Hello everyone.

I'll will try to make this fast. My cousin (45m) was born with heart problems. He had his first open heart surgery at the age of 5. In 2008, he had a heart transplant. Two years ago, a doctor switched his medicine and it caused problems. His heart stopped working well and his kidneys then started to fail. At the beginning of this year, his heart was working at "33%" and he later started dialysis. They told him there was nothing else they could do for him because his heart was weak and his kidneys were bad (family members are willing to give him their kidneys). The doctor said that there is no point and they gave him 2 weeks to 6 months to live. (this is in Canada).

Now, I see that others are getting double transplants of a heart and kidney because end stage heart failure causes issues with kidneys. Without talking to a doctor, I can't help but wonder why he wouldn't be eligible (He is very clean living...except the cocktail of meds a transplant patient takes.)

Has anyone been in a similar situation? Especially, anyone in Canada? Wouldn't doctors pursue this treatment or try to refer you if it was available? Or is this something you have to fight for?

I am a bit worried/stressed at the moment.

I am just over 3 years post kidney transplant and since July this year my creatinine has increase, 2 weeks ago it decreased again so today they booked me in for an Ultrasound and some more bloods (usually I get bloods done once a quarter)

The Ultrasound came back good, in terms of how it looked and also the blood flow etc.

But I have just got my bloods back and I have increased again, the space of 2 weeks I am up +22

All I take medication wise is Tac, some Vit-D and a blood pressure med (Ramipril).

The doctor doesn't think its rejection because I have no symptoms and I was a 1:1:1 match with my brother and doesn't think its IgA on the new kidney as there is no protein leakage.

All he suggested was either a specific virus, or the Tac is actually doing it harm.

Has anyone experienced Tac being bad?

I think I will have a biopsy now, though there is a 4 week wait, which makes me nervous if my creatinine increased by 22 in just 2.

Very anxious, very stressed.

I got my kidney transplant 8 years ago on this day. My ex gf and I had an amicable separation about 9 months before I was diagnosed with ESRD. She came out nowhere to give me a kidney because we are a perfect blood and tissue match. The surgery was successful and I haven't had any issues.

I tell everyone this to hopefully give some hope because you never know where help will come from.

My ex and I are much better as friends and we both found the ones who we were meant to be with.

I’m trying to find somewhere that does it because I’m not going to be able to go to the private lab I’m using anymore.

Call number one, my previous post here has details of but in brief, he was called in in the afternoon, took until 3am to dlextract donor organ and it was found unviable.

This time the donor organ had been tested before he even got called, it's viable, only barrier (I think) could be pre op checks but they have asked him to be at the hospital within 2 hours of the call (40 mins from now!). He passed his pre ops very recently from the first call so I think the only thing that could have changed is if he is brewing a virus or infection or something. Anyway, all being well, we are looking at surgery late afternoon (am in the UK, it's quarter past 4 right now).

I am on the road (partner driving, don't worry) and about 2 hours away. Brothers are closer and heading to the hospital also. Stepmum is driving him in.

Thank god for the first failed call, I am more excited and hopeful than anxious like I was last time, having met the team and seen the process on the dummy run. Wish us all luck!

Update: The team are saying they are confident it will go ahead unless anything very unexpected shows up on his blood tests or chest x-ray, they are going to proceed at 7am as there is a transplant op happening right now and they want to reduce surgeon fatigue risk. They said the liver is as near to perfect as it's possible to be and won't be split, also that his baseline health is good enough they expect to have him up and walking the day after surgery. Obviously this is as long as the surgery has no complications or extended surgical time, sometimes they keep people sedated for a few days if the surgery was less smooth sailing. Sounds like the position couldn't be better right now. There were no ward spaces so they put a bed in a clinic room for him. He was anxious and asked if one of us (his three children) could stay the night so I volunteered as tribute. As he is sleeping in a clinic room rather than on a ward where relatives could disturb the sleep of other patients she agreed to let me stay the night. Nowhere to lay down so I will just stay up til they take him to surgery at 7am then I can go home (or to his place at least, home is too far away from the hospital for me until he is out of surgery and stable) and sleep while he is in surgery. I did the same when he was here overnight on the failed call in as by the time they decided the liver wasn't viable it was 3am and we had to wait until morning for someone to wake up and pick us up. It wasn't too bad, though by 6am I was starting to feel it. Win win for me, I get to be there for Dad and then crash out instead of worrying for the full 8 to 12 hours of his surgery!

