RANT: I had a heart tx when I was 3 years old. Idk when I got HPV Virus but I Never had any issues my entire life with my transplanted heart. 27 years. Went into heart failure and had to get another transplant in 2022. I'm 31 now.

It's been 2 years and my pap smear hasn't been normal since 2022 due to low immune system. I've had like 3 culposcopies to wipe out any cancerous cells. That alone is not fun.

Now...I've got to get BUTT SURGERY to burn off possible cancerous tissue..both docs are saying it could be from HPV Virus.

Oh and by the way, I already had lymphoma cancer in 2014 in my colon. PTLD. thank god for good Dr's. I'm 10 years in remission. Whatever.

What's the point.

Hi, I got covid, then stroke then end stage heart failure diagnosis, two years ago. I'm 50 , ebike, swim daily, florida. Any feedback on how long after heart transplant surgery I can work a few hours a day on laptop or at home desk. I'm an independent contractor so no medical leave and if I don't work regularly then the workflow i have built up will go to others and it will take me a couple years to get my income up. I'd rather not drop from 50k avg to 25k as it would not be enough to afford my condo payment/hoa and insurance, medical. I did move 3 miles from transplant center and have paid off all other debt to put myself in as low of stressful situation as possible. I just review insurance inpections for underwriting so no zoom, face to face. Could work half hour a few times a day and maintain.

My biggest fear is that I won't pass the mental health because I do have a history. If I fail it, how do they tell the recipient? Do they say: hey sorry she's too mentally ill to give it or just say we aren't a good match?

I'm wanting to do this but if it isn't successful for a match for mental or physical I don't want it to seem like it's my fault. Like I let them down.

TLDR: My husband has congestive heart failure and a LVAD. Infection found in September and he has been hospitalized since then on the transplant list. Infection has gotten worse and his status increased.

My husband has been in the hospital 11 weeks now (IIRC), and last Wednesday he started having symptoms of his infection on his LVAD driveline getting worse despite daily antibiotic injections. The thought is the infection has become resistant to the antibiotics and so a PICC line was put in so he has 24/7 antibiotics now. Additionally the transplant team increased his status from 2e to 1e so he’s as high as he can get but still nothing. I imagine him having O+ blood type along with whatever else isn’t helping things. This is getting really hard for both of us. I’m trying to keep myself together and the house together (plus trying to help our son, 18, handle it), and he’s simply trying to deal with virtually being a prisoner in the hospital. Plus it’s so fucking scary that the infection is advancing. All the What Ifs and everything.

I guess I’m posting to vent and hope you all will understand since my friends and family are supportive but they don’t quite get it. Any words of encouragement or something would be so appreciated. I’m really scared.

As the title says, i’ve been on Tacrolimus for over 4 years now. Recently, i’ve started experiencing hair loss on the top of my head, and apparently it’s one of the side effects. It’s not patchy, just the entire back of the top of my head that’s suffering from hair loss / thinning. Previously I had never suffered from hair loss.

But, all that’s changed recently is that i’ve started using Advagraf instead of Prograft a few months ago. Could that be causing it? Isn’t it almost the same?

If so, let me know. and if there are any solutions or things I should do, also please let me know.

Edit: By the way, i am 19 years old and male.

Gratitude is an attitude. Everyday is a gift and an opportunity to be kind.

13 years ago I was facing my last Christmas. My mom had died 1yr after diagnosis of pulmonary fibrosis. I was diagnosed at 53 with the same disease. I was dual listed at 2 centers, University of Minnesota and Loyola in Chicago. December 2, 2011 I was working from home as a Sr Life Underwriter for a life insurance company. I received a call from Loyola saying they had a pair of lungs for me. Yes, it was a surreal moment.

I had arranged a charter flight to Chicago if I needed it months before. My health insurer (Aetna) had a travel and lodging allowance of 10k which covered the flight. I called the airline (Aerocare medical transport) at 2pm when I got off the phone with Loyola. By 5pm we were in the air!

