I'm new here!

[godspeed]

I'm new here. I just started dialysis. Hate it. My brother is a living donor. But all the red tape to get a transplant! Something about covid!

[Jayhawker]

First, welcome to the firum🐶

Are you on PD or HD dialysis?

Also, what red tape are you running into with the transplant? (There is another forum specifically dedicated to kidney transplant issues.)

I think you’ll find this forum to be a supportive group of persons grappling with CKD.

Jayhawker

[OVERPAR in reply to Jayhawker]

My wife gave our daughter a kidney some 10 years ago. I know there are many tests to go through but not only do the Transplant Team got to be sure you are a perfect match biologically and well enough to go through a major operation, but they have also got to be sure you have both thought it through mentally, and the living donor is perfectly sure he wants to go ahead after knowing all the facts. It took my wife and daughter some 6 months to go through all the teats and the other red tape but it is necessary and both my wife and daughter and now both very well and enjoying life.

[Jayhawker in reply to OVERPAR]

I agree entirely. I was wondering what COVID-specific red tape godspeed had run into.

I’m actually on the transplant waitlist now. It took me about 3 months to complete all the testing. Then it was another month before the transplant team approved me. I’m now waiting for a deceased donor kidney. They said they expected I’d receive a deceased donor kidney in 2 to 2 1/2 years. But that was before COVID. I’m not sure what COVID will do to the wait time.

These are certainly crazy times.

Jayhawker

[htpi1543 in reply to Jayhawker]

Hi Jayhawker

Good to know that you are on a wait list for kidney

I am not yet on dialysis and would like to get on the list. Could you please share the link of transplant forum you mentioned in your post

God bless🙏🙏🙏🙏

[Jayhawker in reply to htpi1543]

If you click on the 9 circles at the top of the page you’ll be able to find the kidney transplant firum.

And you can be evaluated for a transplant before you are on dialysis. Your wait time will start as soon as you are through the evaluation and approved even before you start dialysis.

Jayhawker

[htpi1543 in reply to Jayhawker]

Thank you. I got in

[HealthBuddyMelissa]

Welcome to the forums. Yes, I can imagine Covid is a nightmare for anyone needing a transplant. Prayers that it will come quickly.

[Melirm]

Hi, I am active on the transplant list and have a living donor, my brother as well. And although he has been approved, doesn’t match me, so we are entered into the Kidney Share Scheme. I have been told by my transplant team that all transplants had been suspended during the lockdown period. The deceased kidney transplants have now just reopened in my area (South East England),but not to everyone. Only those who have a very low risk are active. The Living donor scheme is still suspended until further notice.

This is probably part of the reason it seems to take so long. Although it did take a long time to get the approval process completed. Speak to your transplant team, that’s what they are there for and I am sure they will answer any questions you have.

It’s natural to be impatient, but it’s also imperative that you have the best chance of making this work for you both.

Good luck with your transplant. It will happen. xx

[Jayhawker in reply to Melirm]

Yes, my transplant nurse case manager told me that my transplant center had discontinued transplant evaluations from February through sometime in March. But they had continued doing transplants. However, I didn’t ask if they had only done living donor transplants or were only doing deceased donor transplants or both. I live in an urban area in the center of the United States.

I’ll be back into the center for the annual meeting in either December or January. I expect I’ll get a better idea what impact COVID has had on transplant wait time then. In the meantime I’m doing what I can to avoid COVID and to stay “transplant ready” as I think of it. I turn 67 in a few days so realize that if COVID extends the waiting much it may lead to me developing serious additional side effects related to CKD that would make me ineligible. But this COVID situation is for the most part entirely out of my control. So I’m doing what I can to try to stay healthy and strong. I’m hoping for the best. But I’m ready for anything that may happen.

Jayhawker

[Taisha2121]

Hi

Hope you're feeling well! Sorry for the red tape you're experiencing as a result of the covid. Hopefully you will get your Transplant asap!

I myself was on Peritoneal dialysis for several years before receiving my Transplant last year January, it really is a new lease on life! If u don't mind me asking what type of dialysis are you on?

Continue taking care of yourself, stay optimistic that's important!

[godspeed]

I have a catheter in my chest and neck. Whatever kind of dialysis that is. I don't like needles. Of course I have to watch for infections, but I really could care less. I have bipolar and had prostate cancer. Arthritis in my knees and neck. Yes, I have pity parties. A real blast!!!

[Jayhawker]

If they’re using needles I’d guess you’re on HD dialysis. I’m planning to use PD dialysis. It uses a catheter typically placed in your belly but sometimes in your chest. But no needles.

I’ll dialyze daily. I’ll probably use a machine, a cycler, to dialyze overnight as I sleep. That’s supposed to be gentler and allows you to dialyze on your schedule. It’s also supposed to be a pretty quick recovery following each session.

And for me the big incentive is that I can do this independently in my home. I’ll be able to make it fit my schedule rather than being chained to a dialysis clinic schedule. You can do HD dialysis at home with a care partner as well. If you do that you can dialyze daily and at night, again with a care partner.

So I guess I am wondering whether a different form of dialysis would work better for you. It’s an option. But you know yourself and will know what’s best for you.

I’m trying to stay strong physically and mentally as I wait to get the call for a deceased donor kidney. This covid situation is totally out of my control. So I’m hoping for the best but am prepared for anything; at least I’m trying to be prepared for anything.

Jayhawker