a guest blogger here and also interviewed me on his radio show. He is the author of What You Must Know about Kidney Disease and a huge proponent of alkaline water.  Here’s what he had to say about that (also from Part 1):

“I have taken alkaline water myself and I notice a difference in how I feel. Our bodies are sixty percent water. Why would I not want to put the best517GaXFXNPL._SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU01_AA160_ type of water into it? Mineralized water helps with bone health.  In alkalinized water, the hydroxyl ions produced from the reaction of the bicarbonate and the gastric acid with a low pH produce more hydroxyl ions which help buffer the acidity we produce on a daily basis. (Me interrupting here: During our visit last Monday, I noticed that my extremely health conscious, non-CKD, Florida friend drinks this.)

Where are these buffers? In the bones and in the cells, as well as some extracellular  buffers. You  are  helping lower  the  total  body  acidity  and decreasing the inflammation brought on by it. You do this early on so that you don’t have a problem with advanced acidosis later. Why wait until you are acidotic before doing something?”

Notice his comment about lowering body acidity and decreasing inflammation.  We already know CKD is an inflammatory disease.  There was Digital Cover Part 2 redone - Copysomething to this. I went back to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 to tease it out.

“‘Belly fat is also much more inflammatory than fat located elsewhere in the body and can create its own inflammatory chemicals (as a tumor would).’

You can read the entire article at http://www.huffingtonpost.com/2013/03/21/body-fat-facts_n_2902867.html

Inflammatory?  Isn’t CKD an inflammatory disease? I went to The National Center for Biotechnology Information, which took me to the National Library of Medicine and finally to a National Institute of Health study at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3332073/   for the answer.

‘The persistent inflammatory state is common in diabetes and Chronic Kidney Disease (CKD).

This is a lot to take in at once.  What it amounts to is that another way to possibility prevent the onset of CKD is to lower your phosphorous intake so that you don’t accumulate belly fat.’”

Phosphorous? Once we have CKD, we do have phosphorous restrictions. But I have never had high phosphorous readings.  Maybe I should be exploring an abundance of lactic acid as a cause of the high anion gap reading instead.

According to Heathline.com,

adam_liver_8850_jpg“Lactic acidosis occurs when there’s too much lactic acid in your body. Many things can cause a buildup of lactic acid. These include chronic alcohol use, heart failure, cancer, seizures, liver failure, prolonged lack of oxygen, and low blood sugar. Even prolonged exercise can lead to lactic acid buildup.”

I’m definitely barking up the wrong tree here.

Wait a minute. I recently started using a BiPAP since I have sleep apnea and wasn’t exhaling enough CO2. That could cause acidosis, but it would be respiratory acidosis. Say, a basic metabolic panel would expose that. Nope, that’s not it either since my CO2 levels were normal.

It looks like this is going to be one of those blogs that asks more questions than it answers. I do have an appointment with the rheumatologist on the 20th and will ask for answers then.

Until next week,

Keep living your life!SlowItDownCKD 2015 Book Cover (76x113)

A Cautionary Tale

Last week, I found myself crushed for time: a friend was coming to visit from Florida, we had a Father’s Day brunch at our house, there were Ave Qtheater tickets, one of the kids needed immediate aid since she was in her own time crunch, the list goes on and on. Taking that into account and not wanting to add that old demon ‘stress’ to the list, I thought I’d do a quick, easy blog about acupuncture/acupressure and Chronic Kidney Disease.

But while researching I discovered a number of sites with online doctors and changed my topic immediately. The ones I clicked on were:

I’m sure there are more, but rather than be an alarmist, I want to be an explainer.

Explainer of what you ask. Not acupuncture or acupressure.  There’s a discussion of how acupressure works in the May 4th blog in SlowItDownCKD 2015 Book Cover (76x113)SlowItDownCKD 2015.  Acupuncture works on the same principle, but using very fine needles rather than pressure. I happily and confidently made use of both before my CKD diagnose and only ceased my treatments when the senior acupuncturist working on me told me these treatments would not help with the CKD. That was over nine years ago. He may have changed his opinion since then.

