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okarol
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« on: May 06, 2010, 12:02:04 PM »

Slowing the Progression of Kidney Disease

By Stephen Z. Fadem, MD, FACP

Chronic kidney disease (CKD) is a condition where kidney damage leads to a progressive deterioration in kidney function. It has many causes, and regardless of the original disease or condition, it can result in kidney failure. Most of the time, however, it does not progress to kidney failure. This may happen because secondary conditions that accompany CKD overcome the patient who dies of a cardiovascular event. Along with advancing disease, CKD is an independent risk factor for cardiovascular disease. Unfortunately, many people who have kidney disease will experience a cardiac event or stroke before they ever reach the stage where dialysis is necessary.

In the last several years, there have been many clinical trials, the results of which have guided us to help prepare patients and greatly delay the progression of disease. The incentives to prevent kidney disease are great, for in its final stages, dialysis or a kidney transplant is necessary.

What can be done to either delay the progression of disease or, in many instances, prevent it? This brief overview will list ten steps that, in cooperation with your physician, you can follow to help slow advancing disease. The earlier one starts, the better the chances of helping preserve kidney function and reducing cardiovascular disease morbidity.

1. Treat the Underlying Condition

Several general diseases, such as lupus erythematosus or vasculitis (inflammation of a blood or lymph vessel), can cause kidney disease. Early management may stop the disease before progression advances. Diabetes and hypertension, which are discussed later in this article, can also be aggressively treated with positive outcomes.

Glomerulonephritis (inflammation of the kidney filter) may also be the original condition, and early attention may bring the disease into remission. Diseases of blood vessels that feed the kidney may cause ischemic kidney, and may respond to intervention or surgery. If ignored, infections, urologic disorders and tubulointerstitial disease can also harm the kidney. The best management plan is for your doctor to perform a thorough diagnostic evaluation, determine the cause of kidney disease, and then commence with appropriate therapy whenever possible.

2. Blood Pressure Control

According to the National Heart, Lung, and Blood Institute (NHLBI), 65 million Americans have hypertension. The Centers for Disease Control (CDC) reports 25 percent of the general population, and more than 40 percent of African Americans, have high blood pressure. Less than half of patients diagnosed with hypertension were being treated and only a quarter had blood pressures below 140/90 mm Hg.1 This is concerning because in major longitudinal studies of kidney disease, both in the U.S. and in Europe, hypertension was inextricably linked with kidney disease. High blood pressure not only causes kidney disease, but is caused by it.

It is a physical property of our blood vessels that they can only contain so much fluid before the pressure against the sides of the vessels stimulates long-term damage to blood vessel walls. Once this occurs, the walls thicken and become inelastic. It is the elasticity of the walls that acts as a shock absorber, buffering the effect of our heart, a mighty pump, on target organs such as the brain and kidney. Furthermore, stiff, narrowed and inelastic vessels increase the force in which the heart needs to pump, which ultimately damages the heart. It is no surprise that 74 percent of kidney disease patients who undergo dialysis treatments also have heart damage.2 & 3

There have been many studies that link high blood pressure and kidney disease, and also numerous clinical trials that demonstrate that tight blood pressure control can reduce progression of kidney disease. The National Kidney Foundation published the K/DOQI Clinical Practice Guidelines for the management of high blood pressure with kidney disease. The current recommendation is that blood pressure be kept below 130/80. In African Americans and individuals with proteinuria, the recommendation is to keep the systolic blood pressure as low as 110.4

3. Using an ACE Inhibitor or ARB

Meanwhile, as kidney disease progresses, the number of filters in the kidney decreases. When the pressure is distributed among a diminished number of filters, the pressure on each filter rises. This pressure is associated with enlargement of the filter and puts into place a chain reaction that damages the elements of the filter, which causes further damage and even more pressure on the few surviving filters. Given this picture, it makes sense that if there was a medicine that could reduce pressure against the filter, perhaps by dilating the blood vessels that take blood away from the filter (efferent arteriole), kidney function could be preserved. There are such medicines – angiotensin receptor blockers (ARBs).

Initial studies by Lewis5 have demonstrated that an angiotensin converting enzyme (ACE) inhibitor would reduce the doubling time of creatinine (a marker of disease progression) in type I diabetics. This study was later extended.6 In 2001, two independent trials appeared in the same issue of the New England Journal of Medicine,7, 8 and showed ARBs were effective in reducing the doubling time of creatinine in type II diabetics. Studies have also shown that not just for diabetes, but regardless of the cause, ACE inhibitors and ARBs reduce the progression of advancing disease.

