Here’s my question: has anyone else experienced acute rejection either early or late? What were your experiences? How long did it take before you had fully normal blood work? How long did it take before your team felt that you were back to baseline? Did anyone have steroid resistant, and if so, what was that experience like?

I posted on here about a week ago, I was brought into the hospital with really high LFTs on my five year liver anniversary. They determined I had a minor stricture and placed a stent, which is a common thing for me(LDLT). but they also found acute rejection on a biopsy. RAI 3-4/9 They told me that there’s no damage to the organ and that it was caught so early because of the stricture.

I was started on prednisone on Sunday, and saw immediate improvements in my LFTs which more than likely were from the stent. I had bloodwork yesterday and some values increased while some continued to decrease.

My team has extended my dose of prednisone, and for some reason, my body seems to be burning through my Tacro much faster than it used to so they had to increase my dose to get me back into the six range.

My team doesn’t seem to be very nervous but has increased the frequency of my blood draw and told me that they’re going to be doing a lot of medication adjustments. That said I’m still kind of freaking out.

Curious about any heart transplant patients and their experience with exercise. I'm 8 years post trx, was active, hiker, gym goer before transplant, went to the gym within a year of transplant but stopped when covid closed my gym down and haven't gone back, instead opting for an at home weightlifting regimen and long (6 mile) walks three times a week with about 1000' of climbing (stairs and a hill). On the hill I'm so slow, having to pause several times due to quad pain (that goes away in a minute or so), grinding it out to the top - just wondering if anyone has found the key to successfully staying active and improving their performance/staying fit. I was early 50's when I received my transplant, familial cardiomyopathy diagnosis (my dad had a heart trx as well).

I don't know if I've ever posted a good news post so I wanted to share this one with you since you will understand this more than anyone in my life. My daughter donated her liver in July 2023 and a friend donated her kidney in March 2024. I have had LOTS of ups and downs like all of us do with bone marrow stimulator shots, liver biopsies, infectious disease doctors to 6 months of long-haul COVID.

But these were my labs this week. I literally stared at them for a few minutes doing a total triple-take. I was so confused to not see a single thing out of range on the first page. Then I wondered if they mixed them up with someone else's labs. I will be 55 in March and I don't know if many people my age in general without two organ transplants would have labs like this. So I was pretty damn happy, to say the least! I don't remember when I have had labs like this. Maybe a decade ago?

I'm sure they won't love my Prograf being at 5.6 as that is low for me but if everything else seems happy in my body, maybe they will leave it. I still take 6/5 of tac which seems like a lot. (only 180/180 Myfortic).

But yay. I will be framing them as a constant manifestation to have these labs every time!

Today is my 7th liverversary.

Carry on.

Hi guys! So every day after taking my kidney transplant medicines (cellcept, prograf, decoratin, controloc) I am suddenly knocked out feeling dizzy, like all energy has gone out from my body, my head feels like it got vacuumed, and I have to lie down half an hour to hour till this fatigue goes away and my body regains strength back. Does anyone have similar symptoms in the mornings? Curiously, after evening medicines (cellcept and prograf) I have no symptoms. How do you take mornings pills - all of them at once or in time intervals separately? Thank you on all answers, this is really bothering me and it's becoming problem for everyday life since in the mornings I am practically useless to living world.

Changes After one month of My Father's Kidney Transplant:

His weight was 44 kg before the transplant, and after one month, it has increased to 48 kg.

Creatinine levels, which were between 10-15 before the transplant, are now normal at around 1.

His haemoglobin has improved from 5 to 10.5.

He had no appetite before, but now he eats well and maintains a healthy diet.

He was too weak to walk earlier but is now recovering well and walks around 1 km daily.

His skin has started glowing, and there is no swelling or pain anymore.

The only concern is his sugar levels, which spike in the evenings, but as many of you mentioned, this is due to the medications.

Hi, for folks who have to get tested regularly for tacrolimus level, it appears Labcorp is doing a trial of a new method.

