Post tx: Hi all Well it’s coming up... - British Liver Trust

British Liver Trust
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Post tx

1football
1football

Hi all

Well it’s coming up 9 weeks now since TX and everything going pretty well,I’ve found that I get some really good days then some not quite as good as in that fatigue kicks in and ache especially across my scar and start to think have I overdone it or pulled something but guess it’s all down to rehab.meds being lowered all the time and off the prednisolone now which is great.still haven’t wrote a letter of thanks to my wonderful donors family yet and feel guilty about that.

Wishing you all well

Huw

X

17 Replies
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You are probably trying to do too much too soon. My partner was just the same after tx 2 years ago. Just take each day as it comes & you'll find more strength with each day. Also, don't be too hard on yourself regarding the letter. The time will come when you feel ready to write it. XX

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in reply to h0b0

Hi

You've had massive surgery and are doing really well. Take each day as it comes. I know it's easy for me to day as I'm not in your position but you are doing really well. Love to you and your family. Lynne

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Hi Huw I suffered with terrible guilt after my transplant, I felt so ashamed and unworthy. I even told this to the surgeon who performed my transplant. The said that he was glad to hear this as he then knew that his skills and that of the team were not in vain and that their efforts would never be abused or wasted. I told him of my promise, never to knowingly do any harm to this second chance of life. He said that this was thanks enough for him as he felt my sincerity.

That letter to the donor family is the hardest letter you'll ever have to write. I wrote, mine but sadly I never had a response, which didn't help heal the feeling of guilt.

That is in a way, why I want to try and reach out to others and try and talk of the dangers of Alcohol abuse. Trying to help others is also helping me, as I feel this second chance was granted to me for a reason.

I think the best thing you can do when your fit and well enough is to go out there and embrace life and live it to the full. New liver, new start.

Good luck. (buy a lottery ticket, you never know).

I always had a nap in the afternoon. It’s saturday pm and guess what I’ve just had a nap! These days it’s only at weekends. So glad things are ok. I was told to expect pain or aches there for up to a yr. wasn’t that long though.

Isabelle XX

Hi there,

Glad that things seem to be going well for you.

At the end of this month I'm taking part in my second British Transplant Games, this time in Birmingham. Perhaps this could be something for you to aim for ? My first games, in Glasgow were 18 months post, so you have plenty of time to get fit. One of our team was six months post and she won a handful of medals including golds.

As for 'the letter.' I'm waiting until I'm confident that I have made a complete recovery, have competed twice at the games and returned to my previous career. In short, I do think nine weeks is a bit early as the most you can say is that you are alive and grateful. Perhaps you should wait until the recovery period is over and you have achieved personal milestones that you are proud of. Nine weeks will be at the very beginning of their grief and time needs to pass before they may be ready. for your letter. Some may disagree but I have given it a lot of thought and this is how I will deal with my own 'letter.'

Keep up the good work don't overdo things.

Jim

Hi love Karls the same . He is doing more now but his scar hurts so much he said . Also the tremors he hates them . Hoping they arnt permanent and down to meds! We at hospital tomorrow so fingers crossed he’ll get some answers x

Hi Huw, do not overdo it. Take your time, settle into your new life and take plenty of rest. The scar will eventually settle down, just be mindful of it, and don’t try to be superman. I had a resection, and then they attempted my TX and there’s only 1way in. 2nd time it was quite tender but now the scar has faded quite a bit. As to the letter I think you have been given some really good advice. Too soon and the donors family will not be sure how to cope with it whilst they are still going through the grieving process. Although my TX was aborted I had thought long and hard about how long afterwards and the content of the letter I would write. I won’t get that chance now, but am still here squeezing every bit of life out of my old liver I can. Fatigue comes with the territory and if tired will have a nap, failing that 9pm is a late night now. Hope you enjoyed the World Cup and are looking forward to the new season with baited breath.

Stay strong and take care

Ray

Hi Huw, my hubby is about a week ahead of you in terms of tx recovery. He is fully now off his steroids, & his hair is started to come back on his body bit while affecting his scalp.

He too has days of feeling guilty when tired, but I tell him not to be daft, as if he over does it, it could take longer to recover.

He doesn't get pain just some itching around his scar like you do when a scab heals, no more tremors or of there is they are not noticeable anymore.

The best thing is that he is now able to get a good nights sleep.

He hasn't done his letter yet either, but like I said to him The donor family need their time & that maybe it is a little to soon.

We are counting the days until 3 months so we can get out a bit more and do a bit more.

Take care

Adele x

Debski
Debski
in reply to Adelou

Hi love curious of what tablets your hubby on as Karls still getting really bad tremors he’s 10 weeks tomorrow since transplant xxx

Adelou
Adelou
in reply to Debski

He is on envarsus as the adeport was making his potassium too high, aspirin, can't remember his other one at the moment. Will check when we get in

Adelou
Adelou
in reply to Debski

The other one is azathioprine

Debski
Debski
in reply to Adelou

Thank you Karls on different ones than them he’s on adoport and mycophenolate thanks for your reply xxx

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Hi

I'm 18 months post transplant and occasionally get the odd day when I don't feel 100% so give it some time, you're doing great! As for the letter, I've been thinking about it since day one but honestly I've got so many thoughts but no idea how to put it down in writing... Still planning on doing it at some point.

Best wishes

Klodian

Hi

! am 4 months post and this thread has helped me a lot!

I have just stopped the prednisolone and the aching makes me feel dreadfully fatigued.

I have down days, it appears to be after the drugs are changed

I realise that I have been incredibly lucky, a transplant in the nick of time and all has gone really well, but I am struggling with how to feel, the guilt of the donor as Richard talks about, we have done a number of fund raise events and managed to donate a reasonable amount of money as the result of the unbelievable support of friends and strangers alike, from the taxi driver that would not take his fare and insisted it was donated to Liver Department while my wife was travelling to see me in hospital, to friends donating just to support the wonderful work the hospital has done.

The only question is how to feel myself, a am a stiff upper lipped Yorkshire Man and still I think I need to really cry and thank every one for giving me my second Chance.

Another part of the journey I guess

In summary you keep on going I am sure it will all get easier, you have a lot to take in and I have slowly realised the having a transplant is just a part of the total journey.

Sorry for rabbiting on

David

the following link might be of some help:

donorfamilynetwork.co.uk/

Jim

Huw,

So good to hear that things are still progressing well for you.

Wishing you continued good progress.

Best wishes,

Mary

Hope you are well. Please let us know. We are all thinking of you and your wife at this difficult time xxx

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