r/transplant

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.

I just had my kidney transplant last week. So far so good but just wondering if anyone had experienced feeling having fever but do not actually have a temperature? I experience this specially during sleep, I wake up feeling very hot in the core but I feel cold on the skin. Temps were normal. And if I try to go up and about it goes away.

I have spoken to my transplant team about this but they have not given me a direct answer, just to keep watching.

If any has had this symptom appear while waiting for a heart?

So, the last few weeks I've been having trouble sleeping. I notified the Heart Failure Clinic at Maine Med (day-to-day heart management), and they had me come in for a check, and of course, my heart isn't doing so well. I have been waking up 2 to 3 times a night, panting and soaked in a cold sweat. They told me my heart is getting worse, and this is an indication of congestive heart failure advancing. I have a congenital heart defect called WPW. I'm 100% paced. LVAD is out of the question. My legs and feet don't swell from retaining water, but I am carrying it in my midsection like a pool floatie. They decided today that they are going to put me on a water pill, Lasix, I believe. At that point, I wasn't really comprehending, but yes Lasix my sister said. The Mass General Heart Transplant Team is trying to get me all my last appointments done, a CT scan of my arteries, an Ultrasound, and some fancy CT that can only be done at the hospital, then they will have a better understanding of where to place me on the list. It was expected I would be Status 6 or 5, but that is changing now.

Frequent traveller here. I am 1.5 years kidney transplant patient, with post-tranplant diabetes, planning a trip to Cusco, Peru in July. Never been to any plateau area. Has anymore ever been there? My doctor said I am okay to go, even normal people still have altitude sickness. I have no idea how I gonna feel and worried if my kidney might stop working. Any suggestion?

18 M, I’m asking this because I did a sleep study a few weeks ago and got the results back my result I have mild sleep apnea which my breathing stops at night but I really don’t gasp for air at night but with my heart history I’m gonna need to cpap which is not fun but hopefully I won’t need it I am looking at losing at least 30 pounds in 3-4 months which I’m doing so. But did anyone have the same problem or something similar?

Hi everyone, has anyone who has taken tacrolimus ever switched to a different medication? If so, what did you switch to? I’m having issues with tremors, my transplant team lowered my dosage some time last year because of the same issue(I went from 7mg morning and night to 5.5mg/5mg) and that seemed to help, but they adjusted my dose recently because my tacro levels weren’t in a therapeutic range, so now I’m taking 6mg twice a day. I had bad tremors when it was 5.5/5 but now they’re much worse. I’m just sick of being so shaky, something as simple as putting on chapstick is difficult for me.

Recipient, got my(25m) new kidney on 12/06/22 (mm/dd/yy) from my mom. This is more of a rant than anything else. It’s kind of bizarre, but I swear it feels like I am only getting more and more frustrated as time goes on. I’m more upset about the entire situation than I even was on dialysis. For reference, my kidneys failed ~Halloween 2021.

When I was on dialysis I remained relatively jovial on account of having tunnel vision towards my transplant. Once I had the transplant I picked up a gambling addiction. Long story, don’t want to talk about it. Stopped gambling July of last year, and now it’s like it’s all hitting me at once.

The medication, the borderline hypochondria, the constant worrying about diet, exercise, etc. I gambled to escape my thoughts and worries, and now I have a steady job, steady income, everything should be peaceful. But I feel worse mentally than ever.

The only person that I can even talk to about this is my mom, and she’ll hear me out but at a certain point she’ll always say as nicely as possible that I need to get over it. I can’t really say anything because she gave me the kidney. I agree with her but I just can’t.

I can’t tell you how much I used to say to other people something along the lines of “if I’d been born 100+ years ago I would have died at 20!” With the implication that I was grateful for everything. And don’t get me wrong, I know I should be. But I don’t feel grateful. I just feel angry. I don’t earnestly wonder “why me?”, like I get that shit happens, but I am incredibly annoyed that it is me.

Anyway. Just wondering if anyone else can relate today? I’m sure all of us have had negative feelings towards this, but I guess I’m wondering if anyone else has felt worse years later like me.

Hi all,

I'm 36 and working on getting listed at my hepatologist's recommendation at MGH due to my high meld.

