Waiting

[Denise15]

8 months down the line and still waiting for a new liver. Has anyone else waited longer and how did you to cope? It's driving me to despair waiting plus feeling tired all the time

[AyrshireK]

Sorry that you are still struggling with the wait Denise - as people said to you last month the wait varies in length with some folks waiting 2+ years.

My husband was removed from the transplant list last month after a 10 month wait - his blood results have improved to the degree that he no longer scores the necessary 49 UKELD scale points and therefore he had become ineligible for transplant at the current time. They are still saying it is when he needs a transplant rather than if but for us it will means his health will need to deteriorate further before he gets reassessed and relisted.

What is the history of your liver disease? What are your current symptoms ? If you arn't currently suffering from ascites, serious HE, cancerous tumours and you arn't in immediate danger of death then you sadly won't be near the top of the waiting list. Those whose need is the most urgent will always be ahead of those who have least symptoms. My hubby has chronic fatigue, sleeplessness at nights and mild HE symptoms - this hasn't changed since he was first diagnosed in April/May 2012 but his blood results are only marginally out of range but they say he isn't in immediate danger so he was never going to get the call during the 10 months of his listing. Fatigue in itself is not an indicator for transplant.

Your transplant unit should have a psychiatrist and maybe you could arrange to see him/her for help with your despair and worries over the whole procedure.

Best wishes to you Denise. Big hugs from Katie x

[Denise15 in reply to AyrshireK]

Thanks for your reply. I sympathise with your situation.i have had ascites and treatment seemed to get that under control since the drainage. I believe I proba am stable compared to some except encephalopathy. It's the waiting I find so hard it's diff to see a light at the end of the tunnel. I find myself hanging on every word the consultant says hoping blindly he will say next week or your next! I think I'm just having a low day as life seems on hold!

[AyrshireK in reply to Denise15]

I know that feeling, life being on hold. At least as you are on the list you are being very closely monitored and when your need rises so will your position on the list.

Hopefully when your need rises a suitable liver will become available for you.

We felt we had a light at the end of the tunnel when hubby went on the list but felt it was snuffed out a bit when he was delisted but we're getting our head round that and have to make the most of good days and write off the bad ones and I guess that's what you'll need to do though I know that is really difficult when you fell so 'grotty'.

Like us I guess you need to keep battling on & hopefully your liver arrives before your need becomes too great. We have to trust our transplant team that when hubby starts to deteriorate he will get his shot.

Love and best wishes, keep your chin up.

Katie xx

[Hidden]

Hi Denise, I agree, the waiting can be a drain on emotional resources, particularly if you are feeling unwell. If you are feeling better, however, it is good to get out and about. Because of travel restrictions when I was on the list, we explored lots of places in our more local area and that was good fun. At least, better than sitting in the house waiting for the phone to ring.

[jillian65]

Hey Denise totally sympathise. My husband has been waiting 11 months and we often wonder when the day will come. Try to concentrate on your nutrition so that you're 'operable' when the time comes. Chin up. Xx

[Denise15]

Today I had a call from addenbrooks - heart starts to race but it was just a dr wanting to talk to me about research project - you have to laugh at how your mind works but back to the waiting....

[Hidden]

😘😘😘 it is very frustrating - 9/10 months hubby waited !!!!! And we had 6/7 calls before the 'big day' - he was top of his list for a good few months !!!!! Not only does blood type have to match it is also weight (hubby was 19/20st when listed) - so we were waiting for a large liver with blood group B !!! Also the lists change constantly so one week you could be 5th and then 9th the following week xxxx I hope your wait isn't to much longer 😘😘😘

[SJR2104]

My stepmum Lyn has been waiting for 13 months now and she totally gets your feelings. All we can say is you MUST stay strong and keep well nourished- the call WILL come and you must be ready

Lots of love and good luck to you

X

[pear-shaped]

Dear Denise,

Like other replies - we too waited for a long time... My husband got tumours and once these were embolised did have a transplant on Christmas Eve 2014... He is back on the list as a priority and has been waiting around 2 months... It is important that you are not fixated with the phone - but easier said than done - everyone stops in the house when it rings and holds breath till we know who it is! Keeping busy is therapeutic so do try and focus mind elsewhere...

Yours truly,

Pear

[Denise15 in reply to pear-shaped]

Dear pear sorry your husband is waiting again hope it comes soon.keeping my mind off the phone ringing which is very hard but equally I am trying. Keep well x

[pear-shaped in reply to Denise15]

Hello Denise,

It is so hard - you have so many thoughts going through your head - is the phone working? I must check it a dozen times!

Hope yours comes soon too...

Pear