I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: trojan ska on October 08, 2008, 06:53:25 AM
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I am on the verge of Dialysis but I have read that holding off on Dialysis is best to ensure the success of a transplant.
What's more important to measure my need for Dialysis? Creatinine or GFR? Or potassium and sodium levels?
My Creatinine is 5.0 and GFR is 14. Potassium is 4.2 and sodium is 140
I figure that as long as my toxins aren't buidling up and stay within their refrence ranges I can hold off despite what my creatinine says.
I'm learning that 5.0 for creatinine is an odd number that doctors use as a gauge but that everyone's body is different.
Has anyone else been staving off Dialysis while waiting for a transplant? Is their a particular post that addresses this exact topic?
I have an aunt who is getting worked up right now. My uncle tried but was ruled out after a catscan revealed two large cysts (benign) on his kidneys.
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Yeah, my Dad held off for three years with a GFR right at 15-14. He was sick as a dog the entire time. I am much happier doing extended home hemodialysis. He got a Kindey/Pancreas transplant in 1995 and is doing well. PM me if you want to get in touch with him about his experience.
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Well I believe the idea is to do pre-dialysis transplant but I understand a few months to a year of dialysis probably isn't going to make that much difference in terms of transplant success.. I think I read somewhere that 2 years is a bit of a marker line in terms of damage done by dialysis that MAY affect a transplant's effectiveness longer term.
Seriously though you should worry less about your creat, GFR, K levels etc and ask yourself this - how do you feel?
As wallyz commented about his father he may have held off but felt rotten the entire time. I held off dialysis for 2 years and felt time (apart from tired) and end got told to start no matter what (GFR was 6). If you have a live donor in the wings/going through an evaluation then sure discuss with your neph the benefits of holding off if possible but if you are feeling sick at this point it may be best to do some dialysis just for your own well being (though those levels sound fine to me).
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My numbers are very similar to yours and have held pretty steady for a year. Still holding off dialysis and am on the "list" plus have had several people tested. I have little energy, tired and throw up many times a week----but I am doing ok. And the doctor watches things closely. We work together and plan on holding off dialysis as long as possible. Each person is different and need to make decisions on how you are feeling and getting through your days. Keep us posted.
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My numbers are very similar to yours and have held pretty steady for a year. Still holding off dialysis and am on the "list" plus have had several people tested. I have little energy, tired and throw up many times a week----but I am doing ok. And the doctor watches things closely. We work together and plan on holding off dialysis as long as possible. Each person is different and need to make decisions on how you are feeling and getting through your days. Keep us posted.
Of the people tested, what were some of the reasons for them not being able to donate? I am confident I will get a donor but am scared that they will all be eliminated for one reason or another.
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Well I believe the idea is to do pre-dialysis transplant but I understand a few months to a year of dialysis probably isn't going to make that much difference in terms of transplant success.. I think I read somewhere that 2 years is a bit of a marker line in terms of damage done by dialysis that MAY affect a transplant's effectiveness longer term.
Seriously though you should worry less about your creat, GFR, K levels etc and ask yourself this - how do you feel?
As wallyz commented about his father he may have held off but felt rotten the entire time. I held off dialysis for 2 years and felt time (apart from tired) and end got told to start no matter what (GFR was 6). If you have a live donor in the wings/going through an evaluation then sure discuss with your neph the benefits of holding off if possible but if you are feeling sick at this point it may be best to do some dialysis just for your own well being (though those levels sound fine to me).
I feel alright. I guess I'm willing to hold off Dialysis for the sake of freedom of time and doing things I want to do for right now.
Thanks for clarifying what you know about Dialysis before a transplant. I figured a short amount of time on Dialysis wouldnt be so bad.
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Yeah, my Dad held off for three years with a GFR right at 15-14. He was sick as a dog the entire time. I am much happier doing extended home hemodialysis. He got a Kindey/Pancreas transplant in 1995 and is doing well. PM me if you want to get in touch with him about his experience.
Thank you. I don't know if I can maintain these levels for that long but your father's experiencee is encouraging. My numbers have gradually gotten worse and worse for the past two years to get here.
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I think everyone should be on dialysis before a transplant. Number one you will take care of your transplant much better knowing what you will go back to. Plus your numbers will be better going into surgery. Your new kidney won't have to work so hard at first.
