r/kidneytransplant

Has anyone discussed doing an ayahuasca after a transplant? I see some potential conflicts between tacrolimus and ayahuaska alkaloids with CYP3A4 enzymes, and I will definitely discuss this with my team, but I’m curious if anyone already had those discussions?

So on Friday 26th June, id just come out the shower, lotionsd up and still starkers. I had just drained my PD fluid for the evening, so was feeling light and chirpy! I was getting ready to go out and party with some friends and my husband! Double date vibe! I had one eyelash on, about to do the other and my music was bumping in the background.

What came next changed my life!

My music stopped and I heard my phone vibrating, a call.
I ran over to my phone and didn’t recognise who it was, it said Maybe Anna, I just thought that’s weird, why is my work colleague calling me. Then I noticed the landline number and was super confused. It wasn’t spam, as I had spam called blocked.

So I picked up….

“Hello, it’s Anna, the kidney transplant co-ordinator, am I soaking with ActionGrouchy?”

I froze, tears welled up in my eyes.

“Yes, it’s me”

“We have a kidney for you!”

I bawled out crying, asking if it was a joke and ran to our bedroom. My husband, who was getting ready was also playing his own music, turned to me and was immediately worried? “What’s wrong??!!!”

I couldn’t speak, I couldn’t hear Anna, I was so lost and happy and feeling a whirlwind of emotions, all I could do was hand him the phone and say speak to her.
He picked up the phone and Anna told him the news, after about 10 mins of conversation, laughter and kind words, the call ended with “Get to the hospital for 8pm”.

Here I was, a butt naked, unprepared, mess on the floor crying, but having the best day of my life 😭

Anyway fast forward and I’m now 6 days post op….and the high has really warn off!

I’m happily back home after 5 days on the ward, but mentally I cracked at day 3.
Everything makes me cry, my heart beats faster now and I can feel it all the time, I find myself just staring into the distance aloof. I’m hot one moment, then freezing another, bloated and always feel like I have something, or a bubble in my throat. The most annoying thing is how aware I am of the kidney, I breathe, I feel it, I sit, I feel it, I cough, I feel it. It’s not an extension of me, it just feels so foreign! I hope my kidney just disappears into my body, as right now I feel like I don’t recognise myself, I know it’s silly as it’s a major change, I feel so ungrateful for how I feel.

I guess I truly just didn’t know what to expect, and I’m kind of struggling. I’m usually a YOLO girl, never negative, always open minded! But this has winded me.

I had SLE for 16 years, which caused lupus nephritis. I lived a good life tbh. I never stopped doing things I loved, barely had restrictions on food and drink. I went on the list in June of 2024 and I only started PD in November 2024, when I dipped to 6 EGFR. My exchanges were even minimal, 2 a day with breaks between.

But this new me just feels sad a lot of the time. I want to be happy about this transplant as I can really start life now, but I just don’t feel happy anymore.

I’d just like to hear some happy experiences, even if they start off terrible. What did you do to mentally feel yourself again ? My body is recovering, but my mind feels lost at sea .

I’m a recent kidney transplant recipient and following up first time with my Dr. After surgery. I’m suppose to get Tac level test done before visiting and the problem I’m facing is that it has to be done 30 minutes prior to the dose time, which is 7am-7pm. No labs near me is available as early as 6:30 am and for my surprise they don’t stay open till 6:30 pm.

I’m living in Zirakpur, Near Chandigarh. Looking for advice around this important test.

So my team said cbd is okay but thc is not. Doesn’t make any sense everyone who has a transplant says thc edibles are fine and that cbd is bad. Are they just saying that because thc is illegal here in Texas?

Does anyone take mushroom edibles my transplant pharmacist said certain ingredients were fine like lions main and cordyceps. I’m just confused because ai says no and then one of the nurses said no. It’s polka dot brand

What are some things that came in handy for you guys or things you wished you had. My dad just had surgery and I’d like to put together goodies for him!