From their email: "The purpose of this study is to collect blood samples from heart, liver, and / or kidney transplant patients who are currently on Cyclosporine, Everolimus, Mycophenolic Acid (MPA), Sirolimus, and Tacrolimus to test a new method of ISD level measurement that is faster and more precise than what is currently used."

I am not affiliated with Labcorp and do not yet know what this entails, but anything that might make our lives easier seems worth looking into.

Email TASERResearch@labcorp.com for info.

Hello! Had a kidney and pancreas transplant ~1 year ago. I struggled with iron deficiency and had to have quite a few rounds of iron infusions early. Felt a lot better after. Lately I’ve been feeling lethargic and tired and exercised is getting harder. I noticed my hemoglobin going down with each test and asked my docs to test iron. Here are my results from today:

RBC 3.67 Hemoglobin 111 Hematocrit 0.34

Iron 28 Iron binding capacity 53 Iron saturation 0.53 Ferritin 229

Is this just low level anemia? I mean the iron panel is pretty much all in the higher normal range and the RBCs etc are just below normal. Or is something else going on? I’m trying to avoid feeling like crap again so hoping someone has experienced this and can provide some insight. Thanks!

This week Senator Bill Cassady (R, LA) sat on the senate finance committee for hearings to advance RFK Jr's nomination to secretary of health and human services. RFK Jr. has spent decades as a lawyer trying to undo FDA approval for many vaccines and spreading debunked theories about how vaccines cause autism. He even promoted these ideas during his confirmation hearings this week. As HHS secretary, RFK Jr will have unprecedented power to try to promote vaccine skepticism and have vaccines removed from the market by pulling their FDA approval. This will put all transplant recipients (and millions of other Americans) in harm's way.

Senator Bill Cassady is a critical vote in advancing RFK Jr's nomination to a full senate vote. He is also a physician, who has dedicated his life to vaccinating people against preventable illness after watching a young patient go into liver failure after being unvaccinated for hepatitis. As such, he has expressed serious concern about voting to advance Mr. Kennedy's nomination. (You can read more about that here: The Republican doctor who could be a hurdle to RFK Jr.'s confirmation) Please consider contacting Senator Cassidy via his website and asking him to vote against RFK Jr's nomination, especially if you live in Louisiana. (Home | U.S. Senator Bill Cassidy, go to contact tab > get in touch) I have pasted an outline of what I wrote below, if you would like to use it.

Dear Senator Cassidy,

 You recently opened questioning of potential health and human services secretary RFK Jr. with a story about “the worst day of [your] medical career.” Thank you for sharing the story of your young patient and her preventable liver transplant. If it’s okay with you, I’d also like to share my transplant story. [Tell about yourself or your recipient here].

 However, as I’m sure you know, [Recipient name] is on a twice daily regime of immunosuppressive drugs to prevent [organ] rejection. Those drugs keep [him/her/them/me] alive, but also make [him/her/them/me] vulnerable to getting seriously sick or dying of many common and relatively “minor” illnesses. [We/I] have noticed - with alarm - the increasing vaccine hesitancy in those around [us/me]. What used to be accepted without question due to robust evidence of safety and efficacy is now being rejected in the name of pseudoscience and scientifically-flawed skepticism. Because of this alarming trend, [we/I] live in increasing fear that someone close to us will infect [Recipient name] with a vaccine-preventable illness that could severely sicken or kill [him/her/them].

I’m writing to you today to ask that you use your Finance Committee position to vote AGAINST the advancement of RFK Jr to a full confirmation vote. If he does pass the finance committee vote, I ask you to please vote AGAINST RFK Jr’s nomination to cabinet secretary. Mr. Kennedy's vaccine rhetoric is dangerous to all American's but especially to those who are immunosuppressed. The secretary of health and human services has tremendous power in this country to not only stoke (or calm) vaccine hesitancy, but also to directly create policy around vaccine access. You have a chance right now to decide whose voice you want to amplify as HHS secretary - one of a medically qualified individual, or one who has actively worked decades to eliminate access to vaccines in this country and spread debunked conspiracy theories.  Vaccine skepticism will not “Make America Healthy Again;” it will only serve to bring on a wave of preventable illnesses for people like [Recipient Name] and your young liver transplant patient. If we want to “Make America Healthy Again” we need to loudly endorse the practice of evidence-based preventative medicine. It is my sincere hope that you will use your position in the senate to do exactly that in the coming days.