4. Reducing Proteinuria

Not only is pressure associated with worsening kidney function, but also the passage of protein across a membrane. We can measure how much protein passes across the membrane – proteinuria. In the past, 24-hour urine specimens were collected. But it is just as accurate and much more convenient to simply perform a urine ratio of protein, or better, a type of protein known as albumin and creatinine (there’s that marker again). The angio-tensin blockers have the effect of lowering proteinuria independent of their blood pressure lowering effect. Thus, we can analyze the use of an ACE inhibitor, ARB or the combination of both to reduce proteinuria and likewise reduce the progression of disease.9

5. Controlling Diabetes

In 1993, a large clinical trial by the Diabetes Control and Compli-cations Trial Research Group (DCCT) was published that looked at differences in treating diabetes with conventional therapy and intensive therapy. Intensive therapy of 1,441 patients followed for a mean of 6.5 years demonstrated that maintaining the blood glucose levels close to normal reduced the development of diabetic retinopathy (the serious eye condition that accompanies diabetes), the development of neuropathy and albuminuria.10

6. Controlling Excess Body Mass

Once on dialysis, the body mass index (BMI) is not associated with a higher mortality rate, but in patients undergoing a transplant evaluation, it is associated with more progressive heart lesions. In predialysis patients, and certainly in the general population, obesity, (BMI more than 30) is associated with a variety of problems ranging from diabetes, hypertension, increased cardiovascular events, and a higher cancer rate. Currently, we are enduring an epidemic of obesity and consequently have a growing incidence of diabetes. Diabetes is a major cause of kidney disease. Although it is a paradoxical survival factor in end-stage renal disease (ESRD), in the CKD population it is an independent risk factor for disease development and progression.11

7. Exercising

Inflammation is associated with CKD and may be helped with physical exercise training. In animal studies, voluntary running, as opposed to forced running, lessened the progression of disease.12 In patients already on dialysis, exercising for one hour, twice a week, for three months lowered arterial stiffness, which offers a beneficial effect on the heart. It is inconclusive whether or not exercise programs will protect kidney function. However, if it is deemed safe by your physician, low impact exercise for 20 to 30 minutes a day may be beneficial. It is certain to improve the quality of life and well-being.

8. Controlling Lipids

Although cholesterol and triglyceride disorders, known as dyslipidemias, have been associated with kidney disease, it is still uncertain whether lipid-lowering therapy will protect the kidneys. In patients with ESRD, elevated cholesterol levels have not been associated with higher mortality rates in their predialysis counterparts. Other mechanisms may play a more predominant role in ESRD. Furthermore, a large clinical trial in Europe, soon to be published, did not show that atorvastatin changed the mortality rate in dialysis patients. Another large clinical trial, the Study of Heart and Renal Protection (SHARP) is ongoing. It will study 9,000 CKD patients with no known cardiac disease to see if lipid lowering agents will protect the heart and kidneys.

9. Refraining from Cigarette Smoking

Cigarette smoking has been associated with CKD progression, particularly by damaging small arteries. However, the responsible mechanisms for nicotine-induced kidney damage are unknown. Current and former smokers have a higher risk for proteinuria. There is evidence that proteinuria associated with smoking is irreversible, though it is possible that quitting might prevent further progressive disease. A second reason to stop cigarette smoking is that nicotine accelerates the progression of atherosclerosis. A trial started several years ago in Framingham, Mass., has demonstrated this. When the results of the DCCT (mentioned earlier) were reexamined, tobacco users consumed more fat, cholesterol and alcohol, and elevated the ratio of LDL to HDL (the bad to the good) cholesterol.13

10. Avoiding Drugs Known to Damage the Kidneys

Several medications are associated with the progression of CKD. In addition, since many medications are metabolized and excreted by the kidneys, decreased function leads to accumulation of pharmaceutical metabolic waste. This can be toxic to the kidney and other target organs. Many drugs used each day can promote kidney disease, even over-the-counter medicines. Non-steroidal, anti-inflammatory drugs such as ibuprofen and naproxen, have been associated with a type of kidney disease known as interstitial nephritis. Kidney patients should check with their doctors before starting any medication that they are not certain of, and to understand whether the drug is metabolized by the kidneys or liver. In drugs metabolized by the liver, secondary metabolites may accumulate and “clog” the enzyme systems that break down drugs. This promotes toxicity. Some drugs metabolized by liver enzymes can cause fatal cardiac rhythm disturbances if the enzyme system is overburdened and toxins are allowed to accumulate.14

Summary

Patients with kidney disease have many options to help slow its progression. These often require a major alignment in ones lifestyle, and as a secondary advantage, cardiovascular complications may be reduced. For some events, there is evidence confirmed by large clinical trials. For others, clinical trials may only be forthcoming for patients with kidney disease and we must look at the large trials that have been performed in the general population.