I want to explain why online doctors are not such a great idea. I can practically see some of you rolling your eyes at me while others are thinking, “Why not?” Okay, maybe they’re legal, but are they ethical? I found a fairly straight forward abstract on ResearchGate which states:

“…online medical consultations pose greater dangers to patients compared to traditional off-line consultations…. while new technologies may aid doctors in making better diagnoses at a distance, they often bring new concerns.”

You can read more about this yourself at https://www.researchgate.net/publication/228234723_Online_Medical_Consultations_Legal_Ethical_and_Social_Perspectives

arthritisI find myself struggling here. I am all in favor of online doctor summaries by your doctors, test reports from your labs, and general medication explanations from the internet. However, I simply cannot understand how someone who has never met you, someone who has not examined your body, someone who has never spoken with you can advise you on your health.

I’ve mentioned before that I have psoriasis, arthritis, neuropathy, sleep apnea, and probably a host of other as-yet-undiagnosed-inflammatory based diseases (This might be a good time to reread last week’s blog about inflammation caused disease. Connected) How can someone who’s never met me take all of this into account when dealing with my health?

A perfect example of what I’m talking about is from the IMPRESSIONS section of my rheumatologist’s recent report,

“This is a very complex patient that presents today with generalized myalgias and arthralgia….Her health history is complicated by carpal tunnel syndrome, neuropathy and chronic kidney disease, stage 3.”

She has not missed a trick. Myalgia, according to the Medical Dictionary at http://medical-dictionary.thefreedictionary.com/myalgia is muscular pain. The Mayo Clinic at http://www.mayoclinic.org/symptoms/joint-pain/basics/definition/sym-20050668 tells us arthralgia is joint pain.  So my muscles and joints hurt. Without seeing me, without testing my joints and muscles, without seeing if the joints are disfigured or the muscles flaccid (for example) how could she help me?

I’m not one to take pain killers, especially NSAIDS which are defined in the glossary of What Is It and How Did I Get It? What is itEarly Stage Chronic Kidney Disease.

“NSAID: 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.”

So I have pain and I can tolerate it. I can’t help but wonder what an online doctor would diagnose. I decided to become a test case. I contacted an online doctor from one of the sites listed above. This is the transcript of that online chat, errors and all.

Welcome! This is a real online-doctor, not a robort. If you have any questions on kidney disease, feel free to type your questions, you will surely         get reply. No consultation fee.

If the online doctors are all busy and you can’t get response for a long time, you can contact us by phone or email. (Contact information                       followed.)

renal-onlinedoctor: Hello, I am renal-onlinedoctor, I am very glad to talk with you!

You: I have pain. What do I do about it?

renal-onlinedoctor: hello, your age and gender?

You: 69 female

renal-onlinedoctor:  ok, what is the current kidney function or creatinine level? do you knowonline doc

You: 50%

renal-onlinedoctor:  ok, Any symptoms? foamy urine, swelling, fatigue, back pain, anemia, itching,  etc

You: Just joint and muscle pain.

renal-onlinedoctor: i see. Do you have Diabetes, high blood pressure, or other problem?

You: HBP, neuropathy, arthritis, psoriasis

renal-onlinedoctor:  ok, What are the current medicines or treatment?

You:  Only hbp meds and arthritis meds.

renal-onlinedoctor: okay  i see. I’d like to send you related info and advice. What is your Email address?

At this point, I ended the chat since I thought I might be deluged with emails if I responded.  Have I proven anything? Only that the online portion of dealing with an online doctor is extremely general.

Where are the questions about my weight? As I wrote in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“Keeping your weight down is one of the ways to help retard the progression of the disease.  How? By not allowing yourself to become obese. Obviously, if you keep gaining weight, you can become obese.  Obesity is one of the contributing factors for developing diabetes.  Diabetes may lead to, and complicates, the treatment of, CKD.”IMG_1398

And what about exercise? In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, I included the following from the American Kidney Fund:

“Exercise can help you stay healthy.  To get the most benefit, exercise for at least 30 minutes, 5 days of the week.”