Now Dad is sleeping I am low-key wondering if I can go find the hospital chapel and do some karaoke on Smule if there's no one there using it and it's not near any wards without getting thrown out as a weirdo, I sing to relax and the waiting is making me nervous (not desperately anxious, just how you would expect before someone you love is going to have major surgery!)

Hi. Sooo I’m donating my kidney to my older brother (9 years older than me) we both are heavy smokers-weed. but I’m highly concerned if I’ll end up being awake during surgery… I did stop smoking yesterday (Thursday) because we barely heard the news on Wednesday.. and surgery is on next Tuesday… (in 5days, but without smoking) should I be worried.. will I be fine? This is my first big surgery and I never been under soo I’m scared..

I called my doctor yesterday to ask about some really intense itching I had all over my body. It was so bad I have barely been able to sleep. Labs showed wacky high enzymes. He decided to crank up my prednisone to 40mg, Cellcept to 1000mg/twice a day and Tacro to 4mg/twice a day. I am going to lose my mind if my hair starts falling out again but at least I’ll have enough aggressive steroid energy to clean this house. Happy Friday everyone!

Has anyone received the RSV vaccine? I don’t meet the recommended criteria, but I had a bad bout of it back in March and I wanted to get the vaccine to decrease my chances of getting it again.

Has anyone who also doesn’t meet the criteria have any luck getting the vaccine?

I had my lowest tacro today? Anybody had a low tacro? Could my cold be the cause? Let me know! :)

Hi all -

I was lucky enough to be transplanted 3 weeks ago with a live donar and all is well, my creatine is between 110-120.

However my egfr is only 45, this worries me as I feel like that's super low and my kidney won't last long/many years. I'm 47.

What do you think?

Hello has there been anybody here who has had chronic rejection in their transplanted organ and how has it been going? Has the process been alright, do you have the same organ or did you need a new one?

Thanks!

Hi everyone I been going through major health anxiety. As u check my old posts I use to be pretty bad on here. I calmed down the past few months n stopped worrying. However.. I took my fiancée to haunted houses here in Houston a few days ago and I caught a cold, she came down with it too. Our wedding is in 4 days. And our honeymoon is in about 8 days. I’m so worried this cold will mess with my kidney or make my lab results bounce bad and I will have a serious anxiety episode. Has anyone had colds n labs was ok? Or just temporary fluctuation. You don’t think a cold will cause any serious long term complications? Last labs 2 weeks ago. Creatinine 1.09 EGFR 101. *** update Results back Creatinine 1.10 EGFR 100. Everything is ok. A few numbers wonky but the creatinine is all I’m concerned about here.

Does anyone have any experiences with getting and maintaining a biliary tube? Im on the transplant list but my MELD score is 22 and the two stents I have right now aren't reaching the little areas where a biliary tube might help. The areas that the stents can't reach are probably the cause as to why my bilirubin hasn't dropped a lot since being discharged.

I'm nervous that getting a tube will make me wait even longer for a transplant but also it can potentially help me not be hospitalized every other week for becoming septic lol. But my doctor also mentioned my 22 score kind of puts me in a limbo with a cadaver transplant and how long to wait for one.

I don't know this is kind of a rant as well. Im just TIRED of all this, I want to go back to having a normal life where I don't have to worry about not being able to work and paying my bills on time and not feeling like a burden..ugh

HELP!!!!!! The Tac is thinning my hair ☹️. I don’t wanna be bald😭😭😭😭😭😭

Vent: I feel like I spend half my free time calling my insurance companies trying to get them to communicate. I have Medicare and Blue Cross and they both act like they’ve never worked together before, nor had a kidney transplant patient in their 30s.

I spent three hours on the phone going back and forth today. Earlier this month it was 5 hours for multiple days.

They don’t send the right explanation of benefits, no one will pay until they get the EOBs from the other company, the hospital wants to be paid before both insurances have had a change to process the claims.

