r/kidneytransplant

So for starters, I’m a 17 year old girl who’s been having weight struggles ever since getting my transplant at 11. It’s like no matter what I do, I just can’t seem to get my weight back down or have a normal life. I’m a pescatarian and use Colorguard as well as yoga as my exercise, but I only feel myself getting more swollen by the day. Taking prednisone really sucks as a teenager. While everyone else has the body I want, I’m stuck in a never ending loop of the scale going up and down. My weight never gets brought up at the hospital anymore, I don’t know why? Is that a bad thing? Anyways, this is just a little rant. I’ll take any advice that’ll ease my brain, please.

18 years post transplant. I started lifting weights about a month ago and I drink 3 liters of water a day andI feel as good as I’ve ever felt. If you’re feeling down, I promise there’s life on the other side.

Hi all I am 26 years old and I’ve been lucky enough to get the call for transplant in 2 weeks from a live donor! I’ve only been on PD for 3 months so I’ve been extremely lucky and am excited to get some freedom back!

My main concerns are post-transplant regarding immunosuppression. I work in a school and my partner works in a hospital so both are exposed to a lot of germs daily. I also travel to work by bus, love to travel to different countries, love going out for dinner and go to gigs and also like to sit out in the sun (with sun cream on) when I get the chance. All of these things don’t really seem to bode well with being immunosuppressed and I’m just worried that I won’t be able to live my life in a way that I enjoy after being transplanted.

How do you guys find being immunosuppressed? Are you getting sick regularly and is the sickness really bad? Do you travel? Do you experience crowds? Hang out with people regularly? Have contact with children who are not the best when it comes to hygiene practices? Do you enjoy the sunshine? Do you go out to eat in restaurants at all? Does anyone consume alcohol at all?

Any advice or experiences at all would be really great to hear! Thank you :)

I have been having difficulty with keeping my Phosphorus up. My doctor just "prescribed" drinking dark soda.

Hey everyone! How are you doing? Hope everything is going well =)

Two years ago I had a kidney transplant after spending some time on dialysis. Before the surgery, I used to weigh around 82kg, and now, after two years of regular exercise and doing martial arts a couple of days a week, I’m around 94kg.

I’m thinking about seeing a nutritionist and maybe focusing less on martial arts and more on the gym, but I’m a bit “afraid” that the kidney bulge in my belly could become much more noticeable if I lose weight and get leaner (basically, if I lose body fat).

Just to be clear, I feel great overall. I’m 25 years old and honestly feel super healthy — I can walk, run, etc. without any problems, and when I do Muay Thai I actually feel like my striking is pretty good. But it’s true that when I look at myself in the mirror, I do feel a bit overweight, and it’s something I’d like to change. The main issue is that I wouldn’t want the belly bulge to become too noticeable.

I was wondering if any of you could share your experiences, especially those of you who have lost weight after a kidney transplant. Did the belly bulge become much more noticeable?

Thanks a lot for reading me =)

After a year on dialysis I’m finally listed on both the deceased donor list and the paired exchange program living donor list. I’ve heard a lot of discrepancy about how long the wait time is in AZ for the paired exchange program so I wanted to see if anyone had any insight. For context both me and my donor are O+.

I am new to the Transplant list and am curious if people who are not on dialysis ever actively chose to get an a/v fistula in the event that they might need dialysis before their new kidney wakes up??

Hi everyone,

I’m currently about 10 days post kidney transplant and I’m going through a really stressful situation right now. My creatinine had been improving after surgery, but suddenly it went back up quite significantly over the last couple of days. The doctors repeated the blood tests to confirm it, and unfortunately the rise is real.

What’s confusing and scary to me is that:

I don’t have a fever

my ultrasounds have been normal

I’m still urinating normally

overall I don’t feel that sick, apart from pain around the drain area and exhaustion

But despite that, my transplant team believes something immunological is happening, and they are starting plasmapheresis once a day for 5 days beginning tomorrow.

I was already highly sensitized before transplant, so I know this increases the risk of antibody-mediated rejection, but emotionally this is really hard. I went through so much physically and mentally to get this transplant, and now I’m terrified of losing the kidney so soon after surgery.

I think what’s hardest is the uncertainty. My mind keeps jumping to the worst-case scenario.

Has anyone here gone through something similar?

Early rejection treated with plasmapheresis?

Sudden creatinine rise shortly after transplant?

Antibody-mediated rejection that improved afterward?

I would really appreciate hearing real experiences — both positive and honest ones — because right now I feel very alone and anxious.

Thank you.

Hello

If your 36 male and have a match 5/6 with a female mother who is 60 and she has passed all physical is able to donate..

How long should the kidney expect to last?

My research says 10-15 years..