In the pre-op waiting room were 3 other people who were getting organs from the same donor. The woman next to me got the heart.

9 hours later, I had new lungs. What a gift. It is really impossible to articulate the enormous selfless act that donor and their family made.

It has not been smooth sailing for 13 years. I have had rejection 3 times and a few other health concerns. This is where the gratitude comes in. Nothing in life is guaranteed. Everyday little things are now viewed like precious jewels.

So many people to thank. My family, both immediate and extended. My care team at The University of Minnesota Medical Center and their lung transplant program. And, last but not least, all of you. Your stories provide hope to people on this transplant journey. Heartfelt thanks.

I (27F) got diagnosed in 2019 with CKD. They couldn’t find the reasoning behind it. They said possible FSGS but most likely isn’t? Idk. I started dialysis in February this year and now, I am currently on the way to UCI to have my kidney transplant. I can’t even begin to describe how I feel. A lot of nerves but beyond grateful. I’m so ready but so nervous. I love reading all your posts and how kind this community is. I hope you guys have a great day!♥️💫

If so which types of exercise do you do.

Wondering if anyone here on LI has a therapist that deals with transplant issues. Nassau county would be preferable. Thanks!

My mother had her transplant on September 30th and I feel like most people have a very different and much better experience that she has had so I just wanted to get some feedback from people for my own sanity as I have been really torn apart mentally since I found everything out, got a little better after the operation and she was doing good in the hospital immediately after but lately it's been going downhill it seems and I feel worse than before, although I can't imagine what she as well as a lot of you guys have had to go through.

She complains of 'Cadaver breath' like something inside her stomach died and she can smell and taste it. The doctors found a bile duct blockage and put a stint in, this fixed the problem for about a week and it came back, doctors suspected it moved and were trying to get tests scheduled. Before that could happen my mother was extremely weak and I had to bring her the the Emergency Room. She has some sort of infection, doctors haven't figured out what yet but she has been on antibiotics since yesterday afternoon. They also did a test to look at the stint and it's still in place. She also complains about her stomach hurting and constant nausea. Her stomach especially hurts more than when eating and she is literally suffering from eating half of an enchilada right now, she says it's more of a sick pain than physical.

And to me and her it seems like the doctors don't really seem to take any of those symptoms too seriously, they just say "oh that's weird", ask a single clarifying question and move on. Is that normal, I would think for being transplant doctors at a very prestigious hospital they would be a little more curious and put more effort in to get to the bottom. I don't want to sound like an asshole, maybe I do, but what do I need to do to light a fire under these guys asses? She has a terrible quality of life right now and most of them don't seem to care too much.

hey y’all! I’ve been so grateful to have my kidney for 6 years. I’m on 5 mg of prednisone and have recently become self conscious of my moon face. I would appreciate any tips, tricks, pointers, etc. on how to reduce the puffiness. thank you 💚

23 (m) living at home in England with parents. Very fit and happy most days, do a lot of exercise but usually need to nap around 3-4pm.

Having to declare my condition to employers definitely puts many off. I would also struggle to hold down a very demanding job due to fatigue.

I currently work at a local bar/restaurant but don’t get many hours since business is low right now. I have a good degree and am capable of doing more but don’t know whether doing more is a good idea for me, or even if it is possible considering how many employers treat my application once they hear about my condition. What do you guys suggest?

Hi guys! My mum (49) donated her kidney to my brother (27) this January start. I remember her creatinine in January end was 1.2 but recently it has elevated to 1.24 (till August). I know it seems a very small change but I wanted to know if it will affect her in the future. She has started doing yoga regularly now. Is there something else she can do? Do the donors here get their blood work done regularly? If yes then in how many months? My mum is not too keen on any meat in the diet as well. Please let me know your thoughts/suggestions! Thank you :)

Hi everyone,

My son (4m) had a kidney transplantation 2 weeks ago. The donor is his father. He is on cellsept and prograft. Currently we're still in the hospital.

