TRANSPLANT LIST

[Cooperdog60]

I found out this morning that as from today I will be listed for a Kidney Transplant. I feel pretty scared now, and still don't feel as tho this is real.

[rabbit01]

I am in the same position and feel like that too.

[Cooperdog60 in reply to rabbit01]

How long have you been waiting rabbit01?

[rabbit01 in reply to Cooperdog60]

I have been on the list for about 4 months.

[Cooperdog60 in reply to rabbit01]

Let's hope you get the call soon

[rabbit01 in reply to Cooperdog60]

Thanks and you.

[MAS_Nurse]

Hi Cooperdog60 and a warm welcome to this caring community. I am sure this must feel unreal to you and can appreciate how you must be feeling. A transplant is considered to be the best treatment for you and then you can feel better and enjoy an improved quality of life.

I have found some useful websites for you--

Transplantation/kidneycareuk:

kidneycareuk.org/about-kidn...

Support can be offered through patient grants, holiday grants, counselling and advocacy service.

kidneytransplant-waiting list-NHS:

nhs.ukHealthAtoZkidney transplant

includes useful information on staying healthy while you are waiting for surgery

Health Unlocked also has a Kidney Transplant Forum which you would be most welcome to join. It is listed in A to Z of communities.

Please stay on this caring community for support and let us know how you are. Please, can any other forum members pop by and say hello to Cooperdog60.

Thank you and best wishes.

[Cooperdog60 in reply to MAS_Nurse]

Thank you for the above information. Yes you are right this is a very caring community x

[Christine501]

Hi, I have been on the Transplant List for 6 months. Initially I was apprehensive, but now I am looking forward to it, so I can stop peritoneal dialysis, get rid of my catheter, enjoy better health, and to be able to have a bath again! Staying positive is helping me.

[Cooperdog60 in reply to Christine501]

Hi Christine, my situation is similar to yours, but I am not on dialysis yet. I am 61 years old and dialysis could start at any time. Its good to see you are staying positive and I am sure you will hear something in the near future. Good luck and keep positive. Sandra x

[jojokarak]

I am not on the list yet for a kidney but was and have had a liver transplant.... The way I dealt with it was just a day at a time it was a roller-coaster and I was on and off the list like a yoyo.... The last 5 months of my wait I was in hospital and I didn't even realise that I only had months to live....

The time it hits you more is when you get the call in my case woken up to say they had an organ... Every emotion in the world hits you in a space of a few minutes but my first call wasn't meant to be... I definitely handled it better second time, that was until they started taking me down to theatre and I fell to pieces but here I am 😊

I hope you don't have to wait too long x

[Cooperdog60 in reply to jojokarak]

Thank you for your reply Jojokarak. Yes i do think one day at a time does help as does a positive attitude. Hope you are keeping well and I wish you all the best in your journey. x

[WYOAnne in reply to Cooperdog60]

Yes, when you are put on the list for a transplant, it does make it all the more real! When I got the call for my transplant the reality of it all really hit me. For most of us I think that feeling is pretty common.

I was blessed by a transplant from a deceased donor. It will be 20 years ago this Oct 15th. Have they told you the average wait time for someone with your blood type?

Take care and keep us posted

[Cooperdog60 in reply to WYOAnne]

Hi WYOAnne, wow 20 years you are a true inspiration. They said the average wait time is about 2 - 3 years. However I am hoping that one of my daughters (who are going through the process of being tested at the moment) will be able to donate their kidney to me. That is my situation at the moment so its just a case of wait and see I suppose. Take care, Sandra

[WYOAnne in reply to Cooperdog60]

Keep us posted on your journey and how the testing of your daughter turns out.

Thinking of you.....

[Cooperdog60 in reply to WYOAnne]

Thank you I will do x

[Hassmac]

Hello Cooper dog ( and others) . I am sorry that you have had this news and I am sure it is upsetting. I know this, as I have been in this position twice now unfortunately. I am back on the Kidney transplant list 17 years after having a successful transplant from my father ( I even became pregnant after the transplant and my healthy daughter is now 14, so there is tremendous hope with this treatment). You can perhaps be assured by the fact that you are ON the list and that something is being done. I felt SO much better after having the transplant and I still do feel better with my current limited function than I did when my native kidneys failed.

Medical research has moved on even in the last 17 years and anti-rejection drugs are less aggressive and I believe more effective ( although you would have to talk to an expert about that). AS I think a nurse on this website has said, a transplant is the best treatment available for kidney failure and preferable to dialysis. Is there anyone you know who would be willing to donate? My father donated at 57 and is still as fit as a fiddle. You don't even have to be related nowadays I believe, as long as you are the same blood type ( again, get proper advice on this though) I hope you don't have a long wait.

