I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kristina on March 25, 2009, 02:29:26 AM
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I am in end-stage kidney failure (9%-12% function) and have been told by doctors/nephrologists that nothing can be done to stop the deterioration and that I have to accept this and wait for dialysis. Has anyone undergone any treatment, conventional or alternative, to try and stop or slow down the kidney deterioration?
I was given last year a course of 2 Retuximab- and 3 Methylprednisolone-Infusions to kill the B-cells but apart from terrible side-effects this had no positive effect on my kidneys.
I would like to know if anyone has had any experiences with alternative medicines like homeopathy, acupuncture, Muhet-Healing etc?
As a third option, has anyone undergone any radical treatment or medical experiment that brought any positive or negative effect?
With my underlying Lupus (SLE) & Mixed Connective Tissue Disease (MCTD) with Vasculitis etc., dialysis and transplant may not be the life-savers as they are for others, so I must try to keep my kidney function the best I can. I have so far only focused on my diet which hardly seems possible to improve on, though it is impossible really to know if my diet is effective because so little research has been done into this. Thank you for your thoughts and suggestions which I will approach sensibly. Thanks, Kristina.
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There are many people who will sell you treatments, but none of them work. Dialysis is you best bet for feeling better and stayng healthier.\
At 9-12% you should be getting on dialysis as soon as you can.
Prayers and love.
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I agree with Wallz, with this addition. Bottom line, you have three choices, dialysis (which can be immediate), transplant (will need several months to a couple of years to do work ups), and death. Start thinking about dialysis and get there fast, the faster the better. If you are extremely sick when you finally begin dialysis, it will take that much longer for you to regain your health. When my friend finally started dialysis and also wanted to be on the transplant list, she was so sick they couldn't even list her on the transplant list for two years, until she regained enough health for them to feel comfortable doing the surgery. Hope everything works out for you. Keep us posted!
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You need to put what energy you have left in researching the different options of dialysis. You can do blood hemodialysis which includes needles and several different options: 3 days a week, home hemo, nocturnal or you can do Peritoneal Dialysis: http://en.wikipedia.org/wiki/Dialysis#Peritoneal_dialysis
Read up and ask questions. :welcomesign;
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I am there too, just waiting for my kidenys to fully give out. But turthfully I was alright with it when they finally stopped treatment. I went through Roxamab, and a lot of diffrent chemo theaperys. And my body was taking it hard. I found out that I was having a lot more health problems do to side effects then I was just letting my kidenys go. They didn't want me to just stop treatment, because of my age. But I think it is the best for me to do at the time. But I know how hard it is to just stop treatment all together. Sometimes it feels like there should be at least something to do.
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Thank you very much for your comments and ideas to find further information. Did anyone feel, on reflection, that their kidney failure coincided with a very stressful period in their life? And the stress triggered some serious kidney problem developing, because, the kidneys were their "Achilles Heel", so to speak?
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I tracked my husband's kidney function for over 20 years. The most significant decline during that period came in the month after our home was flooded by a hurricane (2003). It was an especially bad time for him because I left on a month long trip 3 days after the hurricane. I didn't have a real choice because I was taking students on a trip to Thailand and there was no one to go in my place. He had to deal with most of the clean up and was alone to deal with the depressing conditions. Neither one of us anticipated how much the stress of it would bring us down. In his case it showed up as a big rise in his creatinine (If I am remembering correctly it went from 1.9 to 2.6 in a month).
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I do think stress had a lot to do with increasing the speed of my kidney failure. I was running at about 25% function when my mother became ill. I gave up a low-stress, highly rewarding 9 to 5 job with an architect firm to return to the family restaurant business. 16 hour days and non-stop physical and mental stress left me to ill to even continue with the architect firm when I finally had a chance to go back.
I have to agree with the rest of the posters - at 12% function, you need to be seriously looking into the different kinds of dialysis. The moment to look into things to delay it passed back when you still had function in the 20's.
Eating healthy, getting any amount of exercise, and doing what you can to counteract the stress in your life will always help your health. It's all worth doing, even if it won't do much to affect your % of kidney function.
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Thank you, Pelagia and jbeany, for your kind responses. I am very sorry for the traumas you went through, you have all my sympathy. I was extremely interested to read that you think stress might have played a factor in the rise of Creatinine. I was also very interested to note from your responses that the stress coincided with great physical activity. I mention this because there is one question about which I have never received a satisfactory answer: Could excessive muscle activity, which raises Creatinine levels, give a misleading picture of kidney function? Muscles produce Creatinine as a result of processing Creatine. If the Creatinine has been raised by physical activity, are the very inefficient kidneys able to filter out this excessive amount of Creatinine? And, if a patient has repeated bouts of such muscle activity could this produce a slow rise in Creatinine, due to the kidneys ineffectiveness to filter it out quickly? I have broached this question to nephrologists and I have noticed some agitation on their part, but their replies were brief and unconvincing. How can patients with very poor kidney function filter out an excessive amount of Creatinine produced by excessive physical activity? Could such a reading of Creatinine be misleading? Kind regards from Kristina.