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I was a predialysis transplant and could not appreciate my kidney more than I do. It was my goal, along with my doctor, to get a transplant before I had to make the decision about dialysis.
I worked hard with diet and exercise and whole lot of persistence to make that happen.
You don't have to be on dialysis to appreciate how devastating it is to have to go through that every other day. All we have to do is look at the posts here and see the pain that our friends are going through to know that we don't want to go through that unless it's absolutely necessary.
If you can get a transplant predialysis, do it.
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I think everyone should be on dialysis before a transplant. Number one you will take care of your transplant much better knowing what you will go back to. Plus you numbers will be better going into surgery. Your new kidney won't have to work so hard at first.
My understanding from reading online medical journals is that the theory is Dialysis boosts one's immune system which would make the body reject a kidney graft. That it is in fact better to do a transplant without doing dialysis first if possible. There seems to be evidence pointing towards higher success rate with recipients with no prior dialysis vs. recipients who have been on dialysis.
I guess I dont understand your response. What do you mean when you say one will take care of their transplant much better knowing what you will go back to? Is this something a doctor shared with you?
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There's a theory - although I doubt it's backed up with any real data - that patients who have suffered thru dialysis will take better care of a transplanted kidney by being more complaint with meds, diet, exercise, etc.
Personally, I don't buy it. It might be true of a few teenagers, but I think most adults are cognizant of the gift they are being given without having to deal with dialysis first.
I think if you can get a kidney before you get sick enough to need dialysis, you should go for it. It all depends on your health - you don't want to be so sick and toxin overloaded that it causes complications during the surgery.
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Preemptive transplants have been discussed here:
Pre-emptive kidney transplantation not only avoids the risks, cost, and inconvenience of dialysis, but is also associated with better graft survival than transplantation after a period of dialysis, particularly within the live donor cohort. http://ndt.oxfordjournals.org/cgi/content/abstract/13/7/1799
... for a patient with GFR <30 (stage IV CKD), during discussions regarding renal replacement therapy, preemptive kidney transplantation should be a main focus of efforts, including workup and referral to a transplant center. Preemptive transplant with a living donor is the optimal approach, but even patients without kidney donors should be referred early for transplantation. http://www.kidney.org/news/newsroom/newsitemArchive.cfm?id=406
... many nephrologists will suggest that you also choose a method of dialysis just in case it's needed (given the lead time that is required for the access surgery). Therefore, even a patient with a donor all pre-qualified for an expected pre-emptive transplant might still have fistula surgery performed, or a PD catheter inserted. http://www.igan.ca/id78.html
The question is, however, “what happens if a patient went right to transplant without getting dialysis”? Peer-reviewed information suggests that these patients have higher employment rates, lower unemployment rates, and a reduced family care giving burden. Follow-up questions include whether preemptive transplant has specific quality-of-life benefits; whether ESRD-related quality-of-life problems are preventable with preemptive transplant; and whether ESRD patients must first undergo dialysis in order to “appreciate” a transplant recipient’s quality-of-life and follow a transplant regimen.
Dr. Bartlett reported that early transplant can prevent losses associated with long-term dialysis. The short-term benefits of a scheduled transplant include the ability to plan work absences, recovery support, and dependent care. There is also reduced anxiety that can be associated with transplant timing unpredictability. There are better outcomes after preemptive transplants, including lower delayed graft function rates, lower acute rejection rates, and higher graft survival rates.
There are economic benefits as well, since the monthly cost of maintenance dialysis is greater than that of maintaining a transplant. The savings accrue for time periods when a functioning transplant allows the patient to avoid dialysis. Also, preemptive transplantation avoids the high costs of maintenance dialysis during the onset of ESRD. The cost spike during the transition from CKD to dialysis is avoided by preemptive transplantation. Economic benefits also include reductions in transplant complications arising from lower rates of delayed graft function, acute rejections, or graft failure. Dr. Bartlett described the per-person/month expenditures for ESRD patients on Medicare.