A tremendous effort is required to initiate and maintain a major lifestyle change, and it requires a great deal of trust that what one is attempting to accomplish will be of benefit. These resources should be of value to those seeking evidence and consensus from the clinical studies that have been performed in recent years.

References:

   1.

      Burt VL, Whelton P, Roccella EJ, et al. Prevalence of hypertension in the US adult population. Results from the Third National Health and Nutrition Examination Survey, 1988-1991. Hypertension 1995; 25(3):305-13.
   2.

      Harnett JD, Foley RN, Kent GM, Barre PE, Murray D, Parfrey PS. Congestive heart failure in dialysis patients: prevalence, incidence, prognosis and risk factors. Kidney Int 1995; 47(3):884-90.
   3.

      Goodkin DA, Young EW, Kurokawa K, Prutz K-G, Levin NW. Mortality among hemodialysis patients in Europe, Japan, and the United States: case-mix effects. Am J Kidney Dis 2004; 44(5 Suppl 3):16-21.
   4.

      K/DOQI clinical practice guidelines on hypertension and antihypertensive agents in chronic kidney disease. Am J Kidney Dis 2004; 43(5 Suppl 1):1-290.
   5.

      Lewis EJ, Hunsicker LG, Bain RP, Rohde RD. The effect of angiotensin-converting-enzyme inhibition on diabetic nephropathy. The Collaborative Study Group. N Engl J Med 1993;329(20):1456-62.
   6.

      Wilmer WA, Hebert LA, Lewis EJ, et al. Remission of nephrotic syndrome in type 1 diabetes: long-term follow-up of patients in the Captopril Study. Am J Kidney Dis 1999;34(2):308-14.
   7.

      Lewis EJ, Hunsicker LG, Clarke WR, et al. Renoprotective effect of the angiotensin-receptor antagonist irbesartan in patients with nephropathy due to type 2 diabetes. N Engl J Med 2001;345(12):851-60.
   8.

      Brenner BM, Cooper ME, de Zeeuw D, et al. Effects of losartan on renal and cardiovascular outcomes in patients with type 2 diabetes and nephropathy. N Engl J Med 2001;345(12):861-9.
   9.

      Remuzzi G, Chiurchiu C, Ruggenenti P. Proteinuria predicting outcome in renal disease: nondiabetic nephropathies (REIN). Kidney Int Suppl 2004(92):90-6.
  10.

      The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent diabetes mellitus. The Diabetes Control and Complications Trial Research Group. N Engl J Med 1993;329(14):977-86.
  11.

      Wiggins KJ, Johnson DW. The influence of obesity on the development and survival outcomes of chronic kidney disease. Adv Chronic Kidney Dis 2005;12(1):49-55.
  12.

      Loupal G, Url A, Skalicky M, Viidik A. Physical exercise retards the development of chronic nephropathy in the ageing rat as efficiently as food restriction does. Gerontology 2005; 51(2):83-93.
  13.

      Cundiff DK. Diet and tobacco use: analysis of data from the diabetic control and complications trial, a randomized study. MedGenMed 2002; 4(1):2.
  14.

      Aronoff G, Brater DC, Schrier R, Bennett WM. Use of drugs in patients with renal insufficiency. Workshop report. Blood Purif 1994;12(1):14-9.

Stephen Z. Fadem, MD, FACP, serves as a vice president of the AAKP National Board of Directors and is a member of the AAKP Medical Advisory Board. He is a practicing nephrologist in Houston.

This article originally appeared in the September/October 2005 issue of Kidney Beginnings: The Magazine, Vol. 4, No. 3.

http://www.aakp.org/aakp-library/Kidney-disease-progression/
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Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
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She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
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« Reply #1 on: May 06, 2010, 03:09:35 PM »

Good to have a list with suggestions to remind us of what we need to be doing.   :2thumbsup;     I think (and I may be naive) that the things I have changed in my life have helped me stay at the level I am.  I may be just lucky.  But it doesn't hurt to do as much as you can to slow the progression. 
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Sunny

« Reply #2 on: May 06, 2010, 10:15:41 PM »

Nice to know my doctors have been following the good procedures outlined here.
It's not always easy to do, but I try my best to follow good procedures in order to prolong my kidneys.
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MooseMom
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« Reply #3 on: May 06, 2010, 10:20:49 PM »

I have worked very, very hard to keep my kidney function for as long as possible, and I will continue to do so.  Every day without dialysis is a blessing, but I know those days will come to an end.  At least I will know that my neph and I did everything we could to keep me as healthy as possible as long as possible.  It makes me mad to see people neglecting their health and risking CKD when here I am, always trying to be healthy but still having fsgs.
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« Reply #4 on: May 06, 2010, 10:23:47 PM »

