Will I have a change in life?

[YvesSanLeShake]

Just wondering whether having my transplant will make a significant impact on life? At the moment I can pretty much do nothing, I'm fatigued or Ill, I've a huge spleen so can't play contact sports - does anyone know whether I'll be able to go back and lead a normal life?

[AyrshireK]

Fingers crossed you get the 'happy ever after' we all dream that transplant will bring, but, there will be no guarantees.

It's major surgery and it will take many months for your abdomen muscles to recover & you need to get over the surgery and it will take time for your new liver bed in and start functioning properly. Your spleen should gradually return to normal size after transplant & there are actually transplant sport competitions with teams fielded from all the transplant units and even a world wide transplant games - last year or year before it was held in Argentina and UK sent bg teams.

Sometimes people don't recover from the fatigue issues (when my hubby was delisted they said that as fatigue was his most obvious major symptom even transplant wouldn't have guaranteed it would go away). Some people find the post transplant drug regime gives them other issues & there are other issues that just the surgery brings about.

However it goes, this is life saving surgery so if you get the call and the transplant it's because you are very poorly and without it you will have a limited life expectancy. There arn't enough livers to give to folks just to make them feel better. Transplant is all about saving your life .... if it improves matters alot going forwards then bingo you've won your happy ever after.

Fingers crossed you do get the successful operation and outcome every transplant patient would desire and you can resume living life to the full afterwards.

Katie

[Dorset123]

That was very well put Kate. Had my TP 3 months ago & it is a bit of a bumpy road to recovery. Still wound pain & still very tired but now manage about a 2 mile walk most days. Very frustrating that I can't do more but I am told it will take at least 12 months to get properly on my feet. But I am alive( thanks to my donor) and am fortunate that the light at the end of the tunnel is getting brighter rather than going out, as it was before TP.

Couldn't do this without my fantastic wife & family though!! Glass half full!!

[YvesSanLeShake in reply to Dorset123]

It's the waiting around that's driving me crazy, my partner is 23 weeks pregnant and I worry that I'm going to get a call around the time the babies due - not really sure how to approach it with the Dr, my points are low but it's down to the fact some of my symptoms are not taken into account whilst deciding my points, again frustrating, feel anxious

[AyrshireK in reply to YvesSanLeShake]

How poorly are you at the moment? you say your points are low so what symptoms are you displaying. How long have you been waiting so far?

If you arn't likely to get the call anytime soon (transplant co-ordinators and consultants should be able to tell you) then you could request a temporary suspension from the list for babies arrival time though if you are signigicantly poorly then obviously this isn't an option.

Obviously any liver that comes in will always go to the most poorly person that matches both the blood time and organ size and type. If you are not displaying end stage symptoms you are unlikely to be that most poorly person.

You should have a discussion with your T/P co-ordinators about list position and likeliehood of a call. My hubby was listed with only borderline scores, fatigue was his major symptoms as all varices dealt with. His bloods actually normalised following a procedure on his spleen and he was actually delisted after waiting 10 months for a call that was never going to come.

Wishing you the very best of luck.

Katie

[YvesSanLeShake in reply to AyrshireK]

What procedure did he have? Fatigue is massive for me - it really hinders my daily life and I can't even muster the energy for work.

I've clots around some of my veins - hypertension, some ad hoc bleeding, physically Caspar the ghost has a better tan than me, but my liver function is good, I tend to have occasional peritonitis like every other month.

I've got two other kids, one 4 and one 8 who lives with her mother, so time with her is so precious, I don't like to let either of the kids feel my illness, which can leave me wrecked for days.

[AyrshireK in reply to YvesSanLeShake]

I know you have biliaria atrasia don't you so the 'normal' scoring points are hard to come by, my hubby has cirrhosis due to Auto-Immune Hepatitis.

Fatigue is still his main symptoms together with sleep disturbance and issues to do with mild HE. Those symptoms didn't go away - if they did he'd be a happy bunny.

During his transplant assessment he was found to have several aneuyrsms in his splenic artery. He was listed once those were embolised but in doing so it killed his spleen so it is no longer viable and is no longer trapping his red blood cells or platelets. After the embolisation it near normalised his liver function tests (although they weren't wildly out), his platelet count rose from 22 to normal levels and INR time went to normal 1.0 . As a result he no longer scored the necessary UKELD of 49 so they couldn't keep him on the list so we've returned to watch and wait - sadly that gets hubby really down as he feels life is just wasting away though we do try and make the best of better days.

I hope you can get your life back on track sometime soon.

