After going through all the stress of the assessment we are pleased Micky has been put on the transplant list but at the same time have so many mixed emotions about it all.Would welcome nayones advice & support with this and what the future may hold.Laura
My husband has just been put on the tr... - British Liver Trust
British Liver Trust
I was the same, worried that I wouldn't get on the list, then over joyed when I was told accepted, then reality kicked in about how serious the transplant operation will be. I am now awaiting the phone call.
I wouldn't worry about transplant at all! It's completely fine, and so worth it Life post transplant is truly amazing and the meds are a doddle!!
If you'd like to see how good you'll be post transplant, check out my channel on youtube (WritaholicDK) where I talk about my liver journey.
You will be fine, as will your husband Mickey. Until then, just be supportive and make life as good as it can be. Prepare your surgery bag and just do whatever you love
Hi Dawn, great youtube entry. Glad it all worked out for you. I was diagnosed with NASH a few months ago & hopefully can delay progression with diet etc. Good to be able to look at transplant as positive thing if I ever need it...Anyway..taking time to learn guitar!!!
Hi Dawn we have both watched your youtube video,it has given us a lift just listening to you and your experience,glad you are doing so well you look great compared to when you were so ill it is certainly inspiring for us!
Best of luck in the future Laura & Micky x
It is easy to understand your concerns because there is so much uncertainty about when you will get a transplant. My waiting list time was about 5 months (10 months from initial diagnosis of cancer). In some respects, I was very fortunate because I never suffered any severe consequences in terms of health: I did not really feel ill from the cirrhosis and the tumour. The wait, however, causes some stress along with the frustration of not being able to travel more than 3 hours away from the hospital. My wife and I did, however, make as much of the local area as we could and we visited places right on the doorstep that we had ignored for years!
As far as possible, we tried to live a normal life but knowing that I could be called in at any time. I hope your wait is tolerable and that you find the reassurance you get from this site is helpful.
I am 10 years post transplant and very well indeed. Your transplant centre/hospital should be able to give you some support, see if there is a support group and make good use of it - all the best and hope the wait isn't too long
Thankyou all for your advice & support it means alot,it is so good to hear from others in similar situations & makes me feel positive when I hear of peoples lives after transplant.
I was fortunate to have a transplant a year ago and I am doing well. I had to wait a year having regular random blood tests before being placed on the transplant list,then I was on the list for 18 months before the operation. The time you are on the list can vary depending on several factors, your blood group for one. I have known fellow patients who have received s transplant after only a few weeks. I wish you both the best of luck and do not despair,be patient and try your best to maintain your husbands health. One final message,no alcohol.
just wondering how bad is your husbands liver, because at the moment I am waiting for a call to see if im on the transplant list or not have been through the assessment they say my meds are not doing anything anymore and my liver is getting worse im 28 and have had auto immune hepatitis since I was 16 I also have cirrhosis. but I do feel fine I had a fluid build up alright but that was it but I am hoping to get on it but cos I feel so good I probally wont
Hi Ireland 123 my husband has end stage liver disease cirrhosis brought on by alcohol over the years whereby he has to have fluid drained regularly,his meds only work a fraction of what they used to do,he is well somedays and others very tired, when balancing his need for transplant it was as with everyone looking at how ill you are now whether you would beable to recover from the operation and the quality of life now and afterward,also the results from the assessment,I wish you the best of luck please let me know how you get on.Laura x
I had a transplant 1 year ago as I had AIH for 25 years from the age of 21. I was borderline for the transplant list and waited two years. My life is transformed. I never knew how unwell I really was until I reflect on how well I am now. I wish you all the best - the transformation to my life and that of my family is incredible .....beyond belief.
I wish you all the best.
Hi my partner had transplant is April after being on list 12 hours. It can happen that quick. Easier said than done but don't put life on hold waiting for phone to ring it will drive you crazy. Enjoy life as much as you can . Speak to liver co ordinators with any questions and a positive and stubborn attitude helps. Everyone's experience is different. Talk to each other because the receipent and their partner and family all have different emotions and thoughts. It's scary but the benefits are amazing. My partner s liver was damaged in car crash 4 years ago and finally needed transplant in April as bilirubin was 276 instead of< 25 . He recovered quickly and hasn't looked back. You get a lot of support on here too. Hopefully the wait isn't too long. Keep us posted x
Thanks for your advice Tracy, you are right its scary but we are feeling more positive now that he is on the list main aim at the mo' is keeping Micky as fit and well as possible ready for the big op. its good to hear your partner is doing well & hope he continues to do well, it gives us more hope when we hear of peoples experience etc on here,will keep you posted,thanks again Laura x
Hi Tracey, hope you both well. Tracey's right the call can come quick. I had a transplant same day as Tracey's partner and we've both been fine since and keep in touch. It also helps being in the most common blood groups as I was. I'm definitely doing better since the transplant but everyone's different and I take app 10 pills a day to help with organ rejection. First few months after are hard and on the family and partners , my wife took two months off work to care for me as you really need help. I'm back at work full time now and go to Birmingham every 8 - 10 weeks or so for outpatients clinic.
Thanks for this glad you are doing well,my husband has a common blood group too (O) , I hope he doesn't have to wait too long,main thing is he is on the list now so we just have to wait and keep him fit and well in the meantime.
Hi, I am new to the liver side of health Unlocked, (was on PBC site for 12 months) Just returned from Newcastle Freeman, I am awaiting telephone call to confirm (or otherwise) if I am being placed on list, rather expect to be offered a place as my ukmeld (is it?) score is 54.
What an emotional time, we feel so pleased to be in what we see as safe hands (we had to get ourselves up there to appointment due to a catalogue of poor help from NHS) We have passed the baton onto the team and we are awash with relief. Sure, The fear of facing a long and serious operation can bring us back to reality, but I am prepared in my head, and even looking forward to my TP & "new life"
Hi,I hope you get confirmation soon that you are put on the list,My husband has cirrhosis under the care of Freeman hospital and was put on the transplant list on the 5th Dec 2013 we are still waiting patiently for that most important phone call.The doctors & nurses are great at Freeman and instill confidence in us everytime we have appointments.So best of luck to you.Laura x
I was on the transplant list for 18 months before I received the most wonderful gift of a transplant. During that time I was in and out of hospital but my wife and I never gave up hope. My operation took 10 hours and I was so ill afterwards that I was placed in an induced coma for two weeks followed by hallucinating for a further week. Now, 1year on I am part of society again and doing well. I send this message to you to never give up hope. If I succeded so can your husband. I believe that I was on the list for a much longer time than others,indeed I have heard of some who received a transplant after only a few weeks. My best wishes are with you and your husband.
Congratulation on getting on the list, I have had two lots of assessments over the last two years and still can't get on the list. My specialist has now said I might get on the list early next year. I have had cirrhosis of the liver for 5 years. It is so frustrating .
The first hurdle has been jumped, your hubby is on the list. From now on you can expect to get a bit jumpy every time the phone rings, especially in the late evening / early morning. You may have a false alarm, I had 2. It's frustrating but I found it really helped when the time came for real. I think my personality changed while on the list, I wasall doom and gloom but I was fixed in the end, just in time in my case. Try to relax a little and be assured that everything possible is being done to find a suitable doner, I was on the list for nearly 12 months and it flew by. The wonderful professionals know what they are doing and will always do the right thing. Take care and remain positive, good things can and do happen. 🤞
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