The risks of preemptive kidney transplantation are that the process may waste native kidney function by hastening the transition to renal replacement therapy, and the cost of care shifts from a CKD rate to a higher ESRD rate. Preemptive transplantation may increase the chance that a patient with renal function recovery (RFR) will have an unnecessary transplant. There are financial losses associated with the costs of such a transplant. Dr. Bartlett concluded that policies to perform preemptive transplant may result in cost savings by reducing costs associated with the transition through dialysis, and reducing the rate of costly post-operative complications. http://www.organdonor.gov/research/acotmay2008notes.htm
I do respect Rerun's comments however, as they are based on her own experience as a dialysis patient and a kidney transplant recipient.
I wish we had known about preemptive transplants for Jenna, but her pediatric nephrologist was one of those who believed teenagers should struggle with dialysis in order to truly appreciate the transplant, as all kids are noncompliant. Many studies now dispute this perspective.
Dialysis is a well-established treatment modality in children with end-stage renal disease (ESRD). However, based on both medical and quality of life arguments, its place is to bridge the time awaiting a renal transplantation. It is associated with cardiovascular damage, impaired cognitive development and retardation of growth. Moreover, the quality of life during dialysis is poor. Transplantation without prior dialysis, or pre-emptive kidney transplantation (PKT), may therefore be preferable in children with ESRD. http://www.medscape.com/viewarticle/542528?rss
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I truly don't believe you have to go through dialysis to appreciate and take care of the new kidney. If you are waiting for a liver, what makes them "appreciate" their new liver? There is so much testing and evaluations, along with your nephrologists input, that the team has a good idea who is going to be compliant. It seems like if anyone hates dialysis, they wouldn't wish it on anyone and would encourage them to go for the pre-emptive transplant.
My potential donors were not accepted for various reasons. My PRA is a big factor. One is 25 pounds overweight, one was diagnosed pre-diabetic. The tests are extensive, but they are just trying to find the best possible match for you. Good luck. Hopefully, your transplant will happen before dialysis starts. :2thumbsup;
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as like you i wanted to hold off on dialysis but my potassium and creatinine levels were so high i would die on the operating table if i didn't dialysis as my levels were at a lethal levels, they had an emergency permacath placed started 2 days later. hope you are able to hold off dialysis...dint wish that on my worst enemy..best of luck of finding a donor P. S. at the time i didn't know the dept of corrections uses potassium as part of lethal injection to death row inmates (i didn't mind going on dialysis right away ,didn't know how serious it was)
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I was fortunate enough to be transplanted before dialysis. If your doctor goes for it and you feel well, give it try.
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My goal was to have a pre-emptive transplant in Aug 2005 (my sister was my donor). Three days before surgery it was discovered that I had an extremely high PRA and everything was cancelled. I don't remember my exact numbers, but I think my GFR was around 10 or 12. I ended up having a positive crossmatch transplant at Mayo in Dec 2006 (my sister was still my donor), but had to go on dialysis in April 2006. It seems like things went downhill fast from Aug 2005 to April 2006. My doctor always said there was no "magic number" but more about how I felt (although my labs, especially potassium, phosphorous, and PTH were way out of whack and I added a lot of meds in that year too). As much as it sucked, I did feel better and was "healthier" when I had my transplant by having a few months of dialysis.
The weird thing for me was I constantly questioned whether I was getting the transplant "too soon" in Aug 2005. Knowing what I know now, a GFR of 12 is NOT "too soon"! I kept thinking it was better to hold on to my original parts as long as possible. Duh...they weren't working worth a crap while my sister was unselfishly offering me her very healthy kidney.
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The weird thing for me was I was constantly questioning whether I was getting the transplant "too soon" in Aug 2005. Knowing what I know now, a GFR of 12 is NOT "too soon"! I kept thinking it was better to hold on to my original parts as long as possible.
This is how my husband saw it too - trying to hold on as long as possible. He did hold on for a long time. In 2003 they predicted he could need a transplant or dialysis as early as 2004, but he made it to 2008. In retrospect he says he didn't realize how much his condition had declined until he had the transplant.
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My goal was to have a pre-emptive transplant in Aug 2005 (my sister was my donor). Three days before surgery it was discovered that I had an extremely high PRA and everything was cancelled. I don't remember my exact numbers, but I think my GFR was around 10 or 12. I ended up having a positive crossmatch transplant at Mayo in Dec 2006 (my sister was still my donor), but had to go on dialysis in April 2006. It seems like things went downhill fast from Aug 2005 to April 2006. My doctor always said there was no "magic number" but more about how I felt (although my labs, especially potassium, phosphorous, and PTH were way out of whack and I added a lot of meds in that year too). As much as it sucked, I did feel better and was "healthier" when I had my transplant by having a few months of dialysis.
