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!

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Aha! It is Possible.

What is itI’ve written periodically about the difficulties I was having combining the renal diet and the prediabetes diet. My usual renal dietician was unavailable for this year’s second (Thank you, Medicare.) appointment, so I saw someone else… and am I glad I did!

My first renal dietician introduced me to weights, measures, and what to eat in the first place.  Needless to say, this was all new to me and I wasn’t so happy with all these numbers, but she calmly, patiently kept explaining until I understood.  By the way, she’s quoted in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.

This is the renal diet she devised for me as a brand new Chronic Kidney Disease patient. It’s based on The Northern Arizona Council on Renal Nutrition’s diet.

Scan0003

(Seems I see things off kilter. Scan0002

Just tilt your head a bit, if you will.)

As you can see, it was very exacting… just what I needed when I was so confused with all this new information and having to completely change the way I ate.

But then it became clear I also suffered from pre-diabetes, so my PCP sent me for diabetic counseling. Yes, I did know quite a bit already, but I did not know everything about diabetes…specifically, how to combine the two diets.  This is something my first renal dietician, good as she was, couldn’t answer. Well, maybe the diabetes counselor could.

Remember, this time we were not dealing with keeping sodium, potassium, and phosphorous under control to spare the kidneys. This time we were concerned with blood sugar.

I got some useful suggestions about herbs and spices I could use instead of salt.  This was not helpful for me since I’d already done some successful experiences with herbs and spices and discontinued the use of salt eight years ago when I was first diagnosed with CKD.

I was warned against hypertension and urged to keep it under 140/80, something I’d already been doing since my CKD diagnose. I was urged to avoid stress and work on weight management.  Again, been doing that for years.  Then I was educated about the value of sleep… again, nothing new here. But what about combining the two diets?

Scan0001Well, we did get to a meal plan. But it was unacceptable with the CKD. I was on a 1200 calorie diet to lose weight. Here I was urged to eat 1500 calories to lose weight and 1843 to maintain. But what really dissuaded me from adopting this meal plan was that it called for over four servings of fruit and four of vegetables when the renal diet limited me to three of each. I wasn’t willing to ingest that much phosphorous/potassium. In addition, it called for six fats a day, whereas the renal diet calls for five.

*sigh* So that wasn’t the way to combine the renal and pre-diabetes diets.

But then I went to the second renal nutritionist just last week and started to understand how to combine the two diets. Finally! She dealt solely with carbohydrates without specifying whether they be fruit, vegetable or grain. She explained that 15 gms. is a carbohydrate portion or choice. She explained that they should be paired with protein or fact to control my blood sugar. Now that was news to me.

While the diabetes counselor offered the same information about eating three meals with two snacks in between, it didn’t work for me because of the amount of food – most with potassium and phosphorous counts that were too high for the CKD – but here I was eating what I could with specific carbohydrate distributions for each meal or snack.

black breadIt was the same portions as the CKD diet, only with the gram count added.  For example, a slice of bread, 1/3 cup cooked pasta, 1/2 cup cooked cereal, or 3 cups of popcorn (no salt) are each one portion of my grain allotment daily just as they are on the prediabetes diet. The three allotments of fruit and vegetable, too. While I don’t care for dairy, I could still have the same amount of milk – if I drank milk, that is.  I had three carb choices at breakfast and lunch, but two at dinner.  There was also a carb unit for each snack.

There were no carb units assigned to meats or fats because they don’t affect blood sugar, but I still needed to pay attention to them for the CKD.  Well, that could be done just as I’d done it since my diagnosis: little or no red meat and keep it to five or six ounces. As for the fats, same cautions as with the CKD diet: avoid saturated fats and eliminate trans fat.

The hardest part about combining the two diets for me is consistency.  For the pre-diabetes, eating at the same time each day is preferable. I was used to eating whenVictorian clock I got hungry… before I saw the diabetes counselor. Then after taking her advice, right after I woke up and no longer than six hours – at the most – between meals or meals and snacks.

While that’s certainly feasible, I’m a writer.  I don’t like to leave the computer when I’m popping.  But now I do.  If I want to keep on being a writer, if I want to keep on being alive (okay, so that’s a bit dramatic), I have to take care of myself. So now I eat more often, try to be consistent about when I eat and sometimes even set an alarm on my phone to remind me to get up and go eat something. I’ll live. Well, that is the point: to live.

By the way, I’m having such fun devising the index for both The Books of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Books of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 that I wonder if maybe, just maybe, I’m taking a little more time than I need to.  It’s okay to think that’s weird, you know. I’ve heard it before.

IMG_1398

Until next week,

Keep living your life!

 

Another Infection? 

