Transplant update: Hi as promised... - British Liver Trust

British Liver Trust

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Transplant update

1football
1football

Hi as promised another little update

It’s now19 days post transplant and doing really well been home 5 days and been back to clinic once where they take blood and generally check you over consultants happy with progress although weight still coming off 12 kg in 17 days good job I ate healthy before op it’s so important to help yourself before such a big op. Meds still make me feel odd and I have the shakes but they’ve lowered my steroids by 5mg so beginning to help.I was then told about my old liver and the HCC the MRIs were showing 3 tumours but on biopsy arter transplant I actually had 5 and one was a cluster which had attached itself to a vein ( not good) so they now say that there is a possibility that the cancer could of got into my blood and return to my new liver they do stress that at the moment am cancer free and every chance I will remain so but had to tell me as it’s still a possibility I will need further treatment,they will monitor me closely via blood and scans so if anything does materialise it will be caught early. I feel extremely lucky to of had my new liver and will be eternally thankful to my donor who I think about so much and of course all the medical team who are treating me

That’s all for now good luck everyone

Huw x

28 Replies

Glad to hear you are doing well, tough news on the tumours though. Being post transplant myself i can tell you that the Consultants pull no punches and if there is a remote possibility they will still tell you. I had similar revelations post op, but in the end it all came to nothing and now 11 months in, best I have felt in 20 years. Did lose a lot of weight, about 30kgs total. But to be honest, not a bad thing. Managed to keep it off. It was stressed it was very important to retain a healthy weight and not regain. Enjoy your bonus points and like you, many thanks to the donor and the skills of the medical teams at all levels.

Great to hear that you're doing well. It can be a long process getting to full fitness so just try to be patient, you've done the hard bit. I used to have to tell my partner to stop "Trying to run before you can walk".xx

Hi Huw, glad you are home and the tumour issue will be looked after by the team and hopefully will come to nothing. I lost about 15kgs after my aborted transplant and have now regained that weight but keep a close eye on it so my current weight is maintained. Keep us updated on your progress and enjoy the World Cup.

Ray

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You should be so proud of yourself. Keep up the good work. Take care Lynne

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Well done Huw, I'm glad to hear your on the mend. It all takes time. You'll now have realised just how emotional this whole experience has been. You will never forget that donor, and that scar you now proudly carry will be your reminder of their sacrifice and gift. These feelings are quite normal, so don't worry. It's good to feel them, it means your alive.

Good Luck Huw.

1football
1football in reply to Hidden

Thanks Richard,it is very emotional I’ve found myself getting upset at all sort of things and that really isn’t me and find am so up and down on the meds but like you say am alive and know these feelings will improve over the following weeks. Thanks again

Huw

Trust1
Trust1Administrator

Wishing you a continued healthy recovery Huw.

Best wishes

Trust1

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Well done for recovering so well so far and keeping everything crossed that the cancer doesn't show it's ugly face.

All the very best

Laura xx

Glad your recovery is going well so far. Hope the cancer doesn’t come back Your emotions are normal and will settle down in time. Hopefully onwards and upwards.

Hi Huw

Great news on your progress.

But bit of a bummer regards to the cancer part, but your in safe hands, your consultant will be on the ball if nreds be ,just take one day at a time, just concentrate on the noe.

Your going to be emotional for many reasons Huw , all part and parcel of any transplant journey.

Keep up the good work and great advice regard to diet pre tx

Best wishes. Linda

Hi my hubby was never diagnosed with hcc. Only found at transplant.Over 19 tumours but now still clear after 6 and half years.

Good luck

Should read 10 not 19 tumours

Pleased to hear you are progressing well. 🤞that the cancer does not return, but at least your team are aware of the possibilities and can monitor you closely. Good Luck. JX

1football, extremely happy for you, it's lovely to hear of such a lovely outcome. Can I ask how bad you was before the transplant? My brother has been given a year to live. He's been told the cancer in his liver is now in his veins. Do you think he's too far gone to have a transplant? Thanks in advance.

1football
1football in reply to Melita17

Hi Melita,

Thankyou for your good wishes.

