r/transplant

Hi everyone,

I'm a long time lurker. My mother is officially on the transplant list for double lung. She was able to add 6 phone numbers to the list, including my own.

My mom is concerned that since she doesn't know what exact phone number the call will be coming from, that her phone (or all of our phones) could mark the phone call as spam and silence the ring. I have a Pixel 10 and the rest of my family has iPhones so we're aware that it can happen on our devices.

But I talked my mom out of buying a second cheap phone simply to use as a backup phone number. Was I wrong? Has anyone missed the call because of technology or can I tell my mom to relax and focus on her health?

Just trying to keep her stress free. I hope this isn't a stupid question.

On my 13 month anniversary from my transplant I will be having my incisional hernia repaired. It is bulging out in 4 places. This is an outpatient procedure and I’m hoping for smooth sailing. Any advice or good juju is welcome. I am looking forward to being fixed!!!

Hi everyone,

I had a kidney transplant with a 6/6 HLA match and wanted to hear about long-term experiences from others here.

How many years post-transplant are you now? Any rejection episodes or complications? How has your creatinine/kidney function been over time?

Would love to hear experiences from both high-match and low-match transplants. Thanks.

Has anyone had a CT where you swallowed contrast? The bowel resection I had during my liver transplant surgery is causing issues and apparently this is how they investigate. Oral contrast to see how it responds with something ingested.

Last week I had what I feel is my first dry run. Got a call at 9am saying there may be a viable liver and we will let you know in 12-24 hours. They wanted as to be ready to drive to the hospital when they call back (4 hr drive for us). 1st, obviously a lot of adrenaline and try to tie up loose ends at work for both my wife an I, as well as get things ready. 11 hours later they call and say its no viable.

Do you all consider this a dry run? Or would that more invovle going to the hospital first and then calling it off?

My uncle, a physician, has CKD. He is 71. I am 54. I appear to be the only person in my family who is stepping up to be a living donor. I am a parent, a competitive distance runner, and I selfishly care about my health and athletic performance. I don’t want to do this but I do because I love my uncle. His daughter is 41 and hopes to have kids one day so doesn’t want to be a donor. My uncle is super knowledgeable as a physician so if I decide while going through screening that I don’t want to go forward, I feel like he will find out why—I don’t want to do it-so I really feel that I have to do this to save his life, and no one else is stepping up.

I was born with a congenital heart defect transposition of the great arteries. I had open heart surgery at 18 months. Then I lived a fairly healthy life. I got pregnant multiple times I have one living daughter and have given birth twice. I went to school for nursing. I have had continuous multiple infections. Went into heart failure. Waited on the list for over a year and received my heart transplant in December of 2019 and then in June of 22 I got a kidney transplant. Which my husband donated but he was not a match so we did a paired kidney exchange. It was an eight-person chain.

I have been having for many many months years even where my body will feel okay and then I have a flair of sorts where my body hurts everywhere all of my joints are aching I'm exhausted fatigued dizzy sometimes have a sore throat and I'll low grade fever. And then other times I can be okay for like a week or two. I suffer from chronic fatigue. I work as a nurse for a little bit post kidney transplant and I just picked everything up and I was so fatigued that I could not handle it. I have been out of work. I am struggling with the cyclicative issues I seem to have. So what I mean is since my heart transplant I have not really gotten much stamina back. I am better than I was pre-transplant in some aspects and other aspects about the same if not worse. I would not trade it for the world because I wouldn't be here. But I have these symptoms and they just really don't know why I'm having these issues. They said sometimes just people don't farewell on the meds. It really does seem like a cycle. I also have a flare of sorts with excessive stress. If I have lack of sleep. If I pick up any kind of cold or virus and if I pick anything up that lingers for weeks to maybe 2 months.

I have also had bouts of dizziness that is from orthostatic and then other times the diseasiness is not from a blood pressure change at all. I also get frequent headaches. When I feel stable for good for lack of a better term I feel that way. When I feel poorly it's overwhelming to me and feels a like it triggers me going back into heart failure and b I feel like I'm crazy sometimes.

I'm also struggling mentally. I have anxiety that is managed with meds and meditation yet it has been flared up recently.

Anybody else have kind of a story like this there's more to it but that's the gist

I have really bad anxiety about ever having to go back to the hospital. I had my liver transplant last October, then a rejection episode in November that lasted a full month, followed by an infection that needed a chest tube for another month. Being stuck there that long really messed with my head! I ran out of stuff to do and got so sick of the hospital food.

Now every time I get a random stomach ache from something I ate or just feel a little weird, my brain immediately jumps to “is this rejection?” I just wish there was some kind of device that could monitor my liver enzymes or something else in real time and give me actual reassurance instead of waiting for weekly or monthly blood draws.

Anyone else deal with this anxiety?

I’m 3 months post-liver transplant and doing pretty well overall. I am experiencing painful muscle stiffness all over so I was curious how others have handled this during their recovery process.

I do light exercise like small walks and I’m back to work. My muscles perpetually feel sore though. Not just my abdomen, but my arms and shoulder and hips. Nothing seems to alleviate it. I stretch, I’m active but slow, and I’ve gotten two massages and I use a heating pad, but nothing seems to stop my muscles from being tensed up like I’m in danger.

