Coping with waiting on the liver transplant list

[Denise15]

I have been on the list for 7 months now and finding it extremely hard.. Any advice?

[AyrshireK]

Hi Denise, how is your health in general?

My hubby has now been listed since 3rd July of last year so is now approaching 10 months on the list. We currently feel like we are treading in treacle since we are getting mixed messages from our transplant team. We go along to every TP clinic appointment, scan, endoscopy etc. and we have consultants saying "You'll have your next US in April ............. if you haven't been transplanted by then" or "You'll have your next endoscopy in July ................if you haven't been transplanted by then!" Meanwhile surgeons we have seen keep having "hypothetical discussions" with us about possibly removing hubby from the list.

He obviously matched the criteria for listing back in June last year although blood results have always been very marginally out of kilter. Following transplant assessment hubby had to have some aneurysms in his splenic artery embolized and this lead to the death of his spleen. With the splenic infarction his blood results have improved - INR has improved and platelet count has risen from 20 to 250. The spleen is no longer gobbling up red blood cells.

This now means hubby doesn't match the criteria for transplant and they are saying the liver is currently "holding its own". As such although still 'living on the list' we more or less know the call is never going to come. They are on about monitoring for another few months to see if the little improvement has continued and they may then review the listing. They are still saying it is a case of when hubby will need transplant rather than if he ever will.

It is tough living with the restrictions of the 'list' and waiting for the call but if your health is anything like half decent i.e. you are not going to die of your liver condition anytime soon then that call could sadly still be some time away. They will not risk the health of someone who is doing ok at present. There is absolutely no guarantee with transplant. Yes we have all heard the wonder stories of brilliant lives post transplant and getting your life back & that's all of our dreams but sadly if you look round this forum you'll find stories which show that transplant isn't always the wonder prize we all hope.

If your health isn't too bad and you can manage it - what I would suggest is you make the absolute most of your good days - even if you feel rough afterwards. Hubby is lucky in that his only main symptom is chronic fatigue, sleepless nights and a bit of confusion, memory issues. He gets very down, feeling like his best years are passing him by whilst waiting and he just wants his life back. We have only been together for 5 years and married for 2 1/2 and he feels like we are missing out on so much that we'd planned to do together. He has given up expecting the call at the moment - I still have the hospital bag packed and the mobiles constantly charged but we try to get on with life as best as possible.

We do a lot together, we try and do a 20 minute stroll together each day as a minimum. Remember you need to keep your lungs and heart healthy so if you can manage to get out and go even short strolls the fresh air and exercise will help (and boost your mood) and you will be keeping yourself in the best condition possible in readiness for the op when it comes.

I don't know what else to add really, if you ever want to PM and share experiences rather than going public feel free.

Wishing you all the best, Katie xxx

[Hidden]

I had just over 6 months on the transplant list and found it quite frustrating and anxiety raising when I gave myself too much time to dwell on it. I was fortunate to be well (other than having a tumour) so was able to continue work. It was frustrating being tied to within 3 hours of Leeds (transplant centre) but we did spend time exploring our more immediate area rather than going abroad for holidays for example. I agree with Katie about keeping physically and mentally active and maintaining networks of friends and family. I hope you don;t have too long a wait. Mike

[Hidden]

This appears silly but worked for me. We went to all the countries we would like to but did it by visiting local restaurants. It gave a target and the experience of going away

The phone ill ring for us it was 2 am that was a night!!

Good luck

[provogirl46]

My husband waited 17 months for his transplant and we went out a lot and tried to enjoy life while we waited. We are fortunate we were anle to do that. He is now 3 months post transplant and still suffering from itching and is getting depressed about it. He was rehospitalized for two weeks because of rejection issues, out a week then readmitted for four days because of a leg infection. He has weekly checkups and blood work. We arevstill awaiting thr better quality of life, hopefully soon

[ancientadolescent]

I was on the list for 18 months before the call came and believe me it was well worth the wait. After a few months I decided to forget about the call coming and got on with my life as best I could. That was how I managed. I wish you the very best of good fortune!

PS My call came as a surprise on Christmas eve 2and a half years ago. It was like a message from god although I am not a believer