Best,

[Your name]

Hello all,

I am brand new to this sub and hoping to find some a community of resources and support here! My wonderful partner of 5 years is up for a second kidney transplant as well as her first liver transplant due to PKD/CHF. Things have been really hard as she doesn’t show symptoms of being sick, she’s in chronic rejection of her kidney that started with a creatinine of 4 (she had always been below 1) that has come down to 2.13 about a year later and GFR is back up. She has no symptoms of the CHF except with her labs she technically has a MELD score of 18…. I’m rambling and brand new to this trying to wrap my head all around it. I’ve been in emergency medicine for close to a decade and took care of my dad on hospice and have major caregiver related cPTSD. Can I just maybe hear some words of encouragement and success stories? I’m so used to people needing liver transplants being so so sick, but she isn’t.

Also if there are any resources for financial help while I am her caregiver. My current job does not have FMLA (to little employees) and short term disability already said they would deny my claim as a caregiver. My partner and I are not legally married. My job says they will work with me when the time comes however I truly don’t think they are believing me when I say it will be 1-3 months I will have to be out. My partner thank god has an amazing employer with FMLA and short/long term disability. Thank you all, im sorry if this is a ramble, this is the state my brain has been in since we found out this was the new adventure for us.

My wife just had a kidney transplant 2 weeks ago. We have always knew this day would come, so we thought we were prepared. But I didn’t realize how intense the immunosuppressant would be and how it would change our lifestyle. And now reading the posts here scares me more.

We live in a metropolitan city, where it is almost impossible to avoid people. There’s always someone on the bus or train or malls that is coughing. Even the beaches are crowded!

So genuine question is, do you think it’s possible to “not catch the flu”, while living in a densely populated place. Or is it something that we just have to accept.

I’m even thinking of leaving the country and live in the countryside so as to avoid “catching germs”.

My father underwent a kidney transplant on 31st December 2024. He has been a type 2 diabetic for the past 12 years. However, after the transplant, his sugar levels have started rising suddenly in the evenings, reaching 400-500 mg/dL. The doctor mentioned that this is due to the post-transplant medications and has been consistently increasing his insulin dosage. Has anyone experienced a similar situation?

In the hospital currently waiting on a kidney. We have been told the kidney is CMV EBV positive but the kdpi score is 6. What are our options? Should we go ahead with the transplant? Will check with the nurses/surgeon once they talk to us.

I’m am currently starting my second course of three high-dose prednisone treatments for acute lung transplant rejection. I’ve also been referred for a plasmapheresis consult next Monday. It’s only been 20 months since my transplant so I’m a little depressed. What should I know about the plasmapheresis process? I’d love to have some information before seeing the doctor. Thanks in advance for your responses. I’ve learned so much from this group.

this is really just a bit of venting, so feel free to join in if you’re also frustrated.

Obviously I am so grateful to just be alive, I honestly almost died a handful of times before I got my liver and kidney in 2023.

…but these immunosuppressants really make it hard for me to live consistently. I get sick, what feels like, every two weeks. If it isn’t a stomach bug, it’s the flu. If it isn’t the flu, it’s strep. If it isn’t strep, it’s some mystery infection. Migraines, nerve pain (I had some severe nerve damage when I was sick so this might be unique to me lol), passing out, etc.

I’m only about a year out from my two transplants so I’m still very much so in recovery (I was in the hospital for a few months prior to my transplants too) but I just want to get back to life. Within reason of course, but ugh. I’m a musician having to cancel shows, I have clients I’m constantly cancelling/rain checking with…I feel like a flake when I’m usually a very committed person.