The weird thing for me was I was constantly questioning whether I was getting the transplant "too soon" in Aug 2005. Knowing what I know now, a GFR of 12 is NOT "too soon"! I kept thinking it was better to hold on to my original parts as long as possible. Duh...they weren't working worth a crap while my sister was unselfishly offering me her very healthy kidney.
Could I be negatively affecting my PRA by not doing dialysis? I'm sure my PRA has been checked but could it have fluctuateed since the last few months. My creatinine was 4.0 just three months ago and now is 5.0 ...my potassium, salt and phosphorous are currently in reference range.
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A high PRA is usually caused by being exposed to foreign human tissue through either pregnancy, blood transfusion, or prior transplant. If you have never been exposed I wouldn't think holding off on dialysis would come in to play with the PRA. However, I really don't understand why some people who have been exposed never have a high PRA while others do. The whole antibody "thing" is very interesting and they have done (and continue to do) a lot of research in this area to reduce rejection. Sorry, I guess I'm getting off topic...
The main negative things that happen if you hold off on dialysis too long are: elevated phosphorous levels, which throws your calcium off and causes hyperparathyroidism and brittle bones; and elevated potassium levels which is hard on your heart (not to mention fluid buildup, depleted iron stores, etc.)
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For all those still pre-dialysis.. if you're looking for a pre-dialysis transplant or not.. my #1 suggestion.. apart from keeping to your meds, diet etc is to DO WHAT YOU WANT TO DO NOW! By that I mean.. travel... go do those things that would be more difficult/restricted by dialysis (since you can't count you WILL get a transplant first).... go do 5 day hikes, or travel through Italy (hi Lucinda :) ) or go walkabout or whatever it is that you want to do and experience... I really think this is important....
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For all those still pre-dialysis.. if you're looking for a pre-dialysis transplant or not.. my #1 suggestion.. apart from keeping to your meds, diet etc is to DO WHAT YOU WANT TO DO NOW! By that I mean.. travel... go do those things that would be more difficult/restricted by dialysis (since you can't count you WILL get a transplant first).... go do 5 day hikes, or travel through Italy (hi Lucinda :) ) or go walkabout or whatever it is that you want to do and experience... I really think this is important....
Thank you all for your help on my questions. The information and the bond I already feel towards all of you is immense and undescribable.
It's interesting that I am responding to a message like the one above. I am currently on leave of absence from work and am planning to pickup my car and drive it across country to visit some friends and do the things I want to do that may or may not be a possibility soon. I realize that a transplant is not a right but a privelege. I also realize that despite the best efforts from loved ones that many people cannot get a transplant due to any number of reasons.
I do not know what the future holds in the next month but if I dont get a transplant soon I will be starting Dialysis as soon as possible most likely. Despite diet my creatinine has not stabilized. I feel I am currently healthy enough to travel as long as I don't push myself. Wish me luck as this adventure starts on Monday the 13th for a couple of weeks.
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Yes indeed, RichardMel is absolutely correct in his advice on travel as he is on many other points as well. It's good advice for every human really but particularly for us whose lives take a big long detour once we start dialysis. With the notable exception of Bill Peckham who isn't yet aware that things have changed. Looks really good on him too.
Enjoy your trip and be smart by following your own counsel to not overextend yourself. Pacing is everything. Post pictures if you have a chance.
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Yes indeed, RichardMel is absolutely correct in his advice on travel as he is on many other points as well. It's good advice for every human really but particularly for us whose lives take a big long detour once we start dialysis. With the notable exception of Bill Peckham who isn't yet aware that things have changed. Looks really good on him too.
Enjoy your trip and be smart by following your own counsel to not overextend yourself. Pacing is everything. Post pictures if you have a chance.
thank you very much. I plan on keeping in touch on the road if possible.
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If you're coming to California - let me know! Would love to meet ya trojan!
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If you're coming to California - let me know! Would love to meet ya trojan!
That's very kind of you. I'll send you an instant message and provide you some contact info.