I am forever greatful that my neph put me on coversyl (an ACE inhibitor) in 1993, long before that study came out. I am sure it kept my kidneys going a few years. I've also been exercising, not smoking and have a BMI of 23... doing my best to keep everything in the black.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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« Reply #5 on: October 07, 2010, 07:53:24 PM »

 :bump;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #6 on: November 17, 2010, 05:43:46 PM »

I've been after motivation to do more bike riding so thanks, Karol. I think I can tick all of the boxes except the exercise one - and while I don't need it for weight I DO need it for health. So....ding,ding, I'm off on my bike today.
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« Reply #7 on: December 18, 2011, 03:16:15 AM »

I am forever greateful that my neph put me on coversyl (an ACE inhibitor) in 1993, long before that study came out. I am sure it kept my kidneys going a few years. I've also been exercising, not smoking and have a BMI of 23... doing my best to keep everything in the black.

Unfortunately my body reacted allergic to “Coversyl”
and the allergic reaction caused my hypertension to get out of control...
so, “Coversyl” was not an answer in my case...

But I am a non-smoking, slim vegetarian and I go for my littlle walks on a very regular basis.

During the winter-months I “go for walks” in museums or art-galleries where I can sit down
and take a rest whilst studying an interesting painting at the same time...

My salt- and potassium-intakes are regulated by my vegetarian diet
and my last Creatinine-result was again the same as it was 3˝ years ago.

My pre-Dialysis-kidney-function usually fluctuates between 10-12%,
and my December-Creatinine-Urea-Sodium-Potassium-blood-test showed that my kidney function is 12.3%...
I look at this result as an early 2011-Christmas-present and it makes me very happy...

I do believe that a pre-Dialysis-patient can do a lot to slow down the deterioration of their kidney-function...
...even if they are left without a doctor or specialist to go to, as I am ... but it comes at a price and involves lots of discipline...
...and lots of checking-up on the Internet... and at times that can be extremely boring, very trying and tiresome...

but it certainly is well worth all the effort!
 
 

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« Reply #8 on: March 27, 2012, 10:08:16 PM »

This advice has been absolutely invaluable to me in my fight against kidney disease and I wanted to share my latest results in hopes that it may help others know that it can be effective. When I started down this path (I didn't call it a journey just for you MooseMom), my creatinine was 1.26 (111 for the international folks) - a eGFR of 60 which was borderline CKD stage 2/3. My results over the past 1.5 years have gone to 1.2, 1.0, 1.04, 1.06 and today, .94 - a eGFR of >100.  My BUN has also gone from borderline to the lower part of normal range. I know a large part of the lowering of creatinine is from my ultra-low protein diet (probably close to .20) and not really kidney improvement per se but the numbers are still encouraging.

I've also followed an ultra-low protein diet, vegan diet, inspired by Dr. Walser and Dr. Fuhrman respectively. I've also added some supplements - alpha-lipoic acid (anti-oxidant particularly helpful for the kidneys) and pycnogenol (lowers protein leakage in urine) which have both been researched to help in the fight against kidney disease.

In addressing this list I've:

1) Treat the Underlying Disease
I do not have a low enough eGFR to get a biopsy so can't address this point - hoping to keep it that way.

2) Blood Pressure Control
Critical - I've monitored my BP very closely (2 a day) and adjusted my meds so that they have optimal effect for me. I ended up shifting everything except my diuretic from the morning to bed time. I exercise in the morning and have blood pressure lowering affects from that. You must figure this out for yourself because no one is going to do it for you.

3) Using an ACE Inhibitor or an ARB
I have a maxed out dosage of an ARB (Valsartan).  I tried to lower it at one point then figured out it was crazy to lower something that's renal protective.

4) Reduce Proteinuria
I use the ARB, take pycnogenol, and follow an ultra-low protein (about 30 grams/day including some amino acid supplementation), 98% vegan, about 70% raw food, anti-inflammatory, very little processed food, sub 1000 mg/day sodium diet.  It's taken me over a year to change but I'm really happy preparing these different foods.

5) Controlling Diabetes
I had what I think doctors are terming metabolic syndrome, which is a pre-cursor to diabetes and kidney disease. I have my blood sugar well in controll and the diet I'm on is actually considered to reverse Type 2 diabetes in many cases.

6) Controlling Excess Body Mass
For the first time in my life I don't worry about eating too much. I continue to lose weight and feel great - down about 70 pounds now and well within my normal BMI for the first time in my adult life.

7) Exercising
Aerobic exercise (elliptical machine) for 40+ minutes every day - I'll take a day off if needed but I exercise even on vacation. In fact, I exercise more on vacation because I have the time and it makes me feel great.

8 ) Controlling lipids
Some decent success here. Cholesterol sub 170s for the first time as an adult. Could stand to get my LDL a little lower (I'm still above 100 here which is out of range) and HDL a little higher.  Not sure how I can lower my LDL at this point but will focus on that next.

