Had a heart transplant when I was 6, I’m 26 this year. My mental health is taking its toll. I guess years of this has finally caught up on me and my medications make me feel shit.

What do you guys do when you feel shitty?

I’ve started my eval process for kidney transplant, and as expected they will be screening for drug use.

I was a marijuana user before but I have quit (about 3 months clean). I no longer make urine.

Is this drug screening a urine test or hair test?

Will they take me off the list if I show positive on a hair test even though I haven’t used in ~3 months?

Hello Everyone,

I got my kidney transplant on 03/05 and all my levels are good except for my creatinine which was at 1.80 on 04/22.

It was trending at 1.5-1.7 and my transplant team would like me to do another blood test tomorrow and if it still shows up high I will need to do a biopsy. I was wondering do I have to be admitted for a night? I do believe they put me to sleep while they do the biopsy but I don't remember if they admit you.

I got it done once when I was younger but I was already admitted into the hospital at that point when they performed it.

Will I be able to drive myself or do I have to have someone drive me?

Any information would be helpful, thank you!

I (23F) am donating a kidney to my uncle (58M) in June. He was diagnosed with lupus 9 years ago and has been on dialysis for the past few months. I honestly feel extremely lucky to have the opportunity to do this for him, but I have to admit that I am a little nervous. I have had major abdominal surgery before, so I'm not necessarily unfamiliar with what to expect. My biggest fear is I will be flying across the country for this surgery and will fly back home 2 weeks post-op. But I am curious to know, is there anything you had wish you'd known before donating?

EDIT: fixed some spelling errors

Apologies in advance for anyone I might offend but I'm young (22 m), overwhelmed and I don't feel like anyone wants to help me exist.

Oh where to begin…..

I suppose at the start. I was a senior in high school, only 17. I was asymptomatic until I was in end stage heart failure and on my literal death bed. Three months later I have a new heart.

All that being said, I never had much of a life plan in high school. I was fit, athletic even, but I had terrible grades and I was severely depressed.

Post-transplant, I kinda got pushed into college so I'm now in my fifth year and there seems to be no end in sight. On top of that I have a full time job (career in journalism) but it's been hard to manage on top of the medical history and school. Well all three combined I'm honestly a walking disaster.

I no longer have any drive to move forward, so I'm just dragging along. I also feel a bit enslaved as an American tied to employer healthcare. Finally, I can't choose between work and school since work pays for school and without school I really can't advance in the field.

What on am I supposed to do??? I feel stuck and no one is really helping me move forward. I'm starting to question why I was even given the option of a transplant when I’m clearly not going to be able to afford to take care of it in just a few years.

Feel free to comment or whatever, I no longer know how to communicate normally.

In anticipation of being the primary/secondary caregiver of a possible lung transplant recipient. I’m terrified of what’s to come but also ready to step up to the plate. Any thoughts?

Im due for a kidney transplant here in the next year ish (currently stage 4 kidney failure) - I already have a donor who is offering up a kidney for the exchange program so I can get moved up the list.

I have been putting this (post) off for a long time simply for the fact that I am scared. I don't want to read into this, I will absolutely freak myself out... but now, its getting closer to the time and I have to ask, what do you wish you knew before you had your transplant?

Edit: Thank you all so much for your answers! I honestly wasn't anticipating as many replies as this got so I apologize for slow replies.

Thank you for your support. It really helps me feel better about this whole situation

Today I had Labs, last week my creatinine was 1.02 with a EGFR of 109, doctors told me don’t ever pay attention to EGFR and only look at creatinine. Last week they took me off cellcept completely for low WBC, today labs was creatinine of 1.16 and Gfr of 95. All my labs are good but I’m concerned I’m about to hit 3 months post and that’s the biggest fluctuation I had so far.

