Transplant Journey outcomes/advice anyone?

[Hawaiilover]

Hi, I have had CKD for several years and declined dramatically over the last 6mths -1yr and was actually started urgently on dialysis in July when my GFR dropped to 3 and creatine was 12.43. I had already had a consult and was added to a wait list for kidney transplant in early February of this year. My children were all being tested, and I recently found out that 1 of them is a good match and plans to donate a kidney to me and I am extremely honored and blessed to have such caring & loving children. We are looking at doing this in early December, but it still is not scheduled. I am wondering if anyone here has had a transplant and what it was like leading up to it and then recovery time afterwards. With winter months ahead, I'm specifically wondering if anyone ran into any issues with getting sick due to being immunosuppressed afterwards. How does a common cold effect you? How careful do I need to be? Any insight would be appreciated.

[bonneville]

Good Morning Hawaiilover

I can't help on the winter months as I was Transplanted May 11th this year, 4 months post, I had both {KD kidneys removed and transplant all in one surgery, Bless you dear children my lovely niece donated to me I tell people if they have any symptoms of a cold or anything, to stay away, Just got over CMV, which we get because of our weak immunes .

I am 4 months post and still healing, but wayyyy better now then the first 2-3 months, good luck, you got this <3

[Hawaiilover in reply to bonneville]

Thank you for sharing

[jessie2pigs in reply to bonneville]

Wow that is a heck of a lot to go through in one op! You must be made of tough stuff, and I'm really glad to know you are doing well.

[bonneville in reply to jessie2pigs]

Thank you jessie2pigs, was rough but i made it couldn't have done it without help from above

[jessie2pigs in reply to bonneville]

I had both mine out three years apart but that's because one was still working and not giving me as much trouble as the other. I had a transplant two years after the last kidney was removed. I had very little pain, infact I've had more pain in my feet from gout than I ever had with abdo surgery!! 😊

[Rmatthew]

hey!

I had a transplant in august 2020, with some problems post surgery, kidney taking it time to wake up etc.

since I’ve had my transplant, been feeling way better but also had some problems with the medication. One being getting BK virus, and shingles. They made me feel a little unwell, but the Doctors in the hospital are so good at doing what they do.

My advice would be, if something seems not right, even the smallest thing, contact your transplant team. I waited a bit long on both those issues and wish I’d called sooner (still got them under control) thanks to them being great.

The recovery can be a bit of a pain, but 100% worth it, it gets easier every day!

I had been on dialysis for 12 years from when I was a child going into adulthood, and I can say Transplant is the right way in my opinion.

If you ever have any questions my messages are open, hope you get everything sorted and are doing better as soon as possible.

Matthew

[Hawaiilover in reply to Rmatthew]

Thank you so much for sharing, I'm glad it all worked out and you are doing well.

[jessie2pigs in reply to Rmatthew]

When I got my kidney there was another guy I was on dialysis with who was having one the same day from a different donor. My kidney worked well straight away and his was sleepy, it took a while for it to kick in and he was feeling very stressed and depressed about it but it got there in the end. I'm so happy to hear that yours upped it's game and you're now feeling well.

[Rmatthew in reply to jessie2pigs]

yeah I was in hospital for 3 weeks and I didn’t start working properly until the last 4 days, but they were so sure it was going to work, just taking its time, it was quite stressful because it was in the peak of covid, but I had faith!

My best friend also got his kidney transplant 6 days after aswell so that was great too

Thankyou all 💚

[Hawaiilover in reply to Rmatthew]

Sorry to hear it took so long, but glad it all worked out. Was this a Living or Deceased Donor kidney may I ask?

[Hawaiilover in reply to jessie2pigs]

Thank you for the information. Amazing what doctors can do, so glad all worked out for you and your friend. I am hopeful all goes well and mine will work for me right away. Were the kidneys you each received from living or deceased donors may I ask?

[bonneville]

thank you for sharing your journey, sorry to hear you had a sleepy kidney, mine started as soon as it was hooked up, my numbers are amazing 😊 so that’s a bonus, thank you for offering to help me if I have any questions, I joined a group on FB called kidney transplant, they are amazing in that group, so helpful, I’ve heard of people catching BK and shingles easy, I just dealt with CMV but team was amazing and now just cleared 😊

[Hawaiilover in reply to bonneville]

May I ask if yours was a living or deceased donor kidney? Just wondering if that makes a difference on working right away or not.

[bonneville in reply to Hawaiilover]

I had a living donor, was through the paired exchange, since my niece wasn't a match, but didn't take long, our names were entered Feb 07 and got the call Feb 12 that they found a match

[Denise-80 in reply to bonneville]

that is amazing! And wonderful!

[Denise-80 in reply to Denise-80]

Hawaiilover - Mine was a deceased donor. I had to wait a complete day at the hospital for the surgery to occur after they called me because they had multiple surgeries. Mine took about 3 days to get going. Not sure if the wait contributed to this or not. I felt better pretty quick; the itching and the extreme fatigue cleared up quickly. But I’m 8 years post tx. My creatinine on Tuesday was .0.82, which puts me at a GFR of about 84.

[Hawaiilover in reply to Denise-80]

It may be the delay, but I have noticed now others stated delay with a deceased donor so that maybe it as well. Glad it all worked out. So many success stories are very encouraging even though it's a little rough getting there. I am anxious and nervous for both myself and my daughter as the donor but know God will help us through this. Thank you for the info.

[Hawaiilover in reply to bonneville]

thank you

[Denise-80]

Hi - I was transplanted in May 2014. I would not have turned down a kidney in December though!! You are the highest risk of illness/infection during the first three to six months or so post transplant because of the med they give you at the time of transplant (induction agent) and also your immunosuppressives are typically highest at this time. (This is a general statement and your experience could be different.)

During the first year after transplant , I had a bout with CMV that I got from my donor kidney (i was negative and he was positive). I didn’t have any symptoms whatsoever and only knew this from lab results.

I’m careful around people who are sick…avoiding them….not inviting them to my home, etc.

My son did have covid! He was 19 at the time. I wore a mask and he isolated in his room upstairs, but I was his care giver during that time. Honestly, it would have been worse for me if I did not take care of him. I’m vaccinated and as mentioned I wore a mask and I was very careful. I stayed well.

Surgery recovery time for me was about 5-6 weeks. Looking back, I went back to work a little too soon. I’d say…rest well and let yourself heal.

Best wishes to you!

[Hawaiilover in reply to Denise-80]

Thank you so much for your information. From what I'm hearing so far is that I can expect the first 6 months to be tough but well worth it. I will be extra cautious for sure being flu season.

[Denise-80 in reply to Hawaiilover]

absolutely worth it!!!