It’s like my muscles never relaxed after the transplant. Like my body is constantly poised as if I’m about to be in danger.

I’ve tried little somatic exercises to try to get my body to relax, but still, every day my muscles feel stiff and tight. Maybe this will go away as my body heals, but I was curious what can be done to help alleviate the pain and help my muscles during this time. It would be nice to not feel so sore.

This is the HLA.

And these are my DSA MFI results against my sister, very high.

I am on dialysis for 21 years and my sister wanted to give me one of her kidney's. I had two previous transplants. My first transplant got removed after 2 weeks and my second transplant after 3 days. I've never thought it can do such a harm. Both were cadaver transplants. Me and my sister's crossmatch was negative it made me very happy but after this came and we are dissapointed.

We should let it go?

TL;DR: where should I go to get my liver transplant??

Trying to be vague here, so please bear with me. I am in need of a liver transplant and I am considering between two transplant centers where I would like to list as primary. I’ve been treated at both facilities for different needs related to my liver disease, and both centers agree that I need and would likely qualify for a transplant within the next couple of months.

On paper, FAcility A seems like the obvious choice, but I have received such poor care thus far at the hospital level (mostly related to management/administration decisions, poor communication, gaslighting, not listening to patient perspective - but the staff has been wonderful!) and I am scared to go back there for such a significant procedure. I have been receiving treatment at Facility A for the past couple of months and have had multiple failed procedures and ended up with a severe infection after my last visit.

I requested to be discharged from Facility A and transferred to Facility B, where they have basically cleaned up everything Facility A could not do in a manner of three days. I am trying to keep in mind that the hospital is separate from the transplant center, and both transplant facilities have excellent reputation. Here is my high-level pros and cons list – where would you go?

Facility A Pros: Top 10 facility Excellent reputation for care 10 minutes from home Shorter wait time for deceased donor transplant (statistically) Closer to my network of family and friends Would go here for follow up care/emergencies regardless Cons: Poor management in the hospital section Hospital care has been poor, including multiple failed procedures, overdosing for pain medication management, and caused very painful infection

Facility B Pros: Top 20 facility 9 hours from home Will require relocating for a minimum of three months Excellent care at the hospital level Surgeon skilled in a procedure Facility A cannot do Cons: 9 hours from home Longer wait time for traditional deceased donor transplant OR would require finding a living donor Insurance will be difficult to navigate Less of a community available to me

Title says it all. I’m guessing the answer is a big fat negative! Seems anything that would help us sleep exacerbates HE.

I did get called in but ended being a dry run ,wondering how long tell I get the next call do I go back to the back of the linen and how long tell the second call came in?

Anyone here ever feel a bit of regret about their transplant? I know, its controversial at best. But with the current state of affairs it just feels awful to be so vulnerable. The job market by me is horrendous, gas is almost $5 a gallon, the highest I've ever seen it in my life, and I have been personally dealing with family/friend drama that give me a bit of extra stress. Most days I am grateful for my extra time, and the selfless act of my donor but some days it just feel like all the cards are stacked against me. I try to stay optimistic in spite of all this, it can definitely be a challenge. Any tips of overcoming this? I talked to a therapist a while ago with the same concerns but it ends up being a loop. I wish there were more programs and such for people dealing with this sort of stuff. I feel like if I never got sick or never bothered getting check out, I'd be better off one way or another. I'm 1y 4m post double lung. Sorry for the rant, just tired of feeling like every day is a new sort of fight.

Not to bring the mood down here or anything but I've been thinking a lot about this, as someone that's barely in my mid 20s and has had a kidney transplant for almost 6 years now, I just feel like I got so much to live for and I really don't wanna get taken out prematurely by some selfish fucking manchild crying about being on a boat. It truly frustrates me that we didn't come together and quarantine the boat and airlift them food and whatever like it's 1950s Berlin.

Does anyone here know if we're more likely to catch it? Maybe instead of it being infectious for a day and only intimately we might be exposed for a week and just through coughs or through the air or something? Has anyone with a transplant ever had or survived any type of Hantavirus, especially the Andes strain? I can't find any really reliable info online and I don't particularily trust my Dr's opinions anymore since they lied to me and said covid was gonna be over in a few months and won't spread out of China or the region and look what happened.

I am very grateful to have had a liver transplant in 2022 to cure my Carolis Disease. Now that I’m on the mend I decided it was time to continue college as I had to leave in 2017 due to this disease. In 2017 I was working with Voc Rehab to help pay for my schooling and as I went back today to meet with them and hopefully get funding again, I was told that my career goals of becoming a nurse are no longer “appropriate” due to me being immune compromised.

This is very frustrating to me because I’ve met transplant nurses who have had transplants themselves, I’ve met doctors and surgeons that have had transplants and I don’t like that a singular individual who’s not a medical professional, and who knows next to nothing about my condition is telling me what I can and can’t do with my future.

She also assumed that I wouldn’t be able to work full time in the future and that I wouldn’t be able to go school full time now and she assumed these things because she said that SHE has an autoimmune disease and she can’t do those things.

And? I’m not you! Also, it’s not an autoimmune disease!

I’m so irritated. I understand my situation. I understand the risks vs the reward. I can’t live in a bubble and my doctors haven’t asked me to. They want me to live my life and I don’t want to do that behind a desk.