Hi, After my initial cirrhosis diagnosis, I lost a great deal of weight in an effort to slow the progression. I’ve kept it off post surgery except for a “front butt” of skin and fat around my abdomen. Has anyone had liposuction or a tummy tuck after a liver transplant? If so, what was recovery like and is it safe to do?

hi all!

my dad is dealing with his second kidney failure, his first transplant had a 20 yr run and he's been back on peritoneal dialysis for years now. he's basically at a place where he would rather die than live like this and the transplant waitlist isn't looking hopeful.

what are the best ways to realistically find a donor? I am not healthy enough and he doesn't have the funds to spare.

thank you!

**edit**
he has been on the transplant list for years

This is what I’m trying to accomplish recently.. I was transplanted at 1.5 years old and I’m now 27. I’m about to hit my 26 year transplant anniversary this week but I’ve been in a slow decline with chronic rejection for over a decade. I was put on oxygen a little over a year ago and that’s when I decided to get evaluated for a second transplant.

I spent majority of last year being evaluated at Cleveland Clinic but was ultimately denied to be listed due to being high risk. My anatomy is complex due to my first transplant (extra complex because of it being done when I was a baby and now am an adult) and I have very high antibodies. I then had my records sent to UPMC in Pittsburgh and they denied me for evaluation. I’m now waiting to hear if Temple in Philadelphia will approve me for evaluation but I just don’t have a good feeling…

I know it’s not exactly common for someone to live 25+ years post lung transplant, so I bet I’m going to be the first or at least one of the first to receive a retransplant more than 25 years later- that is if I ever get listed with a center. Adding in the baby to adult factor makes me even more rare and I’m worried that since this hasn’t really been done before, no center will be willing to take the chance.

So, my question would be about period cramp medications. My girlfriend (23f) suffers from some serious period cramps and I was wondering if you guslys know of any medications she could present her doctor to ask if she can take it? She's taking Advagraf daily, any and all suggestions would be appreciated

I have developed extreme fear of sepsis. I'm not showing any symptoms. But all articles say compromised immune system might lead to sepsis.

I have read every article, watched YouTube video. I'm deathly afraid of catching it. And if I do, what about my kidney?

I can't focus on anything. And nothing helps. Not even " you've got a new chance at life to enjoy it".

I sometimes feel I can't breathe because of this fear.

If I have a compromise immune system, does it mean I'm doomed no matter what??

And every infection will turn into sepsis??

Hey idk if this is even allowed but I’m looking for possible recipients from same donor. I got my liver 1/9/22 in California if anyone near me possibly got another organ the same time I would love to connect

Happy Saturday everyone!

I am 10 months port heart transplant and many of the side effects of tacrolimus are have been surfacing for the last few months. I have poor kidney blood levels, I have anemia and am exhausted all the time as RBC count & hemoglobin & hemocrit are well below average. I also have joint pain everywhere especially my thumb bases, back, feet & shopulders and am experiencing neuropathy in my feet as well.

I am a small person 120 lbs and in my 50's. At 10 months I am taking 2.0 mg am and 1.5mg pm and 750 mg am/pm mycophenolate (cellcept). This keeps me in the high 8 range. My center tried me at 1.5 am/pm for tacro for 6 weeks but my level went down to 7.2 , so they brought me back up to the 2.0 am/ 1.5 pm. I do not take any prednisone at all and was lucky to come off very early in my recovery.

My team is trying to bring me as low as they can to preserve kidney function, but not cause rejection. At the higher doses I am in the high 8 range. That 1/2mg makes my level go up over a point.

I was wondering what dose others take and what the blood test result number and how long since your HT..

I am asking because the symptoms I experience when decreasing tacrolimus .5 mg per day makes a huge difference in the intensity if the symptoms I have. Each time I ask when can I go lower, the response is always "your not even a year yet, we'll see down the road". The quality of my life is not that good at this level.

Thank you all in advance. This community is so wonderful and there is no other resource like it I have found. I am happy to be here with all of you and I thank you for your shares they have helped me immensely.

Hello, I just wanted to posit a scenario.

If you had a clone to donate organs, would it be possible to cure knee osteoarthritis by transplanting/grafting healthy portions of bone where your diseased bone was? Alternatively is it conceivable in the future to be able to have a leg transplant performed given the aforementioned circumstances?