Yes, it is possible the online doctor may have included such information in the emails(s) he wanted to send me, but how specific to my unique, complex medical situation would they have been… or how specific to yours?

Until next week,

Keep living your life!

Connected

dictionaryFull Definition of connected from the Merriam-Webster Dictionary

 1:  joined or linked together

2:  having the parts or elements logically linked together <presented a thoroughly connected view of the problem>

3:  related by blood or marriage

4:  having social, professional, or commercial relationships <a well-connected lawyer>

5: of a set:  having the property that any two of its points can be joined by a line completely contained in the set; also:  incapable of being separated into two or more closed disjoint subsets

Growing up in New York, I often heard the word used to suggest someone was associated with the Mafia.  You know, like you see in gangster movies. But, that’s not what today’s blog is about. It’s about the connection among all the chronic ailments you have. That would be the second definition.

Before we start, I need to remind you that I’m not a doctor and have never claimed to be one. This is my thinking from my research. This blog was sparked by a conversation on the Facebook page Stage 3 ‘n 4 CKD Kidneybeaners Gathering Place and Robin Rose who got me to thinking about the connection between CKD and inflammation. Maybe it will give you something to think about, too.

PubMed, part of the U.S. National Library of Medicine, National Institutes of Health at http://www.ncbi.nlm.nih.gov/pubmed/19083024 tells us:banner-nihlogo

“Inflammation is the response of the vasculature or tissues to various stimuli. An acute and chronic pro-inflammatory state exists in patients with chronic kidney disease (CKD), contributing substantially to morbidity and mortality. … Inflammation contributes to the progression of CKD by inducing the release of cytokines and the increased production and activity of adhesion molecules, which together contribute to T cell adhesion and migration into the interstitium, subsequently attracting pro-fibrotic factors. Inflammation in CKD also causes mortality from cardiovascular disease by contributing to the development of vascular calcifications and endothelial dysfunction. … “

In that one quotation, you have the definition of inflammation and its causes. I thought I’d try easing into this difficult explanation.

DIGITAL_BOOK_THUMBNAILIn The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, I accepted the connection, but without thought:

“And to answer your question about what colon cancer has to do with Chronic Kidney Disease, you have to remember you are medically compromised already. Cancer is a disease caused by inflammation, just as Chronic Kidney Disease is.”

That’s two chronic diseases caused by inflammation: CKD and colon cancer. There are more, many more.

By the time I wrote The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, I was aware that sinusitis is another inflammatory disease.

“According to Canada.com at http://bodyandhealth.canada.com/channel_section_details.asp?text_id=5694&channel_id=1020&relation_id=70842:Digital Cover Part 2 redone - Copy

‘The narrowed nasal passageway caused by a deviated septum can cause mucus to become blocked by preventing the drainage of mucus from a sinus into the nasal cavity. Excess mucus inside the sinuses presents an attractive environment for bacteria, leading to a sinus infection. This in turn causes inflammation of the sinuses (sinusitis), and because it can happen regularly, chronic sinusitis can occur.’”

That’s three chronic diseases caused by inflammation: CKD, colon cancer, and sinusitis. But there are more, many more.

Last year, I wrote SlowItDownCKD 2015 and included this information:

“Another standby, WebMD, at http://www.webmd.com/a-to-z-guides/understanding-bladder-infections-basic-information explains:

‘Bladder infections are known as cystitis or inflammation of the bladder. They are common in women, but very rare in men. More than half of all women get at least one bladder infection at some time in their lives. However, a man’s chance of getting cystitis increases as he ages, due to in part to an increase in prostate size….”

SlowItDownCKD 2015 Book Cover (76x113)That’s four diseases caused by inflammation: CKD, colon cancer, sinusitis, and cystitis. But there are more, many more.