9) Refrain from Cigarette Smoking
Never did but gave up very occasional cigars.

10) Avoid Drugs Known to Damage Kidneys
I stay very vigilant and educated here and worked with the doctor to keep me away from anything that could remotely hurt my kidneys.

I know several people here that have remained vigilante and been able to dramatically slow the progression of kidney disease (MooseMom and Kristina have been my role models). I wish you all well in your fight against kidney disease.
« Last Edit: March 30, 2012, 01:34:26 AM by AguynamedKim » Logged

MooseMom
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« Reply #9 on: March 28, 2012, 01:36:10 AM »

Kim, I am absolutely thrilled to pieces that your numbers are so great!  Well done you!  You have worked SO hard to get fit and keep yourself well, and these numbers are a well deserved reward.  The important thing to take away is the notion that whatever caused your kidney dysfunction is NOT a progressive or sclerotic process, so I would be very surprised indeed if you were to continue with your regimen and have further renal problems.

Some of us have diseases for which there is no cure nor a treatment, as such.  We instead have to protect our bodies from the effects of the disease.  Furthermore, one person with fsgs or PKD will present and progress in different ways and at different rates than another person with the same malady.

As for BP control, I, too, had read that for those taking more than one bp med, good results have been obtained if one med is taken in the morning and the other(s) in the evening.  I tried doing that, but then I got worried that I should really check with my doc first.  My bp has always been well controlled with my three bp meds all taken together in the AM, and I didn't want to fix what wasn't broken.  The nurse said that it really didn't matter when I took them, so I dropped the subject.  But I may take it up again with my neph.

My one regret is that I didn't realize my kidney function was so bad until it was sorta too late to go on a vegetarian or vegan diet.  My egfr was in the mid 20s the first time I saw my neph here in the US, and by that time, I had to go on the pre-renal diet which is incredibly restrictive.  There IS such a thing as too many fruits and vegetables for us pre-renal people!  As time went on, I saw my own mother become undernourished while on dialysis, and I began to worry about also becoming undernourished.  So I didn't go on the ultra-low protein diet, but I did drastically cut back on my protein intake (unfortunately, though, I had bacon and eggs for dinner.  LOL!  I was tired and it was late and this was the easy way out.  The bacon was NOT processed, however...no phosphates!  Still, I won't be doing THAT again for a while!).  I would SO love to find a way to become vegetarian on the pre-renal diet, but with potassium being such a problem, I just don't know how to do that, especially since the high phos content of whole grains is a problem.  I hate having to eat white rice and white bread!  I often wonder how people from India who are vegetarian and are renal patients cope with this dietary conundrum.  I'll have to research that.  If I ever get a transplant, my first post-surgical meal is going to be mainly beans and potatoes!  I have no interest in stuff like ice cream, cheese, pizza or coke.  Give me beans!!!  Give me more fruit!!!

I take three different meds for blood lipid control, and I am lucky that they are effective and that I've never had a problem with them.  My overall cholesterol is 160, but my LDL and HDL are ever so slightly out of normal range, and my triglycerides are still high, but considering that my cholesterol/triglycerides were 2100/550 before treatment, I'm thrilled with my results which have remained consistent for the past 7 years.

I have worked hard to maintain my health, but the sad fact remains that my egfr is declining more readily now, albeit still slowly.  I've gone from 26 to 14 in seven years, and I don't think that is too bad.  I would like to think that because I have been diligent, life at egfr 14 is manageable.  I don't feel unwell, and I'm told that I don't look like a kidney patient, so those are good things for which I am extremely grateful.  But it does remain a race against time.  Will I get a pre-emptive transplant?  Will my sad, pathetic little kidneys hold out until I get the call?  I don't know, but while I wait, I'll keep taking my pills, staying away from more eggs and bacon, continue to exercise and show myself some mercy in letting myself hope just a little bit for a modicum of good fortune.

Again, Kim, I am so very happy that things are going so well for you.  You deserve a long and happy life, free from the anxiety of kidney disease.  You ARE getting better, and you're getting better because you are working so hard to do so.  My heartiest congratulations to you!!!
« Last Edit: March 28, 2012, 01:37:50 AM by MooseMom » Logged

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« Reply #10 on: March 29, 2012, 12:50:29 PM »

I used to be a vegetarian, and part of how I knew something was wrong was I was feeling really sick--weak and dizzy.  Probably hyperkalemia?  My gfr is 15or 16 now, a d I'm afraid of rocking the boat, too.  I keep hearing about these super low-protein diets keeping people off of dialysis, but my doctor insists that it's nonsense.  I hope that I did 't make things worse by listening to him.  I am just on atenolol and usually have the bp at about 130/72 or so, sometimes lower (lately it's been lower).  Low-dose, too, 25mg per day.  50 made me very weak, thready pulse.