I noticed I often develop an infection at the site of a simple cut, one I treated with antibiotic when I first received it. You know I’m a writer, but did you know I like to write long hand sometimes?  I think those yellow legal pads have extra thin paper made purposely for paper cuts.

There are times I am hopeless in the kitchen, too.  That’s usually when I have my mind on my writing or the Victorian murder mystery I’m reading.  firworksWell, lately I’ve had my mind on my daughter’s new career, my step-daughter’s promotion to first female head instructor for Krav Maga here in Phoenix, the publication of my new book and getting the third one ready for print, my almost son-in-law’s new career {another new career!}, or our trip to Meteor Crater.

I digress.  Back to infections. This made no sense… until I remembered that my immune system was already compromised by my Chronic Kidney Disease.  OMG!  As if we didn’t have enough to deal with concentrating on diet, exercise, sleep, rest, inoculations, creatinine and GFR monitoring. Might as well take a deep breath and explore this one, too.

So, just what is an infection anyway?  According to the Free Dictionary (Medical) at http://medical-dictionary.thefreedictionary.com/, it’s

 invasion and multiplication of microorganisms in body tissues, especially that causing local cellular injury due to competitive metabolism, toxins, intracellular replication, or antigen-antibody response.

downloadUhhh, this definition may have exacerbated our confusion so we’ll need a few more definitions. I’d say we all know that toxins are poisons, and microorganisms are those teeny, weeny little living things you can’t see with the naked eye.

As for intra – Hunter College Latin and Greek roots class a million years ago to the rescue – that means within. Add cellular and you have within the cells. Add replication and you end up with bacteria making copies {replication} of itself within the cells to the best of my knowledge.

Undergoing immunology treatments myself, I remember the phlebotomist in the office telling me that the layman’s term for antigen-antibody reaction is allergic reaction.

And now?  Oh right.  What do frequent infections have to do with our already compromised immune system.

This is what I found on DaVita’s site at http://www.davita.com/kidney-disease/overview/symptoms-and-diagnosis/infections-and-chronic-kidney-disease/e/4734

People with kidney disease  can be more prone to infection because of related conditions such as diabetesinadequate calorie and protein intake, and the access site can be vulnerable to infection.

Now, we all know I’ve been successfully fighting to stay pre-diabetic for years, so I’m not a diabetic.  And we all know I’m at stage 3A, so I have no access site.  That’s something you encounter when you start dialysis at stage 5.

Ahhhh, but I am restricted to five ounces of protein a day and 1200 calories. Neither of these is inadequate for a woman my age and weight.  Or are they?ham

I didn’t know, really. But a site with the unlikely name of Breaking Muscle seemed to.  I found them at http://breakingmuscle.com/nutrition/how-much-protein-do-you-need-science-weighs. Their answer? .36 grams/pound/day.

Apparently, you just multiply what you weight by .36.  Let’s say I weighed 125 pounds {Will you please get up off the floor and stop laughing?}. I’d need to eat a minimum of 45 grams of protein. That’s less than two ounces.

What about the days I just don’t feel like eating any protein?  It’s surprising how you can lose your taste for it.  Or maybe I’m just not bothering to consume enough calories each day.  Considering that I’m not underweight {hah!}, these are both hypothetic situations.

Kidney Service China at http://www.kidneyservicechina.com/ckd-basics/1546.html explained the connection between CKD and infection this way.

Besides {proteinuria}, damaged kidney can cause lots of toxins and wastes’ accumulation in blood, while these substances will be transplanted to everywhere of our body. Many of them are harmful to the organs and tissues of our body, and they can cause damage to our immunity. For example, marrow is a major organ of our immune system, while some toxins can inhibit its function of producing cells.Blood Oxygen Cycle Picture 400dpi jpg

This makes sense to me. I visualize it as bacteria streaming into your cut from the outside, while the already overloaded blood is doing its darnedest to keep them out… and not succeeding in its sluggish, polluted state.  Hope that’s not too violent an image for you.

Most of the other information I was able to dig up had to do with ESRD {end state renal disease} and the inflammatory state of your body at this stage.  I did find it interesting, but we’re not quite there yet – thank goodness.

The_Book_of_Blogs-_M_Cover_for_KindleChanging the subject: the digital version of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 is free today.  That’s right; the digital version of the book is free today. Why?  As a reward for reading the entire blog instead of just the first few paragraphs.  Got you!  It’s because today is my birthday and I wanted to give you a present.  Also because I couldn’t think of a better way to get the word about moderate stage chronic kidney disease out there.  Thank you for celebrating with me.

Oh, the print copy of the book is being released today, too.  Now that’s a present for me.  Both are available on Amazon.com.  Do let me know what you think of the cover.

And, please, write a review after you’ve read the book. I’ve had some of my 17, 000 readers in 109 countries tell me they aren’t writing a review because they don’t want their name in plain view for the entire world to see.  Guess what? You can sign as anonymous, or use your nickname,  or make up an alter ego name and use that.