I'm curious about what to expect. The doctors have their knowledge yes, but how to life live after, they don't.

I have so much questions, like is it helpful to use immunity supplements?

I read about the side effects people experience with the immune suppressants. It scares me for the life my son has to live.

My son is not even in school yet, how can we help him.

I have so much questions and I haven't found other parents to talk to. I feel so lost, powerless and useless.

I've been naughty yet again. I apologize because there is a long setup for the short punchline. I have also had a liver transplant, which is a big part of this story.

I work as a CNA in a nursing home, and there is a norovirus epidemic in the building that I apparently caught, but I didn't know it at the time. I have been having diarrhea at work for at least a week, and concurrent low blood pressure issues.

On to the actual story. Towards the of my Thursday night shift, I nearly passed out 4 times within an hour so I took my pressure, it was 75/48. Oh. Shit.

I went straight to the ER from work. IVs, bloodwork, the whole 9 yards. My creatine was sky high and my liver enzymes were just as bad; they thought I was in kidney failure and my liver took a major hit. Spoiler: it was severe dehydration and everything settled down after 5 liters of IV normal saline.

The local ER decided I needed to go to the flagship hospital in Indianapolis where my liver doctor was located. I get there, and I got the full pitstop treatment getting settled. One of the aides made the mistake in removing my right shoe and sock, where I had my TMA (Transmetatarsal amputation).

"What the hell?!? My toes were still there when I left Bedford!"

🤣

So I’m 3 months post transplant. I feel great I want to do things. I want to see my friends. My question is I feel like everyone is afraid to be around me or think they can’t drink around me. Broken plans ignored texts and calls. I feel like an alien. I’m really heartbroken. Has anyone experienced this or is it just my group of so called friends.

Hey everyone, I hope you’re all doing well 💗. Two weeks ago I had my liver #s tested and everything was perfect. This week I had them tested again and my ALT & AST are a little high.

Has anyone noticed this in their own lives after having a big meal like the ones had during thanksgiving? Or after eating some not so great (sugary, carbs, fatty foods)?

I have been feeling slightly under the weather for the last 2 weeks too so I know that could be affecting things as well but I’m really wondering if the rise in my numbers could be correlated to the foods I eat. I’ve been eating thanksgiving dinner leftovers since thanksgiving so maybe it could be that?

Liver donor, almost 1yr ago

They took my gallbladder with it, but will I ever learn than I can't eat almost exclusively cheese for 2 straight days and not wind up throwing up all night? No, probably not. I'll still slam a bag of potato chips on occasion and reap the consequences.

That's all, that's the post. Just acknowledging my idiocracy.

Hello all!

So happy to be posting again almost a week after my husband's liver transplant with good news! Surgery was successful, numbers are looking good, and no returns to the OR so far (knocks on wood)! He is in a fair amount of pain and balancing diureses/giving the kidneys a break is an ongoing discussion. But all in all, doctors keep telling us that he's doing great, exceeding expectations, and heading in the right direction.

But he's been having a really hard time physically. Not surprising, but still hard. He's able to use a walker to get himself to and from the bathroom, but he usually needs some degree of a assistance getting out and into bed and is very, very weak. The physical therapist who came by brought up the possibility of inpatient rehab after this current hospital stay. We're not sure if our insurance will cover it yet, but he has a pretty good policy so it seems likely that he'll have that as an option.

I'm thinking this sounds like a great idea - he would get more time with professional providers and they would help him build back the strength and mobility lost from liver disease - but it's ultimately his choice. I don't see much of a downside besides it meaning he's away from home for longer, but I'm not the transplantee so there might be things I'm missing. So I'm wondering, fellow transplant recipients and families: what do y'all think? Do any of you have experience with inpatient rehab and PT? Any strong opinions or meaningful experiences with it? Thanks!

