Alternative Therapy to Preserve Renal Transplants

[Falkenhayn]

I had a live-donor renal transplant 13 years ago, but I'm well aware that such transplants usually only last 15 years so I am looking for ways to preserve its function. I now take Renadyl, which contains microflora which have been shown in several scientific studies to reduce levels of uremic toxins in the body which, in a vicious cycle, also promote the deterioration of the kidneys. I also drink hydrogen water, which has been shown in peer-reviewed, published research to preserve kidney transplant function in rats.

I am also looking now for further interventions to delay the effects of chronic allograft nephropathy and cyclosporine toxicity, and one such method is to take the Japanese drug, Kremezin (or AST-120), which however alters the serum levels of cyclosporine so it has to be used carefully. For advice on how to do this I really need to consult with a Japanese nephrologist, since I know it is used in Japan to delay decline in function of transplanted kidneys, but I am having trouble coming into contact with one. Does anyone have any suggestions as to how I can do this?

Also, I wonder if any transplant patients have received stem cell treatment to improve renal transplant survival? This is a new area of research, but while conventional medicine will take many, many decades of exhaustive safety and effectiveness testing before it will be available as a treatment in the western world, it is now already available in places like Thailand and Mexico. So has anyone tried it there?

[Rusty8]

Hi I am a renal transplant of 27 years and I just went along with the flow and done what ever the docs told me which wasn’t a lot so my suggestion to you is not to worry as to how long it will last just listen to docs and enjoy every day

You take care

[Tennvol11 in reply to Rusty8]

Totally agree, 20 years post op and I do the same thing!

[Falkenhayn in reply to Tennvol11]

If I just "do what the doctors say" the statistics say I will be back on dialysis in two years, so that answer simply doesn't suffice for me. I have to find something else better than the certain doom which, statistically, is what I can expect by just following what conventional medicine happens to suggest in the country where I happen to be living. But in Japan, South Korea, and the Philippines, for example, I would be put on Kremezin (AST-120) in order to absorb the uremic toxins that build up as the renal graft declines in function, and reducing uremic toxins is known to slow the rate of the transplanted kidney's gradual failure. Renadyl, which I now take, is a microbiotic which digests uremic toxins to a form which does not accelerate the kidney's decline. What not take these things, or more, if you can find any that work and are safe, as are Renadyl and Kremezin.

You no doubt know the old joke: What's the difference between God and a doctor? Answer: God doesn't think he's a doctor. Your average nephrologist just wants to apply the standard recipes to your case even though they are known only to give you a limited kidney survival time, since that's the way he or she is going to get rich and be respected by the profession. But your interests are not the same. You want your kidneys to survive until you die. Even though medical research is terribly slow, largely because the ultra-conservative FDA (the foot-dragging administration, as it is often called) requires a 16-year approval process for new drugs, your doctor is only going to apply to your cases drugs which the FDA (or the equivalent agency in your country) has approved. It may be quite obvious if you read the latest medical research that drugs x, y, and z are 90% certain to be of great benefit to you, be your doctor is going to wait until they are 100% proven and approved before letting you have them, even if that takes so long you are on dialysis and dead before your get them. Since I have only one life I don't want to settle for that trap.

[Rusty8 in reply to Falkenhayn]

I’m sorry but I still will be going with the flow as I’m not clever enough to understand what you are going on about so as far as I can see I have no other choice although I understand where you are coming from my brother would be agreeing with you but chucking all these different things at me I do not understand

It’s bad enough when he goes on about the foods I should be eating lol

I’m 73 now so I can’t see me changing

You take care

[Cazzy41 in reply to Falkenhayn]

Whatever you do make sure your Renal Team are aware because god forbid you take something without that and it goes terribly wrong for you. I totally understand where you are coming from, and it must be a very worrying time but please don’t make a silly mistake that could end up costing you your life. Good luck with everything xx

[Falkenhayn in reply to Cazzy41]

Of course I'm quite cautious, but my renal team is utterly useless, since they are so narrow-minded and conservative, they wouldn't recognize a new and valuable idea if it bit them in the nose. They have just memorized the doctrines of renal transplant management the way they learned them thirty years ago and they apply them by rote without thinking. The cemeteries are filled to overflowing with their transplant patients who died too soon and in return the doctors have gotten filthy rich, so what motivation do they have to do some original research to make things better for the patient? I was talking with one nephrologist about a novel therapeutic approach that is discussed all over the academic literature and she couldn't even sound out the name because she had never even heard of it. The reason I did know about it is that my life depends on it but there is no downside for her personally if she doesn't.