Until next week,

Keep living your life!

Back To Basics

My daughter Abby and I just spent the weekend at Landmark Education’s Access to Communication Course.  If I weren’t already a Landmark graduate, I’d say I couldn’t believe what I learned.  Since I am a Landmark graduate, I’ll share with you my delight at learning just how simple and loving communication can be. people talking

Of course, I’d urge you graduates reading this blog to register for this course and those of you who aren’t yet graduates to explore the Landmark Forum.  You might get an idea of how forceful this work is when I tell you that my upcoming marriage is a result of it.

As a matter of fact, there’s an introduction this Wednesday night at the Scottsdale center from 7 – 11.  The address is 16100 North Greenway-Hayden Loop, Suite 108, and the phone number is 602-222-1110. You can always contact me and we can go together.

I chose communication about CKD as the topic for this week’s blog because I have been doing just that… and being startled over and over again at the number of people I’ve spoken with that know nothing about Chronic Kidney Disease.  So, this week, we go back to basics.

Anyone know what the kidneys are and what they do?  Will the gentleman with his hand raised in the back of the room answer the question, please?  Oh, it’s my future son-in-law, Sean, and he’s quoting me!

kidney locationOn page 1 of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, Gail Rae wrote, “Later, I learned that the kidneys were two reddish brown organs which lay on the muscles of the back on either side of your spine above hipbone level and below the diaphragm… Some have compared their size to that of a clenched fist or a large computer mouse, and the right one lies lower than the left since the liver is on that side.” [You can order digital copies of the book at Amazon.com and B&N.com.  Print copies are available at Amazon.com and myckdexperience@gmail.com.]

I couldn’t have said it better myself.  [ Ha Ha. Get it?  I DID say it.] Now about their function… Ah, lady on the left side of the room. Estelle, my dear East Coast buddy, I didn’t know you were here.

According to The 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/yourkidneys/#kidneys, “Every day, a person’s kidneys process about 200 quarts of blood to sift out about 2 quarts of waste products and extra water. The wastes and extra water become urine, which flows to the bladder through tubes called ureters. The bladder stores urine until releasing it through urination.” Nice job!

What else do they do?  Nima?  Yes, you may answer questions even though you’re my daughter.  Well then:

  • Control your body’s chemical balance
  • Help control your blood pressure
  • Help keep your bones healthyBook signing
  • Help you make red blood cells

You’ve learned well.  What was your source?  The American Kidney Fund at http://www.kidneyfund.org/kidney-health/kidney-basics/your-kidneys.html.

That’s a good one, as are all the others mentioned here.  They each contain far more information than we’ve included in today’s blog and can make you a sort of neophyte kidney expert.  Well, maybe someone who knows about his/her early stage chronic kidney disease or that of someone you know and/or love might be a more realistic title.

More?  Okay.  How many people have chronic kidney disease?  Look there.  Lara, my step-daughter, who is in very good health (thank the powers that be) is here.  Ummm, I did tell you that number but it’s changed a bit since then.  It’s 26 million in the USA alone and raising.  Those are the diagnosed people.  There are millions of other who have not yet realized they have CKD according to The National Kidney Foundation at     http://www.kidney.org/kidneydisease/aboutckd.cfm#facts

How do you know if you have it?  Excellent question, Kelly. As another healthy person, my step-daughter has asked an important question. Since there are rarely symptoms, it’s all about blood and urine tests.  A simply stated E-how article at http://www.ehow.com/how_2051919_test-kidney-disease.html explains without overwhelming.  Basically, your doctor is looking for protein in your urine and at the following values in your blood test: GFR (glomerular filtration rate) and bun (blood urea nitrogen).  I don’t advocate eHow for medical information, but this one is not that bad.

I will, Bear, right now.  The wonderful man I’ll be marrying in April asked me to make certain I write about the renal diet.  He follows it with me so we don’t have to cook two different meals when we do cook and he lost 60 pounds in the first several months of doing so.  I could hate him for that, except that I already love him.

The renal diet is only one part of the treatment. [There’s also exercise, adequate sleep and lack of stress.] I thought the one at Buzzle (http://www.buzzle.com/articles/diet-for-chronic-kidney-disease-ckd.html) was a good example until I realized there was no potassium restriction on this diet.  I follow that of the Northern Arizona Council of Renal Dietitians. What this tells us is that you need to pay attention to the specific renal diet the nephrologist (kidney and high blood pressure expert) has given you or your loved one, friend, and/or co-worker.water melon

Basically, sodium, phosphorous, protein, potassium and fluids are restricted. Sometimes, I feel like my fluids are exaggerated rather than restricted – like when I’m writing – and have to remind myself to drink so I can meet my 64 ounces/per day ‘limit.’

