I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: enginist on July 18, 2019, 05:21:29 PM
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I may be jinxing myself by speaking too soon, but CKD, at least in my case, hasn't been a progressive, irreversible illness. From a low of 16 two years ago, my GFR jumped to 24, then 26, and is now at 31. And I am not alone. According to this study on PubMed, up to 15 percent of patients showed significant improvement. The critical factor seems to be the cause. All of those who showed improvement had hypertensive nephropathy. Apparently, controlling blood pressure is the key. This involves diet and exercise as well as medication. Once the blood pressure is controlled, the damage begins to undo itself.
https://www.ncbi.nlm.nih.gov/pubmed/24349134
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On my first appontemnt with my neph, after beginning dialysis, he told me it WAS possible the damage would reverse itself, but not to be overly optimistic. In over 25 years practice, he had two patients he was able to take off dialysis. It is possible. Seven years later, I'm still hoping.
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I wish you all the luck that's come to me.
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Thanks, and I hope your improvement continues.
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I hope that it continues too. My nephrologist, however, is pessimistic. Every time the number goes up, she says it will go down. But she's been a negative figure from the beginning. When it jumped from 16 to 24, she said it was probably a "glitch." My urologist, on the other hand, is more encouraging and, I think, insightful. He predicted two years ago that my kidney function would improve.
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I Pray not too many get their hopes up from this as depending on the cause of kidney failure not so many may benefot from such treatment.
Grant there will be some that can, but the majority of patients may not.
It may still be worth trying for a reasonable time.
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The last thing that I'd want to do is generate false hope. I have to emphasize the role that luck has played in all of this. My nephrologist doesn't know the reason why the disease is in reversal, and that's why she's so negative, because it goes against her training and experience. And even the authors of the study admit that they don't understand why a small subset of patients showed improvement. It's possible I was misdiagnosed with CKD. I may have had an acute injury that took a few years to resolve itself. I know that's the opposite of acute, but some diseases, such as sepsis, are both chronic and acute. And then it's always possible that the kidneys, as the doctor insists, will ultimately crash on me. I've read several stories on this site that had the same trajectory.
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I should add that I do take supplements. The supplements are curcumin, grape seed extract, omega 3, and sodium bicarbonate.
I don't know which or any are the most beneficial, but something seems to be working.
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The last thing that I'd want to do is generate false hope. I have to emphasize the role that luck has played in all of this. My nephrologist doesn't know the reason why the disease is in reversal, and that's why she's so negative, because it goes against her training and experience. And even the authors of the study admit that they don't understand why a small subset of patients showed improvement. It's possible I was misdiagnosed with CKD. I may have had an acute injury that took a few years to resolve itself. I know that's the opposite of acute, but some diseases, such as sepsis, are both chronic and acute. And then it's always possible that the kidneys, as the doctor insists, will ultimately crash on me. I've read several stories on this site that had the same trajectory.
Hi Enginist. Your story is very interesting. I'm just wondering why you take the curcumin & grapeseed extract specifically. I am curious because these 2 supplements have been of great interest to me in the past. I have tried both of them but cannot seem to tolerate them. I'd love to know more about your experience with them.
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Athena, I don't know why you can't tolerate curcumin and grape seed extract. They seem to be beneficial to me and certainly have no side effects that I'd consider negative. There are several small but placebo-controlled studies on PubMed that underscore the benefits of these supplements. Here are a few of them.
https://onlinelibrary.wiley.com/doi/full/10.1111/bcpt.12817
https://www.ncbi.nlm.nih.gov/pubmed/25474287
https://www.ncbi.nlm.nih.gov/pubmed/27822171
https://pdfs.semanticscholar.org/f376/3d1b97d5ace4820839039418014824640088.pdf
P.S. Athena, when you were taking these, you may have been taking too much. There are documented cases of people overdosing on curcumin and the extract. I take a capsule of each per day, and those contain fairly small amounts. You also have to consider that we differ constitutionally. What works for me may not for you. Unfortunately, with this insidious illness, there is no guarantee of a good outcome.
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Hi Enginist
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Hi Enginist, can you pls advs the strength of Grape seed extract and curcumin you are taking.
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I saw some articles on net they suggest 350 mg per kg of body weight per day. Also it is high in Vitamin C, which is also not good for people on dialysis.my 18 yrs old daughter is on dialysis
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FWIW, those GFR blood tests are notoriously inaccurate. Firstly, you can raise your GFR just by cutting back on your protein intake. Secondly, just drinking more water will 'raise' your GFR as well. I know; I 'gamed the system' for more than a year to avoid dialysis this way...