If I start trying to explain to the transplant team how all Japanese nephrologists automatically put renal transplant patients on Kremezin to delay their return to dialysis all they'll say is "now now then, be a good patient and do only what we say," on the theory that because the patient has lost his kidneys he must also have lost his brain. The medical culture of contempt for the patient, the professional arrogance of the doctors, and the ultra-conservative licensing restrictions on doctors in the English-speaking world where the least flash of ingenuity, originality, or imagination is punished by banishment from the profession all combine to make the transplant team part of the problem rather than part of the solution.

[Cazzy41 in reply to Falkenhayn]

I totally understand where you are coming from and I totally get the fact that this is your life they are messing around with. I was in no way dismissing what you said, and if that’s the route you feel you must go down then by all means that is your decision. I find it unbelievable that your Renal team have no interest in what you have addressed with them. My team are absolutely amazing maybe that’s the luck of the draw, they listen to everything I have to say and give amazing feedback at every turn. Is there no one else you can sit and discuss your plans with that could give you a more informed and knowledgable out look on this. At the end of the day you are going to do what you believe is right so surely working with you is better than against you. Good luck with this and please keep me informed of your progress. Have a wonderful New Year and speak soon.

[Falkenhayn in reply to Cazzy41]

It really disturbs me that while I dutifully read all the latest research published in peer-reviewed, scientific journals on preserving renal transplants, my nephrologists invariably don't have the faintest idea what I'm talking about when I refer to any of these studies. I keep up with research in my field, why don't they keep abreast of developments in their field? Every time I talk with them it becomes more obvious to me that if your life is at stake, you are going to pay much more attention to the latest data regarding your fate than are people who are only getting a salary to do so.

The other thing that bothers me is the dogmatic self-satisfaction of the renal team with their own narrow range of knowledge. When I introduce to them the latest research from around the world about drugs and treatment strategies they can't even pronounce the names of, they just automatically say "I've never heard of that so don't use it." The most intelligent thing I can get out of them is the admission that treatment X, Y, or Z is promising, but then they want to wait for another 20 to 30 years of study to determine that it is fully safe and effective. Well, since I'm living and dealing with these problems now, I can't afford to wait that long. What is scientifically proven to be safe and effective is often not relevant to what is existentially necessary to try in the life-and-death emergency many of us find ourselves in. Does a fireman trying to save someone at the top of a burning building proceed cautiously and carefully to ensure that he only uses methods which have been scientifically proven safe and effective? Of course not, since a life is at stake!

[Mohammed1985 in reply to Falkenhayn]

Agree the Thier ego is very high they don't even want to listen to any kind of a suggestion

[SLP2005]

Hi, these are the things I do after my second renal transplantation. My first kidney and pancreas transplant lasted for 12 years with pancreas remaining healthy and kidney failing. Had to do PD for 3 years while working full time job. Right after my first transplant, I became a vegan. Never had weight issues. I continue remaining a vegan after my second only kidney transplant. I’ve been a vegan for 16 years and have done various hours of water only fasting before my first transplant, from 24 to 72 hour fasting and once I did 8 day only water fasting while being a type 1 insulin dependent diabetic. Never fasted over 24 hours after both kidney transplant, however, after my second one, I started on IF, intermittent fasting and fast for 20 hours with a 4 hour eating window, definitely eating only plants. I cannot get the answer from any studies on prolonged only water fasting while taking immunosuppressive meds. I wish I had switched to whole food plant based diet prior to my first transplant and would have been able to continue long hours of fasting.