I'm 28 years old, I had my kidney tx June 30th, 2023. I had an early rejection, but it's been smooth sailing since then generally. I made a few attempts to go back to the gym in months 9-12, but honestly I couldn't really keep a schedule. Also my transplant center was messing around with my tacro dosage, trying to get me off of balatacept, and it took a while to find the right one.

Now though, I've been on the same meds for a while, and feel pretty stable (or as stable as I can feel tbh). I've gotten back to the gym, and am currently doing a 5x5 split, and some biking/jogging after my weightlifting. For those of you who lift, what's a reasonable amount of protein to eat to support muscle growth while also keeping the health of your transplanted kidney in mind.

EDIT: I think maybe there's some confusion here. I don't take protein powder, nor am I asking about how much protein powder to take. I'm asking how many grams of protein do you guys feel comfortable eating in a day to support muscle growth, while also keeping in mind that we have to take care of our kidneys. For example, over the course of a typical day I consume ~80-95 grams of protein from whole foods, mainly animal sources (chicken breast, greek yogurt, fish, etc).

This includes but is not limited to:

- the center for Medicare and Medicaid services, which not only pays for medications and medical care, but pays for the training of resident physicians

- the Organ Procurement and Transplantation Network

- the National Institutes of Health, which funds the vast majority of transplant research

- the FDA which regulates transplant medications and food safety to prevent food-borne infections

- the USDA which specifically regulates meat, poultry, and eggs

As the heading says, my partner is an immunocompromised heart transplant recipient, 32yo male.

He is mostly healthy but insists he insists on eating raw eggs daily (at least four per day). I don’t mind if he ate 10 boiled eggs but the raw part is absolutely insane. Worse yet, he leaves the shake he puts the raw eggs in overnight so he can drink it in the morning. He claims he needs the protein but he doesn’t even work out nearly enough to need 160g of protein.

I get he’s a young man and influenced by bro science but I’m writing this here in the hopes that you guys can help me approach it in a kinder way, because I am genuinely worried for his health and the amount of raw eggs he consumes.

EDIT: This February will be 3 years post transplant. No other co-morbidities. I showed him this post and will share an update shortly.

I've received an amazing gift, and it pains me I can't offer one of my organs (kidney or partial liver) while still alive to someone else. Anyone else feel this way?

I’m curious Has anyone gotten listed with this? I had a stress test which popped normal then another hospital wanted to redo it. They did it differently without the treadmill and they claim I have low function. Regardless. Can transplant centers work with this? It’s a real blow to hear I’ll get listed and then oh wait committee decided to make you wait 6 months…..

I had a heart transplant about 2.5 months ago at the age of 54. Has anyone's doctor said anything about edibles, mine did. I wanted to see if anyone else was told anything. I know smoking is a no no.

Interested to know how long it takes to establish care and get meds. What's the process like? What requirements are there to become part of the health system?

Edit: I had my transplant over 5 years ago, I am only interested in continued care and not being listed or evaluated for another transplant.

I've just been admitted into hospital after a night of violent vomitting and the runs. My potassium is really high and they started me on a hyperkalemia protocol..I didn't even know that was a thing.they gave me Salbutamol nebuliser and insulin as it apperently reduces potassium. My creatinine has jumped from 190 - 325 and I feel like this is the end as I have urine in the blood and no matter how much I drink, I can't get rid of it.

I know I should be greatful to the NHS and I am. They treated me amazingly, but can't help but feel like life is so damn unfair.

I was given Ketoconazole to help deal with my Sebbhoroic Dermatitis, but i read online that the oral version is dangerous for the liver.

The creme however, i’m not sure. Is it dangerous to use for me, a liver recipient 5 years ago?

Today (soon) they will be removing a spot on my native kidney. They believe it is Cancer. No way to know for 💯 They will try and get a biopsy but the spot is very small and it might not be successfully removed to look at it. Anyway another step. This has to be easier than transplant so here we go. Back to normal in a day or 2. Sorry guys you'll have me bothering you again soon. Love to you all.