A little break down of my trip thus far for everyone and anyone who might be interested....
I flew into Vegas last week and spent a couple of days with some friends. As soon as I could I left to head west. There's something liberating about driving on a road trip by yourself. I know that it's not everyone's cup of tea but it provided time for reflection on past two years of kidney disease as well as the almost last twenty years of having Lupus.
I think I finally get what people mean when they talk about not sweating the little things or the any number of different ways of expressing how to take the life you are given and enjoy what you have versus the challenges that are thrust upon you. Maybe this is someone who has not had to do Dialysis yet. I have no doubt that if I do have to do it I will have my bad days as well and will certainly experience depression again in one form or another. Right now I feel focused though and will concentrate on those feelings and live for now instead of dwelling on the infinite amounts of unknown futures that lie ahead.
I did not plan too much of the trip and called some cousins of mine who moved from Manhattan to Santa Monica recently. They were very excited about my visit to see them and their new baby daughter. My mom's sister is also visiting them so it's been a great reunion so far. I plan on traveling north to San Fran/ Bend Oregon/ Denver then back to Indianapolis contingent on my health holding up along the way.
It's been a great trip. Hope to hear back from everyone. Hope everyone is well.
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I was a predialysis transplant and could not appreciate my kidney more than I do. It was my goal, along with my doctor, to get a transplant before I had to make the decision about dialysis. I worked hard with diet and exercise and whole lot of persistence to make that happen.
You don't have to be on dialysis to appreciate how devastating it is to have to go through that every other day. All we have to do is look at the posts here and see the pain that our friends are going through to know that we don't want to go through that unless it's absolutely necessary.
If you can get a transplant predialysis, do it.
Thanks Vandi! That's so good to hear! That's been my doctor's and my goal since day 1. However, he made it sound much easier and less stressfull than it actually was. I'm pre-dialysis with a GFR of 7 (have been as low as 6 in Aug, but have been at since end of Aug) and a creatinie serume of 6.43. I really feel good and I'm not nearly as tired now that I'm on EPO shots bi-weekly, as well as OTC iron. I don't have any other symptoms, drink when I'm thirsty and eat when I'm hungry. I've cut out cheese, OJ, dark sodas (have one occasionally) and millk. But that's pretty much it. My phos and potassium levels are high, but within range or just barely over. I guess you can say my labs are all within range to start, but I'm feeling good. No vomiting or nausea, no headaches, no rashes, no itchy skin, no fluid retension. I feel extremely fortunate! I will have to do dialysis the night prior to transplant, but hopefully that will be my one and only time for the next 15-20 years (minimum). Here's hoping :beer1;.
As I find out more about other peoples journeys I feel more and more fortunate for mine. I still hate the fact that I'm even on this journey, but I'm doing pretty good despite of it.
Good Luck, Trojan!
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Thanks for the kind words peeps.
I just feel that it's easy, specially when you're younger, to put off those things that you have in the back of your mind that you'd "like to do someday" thinking "Well there's plenty of time for that" - if there's anything that something like Kidney Disease teaches us is that life's too short and if I was asked to talk to a group of pre-dialysis [atients I'd stress two main things - do all that you can to look after yourself, follow meds/diets etc to prolong your kidney function prior to having to start dialysis, and to do all those things you want to do. Some may see that as saying "do it now because your life ends with dialysis" - NOT AT ALL!! However you do have to be realistic and realise that things DO change, and dialysis imposes its own set of conditions and restrictions. I'm all about living for now... who knows what is around the corner... that's more my point...
and I'm glad people are taking it up!! The cross country trip sounds fantastic :)
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Richard, I think you're right about going and doing things you want to do NOW if you are still lucky enough to be pre-dialysis or pre-transplant.
Dreaming will only get you so far, the rest must be experienced first hand. Don't let fear your kidneys will fail faster hold you back.
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About 3 years ago I found a little sign in a shop that says "today is not a dress rehearsal." I put it in our bathroom, right next to our toothbrushes and where we see it every morning. It reminds us both that we need to live and love every day. We aren't willing to waste a single day.
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The exact reason I rode my motorcycle to Vegas last year. Live while you have the chance.
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Yes indeed, RichardMel is absolutely correct in his advice on travel as he is on many other points as well. It's good advice for every human really but particularly for us whose lives take a big long detour once we start dialysis. With the notable exception of Bill Peckham who isn't yet aware that things have changed. Looks really good on him too.