As people with transplant, from time to time it happens that we overhink the whole life expectancy thing. So, people with transplanted organs that have their transplants still functioning well after a good while now, please if you'd like to, share your stories/ experiences and tips with the rest of us :)

I had an emergency liver transplant on 6/15/24 - I had no prior issues therefore I wasn’t on the transplant list prior to this happening, and hadn’t applied for benefits at the time. I was in a coma for a few weeks, so on June 20th my mom applied for SSI on my behalf. It’s been months now & I still haven’t been approved.. I’ve sent it all the documents required, and I spoke to someone like 2 months ago who said my app was under medical review, then a few weeks later someone on the phone told me they were actually thinking about making the start date to my benefits February, since that’s when I began getting sick all the time and visiting hospitals/doctors (who all dismissed my concerns & did nothing for me), rather than June when I got my transplant & my summer-long hospital stay began. I was under the impression that an organ transplant was an automatic approval, and that bc of that the process would be a lot faster. It’s super frustrating because I can’t work & am now going on 6 months with no income.. I’ve been hospitalized multiple times since my initial discharge in august due to complications including 2 more surgeries, and am still required to go to the clinic twice a week for labs & to see my team since my new organ has a blood type that differs from mine making things a bit more complicated (this is something my hospital/transplant team had never done before, but was necessary due to how bad my condition was).

I was just wondering if anyone else had experience applying for benefits after their transplant, since most stories I’ve seen are from people who’ve applied while on the waiting list for an organ.

5 weeks out from a kidney transplant. Doing well.

Wanted to ask how people here manage the risk of Covid with their transplant (had it in 2021 pre-transplant and saw a permanent reduction in GFR)

I did the transplant to try and live as full a life as possible. Covid is largely unavoidable - it’s floating around and who knows when / if I’ll catch it. I know there are new protocols for transplant patients but not sure how effective they are.

Wanted to get some advice from the community on how they manage this risk

This happens to me a lot. 1 year out double lung.

I wanted to share the med box I started using right after transplant. It's been key in keeping me on schedule and everything organized. I just saw it's on sale for black Friday, I have no affiliation with them I just love the med box. https://a.co/d/5wxILBk

med box

My father is scheduled for a kidney transplant, and a fresh sample for the HLA (Human Leukocyte Antigen) test was taken today. The report will be available on Tuesday. I am still arranging the remaining funds for the transplant. Could anyone tell me how long the HLA test is valid? I want to ensure I don’t have to repeat the test and have enough time to arrange the required funds. Any advice would be greatly appreciated!

My doctors diagnosed me with rejection about 1-2 months ago following my 3-year post-liver transplant check-up where my blood work showed elevated liver enzymes and biopsy confirmed it.

I got admitted into the hospital this week where they attempted to insert a catheter to drain my bile, but were unable to due to the scarring of my posterior bile ducts. I’m on rounds of IV steroids and antibiotics now, and may potentially have a larger surgery next week.

My hepatologist said there’s a good chance I’ll need a new liver in a few years, even if we stabilize things now. I’m so scared because it felt like I just got my transplant and haven’t fully mentally recovered / processed that and now I’ll have to go through that terrible process again? I finally have good hair again!

My friend donated half her liver to me and I feel so bad that her gift of life will only last a few years. I’m afraid no one will want to donate to me this next go-around.

Can anyone who’s gone through multiple transplants share their story with me? What did it feel like hearing you’d need another transplant? How did you cope with it?

I had posted earlier about consistently low tac level. Now I'm at 6mg BD tacrolimus which i assume is quite high. My tac level still remains at 1.9. My doc swapped it to advagraf 6mg OD along with a 3 day pulse steroid injection probably coz my ast alt alt were of the 100-130 range. I have AIH and I'm 4 months post transplant. I follow a moderate healthy diet. No trigger foods or much junk. I religiously follow my meds. Tacrolimus , everolimus and Prednisone. I was also on aza which was stopped when my WBC counts dropped to 2.

My doctor wants me to go for a biopsy and I'm completely trust his judgement. I jus wanna make sure if I'm doing everything right coz honestly he seems pretty confused at how my labs are showing.

Edit: 4 months post liver transplant