My neighbor and friend, Amy, just asked me to backtrack a bit and discuss the causes of CKD.  That would be helpful, wouldn’t it?

eMedicine at http://www.emedicinehealth.com/chronic_kidney_disease/page3_em.htmers this.  Two thirds of ckd is caused by high blood pressure or diabetes, but they neglected to mention that sometimes ckd is simply a result of growing older – as in my case.

You know the people I mentioned are not in my office as I write this blog, so here’s a public thank you to each of them for the loan of their names.  I kind of think they would have offered those answers or asked these questions if they were here with me right now.

Check out those websites.  They offer quite a bit of information.

Until next week,

Keep living your life!

It’s Been Raining In Arizona

Rain is not that usual out here, although I do my best to entice it by watering my palm trees every Sunday and threatening to wash my little white car with the red side bars any time I see dark, heavy clouds.  Of course that’s not the rain I’m referring to in this blog.  After a long, dormant period, new sites have been raining on my head.  Someone once told me everything happens in cycles, maybe she was right.

Merry Schiff, a new Facebook reader, brought the following site to my attention. (WAIT!  Merry read the book and wrote a review on Amazon.  How about each of you who has read the book do the same?  It will help get the book into the hands of every newly diagnosed CKD patient – the people I wrote it for.) The site is Safe Kidney Care.  Apparently, it eminated from a clinical study.  I know when I tried to submit an e-mail, it asked me for my bracelet ID, then explained that these were given to each participant of the study.  But you don’t need to have been a member of this study in order to view the site.  It contains neat, easily understood explanations of GFR, CKD, the kidneys themselves, what causes kidney disease, and urine protein.  There’s a glossary and a FAQ section.  What I liked best about it is the safety concerns issues: what to tell your doctor, pill and foods to avoid, fluid intake, drugs that are all right with CKD, heart and diabetes info, Medical follow up, x-rays and other radiological tests.  I also noticed a button for “Tests” and another for “Kidney Function (GFR) Calculator.” I tried their GFR calculator and found it accurate as far as I could tell.  Their resource list is almost as comprehensive as the one in my book, with one or two new additions (Got to go look those up.) This information was on the “About” page: The material of this website was developed and assembled by Dr. Jeffrey C. Fink, M.D., M.S., staff nephrologist, Associate Professor, and Director of the Early Renal Insufficiency (ERI) Program, in collaboration with the staff of the ERI Program and Safe Kidney Care Project, at the University of Maryland, School of Medicine. Funding was provided by grant R01 DK084017 from the National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health.  The address for the site is: http:www.safekidneycare.org/patient_family.php.

Then there’s a source I’ve come across several times in the last four years and decided it was time to let you know about it.  Live Now: Rethink Kidney Diseases is from Baxter, another resource I included in my book.  While it is generally aimed at dialysis patients, there’s still some info that will work for those of us in the early stages. The Food and Nutrition section is especially helpful.  The Living, Support, and Inspire sections – while aimed at dialysis patients as mentioned – offers some insights into early stage CKD but you’ll have to spend time gleaning them.  This website is: http://livenow.info/GetSupport.aspx.

The third site that dropped from the sky is that of a telephone application for CKD patients called KidneyDiet. As the name implies, it is simple and to the point.  I downloaded it for $4.99.  It is meant to track the phosphorus, potassium, protein, sodium, carbohydrates, cholesterol, fat, and calories of the food you eat.  You first enter the limits of each your nephrologist has given you.  This only has to be entered once. Then you enter each food you’ve eaten during each meal – item by item – and it compares your totals in each category to your limits.  Portions can be changed which is very helpful, but you cannot add new foods.  If you regularly eat foods that are not on the lists available for this app, I’m not certain this is for you.  I really like that it covers everything we need to watch as CKDers, but I wonder if I want to limit my food intake to what is on these lengthy lists.  Could it  be that I’m one of the few who has found foods on my renal diet that are not the norm?  The address for this site is: http://www.kidneydiet.com.

You’ll notice all three of these new sites have been added to the blog roll.  This is not an endorsement of any of them.  I simply want you to be aware of what is available that you might find a good fit for you.

Talking about adding, I tried to add an “Add to the cart” button for the book to the blog, but I didn’t do so well with that.  You can still direct order the book by clicking on the book title on the blog roll.  That will take you to the website for What Is It And How Did I Get It? Early Stage Chronic Kidney Disease  where there IS a functioning “Add to the cart” button.

Ah, lest I neglect to mention (as long as we’re talking about adding), there’s yet another new addition to the family.  Welcome to Temperance, Lara’s newest.  (She’s a “Bones” fan, too)

Temprance

Until next week,

Keep living your life!