Im a liver donor the sergery was 4 weeks ago and now im back to smoking (i cant help it dont ask me to stop) does smoking effect my liver regeneration i know smoking may increase liver enzymes level

He’s taking so many meds now so it’s understandable. He could be very hateful to me before he got his transplant 2 weeks ago but now it’s so much worse. We don’t live together but I noticed he seems way more frantic, forgetful..he used to tell me something then be able to follow up but now it’s like his mind is racing and he forgets to tell me something and then when I follow up, he immediately has an attitude. If there’s any misunderstanding, he used to be able to see my POV and we could get better but now it’s just like anger in him, like he’s become so much more uncaring to me. Like his emotions are just at a 0 for me. There’s no more loving gestures. None of my gestures are returned or appreciated. I wish I knew if it was the anti-rejection meds, the steroids or the other 15 pills he’s taking but something is just changing his personality. I thought he would get better after the surgery. I thought he would be nicer. He’s been more reckless, when he talks to me he’s more “short”. Before he would seem happy and be happy to include me, etc but now it’s like the “love” has went away. I don’t understand.

Has any other partner dealt with this from there SO? A personality change? A pulling away? It could be completely unrelated to the transplant..idk but the timing of it was right after the surgery. Help?? We are both male, just want to paint the picture correctly

I am 3+ years post KT and I have sleep apnea which is controlled with my cpap machine. I have no problem falling asleep fast but I can’t stay asleep and after 4 or 5 hours I awake and can’t go back to sleep. I have tried everything with sleep aids and nothing works. My question is has anyone with a KT ever tried hemp gummy’s? If so do they work? And do they have a negative effect on the kidneys? Desperate for a solution.

I just wanted to open a new chat about how much of water we need to drink after kidney tx. I read a thread down where ppl say they drink 3-4, 2-3 liter a day and pee every 30m/1hr?? It would depend on your weight and activity level, of course. But I was so surprised by the huge amount you drink daily.

I am small but I try my best to drink 1.5 liter. Could’t reach 2liter, definitely.

I know hydration is the most important thing to keep my kidney healthy, but wouldn’t an excessive water intake burden your kidney as it has to work so hard?

I noticed that the Specific Gravity in urine test is well maintain around 1-1.01 if I drink my usual amount of water and the creatinine is stable. If it goes over 1.02, the creatinine goes up a little.

So, I am wondering what instruction you recieved from your team regarding the amount of water intake. Just drink as much as you can??

TIA.

Has anyone formed something called a “Buffalo hump” after being on prednisone for so long? I read it can be a side effect of being on steroids for long periods of time. Or I’m wondering if I truly have shit posture… let me know your thoughts!

Hi everyone !

My son is 3.4 years old and he is 8 months post liver transplant. (9 months May 5th) he has been having a constant increase in his EBV levels. His team wants to follow up with ENT and get repeat labs in a month. They also lowered his Tacro to .4 mls twice a day from .5 mls twice a day. His Tacro levels were at a 4.5.

I feel like as a parent maybe I’m not advocating and pushing for additional testing or treatment. Just want to make sure I’m not blindly following his team.

I know there are a lot of adults in here and protocols and treatments are more than likely different. However I’d still love to hear any advice or experience with EBV! Thanks !

I also want to add he had EBV in his system before transplant , it didn’t come from the donor. If that matters.

hi! I'm having issues with a transplant coordinator who originally said my adrenal insufficiency wasn't a problem and they've have many patients with ai who had successful transplants, then next time I spoke with her she tells me I'm disqualified because of the ai (which is treated with steroids, 6mg of prednisone a day, extra after extreme stress like surgery, would have a higher during surgery then for bit after, there is guidelines for this) I'm just super confused becaus3 in the guidelines for the transplant which is 8 pages long there is nothing about ai or steroids making me not legible. I have passed in every other regard, but now being told I can't due to this. she isn't a dr and I believe she is making this choice due to finding out I don't want children (my condition is genetic and has made my quality of life very poor id never want to risk putting a kid through this)