I was diagnosed with ALD/Cirrhosis last March and have been sober since then. I've seen recovery in pretty much everything except platelets, INR and albumin. My albumin is improving thanks to an adjusted diet, but I digress.

Currently my MELD is 24, which I normally see people on /r/cirrhosis and doctors talking about how that is very sick and I get that on paper but it doesn't match my lived experience.

Has anyone who has been transplanted also been living a relatively normal life at a high MELD before their transplant? How was it afterwards?

For me I'm not worried about the procedure or recovery; I'm very dedicated to living and will be doing everything I can to maximize my new liver.

What I AM worried about is trading the illness I know for the one I don't that could make my life worse.

I'm also a bit miffed that I feel like I'm juuuuuuuuuuust barely going to miss the opportunity to benefit from breakthroughs that are currently in human trials.

My first transplant was in 2002 and back then I found most people understanding & considerate to me being immune compromised.

Today at my very nice gym I was in a treadmill class and the “wipes” to clean the equipment after use nearest to the class was empty so I darted over to a nearby wipe dispenser and grabbed 10 wipes one for each participant & handed them out to my classmates.

Only 1 old lady refused a wipe & said to me “I don’t need to wipe my machine bc I don’t have cooties”…

Then she stood there waiting for her friend who took a wipe & cleaned her machine; after they walked off.

Was she being political? It’s not like I asked her to mask; I just don’t get refusing to clean after yourself especially when 9 of 10 were doing it.

i mean anyone getting a transplant is great but i really think theres so many more men even that i see on this reddit. getting livers even into their 60s and i see so many females have that get cirrhosis at 30 and are just never really high enough for them.

im currently at battle with my mothers transplant team as they have deactivated her.

she has jumped through every obstacle for them, been sober for multiple years, always got her exams, but because shes a post menopausal women and is too frail then she doesnt get one. shes even small. enough that they could do a split liver and are still fighting this.

shit just seems so unfair

People who’ve had a kidney transplant what are your creatinine levels now, and how long post-transplant are you? Especially interested in long-term stable numbers and experiences with fluctuations.

I have been post-transplant for over 20 years. I was sick as a baby. I struggled throughout my whole life with nightmares, crying spells, anger issues, emotional dysregulation, weird flashbacks where I feel like something bad is happening to me, severe anxiety, and blatant depression. I get triggered if there's a difference in any blood levels, if there's a mention of a change in anything medical; overall, hypervigilant, tense all over the body.

I struggle with a sense that I was worth the sacrifices made, such as taking part of my father's liver and then my uncle's, which saved my life. Do you ever feel like no matter how much help you get? You can't be helped?

This is all while people tell you to stay grateful. When people talk about my transplants, I get extremely defensive and have immediate negative alterations in mood and cognition. I've been in therapy for the last 5 years, and even my therapists admit it's a slow progression to learning how to cope.

I often have passive SI and thoughts. I want to know if anyone else struggles like this?

I wake up with thoughts like I can't believe I survived or I'll look at my body and start hyperventilating and saying, "I can't believe they did that to me," over and over again, or "What did I do to deserve all that pain?"

I had my transplants at 6 months and 2 and 1/2 years old, with spinal taps and biopsies until I was 4 years old.

The body remembers what I don't think I can, or I remember very little.

My mother is having her kidney transplant today from a live donor. After 1 year of hardships like infection , she is having surgery today. Hope everything goes well.

Have you been happy with switching to belatacept how was the transition?

im like to start this post with stating that im clearly not asking for medical advise. more so to compare stories. im 20 years out from my heart transplant, for the first about 7 years i was taking Bactrim. after not seeing any effects +/- from it i had a conversation with my medical team and we decided that it was okay for me to stop it. things have been all fine and dandy until last couple of years i suffered a leg injury that left me wheelchair bound. the last few months i suffered from 3-4 UTIs. That had to be treated with oral AND IV antibiotics to got me thinking maybe i should reconsider going back on the Bactrim to hopefully help prevent any future infections, nothing is a guarantee but im sure it can't hurt right? im waiting to hear back from my cardiologist.

anyone have similar experiences? or have stopped taking Bactrim only to need it a few years later?