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Kidney failure is kidney failure, whether or not your body produces more or less toxins.
But if you still insist on trying something "promising," look at this trial of Coenzyme Q10 in Patients with End-stage Renal Failure.
http://www.informaworld.com/smpp/content~db=all~content=a713680831?words=coenzyme*|q10*
This was published in 2003, and there have been no published followups with the patients after the 12 weeks of the study.
More info on Coenzyme Q10:
http://en.wikipedia.org/wiki/Coenzyme_Q10
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My husband's neph had him taking Co-Q10 for about the last 6 months before he began dialysis. Stephen also took conjugated linoleic acid (CLA) and fish oil for years before he reached the point of needing dialysis. CLA and fish oil are anti-inflammatories. I'm not sure that any of this helped because his kidney decline progressed at about the same rate for about 20 years. Who knows though - maybe it would have dropped more quickly without those supplements.
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Thank you, Zach and Pelagia, for the information on Coenzyme Q10 and Conjugated linoleic acid (CLA) and fish oil. I, too, feel it is difficult to tell the effectiveness of supplements, but if they are taken sensibly, perhaps there is a chance they may prolong not only kidney function but also the health of other organs which tend to suffer as a result of a deterioration of kidney function. It seems when kidney function dips below a certain level we need some extra help. To expand on this, even into general medicines, there is always a question of the amount to take: there are males and females; there are people of different weights; and, there are people of different sensitivity. How do we know what amount of supplement or medicine to have which would be effective and safe? Thank you once again.
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I use this site to find info on supplements. Just use the search box.
www.Prevention.com (http://www.Prevention.com)
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Thank you once again, pelagia. Kind regards from Kristina.
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I'm moderating a six session class, the fifth class met last night. The topic was preserving kidney function. The primary way to do it is blood pressure control. He - Dr. Suhail Ahmad (he wrote the book (http://www.amazon.com/Manual-Clinical-Dialysis-Suhail-Ahmad/dp/1858733456)) - would want your BP to be below 115/75 and he would want you to be on a low sodium diet, less than 1,500 mg per day. BP control is the only thing Dr. Ahmad has seen that has reversed kidney damage, short of reversing damage in many cases it can stop or dramatically slow further progression.
The question re: muscle use and a build up of creatinine. Creatinine is a marker, your docs should also have 24 urinalysis readings to determine your need for renal replacement. Creatinine readings do fluctuate with use - the example is always that a big muscular guy will have higher readings then an elderly, smaller person. Another expample is malnutrition can cause readings to increase if people are breaking down muscle for energy. At the extreme crushing syndrome - seen after earthquakes - is a result of the kidneys being overwhelmed by muscle break down. I think what you're asking is maybe you don't really have kidney problems because exercise is screwing up the blood tests. I don't think so. Your doc is looking at trends and the difference due to activity wouldn't change the trend.
Another point Dr. Ahmad made - he does not beat around the bush - that you are much better off transitioning to dialysis with some kidney function then trying to delay initiation until you are very ill. Get the fistula placed, and when your function gets below 15% it's time to seriously consider the transition.
You asked if people could point to stress as a trigger in their CKD medical history - I was diagnosed, after manifesting symptoms (swollen ankles/shins), three weeks after the sudden death of my Dad.
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After all the brilliant answers you have received, I will quietly add my :twocents; My nephrologist keeps telling me "lots of rest and NO stress". I was told almost 4 years ago that I would be on dialysis in 6 to 12 months----still holding at 15%. Could be just luck, but I do try to follow all the rules for kidney disease.
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No stress sounds wonderful, how do you avoid it though? I mean really. What do you do to not get stressed?
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What do you do to not get stressed?
A little Jack on the Rocks! :o
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"with a little help from my friends' :rofl; :rofl; :rofl;
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Yes, I take antihypertensives and my blood-pressure varies between 120/55 to 155/85 but on average it is 125/70 - 130/75. From what I am understanding here this might be too high? I only take a small dosage so there is room for manoeuvre to increase the dose. I think I was concerned that I didn’t want too much medicine going through my kidneys but perhaps a little bit more of anti-hypertensives would not do too much harm. Thanks to IHD and the wonderful people who respond to the questions I now appreciate that the key factors, for me at least, are: blood-pressure control, low stress and a kidney-friendly diet. I am working on the stress and rest whenever I can. I seem to have got my diet sorted out. I thank you all very much for your kind thoughts. Best wishes from Kristina.