Hello everyone,

I've been having consistent fevers for about 5 days now, with the highest running at 100.5 so I went to the ER.

They believed it might be a possible infection on my incision being the cause.

I was prescribed:

Clindamycin 150 mg

3 pills × 3 times a day

For seven days

Does this seem excessive? This was prescribed to me by an ER doctor who I don't believe works with kidneys.

Isn't Clindamycin bad for kidneys and can lead to acute kidney failure even if gfr is well now?

Doesn't it affect immunosuppressant medication?

As a newly transplanted patient, I'm very scared.

Can you please tell me if this is common, and your own experiences with being prescribed this medication post transplant?

Thanks all.

Hello! I am close to getting call for cadaver kidney and I am wondering how often my helper will need to be around within the 1st few months and what that kind of looks like. I am a 39 y/o woman who lives by herself with 2 cats atm. Any info and advice would be helpful!

Im writing my story here to see if anyone else has experienced the same situation as my husband or can give me some advice.

My husband is 53, got a kidney transplant almost 8 weeks ago now. We were so happy when he got the call from the hospital as he has been on peritoneal home dialysis for 2 years.

The transplant operation went very well, he recovered quickly and after 10 days he was omitted from the hospital. He was advised that they would take out the catheter 4/5 weeks post op. We were starting to make plans for the summer holidays and just enjoying this new chapter in our lives. It was amazing to see him with such a new positive outlook on his life.

He was so careful with his medications, never missing them or any of the biweekly hospital visits and going back to the hospital to get checked out for any issues (muscle pain). We wore masks around each other and didn't even sleep in the same bed together anymore to avoid transmission of virues or infections. He rarely went out for fear of infections and we literally did not have any social life. I also stopped going into the office and worked full time remotely to avoid contact with too many people.

He started to have diarrhea and some admonial pain 5 weeks post op. After a routine visit including blood stats and a scan on his new kidney in the hospital nothing came up showing anything abnormal. So with some new prescriptions for stomach issues and some slight changes in his medications we went home. His condition worsened and 3 days later he was admitted to hospital with severe dehydration caused my constant diarrhea.

He and I was told he was stable and would be out in a few days once they treat the dehydration and also remove the catheter inserted in his stomach for the peritoneal dialysis. However, the situation did not improve and after 5 days they told me that he has caught a very bad infection. This infection turned out to be sepsis... they had to reduce his immune suppressant medication putting his new kidney at risk. They told me that they had a infection expert that was recommending the correct course of antibiotics for this specific bacteria.

After another 6 days in hospital his condition worsened as the infection was too resistant even with the antibiotics. They tried to perform hemodialysis which caused a severe drop in blood pressure. He was then rushed to ICU and he has been there ever since (4 nights counting). He has been incubated and battling the sepsis infection.

He is fighting for his life in ICU at the moment. The doctors have confirmed that his new kidney no longer works. They have also said that they need to amputate his left foot which has a closed artery (he was trying to get it operated on but was called for the transplant so was unable to do so before the transplant operation) and is too damaged beyond repair due to the sepsis infection.

I am in complete and utter shock and despair that this has happened to the love of my life. I am angry that he caught this infection in the hospital, the place where he should go to get better not to get worse. I dont know what the future will hold for us if he makes it through this nightmare. He will have to go back on dialysis and he has a big fear of doing the hemo dialysis in the clinic. I have been asking myself everyday was this transplant that he wanted so badly even worth it. Was it a big a mistake bcos now he is fighting for his life in hospital, he will be physically disabled and there is still no positive feedback from the doctors to say he will survive this. We should've been told more about the risks.