According to MedicineNet at http://www.medicinenet.com/psoriasis/article.htm :

“Psoriasis is a noncontagious skin condition that produces plaques of thickened, scaling skin. The dry flakes of skin scales are thought to result from the excessively rapid proliferation of skin cells triggered by inflammatory chemicals produced by specialized white blood cells called lymphocytes. Psoriasis commonly affects the skin of the elbows, knees, and scalp.”

That’s five diseases caused by inflammation: CKD, colon cancer, sinusitis, cystitis, and psoriasis. But there are more, many more.

Let’s not forget rheumatoid arthritis. Arthritis.com at http://arthritis.com/rheumatoid_arthritis_symptoms tells us:

“Rheumatoid arthritis (RA) is an autoimmune disease where the body’s immune system attacks normal joint tissues, causing inflammation of the joint lining.

rheumThis inflammation of the joint lining (called the synovium) can cause pain, stiffness, swelling, warmth, and redness. The affected joint may also lose its shape, resulting in loss of normal movement. RA is an ongoing disease, with active periods of pain and inflammation, known as flares, alternating with periods of remission, when pain and inflammation disappear.”

That’s six diseases caused by inflammation: CKD, colon cancer, sinusitis, cystitis, psoriasis, and rheumatoid arthritis. But there are more, many more.

I wouldn’t lose hope even though inflammation seems to be the common thread in chronic disease, though. According to an article in last year’s Blood Purification Journal at https://www.karger.com/Article/FullText/368940 , simple lifestyle modifications can help with inflammation:

“Chronic inflammation should be regarded as a common comorbid condition in CKD and especially in dialysis patients. A number of interventions have been proven to be safe and effective in well-designed clinical studies. This includes such inexpensive approaches as modification of physical activity and dietary supplementation. “

For example:  Dr. Richard Synder, O.D.,  suggested an alkaline/anti-inflammatory based diet when he guest blogged.

If you know an expert in the field of Chronic Kidney Disease and inflammation, let me know who that is so I can contact them to ask if they’d like to guest blog for us.

I know you each have a great deal more to say about Chronic Kidney Disease and inflammation… and so do I, so before you protest that this isn’t all there is to the topic: you’re right, but one weekly blog can only go so far. Please feel free to comment about other inflammatory diseases and how they’re affecting your CKD. I only mentioned six of them.

Until next week,Book Cover

Keep living your life!

Two Levels?

I am now the very satisfied user of a Bilevel Positive Airway Pressure Machine (BiPAP). I fought against this for years, preferring to use a Mandibular Advancement Device (MAD) instead so I wouldn’t be ‘tethered’ to a machine. After only two nights of sleeping with the BiPAP, I have more energy and less brain fog. Heck, that happened after only one night. I wonder just how much of the low energy and high brain fog that I was attributing to Chronic Kidney Disease was really from not enough oxygen and too much CO2 in my lungs.

Whoops, here I am jumping in at the end again. Maybe a reminder of what a MAD is would be the logical place to start. This is what I wrote in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2,Digital Cover Part 2 redone - Copy

“…the MAD forces your airway open by advancing your lower jaw or mandibular.”

If your air passages are restricted, you’re simply not getting enough air into the lungs.

After well over two years, my sleep apnea started becoming worse instead of better, even when the MAD had been extended as far as it could go to keep that airway open. (Laughing over here; it sounds like an instrument of torture. It isn’t.)

You’re probably wondering what this has to do with CKD. I used my baby, What Is It and How Did I Get it? Early Stage Chronic Kidney Disease to find out.

What is it“The first mention of the lungs was in an explanation of your nephrologist’s ROS. ‘Then came the Review of Systems [ROS]. …, the lungs were referred to with questions about coughs, shortness of breath and dyspnea.’”