I feel like I’m going insane. That is all.

Worried won’t be strong enough as can’t eat at the moment

Sorry for the panic, but I'm really worried—my father is about to have a kidney transplant, and I just want to believe it will be successful. With all the tests they do, there shouldn’t be any chance of rejection, right? It feels like we’ve crossed every hurdle!

Hello! Wanted to ask if anyone here got Tocilizumab SC injection? My doctor told me that I might need those injections once a week. I suppose that’s because anti-HLA testing has shown that I have two donor-specific alloantibodies against my father's kidney.

I’m heart broken because it wasn’t supposed to be this way. I work in a call center for healthcare facility and it’s killing me. It’s so toxic and hard on my mental/physical health. My manager knows about my transplant and blatantly does not give a shit. My benefits are the only thing that has kept me here but I can’t keep doing it. I don’t have family to support me through the transition, I wouldn’t be able to afford COBRA, and honestly the marketplace plans are a mess. I feel like I’m doing it all alone and it’s so hard. Most people don’t understand but I know you guys get it. I just wanted more for my life and I feel so weighed down by this need for insurance and fear of what would happen if I couldn’t get my meds

Hello everyone! I’m 21 and got my liver transplant about 20 years ago. My transplant team are from a children’s hospital and don’t have a TON of advice for me regarding drinking and my transplant. I don’t really drink a lot in general but just having turned 21, sometimes it’s nice to go out with friends and have a drink or two. Anyone have any advice?

Edit: my team says I can have a drink or two once in awhile but just don’t go crazy. I just wanted to see what others experiences were like.

Iama kidney recipient.. Gastroenterology doctor prescribed me vitamin Adek and zinc tbalet... But I don't why.. I recently used antibiotics for H pylori with ulcer.. Do anybody know anything about these vitamins.

Hello everyone! 👋🏼

As of 10/28/24 I am active on the liver transplant list! I'm excited but also going to be nervous with every call that comes through my phone😂

I've been stalking this reddit for a week or two and decided to make a post especially after getting my "letter". It wasn't like a mailed letter but an official letter message through my hospital's patient portal.

Just some info about me: I am a 28yr old female that has been dealing with Primary Sclerosing Cholangitis (PSC) and a lot of recent hospitalizations because of it unfortunately.

I'd love to hear people's transplant experiences, tips, tricks, etc. lol

I am a kidney transplant doctor. I see patients before, during, immediately after, and years after the transplant, and sometimes, I feel things that are important for my patients are tossed aside for things that my patients also feel are important but are not able to tell me or outright don't want to, either because they are tired of seeing doctors or just the way things are after seeing so many doctors for the same thing.

So, I wanted to ask you about it in an attempt to learn and be better. What are some things that you feel we, physicians, brush aside or don't understand from your side of things?

I developed osteoarthritis in my hands while on hemo. I didn't really feel it, the end of my fingers just got bumpy ugh. But now at almost 6 months post transplant. I have it in my knee and it's very painful. Has this happened to anyone else? This started at 39. Anyone else relatively young when it happend? Is it connected to the kidney disease in any way? My parathyroid hormone was out of whack , but not wildly so. Thanks in advance for your input.

If we “feel different” after the transplant. Of course we do, we just went through organ failure and a traumatic surgery and a cocktail of medications. What they’re really asking is if our personality changed because of having a different person’s organ in us. I just answered this question when presenting to high schoolers on behalf of donate life. Now I’m arguing with someone on this sub who is not connected to organ donation personally but is trying to prove that cellular memory is relevant to organ donation.

Am I the only person who feels offended and exhausted by this line of thinking? I had my first transplant at age 4 so I’ve been hearing it my whole life. There are recipients out there who believe it, and I’m not going to question their experience because I’m not them. But I hear this misinformation mainly from nosy non-recipients and in fictional media.

EDIT: I really appreciate hearing everyone’s perspective and how you respond to this. I don’t usually get worked up about it, it’s just come up a weird amount in the past week and I’m tired. I’m 18 months out and I just had an emergency appendectomy on Friday. It was fine but kind of triggering and it’s been a rough weekend. Thanks for validating my feelings, and I promise I won’t engage anymore while I’m in this headspace lol.