Please someone tell me theyve been through something similar and things will get better? Right now I can't see the light at the end of this dark tunnel 😢

Had kidney transplant last Tuesday, and my first postop check-in was yesterday. My JP drain from surgery is still putting out about 400ml a day. The entry is super red and painful, the nurse admitted that it was not sutured as well as it could be. There is a ton of stitching around the tube and a single stitch on my skin, the stitch is pulling my skin so much it looks like a tent and it's severely red. I asked them to remove it and she basically scolded me telling me they can't because it's putting out too much fluid still. During my appointment she bent the tube against my skin to bandage it better and it hurt so fucking much. She asked if I was taking my Oxy Rx, and I told her I haven't felt like I needed to (it's mostly a pinching pain but when there's more force to the site it's almost unbearable pain), she goes "well it looks like you need to now!". I have another appointment on Thursday (tomorrow) and another next Monday. I have a feeling they won't rremove it tomorrow. I can't stand it. Everything else is great, labwork is great..losing weight, they prescribed Lasix 20mg to try to get more fluid off. I just know my anxiety would go away and I would pain free if this freaking JP drain was out.

I am only 2 years post kidney transplant and my labs in April were great but I missed labs in may due to insurance stuff and then labs in June showed rejection. My doc told me to go to ER and the nightmare started from there. I was there 11 days and had to get a biopsy, which showed mix T cell and B cell attacking. That lead to 5 days with a jugular catheter in my neck while getting plasma effusions and iv ig every time after, so maybe blood draws and vitals all through the night. It was not fun but I will say they were so attentive and made sure to save my kidney function. Just so crazy

It’s strange how quickly life can change. Never thought I’d be learning so much about my dad’s kidney disease, blood types, and transplant waitlists.

Since my dad is an O blood type, we found out none of us in the family are a match, so for now it’s just a waiting game and hoping for some good news. Just felt like getting that off my chest.

And to everyone else who’s waiting on answers, a match, or just a little bit of hope - hang in there. Better days can still be ahead, even when it feels like nothing is moving.

Just needed to share and get it off my chest..

Hello Kidney peeps.

Where did you post your story and need for a Kidney donor?

My only social media, if you can call it that, are my LinkedIn connections.

While my manager knows that I am on the transplant list and is supportive, I am not sure how much of my medical story I feel comfortable with out on a career site.

I’ve been reading through this community for a while, and I finally decided to make a post because I think I need to hear from people who truly understand.
I received my first kidney transplant when I was 12 years old. Unfortunately, after almost 10 years, that kidney recently rejected a few months ago. I’m now 21 years old, back on dialysis, and beginning the process of getting listed for a second kidney transplant.
To be honest, this is the hardest thing I’ve ever gone through. I can’t believe this is my reality.
Just a few months ago, I was focused on college, friends, and starting my adult life. Now it feels like everything has been put on hold. Between dialysis, hospitalizations, and waiting for another transplant, I feel like I’ve lost control of my life. The uncertainty has been the hardest part. I find myself constantly thinking about what my future will look like, Some days I feel hopeful, and other days I feel completely stuck. I’ve been struggling mentally with all of this, and it’s honestly been overwhelming.
I’m not writing this for sympathy. I’m writing because I would really love to hear from people who have been in a similar situation.
If you’ve had a second kidney transplant or a kidney transplant in general. I’d really appreciate hearing your story.
How long did you wait for your transplant?
if anyone with O+ is willing to share their experience.
Did you get listed at more than one transplant center?
Is there anything you wish you had known while waiting?
What helped you get through the uncertainty?
If you were transplanted, how has life been since?
Are there any transplant centers or states you had a particularly good experience with?
If you could give one piece of advice to someone in my position, what would it be?
Thank you to anyone who takes the time to read this or respond. Right now, hearing from people who have actually lived through this would mean more to me than you know.

Hello!

I wanted to ask everyone if they had to deal with weight gain after transplant and how they are managing it. I didn't worry as much while on dialysis but now that I'm 3 months post transplant I've put on some weight. I have started physical therapy to start rebuilding my muscles and bringing back my endurance. I also wanted to know if any of you have started or are on any glp-1s and how thats made a difference. I've discussed all this with my doctor and team already but I still like to to hear real life experiences of everyday people.

