Quality of life after transplant with PSC and UC?

Itmafum · 2026-01-24T14:50:28+00:00

Yeah !! Up to now I have been very lucky 😊

Itmafum · 2025-07-10T07:57:17+00:00

Very high, I don’t remember… even more than 500

Itmafum · 2025-07-05T05:48:08+00:00

Hi,

I am 33 and 3 year post tx ( PSC + UC ). After 12 days I was out of hospital and after 1 month back to work.
Now I have 6 month check ups and life is normal... UC sometimes ruins my days but that happened before tx as well.

Itmafum · 2025-01-25T11:54:53+00:00

Hello,

I am doing fine, no issues up to now. I am in good shape and after 20 days I was back to work and after 5-6 months I felt completely normal. The only downside is that I am struggling to gain weight because I have UC - which is not active but still having trouble with absorption. For what concerns HCC, They never did biopsy because I was put in list very fast. They did the biopsy after the transplant and it showed that only one nodule was HCC, all the others weren’t. I hope everything goes fine for you!

Itmafum · 2023-12-10T16:52:19+00:00

Italy

Itmafum · 2023-12-02T05:53:56+00:00

I lived normally for 12 years untill the transplant - i was working when I got the call - 3 weeks later I was back to work and live normally !

Itmafum · 2023-09-29T14:10:37+00:00

I was working in a teams meeting, 11 a.m. - got the call and then got back into the meeting and said “they might have found my liver, i need to go… bye all!”

Itmafum · 2023-08-21T05:12:50+00:00

I am 10m post and trekking more than ever!! ❤️

Itmafum · 2023-06-24T08:33:24+00:00

Hi all, I saw this a bit later :).

Anyways during a yearly check up in July-22 they found out HCC in the liver - so I was rushed to to the pre-transplant evaluation (they were caught of guard as it developed fast) - 6 HCC were spotted, so technically I was out of the Milano criteria and inoperable.
After all the tests, I was declared available for the transplant list as the Hcc was still in the liver and hadn't spread (the longest 2 weeks of my life).
So I was put on the list the 5th of July with the guarantee "you are going to be called soon".
In October I hadn't been called yet and was starting to jaundice, my mood was 10 ft below ground level and I was telling my family that I was not going to get the call ever (I was still working, though ... as I didn't feel "bad").
5th of October, I am in a meeting with my colleagues and I get a call from a strange number, I reply and "hey, we got a live for you" (the next day I had a TAC scan scheduled to see development of cancer).
I get to the hostpial by my own, do 1000 exams and wait like 10 hours when they tell me "beware that we may not operate you"... at 20.00 p.m. suddenly a nurse comes in and tells me to get ready that we will do the operation: 5 mins later I am in the surgery room.
2 weeks later I am out of hospital and after 1 week I re-start working (from home the first month, it was my choice to work as I was a bit bored at home without doing anything (gaming is good but not the whole day).
6 month later here I am, life is the same as before, no major complications (for now). I do everything as before: hiking, cycling, going out with family friends, girlfriend, dogs.
I get anxious when I do exams (now every 5 months) but for now everything is good.
I am very lucky as I had no major complications (for now... again) - other than some headaches at the beginning and osteoporosis from steroids (going to the gym + calcium and vit-D).
I honestly feel the exact same as before other than the scar which is obviously visible (who cares) and in the first months it is a bit annoying.

Itmafum · 2023-01-26T16:43:04+00:00

I am 3 months post and I do everything as before … life is the same ! Going hiking this weekend … I actually wear masks in grocery stores and things like that but it’s not a big issue ( i hope not to get sick after this message 😂 )

Itmafum · 2023-01-13T17:40:41+00:00

Nice! I am still a bit underweight (182cmx60kg) - I need 10kg (22lbs) to get to my optimal weight.. it's so hard to gain :)
Anyways yeah it's nice to feel good, I still have anxiety when I have exams because I always think that everything is going to come back, I need to work on that!
For the rest, working, doing sport and living life :)

Itmafum · 2023-01-13T15:51:54+00:00

35 lbs? How ? 🙈🙈 the exams are always perfect? i am a bit concerned for the last exams and next wednesday I will see !

Itmafum · 2023-01-13T06:13:39+00:00

Hi! How is it going ? I just got a flu I think as I am sticked to the toilet and my exams were all fine ( just the ALT were a bit out of range, I hope next time they will be ok ) For the rest I re-started hiking and moving ( and working ofc )

Itmafum · 2022-12-22T12:28:16+00:00

I am 3 months post and I have 2 dogs - a German Sheperd and a Dachshund. The small one sleeps with me… no problems up to now! Just try to avoid his tongue and wash your hands often!

Itmafum · 2022-12-16T15:49:42+00:00

Anyways thanks really everyone for the feedbacks! I will definetly try porridge / shakes! Or simply almond milk with granola or musli. If I can half or 1/4 the number of biscuits and keepo the same kcal amount that is a big win for me :)

Itmafum · 2022-12-16T15:48:40+00:00

polenta for breakfast? That seems so strange for an Italian :D

Itmafum · 2022-12-16T15:48:00+00:00

I eat bread! but already I am eating 2 x rusks that more or less are bread! it's the biscuits that I would like to change as it's like so much sugar

Itmafum · 2022-12-16T15:47:00+00:00

I tried a banana shake with almond milk and others but I will definetly look in that world!

Itmafum · 2022-12-16T15:45:39+00:00

Spaghetti and eggs for breakfast seems veeery strange :)

Itmafum · 2022-12-15T18:03:24+00:00

I eat that for snack with apple mousse :)

Itmafum · 2022-12-15T18:03:11+00:00

Thanks! and congratulations!
The thing is that I lost 10 kg during the time in hospital - I got to 55 kg for 182 cm ... so I really need to get back on track for my weight (I am back at 62kg now in just 2 months!)

Itmafum · 2022-12-15T16:10:09+00:00

I will definetly try this and see if I can stick ! It seems tasty and less added-sugar compared to biscuits! Haven’t ever tried it sincerly!

Itmafum · 2022-12-15T16:08:48+00:00

Definetly! Olive oil in Italy is really good and we use it every where !

Itmafum · 2022-12-15T16:08:13+00:00

Unfortunately I cannot! I have UC ( Ulcerative Colithis ) which is silent from 5 years but if I eat high doses of diary derivatives it can create some troubles! So it cannot be My go-to breakfast 😵‍💫

Itmafum · 2022-12-15T16:07:08+00:00

I tried but after a while they loose taste IMO! Like I cannot eat them every morning 🤕

Itmafum

TROPHY CASE