Dialysis and transplant.

[Fsgs57]

I want to tell everyone my experience, with dialysis and trying to be put transplant list.The experiences I have had at have been good and bad. The good is when I no cramps and good blood pressure. The is when the total opposite. This has happened several times. I would say be your own advocate. The reason why is sometimes the nephrologist and can make mistakes. I will give an example they have down as diabetic. I'm not my first nephrologist, made that diagnosis. I asked to have that corrected. They tell me they unable to. The incident I had at another clinic was with a tech. He told me that he tell, the Mayo Clinic to take off the list. The reason he felt I did not deserve it. I later told the manger what happened. I do not what happened after that. I transferred to the clinic, where at now. I will say this again be your own advocate. The process of being put on, transplant list is long. I'm not on it yet. I hope by October I will be. I will be looking for live donor. I say to everyone on dialysis and trying to get on the transplant list. Be 💪 have faith and look to 👪 friends and colleagues. I let you all know once I'm put on the list. Stay tuned the best is yet to come lol.

[SadMad]

I have been on the transplant list for almost 2.5 years and was told a year ago that because of my blood type I could be called any day. Now it is time to do all the tests again and I am scared as I have been having bowel problems. You get scared to mention if you are sick that they will take you off the list. Your damned if you do and damned if you don't. You can't depend on the doctors. You have to be your own healthcare taker. Doctors caused me to be ESRD by not really treating my high blood pressure. They just put me on more pills. I am at the point of giving up ever getting a transplant. They test my blood every month but never explain the results. I now hardly pee but seem to have bowel movements all the time. I only have Medicare now as my Cobra insurance ended so that is another issue. I am drowning in debt my husband caused but can't afford to live without his paycheck. We are basically roommates. Just found out he had been having an over 2.5 year affair that he ended to stay with me. I can't win.

[ZenPDX in reply to SadMad]

Keep the faith SadMad. I have the worst blood type for getting a transplant and I’ve already received one call for a transplant and I’ve only been on the list for a little over a year. As for your blood tests if your doctor wont spend the time explaining the test results it’s time to look for another doctor. I can honestly say that if it weren’t for my nephrologist I would have given up. I actually look forward to my monthly appointments with her as I always leave feeling better than when I went in. Your nephrologist is the most important person in your life and a good relationship is essential. Good luck on your journey.

[Beachgirl32]

Yes it long process to get on the transplant list and to stay on it . I have been on it about two and half years and they have made me inactive for three times. Once my injection fraction was too low . Second they found a weird cyst on my kidney s duh I have polycystic kidneys I have thousands of cysts in my kidney I sure some may look strange. I really had to be my on advocated to get active again on that one . Third time recently when they found an aneurysm but the neuro want to watch it it is small. I had to call the neuro and said even though you sent a wonderful letter explaining about the brain aneurysm and the risk cause I already had two brain surgery the transplant center need the word s that I am approved by you for kidney transplant.

So now I’m back on list yes you have to be your own advocate it very important to get up to date on all routine test you need to. Hoping you will get on list soon.

[horsie63]

I was active on the list for close to a year when PD failed and sent me to the hospital for 2 months. I took myself off as I didn't want to say no while I was sick. Now I'm needing to regain about 10 pounds I lost in the hospital and have a mammogram done to go back to the center for testing. It's taking forever to gain the weight and I have a chest catheter for hemodialysis so a mammogram is out of the question. I do know that even inactive the time I have spent is accruing so it's possible that once I get back active I won't have to wait long.

[SadMad in reply to horsie63]

I am so sorry PD failed for you. I couldn't survive without it. I just couldn't tolerate hemodialysis but did over 2 years of it. Have been on PD for a little over a year.

[horsie63 in reply to SadMad]

I guess some things just aren't meant to be...when PD worked it was great but when it stopped and I ended in the hospital and thought I would die...it was pretty awful. I do in center hemo and it's really not that bad. I live in a rural area and there are no neighbors and I'm working from home so 3 days a week I get to talk to people who are going through the same things. I've made a couple of "friends". And you get to see the same people so when someone isn't there it kind of bothers me. I'm sure i still have trauma from the 2 months in the hospital.