anyone else had success in the low-protein, and how did your nephs feel about it?
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35 years old, first dx w/  chronic renal insufficiency at  28, pre-dialysis

born with persistent cloaca--have you heard of it?  Probably not, that's ok.

lots of surgeries, solitary left kidney (congenital)

chronic uti's/pyelonephritis

AV fistula May 2012
Kidney Transplant from my husband Jan. 16, 2013
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« Reply #11 on: March 30, 2012, 03:00:41 AM »

MooseMom, thank you for the encouragement and inspiration to stay vigilante.  Without your help (and IHD), I know I would not be where I am today.  One of the things MooseMom told me when I first learned about my kidney disease and I told her I was working on changing to a very restrictive renal diet was that I might not have to be overly restrictive (potassium specifically) since I was at an earlier stage of the disease.  That is what enabled me to switch to a very nutrient dense, vegan diet.  I would advise anyone who wanted to start one to read Dr. Walser's book first and educate yourself heavily.  The version he has in the book does focus more on a restrictive version of the ultra-low protein diet whereas I have a true luxury of really just eating an extremely healthy diet that's much lower in protein than most people.  It's a "nutritarian" diet as defined by Dr. Fuhrman where I make modifications to further reduce protein.  His diet is lower in protein (but still plenty for a healthy person - 50-70 grams per day) so it's easier to make it ultra-low.

The underlying cause of your kidney disease, stage, and overall health will all play into how rapidly your disease can progress.  I draw inspiration from MooseMom and Kristina who both have forms of CKD (FSGS and auto-immune respectively) that can be largely unpredictable but they've done everything they can to control what they can to slow the disease - I believe dramatically.  MooseMom, when you do get a transplant (and you will), I'll be happy to cook some beans for you, perhaps a savory kale, cannellini bean, and potato soup: http://allrecipes.com/recipe/savory-kale-cannellini-bean-and-potato-soup/

In many countries, a low-protein diet is one of the first approaches to treat kidney disease.  In America, where most of the medical establishment thinks that practicing medicine in simply prescribing medications, doing surgeries and treating symptoms, it's not a surprise that most doctors don't believe in it.  There have been limited studies done in America because there's little interest in funding something that doesn't have the potential to make a drug company more money.  I never used to be this cynical but have grown far more educated as of late.  I found it interesting that my dog, who was suspected to have kidney disease (turn's out she has Cushing's disease) was prescribed renal friendly pet food.  What was renal friendly about it?  It was low protein.  I found it funny that there's still a fundamental mistrust by US doctors even though there's been a fair amount of non-US studies confirming that ultra-low protein diets can (not always, but can) slow the progression of kidney disease.  I know from educating myself here at IHD that if I can delay the disease even a day, it's worth doing.

While I stay away from as much processed food as possible, I was looking at some bread the other day from Ener-g foods at my Wholefoods grocery store and saw that it was way low in protein (and didn't seem to have too many crazy other ingredients) so I gave it a try.  I learned you really have to toast it but when toasted, it was quite good for what it was (a bread with almost no protein).  So I did some more research on the company.  The company got a large part of it's start when it was approached by Dr. Scribner (the father of dialysis) to help them make a low-protein bread to help patients with ESRD.  The reason was different back then in that Dr. Scribner had only one machine for thousands of patients and he was trying to reduce the amount of treatment needed (today it is recognized that people on dialysis need more protein) but I found it fascinating that there was a tie-back to the man himself, Dr. Scribner.
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« Reply #12 on: March 30, 2012, 12:44:22 PM »

Nice tip on the bread.  I'll look for it.  Low-sodium too? I have been eating "Smart" bread that's low-sodium.
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35 years old, first dx w/  chronic renal insufficiency at  28, pre-dialysis

born with persistent cloaca--have you heard of it?  Probably not, that's ok.

lots of surgeries, solitary left kidney (congenital)

chronic uti's/pyelonephritis

AV fistula May 2012
Kidney Transplant from my husband Jan. 16, 2013
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« Reply #13 on: March 30, 2012, 12:59:41 PM »

Kim, I've always wondered about the difference between a "low" protein diet and an "ultra-low" protein diet, other than the obvious.  LOL!  I mean, are you aware of any studies that might have been done that measure the outcomes of renal patients who follow a "low" protein diet vs one that is ultra low?  I'd be very interested in seeing that!

My healthcare team have never advocated the ultra-low protein diet, but they HAVE advocated a low protein regimen which seems to be defined as reducing the daily serving of animal/fish protein to 3 oz or about the size of a deck of cards.  That's my daily goal.  I did attempt to follow the ultra low diet and even bought the amino acid supplement, but it just got all on top of me and I became worried about the potassium.

