Waiting transplant : Hi all I am... - British Liver Trust

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Waiting transplant

Pitmaster1 profile image
26 Replies

Hi all I am currently awaiting a liver transplant and my mind won’t stop I barely sleep , my wife worries constantly ( bless her this horrid disease has turned our lives upside down) I’m just reaching out there

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Pitmaster1
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26 Replies
Ewife profile image
Ewife

Good Morning, Totally get how you and your wife are feeling.....my husband has cirrhosis and has been listed for transplant since January. Its been tougher than either of us ever imagined. We've had 2 false starts, but both times the donor ended up unsuitable. My husband and I, and our 3 children are all reacting and coping in different ways, some more obvious than others. Sometimes I feel like everyone else's lives are going back to normal, but we're stuck in limbo, can't go forward or backwards - just waiting with fear, nerves and hope for the call from the transplant team. Covid has also been cruel to us, fortunately none of us have had it, but with my husbands health deteriorating, my father-in-laws terminal illness, my Mum has developed severe heart failure...the list goes on......all difficult situations to manage when your isolated and sheilding. However, I like to think that we will emerge from this a close, strong, family unit. We've been hit with just about everything, and if we can survive this, we are strong people that can cope with whatever life throws our way!!! We just need to get the other side of this operation........hanging in there, trust you and your wife can do the same!

in reply to Ewife

Remarkable. All the very best to you all xxx

Pitmaster1 profile image
Pitmaster1 in reply to Ewife

Hi yeah since December 2019 life has been hard we have had everything thrown at us possible including the death of my mother in our home last July and no appts due to Covid , loss of friendship circle ( seems to happen when people don’t drink alcohol any more both me and my wife are tee total I have been since December 2019 my wife since March 2020 and we seem to have lost contact with people we thought were our best friends and that’s really hurt my wife as she feels she has no one to talk too) we both cope we have to you know , but we just want our lives back on track and go out and enjoy life together and hopefully see the light at the end of this long journey

The very best of luck to you Pitmaster x

Pitmaster1 profile image
Pitmaster1 in reply to

Thank you Laura thank you very much x

taar profile image
taar

Hi Pitmaster1-- I am also on transplant list, have been on for 1m. So far I am managing, it is early days for me, but I am not fretting. I too have noticed that my brain won't switch off and my sleep can be very hit and miss. Best wishes to you and yours. taar

Pitmaster1 profile image
Pitmaster1 in reply to taar

Hi Taar , yeah I’ve been on for two weeks now seems a lot longer lol sleep patterns all over the place along with all the other effects of liver disease some days I feel so bloody useless and can’t wait for it all to be done , also very frightened but I need this

Yellowsydney profile image
Yellowsydney

Hi there, I was on the list for 8 months but know some who've been listed for 3 years. For the first couple of months I was terrified every time the phone rang but after that I put it to the back of my mind and just got on with living. THE call finally at 4am.Talk to your transplant coordinators about any anxiety you have they are always on the end of the phone and have dealt with it all before. Try to rest and stay healthy it will help with your long recovery after transplant.

I'm 4 years post transplant due to NASH cirrhosis.

Hope you don't have too long to wait.

Hilary💚

Pitmaster1 profile image
Pitmaster1 in reply to Yellowsydney

Thank you Hilary , I think it’s just the anticipation and the waiting the not knowing when is very unfamiliar isn’t it

George_2017 profile image
George_2017

Hi Pitmaster1, I am 3 years post-transplant, and was one of the very lucky ones who, once listed, only waited a week and 1 false start.

Before finally betting listed and transplanted I went through two years of what you are going through, to the extent I thought I was going nuts (HE didn't help). After getting referred to the Scottish LiverTransplanr Unit in Edinburgh, I found out that a lot of the problems with sleep weren't helped by my body not being able to retain all the proteins and nutrients needed, and was advised that when I go to bed to eat something immediately before, and to keep some biscuits, and in my case as I was underweight, a mars bar at the side of my bed.

When I woke up, eat something, which then allowed me to sleep for a bit longer. It worked most of the time, even if only getting me a few extra hours. I was also put on protein drinks that I drank one of just before bed.

I didn't know that the lack of protein being retained would cause this problem, and my local health team never pointed to it, but thankfully the SLTU did.

I think it even helped a bit with anxiety as I had a few more hours sleep.

Pitmaster1 profile image
Pitmaster1 in reply to George_2017

Hi there george thanks for the reply I currently do have a protein shot before I go to bed and try to have a snack most nights , but I’m finding I sleep more in the daytime and recently I’ve started dropping off early evening after dinner for half an hour, as others have said it’s about not letting the anxiety takeover

Steak profile image
Steak

I was extremely lucky when I read other people's stories. Only waited a matter of hrs after going on list to getting the call and the liver was a match. I can only imagine what it's like to be waiting a long time or to find liver isn't suitable. I have a rare blood group so maybe that helped. Maybe the best thing to do is take each day as it comes I know that's easy 4 me to say but worrying won't help you just try to get on with ur life and hopefully u won't have to wait long take care and good luck and stay healthy.