Thanks

My father had undergone a Kidney transplant two years ago, the reason behind the same was diabetes and hypertension. Last month he tested, he Proteinuria has gone up to 3++ in urine and he has a constant BP or 140+ despite taking 8-9 medicine daily. His Hb1Ac is going up steadily as well and is at 7.1 (171 after food). Doctors mentioned they might need to control BP or go for a biopsy but he refused as he's irritated due to already taking lots of medicines and Biopsy is again frustrating.

What could be the potential causes of increasing in Proteinuria and Is it early signs of chronic rejection? What are possible remedies?

Has anyone suffered post kidney transplant thrombotic microangiapthy and recovered from it? What was the type of TMA and treatment given. And what creatinine is stabilized after treatment?

My donor coordinator from our transplant team called out of the blue yesterday and asked me to be on call Monday though Wednesday of next week to get labs done at the drop of a hat.

I think this is in reference to one of my donor volunteers making it through the process but she wouldn’t confirm for privacy reasons.

Curious to know if anyone has had an experience like this and if you know what it means.

My wife and I are cautiously optimistic, but refuse to get our hopes up for obvious reasons.

Hello folks,

I've been going through my workup to (hopefully) donate a kidney to my husband, who is currently sitting just on this side of needing to start dialysis. They are hoping to do the transplant preemptively to give him the best shot at good outcomes.

All has been well this far for me - normal BP, measured GFR of 97, split function 49/51, all other blood and urine has been unremarkable aside from a one-off ACR that was just a tad high, but the retest was excellent.

Abdominal CT scan was 2 weeks ago, and I just got a call from the nurse after the team reviewed the scan and my file as a whole.

She said the radiologist reports the appearance of "questionable beading" on the renal arteries on both kidneys. Nothing definitive, and there is the very real possibility of imaging artifacts, physical movement, etc... but they want me to do CT Angiography to rule out Fibromuscular Dysplasia (FDM) as that would disqualify me from donating...

The nurse also said that although they typically only allow one potential do or to be worked up at a time for a single recipient they recommend his backup person, if he has one, to start reaching out.

These 2 things combined, while I understand them wanting to be proactive, have me feeling worried about not being able to donate.

I know that worrying doesn't change things, but it still sucks that the phone call today wasn't just a green light.

Have any other donors had a similar need for followup imaging? How did things work out for you?

Thanks ❤️❤️

Back when I first got my CKD diagnosis, I was hospitalized for a month and received several transfusions. Fast forward 14 years and here I am, on the transplant list, with a few final cardiac tests to finish up before I gain active status. My blood work really made me sad. I knew the transfusions had complicated my ability to match, but now it looks like I only have a chance to match 25% of deceased donors. Does this sound like a very low number? SAG1 RESULT (CPRA) Value 75

Hello

Is the guidelines accurate for life span with kidney transplant living donor or deceased donor ?
Especially if starting at 36/37?

hi all I was admitted on the 14th of April for a kidney transplant. I was discharged on the 29th. but readmitted the next day. I was discharged again on the 11th of May. I was on hospital for nearly a month. I didn't realise how dependant I had become. it was nice to have trained professionals on hand to respond to the seemingly daily changes that were happening and nice to simply chat to them. since the latest discharge ive found ive really missed the nursing staff. I am.not at a local hospital and am unlikely to see any of the nurses again and that fills me with a great deal of sadness. I am short of breath when walking but doctors have done a variety of tests and seem to believe that I am simply now unfit due to my extended stay in hospital. the meds are changing daily and ive gone from having really high blood pressure to low blood pressure. the fluid intake I have ro reach is now 4 litres but I am finding im urinating just as much. I get this is a sign the new kidney is working well. they have stopped all but one of the blopd pressure medications I was on. the immune suppressants doage is also being lowered. has anyone else had similar issues. I am finding my mood is very changeable and I can be very iritable especially when I am shirt of breath. There is also the sadness that im not going to.see any of the nurses again yet I also long for home and getting back into a familiar routine. how was everyone else's experience.

Hello

My wife is having a transplant at 35, it is preemptive. EFGR is 25 and currently no symptoms.

I am asking if anyone else had a transplant at this age? If so what was your life like after ?

She loves her job, it’s office based.

She likes going on holiday, weekends away.

Likes to eat out, we go to restaurants 2/3 nights a week it’s something we both do.

How much will her life change?

Please join if you are diagnosed with one of these! Find it here.

I'm twelve years into my second transplant and six years on Belatacept after tacro caused me severe neutropenia. I've been having some gastrointestinal issues and now have a very high calprotectin level and read that Belatacept can cause intestinal inflammation and related GI issues, though there's not much info since it's a newer drug. Also recently diagnosed with severe exocrine pancreatic insufficiency (lack of digestive enzymes) even though I don't have any of the risk factors and my pancreas looks normal on imaging. Has anyone else experienced any of this? Thank you