I had the 3 tumours found via MRI as a result of hepatitis c which I never New I had for over 35 years which also gave me cirrhosis the hep c was cleared via the new wonder drugs(no side effects) but the only cure for me was a transplant which I waited for 17months to be honest I was one of the lucky ones as in my LFTs were pretty good and I tried to help myself as much as possible by eating as well as possible and keep moving I could actually work albeit part time mostly but my tumours were getting larger.when I had my call 20 days ago I was well and lucky enough it went ahead. I was only told about the other tumours last Wednesday and they didn’t say it had definitely got into my blood just that it’s a possibility so my case is very different to your poor brothers in that it hasn’t been found yet and they are looking for it.I really can’t comment on weather your brother can have transplant as we are all different with different conditions the only people who can help you are your liver consultants so please ask for a full run down if options. I so hope you get some encouraging news and wish you all the luck in the world sorry I can’t help anymore but if you ever want to talk please contact me via this wonderful site which has helped me greatly

Huw

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So happy for you .It's great they removed your bad liver and have given you a fresh start of life.The best gift ever .look after yourself and get better soon.i hope you will recover all your health and have a brilliant life ahead of you .😁😁😘🙌🙌🙌🙌

1football
1football in reply to Mandy1983

Thankyou Mandy lovely message from you as from every one on here such a wonderful site

Mandy1983
Mandy1983 in reply to 1football

Most welcome hun,it is a supportive site I think too xx

That good news I don'often make any comments but I have been following your progress I'm 13 month down the line so understand what your feelings ,take your time you will get stronger every day .Best of luck

Thankyou it’s nice to hear from people like yourself who have been there and done that it fills me with even more positive thoughts

So pleased how well you are doing ❤️ You should be very, very proud of yourself. It is a lot of hard work after your transplant! You just don't get the gift of life and carry on.... it's hard your body has been through so much and has been given all these new powerful meds to adjust to in order to keep you alive. Be proud of yourself how you handle each day with the ups and downs and the side effects of the meds. The emotions are good, you are human. It's good to think about the donor and the donors family. I felt like a specimen for the first year to be honest. They tell you if you get through the first year without rejection and any major problems your survival % goes up. So I lived practically my first year taking the meds, dealing with the side effects, getting weekly blood work then 2 week blood work to now monthly blood work and clinic visits. As soon as I did my blood work I waited impatiently to view the results on line. I just could not wait to see what my levels were and wait for the call from my coordinator on next steps. - I do the same thing now 16 months post transplant. Sorry for the long message, it makes me happy to tell you this(my experience). I remember crying and my husband asking me what's wrong what can I do? - I was crying I don't know why I'm crying I don't know what I want. He just gently gave me a hug. I will stop now - be proud of your journey! You have so much to look forward to and plan and spend time with family. All of this will sort its self out. Just think here, now and the future. I wish you nothing but good health and happiness. I'm following you! Be well x.

Well am getting overwhelmed with these lovely informative messages your journey like others are really helping me understand, in some ways for me am finding it harder and more draining dealing with the meds rather than the op but possibly am not appreciating just how big a procedure we go through to get this far I’d like to think I will be able to help others when they get to this stage because it is all a lot to take in and that’s on top of the euphoria of being given the gift of life.Like you I have found I get quite tearful and when I least expect it and that really isn’t me at all Donna will tell you that (hehe)but just can’t help it.i have had a 5mg drop in steroid so far and hope to get another Monday after clinic when I hope to have staples removed I think that will make me feel better again. Really happy your doing so well and your message is not to long it was very helpful

Huw

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Thank you! I'm happy to share my experience. You will for sure help others in their journey!!!! Yes, I felt the same way 100% the meds are a kicker. It gets better I promise - it's just time you need. It's time to get your meds adjusted. Don't be alarmed if they increase for a short time and then they will decrease. You have nothing to worry about they are watching your blood level very carefully. As you noted, everyone is just a little bit different. Oh yes getting your staples out - it is a mile stone.... for me they took out every other staple not all at the same time. And small tape on the staple that came out.

Every step of the way remember how far you have come and the beautiful future you have.

As they say information is power.... this site is amazing. The kind, supportative information that everyone is sharing is nothing but extrodinary and has helped me so much. Just knowing that someone else has gone through or is feeling like me lets me calm down and know I'm not alone. I'm here anytime you have a question or just want to chat. Take care. X

Once again many thanks

Huw

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Hi

A little milestone for me as yesterday the staples came out YEH!! Bit sore but that will go soon am sure

Good luck everyone

Huw x

Wonderful news!! You will be doing sit ups in no time... hahaha. Very big milestone with many more to come. I'm so happy for you Huw. X

Thanks hope

My biggest problem is still the meds about an hour after taking them I start to feel very odd almost like I can feel them being pumped around my body and head and then the shakes it eases off after a couple of hours but some days I just don’t want to do anything

X

You are sensitive to the meds. It's good you know it's the meds. It's ok if you do not want to do anything don't! Actually I think it's your body telling you to rest because it needs it. Your doing wonderfully and keep it up. How often are you doing your blood - 1 a week? It's all a BIG process.... look how far you have come 😊

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