Kim, what does your wife think of your diet?  Does she eat like you do, or do you find yourself preparing your meal while she prepares one separately for herself?  How do y'all work this all out?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #14 on: March 30, 2012, 08:27:10 PM »

MomoMcSleepy, there are several choices for low protein versions of their bread - the one I'm about to try is their "Light White Rice Loaf" which has 0 grams protein (probably more like .3 grams), 40 mg sodium, 15 mg potassium per slice - http://www.ener-g.com/low-protein-1/breads/sliced-breads/light-white-rice-loaf.html.  The one bit of information I don't know is how much phosphate since it does have Calcium Phosphate in it. Perhaps I'll write them and ask.  Remember to toast or microwave the bread to make it more like real bread - you really have to lower your expectations appropriately. I find it's awesome toasted.

MooseMom, I think what most people call low-protein in America is an average or even high amount in many parts of the world - about 60 grams per day. Most people in America eat a very high protein diet - from what I recall 120+ grams per day.  People need about 40 grams per day to maintain good health with 10 grams being complete proteins.  With the ultra-low, I'm shooting for about 30 grams per day with 10 grams being complete proteins.  Ironically, I used to eat a high-protein diet to help lose weight. That, combined with high blood pressure from sleep apnea when I was heavy, is what I think caused my kidney disease.  I used to eat probably close to 150+ grams of protein per day. That makes me absolutely shudder now.  One of things I've thought about is switching to a higher protein diet if I had to go on dialysis and how strange that would be.

I haven't seen any studies comparing ultra-low versus low-protein diets but I'll see if I can't find any.  I think I recall some Italian or Japanese studies that may have focused in on this area.

My wife is awesome and very supportive. While she has definitely adjusted her eating, we eat separate items most of the time.  For example, we'll both cook Italian, but she'll use her recipe and I'll use mine. I found these shiritake "miracle noodles" which have virtually no protein (or calories for that matter).  Once again, not the real thing but I'm ok with that since I can still eat tomato sauce (sorry to many of my fellow IHDrs).  I've thought about sharing some of my recipes but I'm at an odd place where my diet is different (almost opposite) from just about everyone else on IHD right now.
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« Reply #15 on: March 30, 2012, 09:33:07 PM »

Kim, I sorta do the same when it comes to any pasta dish.  My husband will have pasta with tomato sauce while I'll make for myself something else, usually some vegetable (usually courgettes) with garlic and olive oil. 

You're right; most Americans eat far more protein than is needed.

I'd love to hear about some of your recipes.  If it is not suitable for me, I can perhaps adapt it to my needs.  Any recipe you care to share might give me some good ideas.  I'm not a particularly creative cook, but I can adapt a recipe when needed!  Thanks!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #16 on: April 04, 2012, 09:59:26 AM »

Thanks, Kim, I'm looking at your link.  I still eat tomato sauce, too, just much less (not enough to dip bread in, sadly) and try to fill up. My husband is actually on Atkins right now, he has lost 75 lbs since October, but I really didn't want him on it. I made an appointment with the doctor and am filling up souvenier 7/11-sized sources cups with water for both of us. We have almost opposite diets now (I am low-fat, too, cause of my pancreas) and our food bill has doubled!  I bake him soy bread, etc., which of course I can't have.

what's wrong with regular noodles?  I've seen other people write that they have alternative noodles.  I have never seen a nutritionist except as an inpatient, and she just gave me a bad foods list that I already had.  So what's with the noodles?

my doc told me basically to cut out the red meat, and cut down on ,est, when I  pressed him.  I told him I was  basically eating meat at every meal, and then he said "well, don't eat it at EVERY meal.". So, obviously, we need to cut down, protein is rough on the kidneys. I know I feel sick if I don't get a protein at every meal, though.  I get low blood sugar and I was told to have cheese and crackers in between meals.  I don't think it's a good renal snack, though.
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35 years old, first dx w/  chronic renal insufficiency at  28, pre-dialysis

born with persistent cloaca--have you heard of it?  Probably not, that's ok.

lots of surgeries, solitary left kidney (congenital)

chronic uti's/pyelonephritis

AV fistula May 2012
Kidney Transplant from my husband Jan. 16, 2013
Howard the Duck
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« Reply #17 on: April 30, 2012, 06:05:57 PM »

MooseMom - I wrote up a recipe I eat almost every day for vegan curry...then lost it...  I promise to do it again and post it in the recipe section.  It does have your favorite - green beans.  :)

MomoMcSleepy - my issue with noodles is that they are protein rich and not high in complete protein (all essential amino acids).  Therefore it would limit my protein intake and I can't get enough good nutritents because I would hit my personal protein limit.  There's so little room for "junk" protein in my diet.  The shiritake noodles I found are like rice noodles but are made of mostly tasteless fiber from a specific japanese yam.  They smell pretty bad when you first open them and they don't eat like regular noodles.  Remember when I said lower your expectations with the low-protein bread - it goes double for these noodles.  Prepared correctly, however, they are pretty passable in my book.