I will most likely contact the company that is in charge of all the transplant clinics and the staff about this, but wanted to see if yall had any advice on how to handle this best

I didn't even get to the stage of being tested, the transplant team hasn't even looked at all my dr reports before they made this decision. they just went off what she told them. she went from being extremly nice and encouraging to just being an asshole, claimed she had many patients with ai and it was perfectly fine ( did this when I questioned her familiarity with the conditon due to it sounding like she'd never even heard of it) then tells me I can't have it due to this condition like wtffff

if you have ai and have had a transplant please let me know!

Anyone take sodium bicarbonate AFTER kidney transplant? I’m almost 7 years post and my bicarb levels have always run on the low side but my transplant nephrologist asked me to start taking 650mg of sodium bicarbonate 2x/day. Just curious!

I am a kidney transplant recipient. I only have that one transplanted kidney functioning. My 2 native kidneys are in my body but are not functioning. They are expected to shrink a little(polycystic kidney disease).

My creatinine was 1.34 coming out of surgery. It stayed low/in that range, but after I was released from the hospital it drifted up to 1.90. It's back down a little to 1.74.

I'm about 5 weeks post kidney transplant. Did you see your creatinine level change? What is your normal now?

FYI- yes, I'm in contact with transplant coordinator about this. I've had a biopsy- no indication of any problems. They've given me no reason and just wait n see is what they've told me. So, I'm asking about others experiences to gain perspective and understanding.

Hello there. I am a second kidney transplant patient past 4th year anniversary. Everything is relatively fine except i have to pee almost after(half hour) when ever i drink water. And I know it is phsycially impossible. It is a problem when I was egsersizing by walking or in a car. So how do you manage this if you got the similar problem?

I hope i explained my self. English is not my main language even if I am pretty good with it. Thanks.

Hello guys, I am a kidney recipient.. Transplanted 2. 5years ago.. Actually my question is can we non alcoholic beer?

Yestersay I drank nearly 150ml of budwiser non alcoholic beer.. Will it effect my kidney or immune supprents.

Please share your knowledge on it.. Thank you...

Hello guys, I am a kidney recipient.. Transplanted 2. 5years ago.. Actually my question is can we non alcoholic beer?

Yestersay I drank nearly 150ml of budwiser non alcoholic beer.. Will it effect my kidney or immune supprents.

Please share your knowledge on it.. Thank you...

My living donor was accepted and is a match.

I should be celebrating this but I’m scared to death. For my donor, for myself, and about everything in general. The date is not even a date I would’ve picked, I have a fairly large work event coming up 11 days after the surgery date but I’m not the one who got to pick it. I make decent cash but I have no idea how I’m going to afford potential travel and hotel stay if needed and my credit has reached a point where it’s not going to be useful to me because of student loans. My family and extended family are not helpful in this regard, I’m the person who probably is the most well off of the bunch and that’s not saying a lot.

I originally turned down Medicare because I didn’t need to pick up an extra expense every month and my private insurance deductible was less than Part B. A transplant changes my idea on this, I think? What if I lose my current job and medical coverage and don’t have Medicare in place? It’s not something I anticipate but life throws things at you all the time you don’t anticipate.

I’m apprehensive about recovery. I’m apprehensive about catheters, and the stent. I’m on PD. What if the kidney is sleepy? Pretty sure you can’t do PD after a surgery like that if you need to, and I could do a chest cath again if I needed to but dear god that wasn’t fun.

I’m all kinds of discombobulated. 😐

I’m having a hard guide finding information on creatine levels/beta 2 micro-globulin directly after transplant? I know months out it’s a good predictor of graft survival, but is a few days to weeks too soon to tell?

My dad is 2 days out and besides a slight dip yesterday, they’ve now increased and I’m worried. Kidney ultrasound showed higher resistive indices but I know that can be normal for a new transplant.