Thanks =)

Hi All. Just got my surgery date confirmed - 7/22.

A bit about me. I’m 43F. Discovered I had kidney disease when I was pregnant 15 years ago. It’s been a journey and something I pushed to the back of my mind until I couldn’t any longer. Anyway, I have a living donor and our surgery date is set. I’m working my way through paperwork for my leave and all that stuff. Now I’m panicking about what all I should get taken care of before surgery.

What supplies did you find helpful to have at the hospital? For home? For the fridge or pantry?

Should I hire professionals to deep clean my house before surgery?

Ladies - what kind of pajamas did you find comfortable? Any specific undies?

Home - Did you rearrange any of your furniture at home? Change the side of the bed you sleep on based on pathway to the bathroom or ease of getting out of bed? Did your partner continue sleeping in the same bed during recovery? Did you even sleep in bed or sleep somewhere else?

Pets - How did you do things differently with your pets? We have a cat. Luckily for me she’s not affectionate and doesn’t particularly care about me lol. We’d like to have a dog in the future. How long should we wait? (Our old man dog passed not too long ago).

THC gummies - my drs haven’t had any issues with this (legal in my state). I generally take 1/4 or 1/2 a gummie before bed. I’m stopping taking those. But that’s why I’m wide awake right now in the middle of the night lol. Question - have your habits changed since transplant?

Work - I work full time as a facility manager on a large campus. My work has been incredibly supportive. But has your ability to work changed post surgery? I have some flexibility to work from home when needed but it’s something I try to avoid.

Appreciate any feedback you can provide. I’ve been lurking in this sub for a few months now and have found the posts and insights helpful. The fear going into this has been…something else lol.

A NEW IMMUNOSUPPRESSANT FOR KIDNEY RECIPIENTS

An experimental immunosuppressant drug being developed by Eledon Pharmaceuticals proved superior to the current standard treatment, according to data from a clinical trial, and looks to be a potential game-changer for kidney transplant patients.

Kidney recipients must take immunosuppressive drugs for ‌their lifetime to prevent organ rejection. The medications can affect both long-term graft survival and how patients feel and function in their daily lives.

While the current standard-of-care immunosuppressant – tacrolimus, in use since the 1990s – basically affects the entire immune system, the Eledon drug, tegoprubart, selectively blocks the activation of specific immune cells in the so-called CD40L pathway.

In a long-term follow-up study of kidney transplant patients who participated in a 12-month mid-stage trial, those treated with tegoprubart had superior kidney function from one month onward compared with patients treated with tacrolimus, researchers reported at the American Transplant Congress in Boston.

Patients treated with tegoprubart had no graft loss and no biopsy-proven acute rejection episodes after the first six months post-transplant, compared with roughly 64% in the tacrolimus group.

Side effects were less common with tegoprubart as well. Just 2% of those who got the Eledon drug experienced headache or acute kidney injury ⁠versus 12% and 6% for tacrolimus, respectively. None of the patients taking the new drug had extremity pain, or falls or loss of balance, compared with 10% and 6% for the standard of care.

“For kidney transplant recipients, success is measured not only by preventing rejection, but by preserving kidney function and maintaining quality of life over the long term,” study leader Dr. Andrew Adams of the University of Minnesota said in a statement.

Eledon has said it plans to conduct a late-stage trial of tegoprubart in kidney recipients later this year.
In a separate presentation at the meeting, Dr. Nicole Wojcik from the University of Chicago reported on a pilot study in which tegoprubart was well-tolerated and effective in patients with diabetes undergoing pancreatic islet cell transplantation.

Hello everyone,

My dad had a kidney transplant 18 months ago. He has Type 2 diabetes, and before the transplant, his blood pressure used to be consistently very high. Now, although his blood pressure is well controlled, his blood sugar levels sometimes spike unexpectedly, even with strict dietary restrictions.

Has anyone experienced something similar after a kidney transplant?

How's your BP after transplant?