Update:

Ok. I'll do my best to explain what happened.

I've had a few MRI and CT scans more than a few ultrasounds too. While I knew and the medical teams realized there were many cysts on the native kidneys there was a spot that concerned them. First it was likely a cyst, nothing to worry about. I had a lot of em. Only there was this one that was in a fold and it was bent wrong to get a good view of it. No problem just do another scan and we'll get answers. Nope. New one doesn't show well. Darn. Let's try a different scan type. Again and again. Finally they decided the spot was ultimately too small to worry about and so surveillance scans were to be the rule of the day. A year later it appeared to have grown in size. Cysts rarely grow (of this type but it does happen.) They ordered a bunch more scans again same issues as last time ONLY this time they thought in the growth area it had picked up a blood supply. FYI this is a tell tale and while not good I was still in the stage of not a problem. Discussed it with urology my options and picked cryogenic option. Least invasive of invasive and "easier" recovery. Then I was referred to IR intervention radiology. That's where someone dropped the ball. Apparently the provider that was to refer me went into early labor and this me and my paperwork fell thru the cracks. Not to fear I had only waited a month before I started (as always) advocating for me. Got the appointment with IR and went in to have them discuss the same options again but by this time I had done my homework and picked the same feeling more confident. If any one is interested I can discuss the options if not I'll skip this part. Surprised they said they would schedule me in about 3 weeks. 3 weeks to the day was today.

Today was supposed to be "easy" SUPPOSED TO BE. The surgery was to be 60-90 min, in the end it took 60. The hard part was I found out during my transplant I may have had an anaphylaxis event. I had no idea. I'll be asking my transplant team for additional information as this could affect future surgeries and things. No problem with it today. The hard part of today was after they put me under the had positioning issues. They would try 1 position then CT scan me and move me more. It took 4 hours from start to being wheeled back to recovery out of the PICU. The remaining hard parts is I was intubated far longer than planned. Now my throat is killing me. I have fibromyalgia and serious back issues and such and now I hurt really bad. Also die to the length of this the anesthesia made have a ton of nausea. Still having now but it's better. Can't really eat or drink anything at the moment. I am told that the spot reacted a lot to the dye they used. I assume this was contrast dye. That almost confirms cancer and confirms blood supply to the spot. All of it was removed and due to size biopsy wasn't easy if they got tissue at all. They could do biopsy before but doing that would make getting the freezing probe in the proper placement with ease. I agreed before hand I would rather get the spot rather than have a good biopsy sample. So now I have to fight for the pain meds in the morning because (American freedoms) reasons. And I am gonna go try for a few hours of sleep and see if that's possible. Wish me luck. 😂 Also a big thanks to those who reached out and got your thoughts and prayers. Oh and

Would I do it again? Yep

Any questions just ask here or DM

Hello everyone! (English is not my first language) I’m not sure if this is the right place to ask, but if not, I’ll delete the post. I'm writting a book in which my character underwent a heart transplant when she was 3 years old. What are some less obvious facts about life after a transplant (she is 16 now)? How might this affect her psychologically, and what physical limitations could she have? What could have been the reason for the transplant? I would be grateful for any information

I posted about a month ago that I was 9 months post transplant and in acute rejection. I did a round of high dose steroids and then had repeat biopsies. The acute rejection did reverse with the steroids so I was super happy about that. I noticed that I have been really having trouble with my eyes but had also just gotten new glasses. My eye issues felt like they were getting worse but I wondered if it was the steroids or the glasses. I just wasn't sure. Today I went in and saw my eye Dr and it turns out I now have PSC Cataracts. This isn't the age related Cataracts but are often due to high dose steroids. After reading more about them they progress really quickly and it has absolutely happened so quickly for me. All this to say if you have to do high dose steroids be proactive when it comes to your eyes and any little changes you may notice. This definitely wasn't something I thought I would be dealing with right now.