Enjoy your trip and be smart by following your own counsel to not overextend yourself. Pacing is everything. Post pictures if you have a chance.
The best part of my trip so far is my little cousin in Santa Monica. She's not even two yet and has more personality than you can possibly imagine.
EDITED:Fixed img tag error- kitkatz-Moderator
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Yes indeed, RichardMel is absolutely correct in his advice on travel as he is on many other points as well. It's good advice for every human really but particularly for us whose lives take a big long detour once we start dialysis. With the notable exception of Bill Peckham who isn't yet aware that things have changed. Looks really good on him too.
Enjoy your trip and be smart by following your own counsel to not overextend yourself. Pacing is everything. Post pictures if you have a chance.
The best part of my trip so far is my little cousin in Santa Monica. She's not even two yet and has more personality than you can possibly imagine.
EDITED:Fixed quote tag error in quote - kitkatz,Moderator
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The pictures are beautiful! Your sweet little cousin is gorgeous!! What a cutie. I love the lily photo. Monet is my favortie artist and your picture reminds me of his paintings. Thanks for sharing.
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Loved the photos. Your little cousin is beyond adorable. :thx;
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what a cutie.
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Hey guys
I'm back home in the midwest. I had a great trip but it was a little shorter than I wanted. I hope to have some new pics online soon to share from the remainder of the trip.
Thanks for all the support
Scott
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Hey Scott, those are great pictures and I bet you had a wonderful time with that gorgeous cousin :2thumbsup;
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I am really glad you went on your trip. I am pre-dialysis and have been escaping the inevitable every month now for the past 18 months. I just took a three-week trip to Italy and now I have basically done all I wanted to do before starting dialysis. I am just getting a few alternations done at home now and I will be starting with no regrets. That said, I still breath a sigh of relief every time I go to the specialist when she says we can hang off for another month and get bloods done again. In the past three months since I have been sticking to a pretty strict diet and excercising every day- and left my job - the creatinine levels have gone done and my blood pressure is pretty normal. I feel absolutely terrific - not nauseated or itchy or tired - nothing really. My numbers are similar to yours but still up and down. If I start getting symptoms though, I wont hesitate to start. I believe it is a hard climb back if you start when you are not feeling so well. I hope you manage to hold off until you get your transplant. xx
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Trojan, I'm a pre-dialysis transplant patient and I can say that just the thought of spending one more night in the hospital is enough to make me take care of and appreciate my new kidney! But I have a "buddy" who has been on dialysis for a little over a year and he's scheduled for living transplant Dec 3rd and I see a whole different look in his eyes and bounce in his step already. I cannot imagine for one minute what he's thinking except "NO MORE DIALYSIS". I was excited, but I didn't have the look he does. God Bless him and his up-coming surgery.
Now, for labs and such, everyone is truly different. Myself, my GFR has been bouncing around between 6 and 7 since about April. In Aug. my creatinine was as high as 8+, but I was still capable of doing a lot. I was very fortunate not to have any other symptoms other than fatigue and muscle weakness. My neph said that for whatever reason (he's guessing muscle) that my body was able to tolerate the higher creatinine level. It came down to 5.1 by the time I admitted last Tuesday for transplant. I have no idea what my GFR is now, but my creatinine is at 1.2.
I agree that you have to go by how you feel. But I'm also one who trusts my doctor's opinion, so I listen to him, as well. My doctor was shocked that I was able to do the things I could, like mow the lawn and stuff. I was tired most of the time, but I tried to take advantage of the bursts of energy whenever possible.
My transplant doctor stated specifically that a pre-dialysis living transplant was the absolute goal for everyone and usually works out the best. With today's surgery techniques and advanced medications he said that unless I am non-compliant with meds and/or diet, other than a specific trauma to my new kidney that there is no reason why it should reject. I just have to watch my health closely for the next six months to year and then things will return (sort-of) to a semi-normal state.
But I'll tell ya, we "planned" our transplant just right. The day I admitted, every time I would clear my throat I was tasting/smelling ammonia. That was a new thing for me. We cut it close! But yet, he still didn't make me do dialysis that night!
Good Luck! Take care of yourself!