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FWIW, those GFR blood tests are notoriously inaccurate. Firstly, you can raise your GFR just by cutting back on your protein intake. Secondly, just drinking more water will 'raise' your GFR as well. I know; I 'gamed the system' for more than a year to avoid dialysis this way...
Another way to raise your eGFR for lab results is to stop the ACEi medication.
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Hello enginist,
Let's hope you remain lucky !
My kidney first failed in 1971, when my landlady found me in a coma with uremia lying in my room and fortunately I was discovered at the last minute.
Strangely enough, as I have just found out by careful detection with a medic, it might have been my landlady's dog who actually saved my life. He always waited - every morning - outside my room (or in the kitchen, where he waited until I came out of my door, me carefully looking right and left to make sure he was not there, so that I could go to the bathroom, but all of a sudden he ran at me, sniffing at my legs and I could not stand it and tried every trick to avoid him, especially in the mornings, when I walked to the bathroom in my short pyjama. This large black Labrador seemed to have a "thing" about sniffing my legs and I could not stand his wet nose sniffing at me. He obviously liked me more than I liked him!
Anyway, my landlady spent every weekend at her country-house with her Labrador.
But one weekend she came back home already on early Saturday evening with her Labrador, entered my room (which was very unusual) and found me lying there in a deep coma and sent immediately for an ambulance and in hospital the doctors diagnosed that my deep coma was due to uraemia and total kidney failure.
That was a very lucky escape for me because if my landlady would have come back at her usual time on Monday morning, it would have been much too late for me. As I have just found out, it surely must have been her Labrador who made sure she came home so much earlier !
.... After I finally woke up again from the coma (which took a long time), I met a Professor, who told me to "go vegetarian" and to be very kind to my little kidney function and that is what I have done ever since, even through my dialysis years and last year I was lucky and had my kidney transplant and I still continue with my very simple vegetarian diet und just hope for the best.
Is kidney failure reversible ? I don't know. After my kidney biopsy I was diagnosed with chronic proliferative Glomerulonephritis and at first I was not given much of a chance and in my case the kidney failure was not reversible, but perhaps my strict vegetarian diet, self-made bread, cooking from scratch etc. has given me a chance to stay off dialysis for the next few decades.
I do hope you are lucky as well and I send my best wishes from Kristina. :grouphug;
P.S. The older I get, the more mysteries I come across and often there is no rhyme or reason to it ... Let's hope you are lucky as well and I keep my fingers crossed !
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Katrina--
It's just more proof, if proof were needed, that dogs have uncanny abilities. I agree that it saved your life, and I hope that you gave it a just reward, like a cheeseburger or a slice of pizza. I also agree that going vegetarian is the best way to prolong your kidney function. It has worked as well for me as it once did for you.
I recently subjected my kidneys to what they call a shock or insult that gave me a close call. The cause of the shock was dehydration brought on by an incarcerated hernia. After two days of vomiting, I finally called an ambulance and was taken to the hospital, where they did emergency surgery and put me on an IV to help replenish the fluids and electrolytes I lost. My GFR dropped from 31 to 11, but the kidneys proved remarkably resilient. By the time I was discharged a week later, the GFR had climbed back to 36, higher than it was before.
So my luck continues to surpass the laws of probability. But now I can see what the nephrologist meant when she kept insisting that eventually my kidneys will fail. She meant that they're susceptible to all kinds of injuries, and that one of these days I won't be so lucky. Anything could take me out--flu, pneumonia, or a whole host of hospital-acquired infections. Meanwhile, I'll be grateful for whatever future I have left, and I'll hope that you can always say the same.
P.S. Because of this narrow miss I had, I recently filled out my will. And because I admire dogs so much, I have made an animal shelter one of my beneficiaries. I won't be leaving a fortune like Leona Helmsey did, but I do want to show my appreciation.
Athena--
Right you are about the ACE-i. At certain doses and for certain conditions, the medication effectively lowers BP and provides renoprotective properties. However, for some conditions, such as dehydration, it is contraindicated. I found this out just recently when I became hypovolemic and was still taking Lisinopril. It caused me to develop urinary casts, which are almost always a sign of kidney damage. I did some research and found an ARB called Telmisartan that raises the GFR and doesn't seem to aggravate the kidneys. I'll be calling my doctor on Monday to get a prescription.
yusuefekhatri--
After stopping them in the hospital, I don't take curcumin or grape seed extract anymore. I saw that my kidney function returned without the use of supplements. But even while I was taking them, I didn't take too much. They do have anti-inflammatory properties, but they are also unregulated. You just don't know what's in them.