I think it's common to find doctors who believe eating too much protein if you have CKD is bad for you.  It's less common in the US to find doctors that believe that an ultra-low protein diet can slow the progression of kidney disease (or believe that patients can handle the difficulty of following one).

The other thing is meat creates a nitrogen load on your body that vegetarian diets don't.  There are books on the topic of how to prepare meat so that it has less nitrogen (basically you boil it, then cook it).  I would much rather eat a healthy vegan diet than do that to meat.
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« Reply #18 on: April 30, 2012, 10:30:40 PM »

Actually, Kim, I have made a green bean and mushroom curry.  I toasted the spices and ground them...I made it all from scratch.  And it was DELISH!  Unfortunately, my husband eats only beige, colorless food, so I was eating green bean and mushroom curry for quite a long time.  LOL!  But yes, I would LOVE any renal friendly curry recipe you could share!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #19 on: June 06, 2012, 09:40:35 PM »

I think Ill resurrect this thread, which is useful anyway, to ask about this nutrition counter I've come across.
http://www.mynetdiary.com/continuousResearch.html
It's an 'app' that my friend is using to count her calories using her i-phone.  I had a look at it and it looks like it counts all kinds of minerals, like you know, phosphates, potassium, for example.
Does anyone here use it, and or have comments about it or something similar?
I use CalorieKing for my calorie counting and it doesn't count minerals.

The context:  I'm having to work out how Gregory can avoid potassium now.  His phosphate is under control again, since we cut back on phosphate foods, Hooray!!! but potassium really has me gobsmacked.  Like, this is serious, mooseMom.  Looks like he has to like, not eat anything?  I have emailed the neph asking for a referral to a dietitian, as this is now officially too hard for me to get my head around (my head is full).

having a minor panic attack.  Lovely to see you all.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #20 on: June 07, 2012, 07:12:54 AM »

Just wanted to report that I've paid the subscription for the version with all the bells and whistles, and filled out Gregory's food for today... and it looks like he was under his limit for both potassium and phosphates... but over for salt because of the bread rolls he had for lunch.  This might be a really useful tool for me.  I am so much happier now than I was before, when I just had this terrible sense of doom because we couldn't eat 'anything'.  Maybe, if the database behind this thingy is big enough, we can work it so that he can have bits of the things he likes and stay under the limits.
Except it doesn't 'know' how much potassium is in brown bread.  Does anyone know if its something to worry about?
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #21 on: June 13, 2012, 07:13:30 AM »

At neph appt today, he is more worried about Gregory getting malnourished than avoiding potassium or phosphate.  G's phosphate is back in range again, maybe that was diet or maybe it was binders.  His potassium is 5.6 which is just a smidge high.  Oh well, this means one less thing to worry about.  Neph wants him to get plenty of protein.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #22 on: October 07, 2013, 01:17:10 AM »

what about 2nd hand smoke... does that effect the kidney failure?
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Duncan Reamhair
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« Reply #23 on: October 07, 2013, 02:37:44 AM »

what about 2nd hand smoke... does that effect the kidney failure?
Yes. Second hand smoke effects the whole body. It damages the blood vessels and is full of toxins that kidneys have to filter out. STAY AWAY FROM IT!!!
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
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« Reply #24 on: February 03, 2015, 04:49:30 AM »

I'm new to this site & late to this discussion but I just want to say that I found the original article & this thread very interesting & valuable. Of particular interest is that part about pharmaceutical drugs. I take Ambien for sleep now for many years but have always been told by my Nephrologist that it is metabolised by the liver, so he does not have any concern about it. But how do we really know whether the metabolites have accumulated in the body after processing by the liver? Can this be tested in some way?

Other drugs I take is BP meds, a calcium channel blocker Amlodipine and an ACE inhibitor, Ramipril. I also take sodium bicarbonate capsules now.

I am interested in taking Grape seed extract (a powerful antioxidant that is most similar to Pycnogenol) but am constantly being scared out of taking this. Whenever I've taken it in the past, there is a noticeable improved feel to my skin. Has anyone had any experience with this antioxidant perhaps?

Aguycalledkim, you've also mentioned alpha lipoic acid as being very helpful to you. Again, like with the grapeseed extract, I have no support from my Neph to take ANY supplements. How did you decide to go ahead with these supplements? Nephs only really rely on clinical or scientific studies & no pharma company is going to invest in trialing any supplements.
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