Katie

[YvesSanLeShake in reply to AyrshireK]

Totally understand his frustration- I'm at 49 too, I've got 3 clots and they've said I can only have a DBD donor, I need the full liver plus vascular set up, so will take longer than average to operate. But as you say I have BA so there are parts that i suffer with parts I don't which go against me on my UKLED score.

My spleen is 26" and I'm regularly in and around a platelet count of around 43 very rarely I get above 60 - doesn't help that if I go to A&E or Drs the look of panic on their faces and immediate referral to hospital and gastro are on the cards - they patch me up and send me off again!

[Dorset123]

I remember the wait very well. At Kings they would not say where I was on the list, & it also goes on your blood type to some degree. O tends to have the longest list & AB the shortest on average.

I am A so was in middle & in fact was only listed 2+ months before call...also do be prepared for a false call or 2, but it at least means you are near the top.

Good luck

[LAJ123]

YvesSanLeShake,

Kate has given you quite a comprehensive answer. So I'll simply tell you my experience of having a liver transplant.

I'm now 62 and I was given a transplant 14 months after being diagnosed with alcohol related liver disease. I began with not being terribly unwell, just a 'swollen tummy' - I thought, 'no big deal'. Then there was a near fatal spontaneous bacterial peritonitis with sepsis. Downhill from there on. My main problem was the hepatic encephalopathy, which is the toxins in the blood affecting the brain. During 2015 I was hospitalised for a total of 80 nights. The fatigue was overwhelming and I spent an awful lot of my time in bed sleeping. To make things just perfect, three months after diagnosis I was found to be diabetic, then began a regime of insulin injections 4 times daily. It was pretty unstable and difficult to control.

Now to answer your question.

Did a liver transplant make a difference to my life ?

On March the 10th 2016, after two weeks on the transplant list, I received 'the call' and was admitted to my transplant centre where I received a donated liver.

Within hours of waking, I could feel the strength flowing back into my body, my normal colour was back almost immediately and I could think clearly for the first time in a long time. The most amazing thing was, my diabetes completely disappearing. My blood glucose levels were normal and three months later a test showed my levels well within the non-diabetic range ( word of warning - not everyone with liver disease related diabetes will have the same result)

There were a couple of problems post op, a rejection episode which was sorted in two days and massive oedema. The oedema slowed down my recovery as it hindered my mobility. Finally, after 19 days, on my birthday, I was discharged home. Some leave much earlier.

Nine weeks post op I completed a 5k charity walk for my transplant hospital. Within three months people found it hard to believe I had been transplanted. Now, ten months after my transplant I'm, in my opinion, perfectly normal. I now feel better than I have for perhaps 20 years. Of course, being completely alcohol free might explain some of that. Kate mentioned the transplant games. I'm now a member of my transplant centre team for the 2017 Lanarkshire Transplant Games.

As mentioned before, the experience of liver disease, transplant and recovery process are as varied as the number of people with the disease and subsequent treatment.

I will never forget that without the support of Lucy, my partner and my family I would not have survived. So remember to care for those caring for you.

I hope my story is of help.

Jim

[RodeoJoe in reply to LAJ123]

My story is similar. When I was at my worst ascities, HE and jaundice were the worst symptoms. However for about a decade I'd progressively getting worsening symptoms of fatigue and a foggy brain.

I had my transplant and by the time I was out of icu it was like someone had flicked the on switch in my brain. I was out of hospital after 10 days. My jaundice and ascities immediately improved and was gone within weeks.

After 3 months I did a 25 mile charity bike ride and was back at work after 6 months. I've just signed up for a 38 mile ride in the summer. Transplant was 2 years ago, I've since bought a road and mountain bike, routinely cycle to work and back (20 miles) and am a member of our local mountain bike club. Also bought a kayak and come the summer will be out in that sea fishing.

I know I'm one of the lucky ones and there are many patients that don't recover like I did.

[Millie09 in reply to LAJ123]

fantastic read Jim .your journey is of one that has totally blown me away .I'm so pleased for you .and keep on doing what your doing .a true inspiration .thank you

[LAJ123]

PS - Spontaneous bacterial peritonitis is when the fluid accumulating in the abdominal cavity (ascites) becomes infected

[YvesSanLeShake]

My stomach is always swollen but they haven't said what it is- they hint that it maybe my spleen size trying to take up room - that's equally annoying. I hope I get through it as well as that LAJ123

[Millie09 in reply to YvesSanLeShake]

mine was too but it was all water retention in my tummy .Bloody painful too at the end .couldn't breath or sleep.hope that things get better for you you yvessainlashake 🙂