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Hello enginist and many thanks for your kind thoughts!
When I finally came around from the coma, everyone, including the doctors, told me that it was the landlady who saved my life because she phoned the ambulance just in time and I am very grateful.
And it only occurred to me much later, after careful detection, that it might have been her dog who alerted her and that it was really and truly the dog who saved my life. There is no doubt, that it was only her dog who could have noticed that something was very wrong and I am sure that it was her dog that made her life very difficult on Friday evening and Saturday morning whilst she was still at her country-house, so that she decided to come back to the metropolis much earlier than intended. And, no doubt, it also must have been the dog who alerted her to my door and encouraged her to open it and so it came that she discovered me lying there in a coma and called the ambulance just in time.
After all, the landlady did not know me long enough to notice that I was medically in severe trouble. I had only just arrived at the metropolis to continue there with my higher education and I only could rent a room with this landlady, so she “could keep an eye on me” etc., since I was still very much underage. I also remember that the only shoes I could wear at that time were my summer-sandals, but it was January/February and extremely cold and freezing, but the sandals were the only shoes that were adjustable in size and because of that I wore them. At the time I could not really notice anything really anymore, I was too much gone already and it is quite amazing that I was given a chance to survive. I shudder to think if I would not have come across this caring dog ...
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Katrina,
You have done a lot of research. Can you recommend a kidney-friendly BP med?
I have combed through the literature on PubMed but can't find anything that is specifically recommended for a recently dehydrated kidney, which is also called a hypovolemic state. Some papers say that Telmisartan has renoprotective properties, but others say that its use should be closely monitored. Can you offer a suggestion?
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Hello enginist,
To answer your question is very difficult, because all the medication I take is mainly Lupus-friendly, including my BP-medication. Because of the Systemic Lupus, I also suffer from severe drug-intolerance and my body reacts very badly and often allergic to lots of BP- and other medications. In short, my BP-medication is mainly directed to be Lupus-friendly and also "tries" to keep my BP under control as well as possible.
It really depends on your body and the underlying reason for your kidney failure (in my case Systemic Lupus & chronic proliferative glomerulonephritis), how well your kidneys tolerate the BP-medication you are taking, in short, there is no BP-medication, that is kidney-friendly to all of us because of the different reasons for our medical situation.
Please ask your GP and nephrologist, what they think is best for your body to keep your kidney-function going for as long as is possible and please check your BP at home at least two to three times a day to make sure the new medication really keeps the BP under control. And please contact your GP/nephrologist if you experience any side-effects of the BP-medication you are taking, as you don't want to upset your kidneys.
I wish you good luck with keeping your kidney-function going for as long as possible!
Best wishes from Kristina. :grouphug;
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Thanks for the response, Katrina. I did ask my nephrologist, who recommended amlodipine.
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I took that for a while. Good stuff. :thumbup;
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Thanks for the response, Katrina. I did ask my nephrologist, who recommended amlodipine.
Hello again, enginist and welcome to the Amlodipine-Club .... I have been "on it" for many years & I still take it after my transplant and it still works well to control my hypertension without any noticeable side-effects (touch wood !!!). :bow;
This is extremely lucky and also very unusual for people like myself who suffer from drug-intolerance because of an underlying disease which in my case is Lupus (SLE).
I wish you the very best of luck with Amlodipine and hopefully it works for you and your kidneys as well. Take care ! :grouphug;
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Like you, Katrina, I always do my own research on medications that I've been prescribed. What I've found is that minidipine, which dilates both the afferent and efferent arterioles, may be better for the kidneys than its cousin amlodipine, which dilates only the afferent. The conclusion seems to be that the former is more effective than the latter at reducing glomerular pressure, resulting in a higher GFR.
What about you, lulu836? Have you ever heard of manidipine, or used it?
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No, not familiar with that one. After countless years of the meds I do not take any BP control medication at all. With a lot of research and a cooperative clinic staff I am able to control my pressure without pills.
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How? With supplements and exercise? No coffee and no alcohol? Please tell us how you did it.
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Two years ago, my GFR was 16 and I was told to prepare for dialysis. Today, it's at 37 and climbing. I don't know what I did to be so lucky, nor do I know what's next for me. But I've been given two free years, two years that I'm grateful for, which helped me to come to terms with my mortality. I could go tomorrow with no regrets.