That does still leave us with the question of why the lungs were covered at all in this examination for CKD. According to http://www.ncbi.nlm.nih.gov/pubmed/20676805, one of the National Institutes of Health’s sites, sleep apnea can raise blood pressure, which in itself is one of the problems of CKD.  It can also result in glomerular hyperfiltration.  The chart below is from their site.  Notice ‘eGFR declines’ is one of the results. These three areas are the most important to us as CKD patients, which doesn’t mean the other effects should be ignored.

 

NIHMS233212.html

What was missing for me was why it was so important to get as much air into the lungs as possible. Livescience at http://www.livescience.com/37009-human-body.html was able to help me out here.

“….The lungs are responsible for removing oxygen from the air we breathe and transferring it to our blood where it can be sent to our cells. The lungs also remove carbon dioxide, which we exhale.”

Why not a Continuous Positive Airway Pressure (CPAP) machine then, you ask? WebMD at http://www.webmd.com/sleep-disorders/sleep-apnea/continuous-positive-airway-pressure-cpap-for-obstructive-sleep-apnea explains:

“A CPAP machine increases air pressure in your throat so that your airway doesn’t collapse when you breathe in.” CPAP

Got it… and necessary when you have sleep apnea. So the next logical question is why was I prescribed a BiPAP instead. Notice in the explanation from Livescience above that the lungs also remove carbon dioxide. Yep, not enough was being removed as I slept.

I liked this explanation of the difference between the CPAP and the BiPAP from verywell at https://www.verywell.com/what-is-bipap-3015273 :

“The key distinguishing feature of BiPAP is that the pressurized air is delivered at two alternating levels. The inspiratory positive airway pressure (IPAP) is higher and supports a breath as it is taken in. Conversely, the expiratory positive airway pressure (EPAP) is a lower pressure that allows you to breathe out. These pressures are preset based on a prescription provided by your sleep doctor and alternate just like your breathing pattern.”

It’s when you breathe out that you rid yourself of carbon dioxide. But I wanted to know why too much of that in your system is not a good thing. I was delighted to find this scientific, yet understandable, (albeit older) posting by then Ph.D. candidate Shannon DeVaney at http://www.madsci.org/posts/archives/2005-06/1118758011.Gb.r.html. MadSci is a service provided by Washington University in St. Louis.

“…much of the body’s excess carbon dioxide ends up in the blood…. The net effect of increased carbon dioxide in the blood is lowered blood pH (that is, the blood becomes more acidic). The ability of hemoglobin to bind with oxygen decreases with decreasing pH in a phenomenon called the Bohr effect (sic). Because of the Bohr effect, increasing CO2 concentrations indirectly reduce the oxygen carrying capacity of the blood.

BiPAPCarbon dioxide can also react with parts of the hemoglobin molecule to form carbamino compounds. The formation of these compounds directly reduces the ability of hemoglobin to bind with oxygen and therefore also reduces the oxygen carrying capacity of the blood.

So, in these two ways (indirectly by reducing blood pH and directly by reacting with hemoglobin) carbon dioxide can reduce the ability of our blood to carry oxygen to tissues throughout the body where it is needed. It’s a good thing, then, that the excess carbon dioxide in our blood diffuses into our lungs, where it leaves the body when we exhale.”

Except in my case, it wasn’t. Hence the BiPAP to help me out.  If the results of the last two nights continue, it seems I needed an awful lot of helping out… and I didn’t know it. So far today, I have booked a combined 70th birthday cruise to Cuba for Bear and me, conferred many times by phone SlowItDownCKD 2015 Book Cover (76x113)and text with my wonderful sister-in-law – Judy Peck (mentioned several times in SlowItDownCKD 2015) – about cabins, insurance, land excursions, packages, etc., then gotten back to our travel agent with our decisions, spoken with three different doctors and two labs, communicated with three of my daughters, contacted our donation center for pick up, and scheduled several maintenance jobs for my house – and I’m not tired. I haven’t yawned once. I could learn to like living like this.

By the way, between Medicare and my secondary insurance, this is not costing me a thing. Oh goody, more money for our birthday present to ourselves.

Until next week,DIGITAL_BOOK_THUMBNAIL

Keep living your life!