British Liver Trust

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Update

Hi all

Thought I’d give an update as am now 14weeks post TX .

Wow this is some journey from getting that call to actually starting back at work today part time to start with.When that call came I was very nervous but also very happy and then guilt all within minutes of each other but it was the call I needed.Now 14 weeks later my tablets are getting lower am down to 9 a day strength of tablets are getting lower but my strength is increasing daily.Am telling you this as I know when I was on the list of course I wanted the call but I was also petrified of the op and the waking up in icu,well the op you really know nothing whatsoever about and upon waking up 36 hours later I had no pain just felt light headed and relieved.Its a long recovery and the meds can make you feel yuk but the feeling of achievement you get every day as you get stronger is amazing.

Constantly on my mind is my donor & family to whom I will be eternally thankful to and my letter which am finding hard to write as I can’t find the words that do them justice will be on its way to them shortly.

Keep strong everyone

Huw

34 Replies

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Wow!! You are doing so well, you've shown such strength of character. Your friends and family must be so proud of you as I'm sure everyone is on here, it must be such a big ordeal. I can understand how you feel about your donor family . All these people are so brave as you all are on here. I'm not at the transplant stage yet but my consultant said I will need one one day

You have all been so kind to me and have helped so much and put my mind at rest when I've been so worried about everything. I'm luck to have such wonderful people on here as well as friends and family. Love and hugs to you and your family

Xxxx

Thanks Lynne very much this site has helped me enormously I totally agree the people although poorly or supporting someone poorly are all amazing

Take care

Huw x

Wonderful news. Wishing you all the very best for a continued recovery. Well done.

Well done too to the transplant team.

What a gift from the donor and family.

xxx

Thankyou Laura for your kind words

Huw x

You seem to be doing really well indeed. My partner is just over 2 years post xplant & I still find it amazing that he is so well. Healthier than me probably. The words for the letter to the donor family will come & bring comfort I hope. We sent one post op & another on the first & second anniversary. Keep up the good work of staying well as that is also testament to the donor.xx

That’s great your partner is doing so well in fills me with great hope for the future I really didn’t think I’d feel so well after such a short time

Hi Huw,

Seems your doing really well, good to hear. I’m a couple of months ahead of you but I haven’t gone back to work yet. I got a car and started driving again and had a weekend away in Merseyside watching saints lose which was a big step to go away.

It sure is a journey that we all go through.

Will

Well done on driving it’s a major step Southampton had a good result at palace

Well done Huw you’ve done amazingly well. Your family and friends must be so proud.

Really glad you are doing so well. There must be so many mixed emotions; it's a huge life changing event not only for you but of course for your family and the donor's family. May you continue to recover and I hope you'll soon be fully fit and enjoying life to the full. xx

Glad it’s fine. I was amazed how I had no pain either. I found going back to work daunting but it was fine.

Thankyou everyone for your kind reply’s ,

We have been having wee breaks and were up in dornoch for a holiday.The transplant team said it was a good idea to have breaks but mapped out all the hospitals for us🤐.Keith is 6 months post transplant and we are hoping to go abroad in march 19.Nothing booked but isnt it great to be able to look forward again.

Hi Huw,

glad you ate doing well. Hubby reaches his 4 month post TX next week on the 12th. As he is a chef he is not able to go back to work just yet as still gets tired easily & at the moment he can feel every ache in his joints - this week it's the left shoulder joining the game

His tx team have told him its the effects of no longer being on any steroids which he was taken off 6 weeks ago. Have you had any joint pain?

Hi Adelou

I’ve probably come back to soon but my employers have allowed a phased back to work 8-12 I do ache especially legs and arms but I can manage with paracetamol,my consultant was ok with this as long as I don’t become extremely tired and unwell,am only 2 days in and definitely know I’ve been doing more but it’s always going to hurt at first, we are all different regards recovery and I was lucky enough to be quite active upto surgery I was in fact working on the Friday and had call on the Sunday.

Good luck

Huw

Well done buddy. You’re a superstar getting back to work already. Glad to hear things are going so well.

It’s a serious emotional rollercoaster.

All the best mucker.

Thanks means a lot

The book is very good am just over half way through👍

Well done Huw, seems like you are doing better than your football team 😂😂😂.

On a serious note it is important that we share the good and the bad on here as so many people are all at different stages of illness, recovery, pain, heartache etc. We are all tied together by an invisible bond, and brought together to share our experiences to help others and hopefully occasionally give them hope. Your story is just that, one of success and the fact you are going back to work so soon is testament to your strength of character. I know I am always pleased to hear how you are getting on, so keep doing what you are doing.

Ray

Hang on a minute we’ve won 2 aswell as losing 2 lol

This site has been a massive help to me and all I want to do is try and give a bit back,we do hear a lot of bad news how people are suffering whether it’s through their illness or those they’re caring for and of course loss it’s all an unfortunate part of the various liver associated illness we suffer from so every bit of possitive/good news I’d like to share I realise there’s a long long way to go but I will take every bit of good news that comes.I apologise for my grammar but am not an author like identity lol! Am about half way through his book and will be getting back to it friday evening when donnas out

Take care

Huw

Thanks so much for sharing your news Huw.

You're doing brilliantly and we send you our good wishes.

Trust1

Well done u going back to work that’s fantastic ! We’ve still not wrote letter and think about it all the time . Need to get head round it all x

Thanks debs it’s hard trying to find the right words but getting there.

How is Karl doing? Have they managed to help regards pain

I know just don’t know what to say on paper at mo! Yer Karls been swimming and gym today . Thank god they told him he needs to get more active lol and he has. Got betterpain killers . Lovers doing great x

Gym! That’s a massive turn around so pleased for you both hope he’s not lifting weights thou

No only light weights on arms and bike ! Think he’s realised he can’t just sit there thank god ! X

Good to hear his got a bit of his mojo back

Thank god ha ha . And he’s been agai. Today . So maybe he’s realised ya can sit there doing nothing . Probably got sick of me moaning at him lol 😆 xxx

Can’t not can x

Hubby hasn't done his letter yet either but mentioned it the other day. It's finding the right words like you say, but also the right to send it. We decided after the 6ontharl as that is the next milestone in his health getting better (all things going well as they currently are)..dont want to send it on the anniversary date

I know it’s so hard xx

Hi 1football,

So good to hear that you are not only doing well, but improving and able to see the improvement yourself.

Wishing you continued good health, Huw.

Mary

Thankyou mary

Hi Huw

Wow - so well put. I felt almost exactly the same, now 7 weeks ago.

Thanks for that, it makes you (me) realse we all go through the same trauma...

Miles

🇧🇧

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