Pitmaster1 profile image
Pitmaster1 in reply to Steak

Thank you steak and I’m keeping healthy and my exercise regime up making sure I get as many steps ina day as possible and doing my HIT Execises

Kettl profile image
Kettl in reply to Steak

Do you mind me asking what blood group you are?

Pitmaster1 profile image
Pitmaster1 in reply to Kettl

The most common one I believe

ANITARICHARDS profile image
ANITARICHARDS

Hi I had an emergency liver transplant in 2010. Wishing you well. Any questions I will do my best to answer.

Pitmaster1 profile image
Pitmaster1 in reply to ANITARICHARDS

Thank you , what changed in your life after the transplant , how long before you felt like you again ?

ANITARICHARDS profile image
ANITARICHARDS in reply to Pitmaster1

Unfortunately I have had quite a few issues since transplant and already had other health problems before needing transplant. So things been rocky for me. I have hear regarding many other people that have had no issues after and are back to their normal selves fairly quickly. Dont think I can be taken as a good example of this Unfortunately. Did change me, was such a big issue that it was bound to have an effect I think. But please don't take my experience in this as the norm as it isn't.

Pitmaster1 profile image
Pitmaster1 in reply to ANITARICHARDS

Oh sorry to read that , separate issues or related ? ( or none of my business) well I do hope you get on the right road to regaining your health

ANITARICHARDS profile image
ANITARICHARDS in reply to Pitmaster1

Some separate, some related. I have high blood pressure since transplant which I didn't have before and the transplant need was due to autoimmune hepatitis which I didn't know I had before. Will remain on steroids for life due to this. Currently a stricture in bile duct has returned so awaiting news regarding what they are going to do about it. Also have chronic kidney disease now due to medications. Beforehand I already hand athritis, hypermobility syndrome and fibromyalgia and also underactive thyroid, asthma and psoriasis. Bit of a mess my immune system. Think majority sre usually must better off after transplant though. Thank you for positive thoughts.

Pitmaster1 profile image
Pitmaster1

Hi there I’m quite lucky my drive ( well my wife’s drive when the call comes) is only 30 mins across Birmingham to Queen Elizabeth hospital , it’s great to hear your life is going well and also putting my mind at rest a little thank you

Flowergirl24 profile image
Flowergirl24

Hi. I was listed October 2019 and then along came Covid. The first call came May 6 2020 at 1.00 am in the morning but because I had a one off spike in my temperature and after a 5 hour testing for COVID the result was negative. It was 50/50 team split decision and as it has to be 100%, I was sent hone to be called back May 19th, again 2.00am. They suggested up to an hour to get yourself together, have a cup of tea & arrive at the hospital within 2 hours - my time & distance from Wiltshire to the QEH Birmingham. I’m now almost 14 months post TP. The anxiety and disturb sleep is quite normal in this situation. It’s natural to worry and think the Call will come any time and it will, when your least expecting it! Best wishes CK

Pitmaster1 profile image
Pitmaster1 in reply to Flowergirl24

Hi there flower girl , glad you’re doing well post TP yeah it is a bit of a case of making sure phone is on loud and checking throughout the night , ever since diagnosis I haven’t slept well , I guess I’m lucky in the sense I’m only 30 mins away fro QE thanks for your best wishes

Chrissy2k profile image
Chrissy2k

You are lucky to get a transplant, I’ve been told that I need one, but I’m not well enough and it’s doubtful that I would survive the anasthetic. I’ve been given a death sentence.

Pitmaster1 profile image
Pitmaster1 in reply to Chrissy2k

Hi there Chrissy sorry to hear that when I first went for my assessments I too was told I was too weak for a transplant and had an appointment in 5 weeks time during that time I upped my protein and worked hard in making sure I got 10000 steps in a day kept a diary and took this with me for my next appointment and This time they put me on the transplant list , is this something you could speak about ? Do you mind me asking how old you are and how weak you are , did you do the grip test first time I could barely do 20k this time I managed 35 k

Chrissy2k profile image
Chrissy2k in reply to Pitmaster1

Hi, I’m 59, very weak, I have osteoarthritis in my spine which is extremely painful, I’m also diabetic and have really bad peripheral neuropathy which makes me a bit unstable on my feet, I’m also losing my sight. I have never been a drinker, my liver problems are genetic. When I go out I need to use a wheelchair, but I have a wheeled trolley that I use indoors, I also have a lifeline pendant that I can use if I fall or need help at night when my husband is at work. I have hepatic encephalopathy and hepatopulmonary syndrome on top of everything else. If I were a dog I’d have me put down!

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