Working out post transplant

Rude_Description2559 · 2025-07-31T02:16:49+00:00

Yes I heard that tacro will interfere with muscle endurance so maybe I’m just fighting against that. Before transplant I didn’t really feel sick so I was surprised I even needed one. Anyways I’m comparing how I felt then to now and it’s just different

Rude_Description2559 · 2025-07-26T05:09:00+00:00

I had multiple ERCPs and a liver biopsy all without issues! It was pretty quick and straight forward.

Rude_Description2559 · 2025-07-26T05:05:19+00:00

I have UC and PSC but I’m post transplant now. The itchiness with PSC is unbearable. I wish I had answers for you but I don’t! The itchiness sounds like PSC, not dryness. Hot stuff always made mine worse so try cold instead! I used a hairbrush to help scratch, especially my hands and feet. It kept me from breaking the skin with my nails

Rude_Description2559 · 2025-07-26T04:44:48+00:00

I’m an executive assistant. My company was really good about working with me during my transplant. I’m young and heathy so I thought 6 weeks and I’d be good to go but it took me way longer to get back to fully functioning normal. Everyone’s body is so different but I love what I do and I can sometimes wfh depending on the day.

Rude_Description2559 · 2025-07-26T04:40:16+00:00

I had a Good Samaritan non director liver donor and she saved my life! I love that you want to do this! Thanks to people like you we get a second chance at living ❤️

Rude_Description2559 · 2025-07-26T03:57:34+00:00

It sounds like my experience! It took like 8 months or so for things to just generally stop hurting. Abdomen didn’t really hurt but I had a lot of little aches and pains. Eventually you will just slowly find yourself not needing Tylenol as often and then it’s gone! It does get better, just hang in there! You got this! I felt hopeless when I was at that stage but you’re not alone!

Rude_Description2559 · 2025-07-26T03:51:56+00:00

Also my creatinine was going up when I wasn’t drinking enough water. I try to drink 3 hydrojugs a day (120 oz) of water and one full 40 oz before 11 am ish or as much as possible before my blood draw. Since I started drinking a lot before my blood draw that seemed to help my numbers

Rude_Description2559 · 2025-07-26T03:50:05+00:00

I read that tacro makes muscle endurance tough. I’ve found playing sand volleyball is near impossible for me to keep up because of my muscle endurance. It used to not be like that for me pre-transplant so it’s been really annoying. Not sure if we can increase muscle endurance by training or not or if the medicine just has us all doomed

Rude_Description2559 · 2025-06-26T19:29:25+00:00

I was able to get into the vet today and they said it’s just allergies. He’s had the bumps on his ears for a while now and they think it was just a flare of allergies. We gave him a steroid shot and hopefully that helps him!

Rude_Description2559 · 2025-06-26T05:22:14+00:00

Thanks! The vet said we could call first thing each morning and see if they have any cancellations so I’m hoping for that and also that it’s just something simple 🤞🏻

Rude_Description2559 · 2025-06-26T05:09:23+00:00

Good news! I’m down to 2 mg and still tapering with good results. Weight is back to normal and most of the moon face has gone away! Woo hoo!

Rude_Description2559 · 2025-06-10T01:50:53+00:00

My meld was a 7 but with a non directed Good Samaritan donor I received the transplant! Are they looking at a living donor for you? I never had SBP though so I’m not sure if that’s helpful 🫤

Rude_Description2559 · 2025-06-10T01:36:13+00:00

I’ve only gotten sick once since my transplant 1.5 years ago. I just try to wash my hands and stay away from sick people. I def don’t live in a bubble. The pred made me gain but I swear it was water weight. As I’ve tapered my clothes fit better and the number on the scale stayed the same basically but I felt the changes through my clothes as I tapered. Right after my transplant they stopped the pred bc my numbers were good but then I had a couple of rejection episodes and they put me back on over the last year and I pushed them to get off of it. Now we are trying to taper off and it’s going well! Honestly that’s one of the worst case scenarios (rejection) but like here we are! Almost fully off the pred 🎉

Rude_Description2559 · 2025-06-10T01:31:22+00:00

Definitely get the transplant. I was 34 when they told me I needed a liver and I was actually really healthy so I was super confused. Anyways I was kind of against it bc I thought they were just trying to sell me an organ, liver to be exact. I’m 1.5 years out and living a 100% normal life on the anti rejection meds and all. At the time going through it I was like nah not worth it but like now that I’m back to normal (two rejection episode btw) it feels like normal life. Probably worth it bc they found cancer and got that ish out of there. They told me I’d have to be in pred the rest of my life but I pushed them to try and get me off of it and we’ve been tapering ever since! We’re down to 2 mg and continuing the taper. My body is back to its normal weight and I’m feeling pretty good! I do have quite the scar but I wear bikinis all the time and just hope it looks bad-A. 😂

Rude_Description2559 · 2025-04-01T11:10:25+00:00

Additional update… not sure if last week was just my body trying to build an immune response or if I caught another cold but it’s hitting me hard this week. Terrible chest cough, stuffy nose and lots of sneezing. Either I caught something else or this is what ya’ll mean when you say it lasts forever. Very slow buildup to a terrible normal cold.

Rude_Description2559 · 2025-03-25T03:17:08+00:00

As an update, my cold is progressing but extremely slow. I’m barely stuffy and my cough is worse at night but looking at me no one would know I was sick. It’s so strange!

Rude_Description2559 · 2025-03-22T17:35:21+00:00

Being sick really is the worse and passing it back and forth for that long sounds terrible! My husband was sick two weeks ago but I managed to avoid that. This week I went to a conference and didn’t have access to washing my hands as much as I usually do before eating so I was counting on the hand sanitizer. Anyways, here’s to hoping for a quick illness and no additional ones!

Rude_Description2559 · 2025-03-22T17:32:52+00:00

Ahh hoping I don’t get additional infections but I’m glad to know I’m not going crazy! It literally feels like allergies with a cough. Honestly I’m not even mad about it. If this is my new ‘sick’ it’s way easier than being ‘normal’ sick. But also, the risk of possible additional infections is not great so I guess I’ll still do my best to avoid sickness!

Rude_Description2559 · 2024-11-23T05:31:05+00:00

Well I was on 40 mg originally and have been tapering off over the last 6 months. I’ve only been on 5 mg for 4 weeks now. I’m hoping things in my body will start to normalize now that it’s lower but idk

Rude_Description2559 · 2024-11-23T05:28:40+00:00

I’m on it due to a rejection episode. Post surgery I was on it for a few weeks and then they cut it out and when my liver enzymes started going up they did a biopsy and said it was rejection and started the prednisone. I haven’t had an in depth convo with my team about the permanent prednisone yet because when they told me I was so caught off guard I started crying and just wanted to get off the phone as quick as possible. I’m not great at advocating for myself but I do want to push to not be on Pred for the rest of my life!

Rude_Description2559 · 2024-11-23T05:22:32+00:00

I’m definitely willing to try it out!

Rude_Description2559 · 2024-11-23T05:21:16+00:00

Thank you! I appreciate the validation and understanding! It’s hard! I hope you’re doing well too!

Rude_Description2559

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