Live donor results. How long did you wait?

[Ziggydoodah]

My husband was tested 9 weeks ago to see if he was suitable.I asked my dialysis nurse in Tuesday if there were any updates. She sent an email to the transplant nurse asking for any information. My husband received a voicemail yesterday at work.The transplant nurse laughed as she said, she thought she had called a couple of weeks ago. She then said they had discussed the results and had the outcome. He phoned her immediately back. No answer. Hopefully he can speak to her today. I have now formed the opinion, he is NOT a match. Im just a bit fed up with the lackadaisical attitude.The nurse is based in the same unit,where i attend dialysis 3 times a week. If she had called 2 weeks ago,did she not expect us to reply? Sorry just needed to rant a bit. Physically I'mcoping with dialysis, mentally I am not. I appreciate she has a lot of patients to deal with but I really need to know what is happening. We didnt enquire sooner as we just presumed they would let us know,as soon as the results were available. How long did you wait for live donor results?

[TAMS_SWEETASCANBE]

Good Morning, I'm 3 months post transplant surgery. I believe my cash is most unusual. I was official put on the transplant list late November of 2021. I got called with the match April of 2022. I watched my nutrition closely for the last 8 years and lived a diabetic lifestyle even though I wasn't diabetic. I was lucky enough to not be on dialysis. So I was only on the list for 4 1/2 months. That's not normal unless the match is a family member or a friend. My donor was an altruistic donor. My body accepted my new kidney right away. I am temporarily diabetic now because of the anti rejection medications and steroids. I feel great, but my WBC are really low. I feel so lucky how well it all went and because I was eating right for many years before the diabetes is really well controlled. I am now on a once a week insulin injection. I still have soreness where the new kidney is. I have a weight restriction for lifting over the next year. I do weekly lab work to make sure my kidney is still happy. My transplant coordinators were awesome. I did my surgery at University Hospital in San Antonio TX. I had a set of pre transplant coordinator nurses who are registered nurses. After transplant I have more nurses that help me. They call me weekly to check up and let me know my results. This hospital has an app that I can see my results, so that when I go see my family doctor I can share my lab work. I also have a group of specialty pharmacists that are assigned just for kidney transplant patients and they make sure my medicines are mailed to me in time, since I live 5 hours away. They FedEx my medications. I take 19 medicines right now 2 times a day right now, but in the past I've taken some 3 times a day. The medicine have decreased a few of them. It's a small price to pay to be healthy and live. Maybe there's a way for you to change where you get your care. My home town is horrible for healthcare, so I chose to drive 5 hours away for specialized care.

[Ziggydoodah in reply to TAMS_SWEETASCANBE]

Hi Tams. Thanks for telling me about your experience. I am based in Scotland, so its very different protocols etc. However at the end of the day, the aim is still to get a new kidney!! My husband is definitely not a match but I am OK with that now. It has been really interesting, reading your post and wish you and your new kidney the best of health. Take care x

[TAMS_SWEETASCANBE]

Oh and one more thing, my nephrologist said that since I was so active, she recommended that when I would need to go on dialysis before my transplant that there was a dialysis machine I could have at home and connect to his 5 days a week for 1 hour only. My nephrologist was amazing. She didn't just have a standard of care. All of her patients are different. Her name is Dr. Lisa O Cabrera in San Antonio TX.

[judan499 in reply to TAMS_SWEETASCANBE]

I am on home dialysis I do it while I sleep 4 days a week 8 hours each night

[Rtbird]

Unfortunately I have been on transplant list since Nov of 2021. I have 2 locations here in Southern California I am working with. But from what I have heard, here in California there can be a wait up to 7+ years. So I have a ways to go. I am doing PD and have been since Dec 2021. Sometimes I feel there is no hope, but then I think to myself I need to keep my spirits up to stay in the right frame of mind. Good luck with your transplant once you get one. I have not had any calls regarding possible matches on donations, but I figure they are not looking that hard for me here in CA. I would go out of state, but the cost is too big for me right now.

[Ziggydoodah in reply to Rtbird]

Hi Rtbird. I am based in Scotland, so not really familiar with the American transplant protocol. However i do understand the feeling of losing hope. I think thats the way I was feeling when I did my post. Yes we have to keep positive (easier said than done some days 🙄)I really hope you get a donation and soon x

[Juliepkd]

Hi. I went down the live donor route 4 times. My husband went through many invasive tests and counselling over 3 months but fell at the final hurdle. Although he was a good enough match, bloods, physiology and virology etc, ultimately his own kidney function was too low. He was only 1% lower than the cut off criteria. So that was a blow, especially to him as he really felt he was responsible for being able to 'fix' me.😢

My sister in law went through the same process, this again took about 3 months but ultimately her physiology was so unusual the surgeons were not confident they could use her kidney successfully. Another disappointment.

Two close friends offered to help, both were unsuitable blood matches so both only had 2 weeks wait to find out they couldn't help me. All of these investigations were done on the NHS at Addenbrookes in Cambridge (UK).

I knew that Live donation is probably the best option, especially from close relative and for some reason, husband and wife transplants tend to be quite successful too in the UK. I had exhausted all my potential donors and was resigned to staying on Haemodialysis until a deceased donor kidney was available. After 2 years, I got the call and received the greatest gift 🎁. 9 weeks post transplant, I feel incredible and so very grateful to my amazing donor (whomever he is) and his family for giving me my life back.

Please keep going, if your husband isn't a match, someone out there will be! Sending you positive thoughts and very best wishes.

Julie

[Ziggydoodah in reply to Juliepkd]

awww that is amazing news Julie. I am so glad you have received a kidney and feel incredible 👍. It is lovely to hear the gratitude you have for the donor and his family. They have given you the gift of life and still a part of their loved one lives on. My husband is definitely not a match. He also has a small issue with clotting. I was pretty gutted when I wrote my post..just having one of those days. I realise it will be a diseased donor too. Thanks so much for telling me about your experiences. Wishing you all the best for your new life xx

[Beachgirl32]

Sorry it took so long to get answer and find out your husband was not a match . Did he find out if he pass all the test.Does your transplant center offer pair exchange . If your husband is wiling to go that route . That way they will find someone who matches you . It probably the way I will have to go if I find a donor cause my antibodies are so high. I know someone told me it took about three months for there donors to go through all the test and they were told they were not a match . They were told they could do a pair exchange and they did and she is very happy that she got a kidney.

[Ziggydoodah in reply to Beachgirl32]

Thanks Beachgirl. Yeah my husband is definitely not a match. He has a minor issue with his clotting times. We were told it wouldn't be an issue but obviously it is. That rules him out for donating a kidney full stop. I hope things workout for you when the time comes. Thank you for replying to my post.