In the meantime, I am sure you have been told to eat healthily, avoiding salt etc. A good antidote for me is to keep as active as my condition allows. So sometimes I am too tired to do anything, but when I am feeling ok, I will potter in the garden or go for short walks. I go to a choir and I swim once a week ( gently mind you). Try and stay as positive as you can and remember that kidney disease is treatable these days. I hope this has helped.

[Cooperdog60 in reply to Hassmac]

Hi Hassmac yes your reply has helped tremendously. Sorry your first transplant failed but like you say you still feel better even with limited function and I hope you will be able to get a second transplant when the time comes. I have two daughters who are wanting to give a kidney to me. However they can only test one daughter at a time so they had to choose which one would go first, so my youngest daughter is going through the process. In the meantime I do believe you have to be on the active transplant list either way. I hope things move fast now and I can get a live donation from either of my lovely daughters. In the meantime yes I am eating healthy and I get plenty of excersise by working 24 hours a week in a sandwich shop. x

[Hassmac in reply to Cooperdog60]

Hi Cooper dog. Thank you for your reply. I think one of the ways I stay positive is not to think that my current kidney is failing, but rather that it is deteriorating. I also hope that I get another one soon. I will have been on the UK register for two years in September, but it may be that my neice or one of my nephews can donate. They are all willing, but I am reticent to accept their offers due to their young age. Do you mind if I ask how old your daughters are?

[Cooperdog60 in reply to Hassmac]

Hi Hassmac, yes I think you are right in thinking that your kidney is deteriorating rather than failing, it helps us to deal with the situation better. I am from the UK, 61 years old and have had deteriorating kidneys for nearly 40 years. My daughters are 37 and 39. I understand how you feel about your neice and nephew donating, I felt the same way at the beginning, but both my daughters have said from the start that they want to do this. I hope that whatever happens you get your kidney soon. Sandra x

[Hassmac in reply to Cooperdog60]

Dear Sandra, thank you for your reply, it has encouraged me. I felt very guilty about my dad donating his kidney to me and now that it is 'deteriorating' I feel even worse at times. However, I know that these are irrational thoughts and I know that all the children are very willing to donate. They are only 20,23 and 25 though, so I feel that they would have a lot of time ahead of them with only one kidney. Having said that, I am sure there are people ( like me at the beginning I suppose and my dad) who have healthy lives with only one kidney. Lots to think about. I hope that one of your daughters is a match and you are well again soon. Believe me, it will change your life Sarah x

[Cooperdog60 in reply to Hassmac]

Hi Sarah, glad you are feeling a lot better about your niece, nephews donating a kidney to you. It is the ultimate gift any one can give so bless them. I am sure that they will have a long and healthy life ahead of them (even with one kidney) and after all medical science has come a long way too. It was lovely of your dad too donating his kidney to you all those years ago. Thank you for making me feel more relaxed about the whole situation too. Take care and I wish you all the very best for the future. Sandra x

[Hassmac in reply to Cooperdog60]

Dear Sandra, You are welcome, I am glad I could help and you have helped me too. My GFR is wavering between 11-12 and I am working 24 hours per week too! It is a scary time and many thoughts will be going through your head. I wish you all the best for the future, keep in touch.

[Cooperdog60 in reply to Hassmac]

Thank you all the best to you too and I will keep in touch x

[RickHow]

First of all, the best of luck to you. But I think you must remember you are not alone. Of course this makes you anxious, nervous, wondering. As with any disease, waiting is the hardest part. But remember, each year in the United States there are about 20000 kidney transplants. About 75% are a result of the transplant list (the remaining 25% are from living donors). The typical wait time is 3 or more years, but as with all averages that is deceiving. Many, many are shorter wait times. So many factors determine who gets priority. Blood type for example. Which center you registered at. Many factors. But you can see by the numbers you are not alone. You will get through this. Be strong.

[Zazzel in reply to RickHow]

Always nice to see and hear your positive presence here RickHow!

[Cooperdog60 in reply to RickHow]

Thank you RickHow I have always remained positive and dealt with this awful disease the best I can, but when I was told that I would be listed there and then it just shocked me a bit. Im ok today now that I have got my head around it. Im hoping one of my daughters can donate a kidney to me, they are currently being tested. I hope you are keeping well. x

[carl1969]

His coop! This thing just gets worse no matter where you look ! I am totally understand the fear and plus auger. Am so sorry son!

[Cooperdog60]

hello Carl, no need to be sorry. I am actually female and 61 years of age. Having dealt with kidney disease for nearly 40 years I can actually say that I have always stayed positive. My gfr is 12 at the moment but I am still working 24 hours a week and do not feel too bad. Transplant will give me a new lease of life and free me from the inevitable dialysis when the time comes. Sandra

[amandarobbins]

Hello, Im currently looking into a reevaluation for a new kidney transplant (my current transplant has lasted me almost 16 years) and I am also scared for getting a new transplant. I may end up on peritoneal dialysis due to covid. I wish you luck on this new transplant and hope all goes well for you.Amanda