I want to start form little story. According to my nephrologist I have CKD because of genetical legacy. And it seems to be true. My sister had a similar diagnosis. In her's 23 she went to PD. It was in middle 2000's, local dialysis treatment was not so developed as now. She needed PD procedure 4 time a day, pretty incomfortable. She was in transplantation waitlist from very first day of dialysis. After 2 years donor was found. But operation wasn't successfull and her body rejected new kidney. Rejection provoked trombosis and she was died.
Now, I'm HD patient since 2016 and dialysis treatment became much more comfortable. As much that I can choose it for my whole life, instead of transplantation. From my expierience this operation have 50/50 chance to success. I don't want put myself to such risk.
How do you think, which way are better personally for you?
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TomMilds
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Wow, interesting question. For me, I want a transplant, and yes I know some the risks. I never wanted to have to survive by being hooked up to a machine. I also feel comfortable taking a experimental transplant. I believe in clinical studies and am willing to take a risk if it will move science forward. There are a lot of risk with dialysis that are not talk as much about. Some can kill you outright, like too low BP or calcification from calcium levels building just to mention a few.
Low blood pressure and calcification is controlable. Just need a closely attention from patient (in general doctors don't care). Of course dialysis can not provide endless life. But, after transplantation, patient needs a lot of pills to slow down immunity to prevent rejection. Pros and cons between dialysis and transplant are almost equal. The difference only in invasive surgery.
Just to add some more facts... Kidney surgery now if often down with a robotic arm called a Davinci arm which is much less invasive as there is no large surgical opening.
I think you are already fully aware of the pros and cons. Living your life toied to a machine for so many hours of your life is horrible. But so is getting a transplant and having it fail on you anytime afterwards, even many years. And ending up back on HD. I suppose that if Transplants had a much higher probability of sucess it wouldn't be so hard to choose.
On the other hand, you should be grateful that you even have a choice. There are many people on Dialysis who have no other choice.
Two months ago a 62 year patient received a pig kidney (genetically modified to minimixze rejection) at the Massachusestts General Hospital. I had high hopes. Until yesterdau I read that the patient died after two months. Although the hospital states that the cause had nothing to do with the transplant (he had Diabetes) it was nevertheless both unfortunate and disappointing to hear.
One thing to consider is the amount of time that HD takes up of your life. If you are still working and pursuing an active career, a transplant may be very attractive, even taking the risks into account. The same may not hold true for an elderly retired person with more available time.
I can understand your fears regarding transplant, rigorous tests are done in advance. There are people who have had their kidney for over 20 years. For myself, my function went down to 6% and was about to go onto PD, this was 2021. Luckily I was given a transplant 10 days after going onto dialysis, partly due to Covid. Life is normal and i don't have a massive amount of drugs to take. Initially there was quite a few but they are reduced through time. I now only take 4 first thing, 2 later in the day and 3 at night, very manageable. I don't know what my life would have been if I hadn't had my transplant. Sometimes new kidneys can take a little time to wake up but mine worked almost immediately.
You have quite the history and I'm sorry for your loss of your sister. I can only speak of my personal experience.
I chose PD to do first as I travel some for work and I have family scattered across the US. It worked for 6 months and failed and put me in hospital where I almost died. Spent 2 months in and ended up with a chest catheter for hemodialysis.
I go in center Tue, Thu and Sat. I go to the office (work full time as an internal auditor) M, W, F and work from home after dialysis on Tue, Thur. I do 2 hours 45 min.
They tried to put a fistula in but it never worked so now I have an AVGraft. I just started using it a week or so ago. Today I used a 16 gauge needle. It didn't hurt. I've researched and learned everything I can about the machine and how it all works. So far the nurses/techs have answered all my questions.
All that said I was active on the transplant list before my hospital stay. I lost a lot of weight I couldn't afford and have worked hard to regain it. I'm back testing, etc to go active again on the list. I have one meeting with the nephrologist to finish. Personally I chose the risks/reward of a transplant. If I had to stay on dialysis, then I would as I want to live to see my granddaughter. I'd like to see my mom before her time comes as she's 86.
I have been thinking about this very question myself. I am not on dialysis yet, but plan to do hemodialysis when the time comes. My GFR is 16. I am getting my veins mapped in two weeks and have an appt with a vascular surgeon after that for a fistula. I was just added to the transplant list one week ago. Honestly, I’m not thrilled with either choice, but such is life. After doing a lot of research and reading some of the posts in the NKF communities forums, I’m leaning toward hemodialysis. Partly because of my age and circumstances. I’m going to be 66 soon and I have no support person. Longevity does not run in my family. I’m retired, so I don’t have to worry about getting to a job. I already take medication for other conditions and I don’t like the idea of adding a bunch more for the rest of my life, especially because of the side effects. You have to worry about avoiding people who are sick. After 3 years of being afraid to be around anyone because of Covid, I’m not sure I could deal with the stress of it again. I was literally afraid to leave my house (and barely did for 3 years) and felt very isolated and depressed. I read that Post-Transplant Diabetes Mellitus is a real possibility from the anti-rejection meds. As well as weight gain from the steroids. I’m already overweight and don’t want to gain more. It’s easy to pick up viruses and harder to get rid of them (like CMV). Some people, albeit the minority, have more problems after the transplant than they did before. Who knows, maybe I will feel differently after I start dialysis. Everyone needs to make the best choice for their circumstances.
I'm not in your position - I'm a caregiver to a man who went into kidney failure, went on HD and later transitioned to PD, and then received a transplant. Our nephrologist explained the options for my husband - dialysis and/or transplant. When I mentioned that if dialysis worked well, it might be good to simply stay with that, he responded that the quality of life as well as lifespan was generally longer with a transplant. (While your sister didn't benefit from this, this is supported in research, e.g. piedmont.org/living-real-ch... So my hubby, too, mulled over the next steps - doing nothing and simply passing away, going on dialysis and staying with that, or going for a transplant. I'm forever grateful that I was included in the planning as his support person - driving, cooking, researching, caregiving - holding our home and business together. Yet, in the final analysis, it really is your personal choice whether to simply pass away, to go on dialysis, or seek a transplant. (We can't forget that sometimes what we really want is snatched away or denied.) The thing is to be be very informed and very up-to-date about those avenues and not to confuse another person's outcome as your own (unless verified by your team) - being mindful of those who love and stand by you. I'm grateful my hubby (and his nephrologist) included me in the decision making process. Would my hubby make the same decision ten years from now? I don't know. I do know time moves on, the health field moves on, and an open mind is important. I wish you the calm and confidence that your choice is the right one at this particular time and place.
I thought I’d put my two cents in from a different perspective. I got a call yesterday from my transplant center informing me that after being on the transplant list for over two years that I was officially kicked off the list.
I was removed for health reasons beyond my control.
But back to my reply. I have been doing PD at night during that time and I saw the potential for a transplant as the light at the end of a long dark tunnel. Have come to strongly dislike the hassle of PD. The lack of ability to travel and the need to be tethered to a machine for life for me has added to my problems with depression.
I guess what m trying to say is that at some point you may come to a point where you wish you’d taken the chance and got a transplant when you could.
My experience reinforces that the call you get from your transplant team could change your life for good or bad.
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