To all going through liver disease and transplants

[Dan68]

Hi i am 2 years post transplant as of April 7th.

I had hep c lying undetected since a blood transfusion given in 1986 after a motorcycle accident when i also lost my spleen. The hep led to cirrhosis which eventually led to liver cancer.

I am 46 now and also was in shock when told i needed a liver transplant. I was working right up to the day of my call to go in to Birmingham QEHB, I live in Northamptonshire but was referred to Birmingham- they have been brilliant.

Not having a spleen caused concern for the operation and the previous year i had undergone treatment for hep c which is similar to chemo.

I to was bloated and jaundiced but the day after the op my eyes were back to being white not yellow.

I was off work 9 weeks and returned to work slowly at first but within 2 months was back on 12hr shifts as a Production Manager.

I haven't had 1 day off sick since and lead a relatively normal life and play golf regularly- it does age you though- people say i have aged and am definitely slower than i was, but after being given 3 months to live without a transplant im grateful for everything.

Lot of meds to take initially but small price to pay.

After the initial transplant you feel like you will never recover but you do and i was called a Moderate to High risk for the op due to previous medical history.

Good luck to you and everyone going through this and remember your families are going through this too.

Danny

Reply

[Brummi]

Hi, This is a so true message. I am now awaiting assessment for a 2nd liver transplant, as for the QE they are as you say brilliant. Keep getting stronger every day and please keep posting, a site like this needs people like you.

[Dan68 in reply to Brummi]

Hi Brummi,

Why are you having a 2nd transplant?

Ive been very lucky and mine hasnt been a problem from day 1. Took a while to get the prograff etc right but otherwise all been good.

I was back at QEHB last month for ct scan and blood tests as normal.

[Brummi in reply to Dan68]

Hi, I am one of the patients you may have read about and had my liver branded. It also seems the arterys have constricted and stemmed the blood flow to the liver and caused some bile duct blockages. From the time of my transplant in June 2013 untill the November of that year I had a bad time. But hoping to get it sorted out now...Glad to hear you are doing well..

[Dan68 in reply to Brummi]

Hi Brunni, I remeber hearing about this. That doctor was in charge of my team and spoke to me after the transplant although he didn't actually do mine. How did you find out the had branded your liver?

[Brummi in reply to Dan68]

A member of the transplant team saw him do it and made a statement actually named me in his statement.. I have also been told officially by the QE..

[Dan68 in reply to Brummi]

So you need another transplant due to that or other issues??

You must be due compensation. Is he back yet as he was suspended .

[Brummi in reply to Dan68]

The surgeon resigned so its now out of the QEs hands. QE told me I can now sue him for assult. As for anything else they will not talk to me about it. I will pm you with more info as there is more to the story...

[Dan68 in reply to Brummi]

How do you pm

[provogirl46]

My husband had his transplant January 29 and it is encouraging to read we will get through this. He was in the hospital 4 1/2 weeks, home 3 weeks then back in the hospital another 2 weeks. He is still very itchy and is told that he will subside. He does not sleep well and has no energy. It seems he is back to his pretransplant energy level. We had 3 good weeks after the transplant. He goes back to the liver outpatient clinic for weekly checkups and we will see what his blood results are. This has been one roller coaster ride. As his caregiver the ups and downs are very difficult and some days it is difficult to keep myself together. Long walks help. I get angry with him as he is not doing anything and then feel guilty.

[Dan68 in reply to provogirl46]

Hi, it's very hard to get motivated and he will be without energy very easily. I found it hard to get going and was always drained but you just have to put the effort in.

You will both get there in the end but it's not an easy road and I found I needed people to push me otherwise I would of done nothing. 1st year while the meds settle can be the hardest.

[Hidden in reply to provogirl46]

Bless you xxxx I feel exactly the same 😢😢 hubby had transplant May 2014 and he was desperate for it - he had quite bad HE for a long time - we had 6/7 calls (can't remember now my brain doesn't work properly yet)

Once he had transplant he was in Hosp for 4 weeks and then was sent home with a 'wound infection' - to cut a long story short - his wound is still healing 😟😟😟 he had about 2 weeks of feeling great !! We know that the Hep C is back but I didn't realise he would feel so ill with it - I often have a little rant at him and then like you said - I feel guilty afterwards !!! We have just stopped our 'weekly' trips and are on monthly (hooray 😊😊) but they have just asked for more 'ultrasound and MRI scans' ??? And maybe a biopsy ?? I will patiently wait for whatever comes next 😆😆😆😆 Hopefully it will be something good xxx

[Dan68 in reply to Hidden]

Wow sounds like you have both are having a tough time. I feel for you both. I was lucky that I didn't have any complications and was sent home 6 days after transplant.

[susieanna]

Excellent and a very hopeful story for those going through such an illness; i love Golf, but cannot play! a great and relaxing activity; a pity Justin Rose couldn't catch up with Speith! May you and all others in similar situations, live long and prosper, as Mr Spock would have said.

[pear-shaped]

It is so uplifting to read a positive post!

Thank you and best wishes...

Pear

[Dan68 in reply to pear-shaped]

Thanks

[jenniwren]

Thank you for posting this. I am on the list and nervously waiting! I'm still working and hope to continue working until the day of the call... it's what happens after that is worrying me. I don't do well when I'm not able to work so the thought of spending a matter of months off is a bit scary! Thanks for the reassurance

[Painting42]

Oh wow please to here u on the mend that must have been a right blow telling you that .

I couldn't imagine how u must have felt when you think someone giving you there bloody to survive only to find out,

That u contract hep c through someone giving you bloody that's Terrible.

Please to here you fine now.

my husband got cirrhosis of the liver through taking tablets for Arthritis.

Only thing he's had all test done for a new liver but he told he not fit to give transplant as he got other ailments two which was last year so they have good as said he's only 6 months to live now.

which is very hard at minute .