From diagnosis to transplant and beyond.

[98percentoriginal]

Everything changed for me in March 2006. My GP sent some blood for tests after I visited him following a stomach upset, it wasn't particularly serious, but something didn't feel right and looking back I can't put a finger on exactly what it was. Two days later, I received a call from my GP asking how soon I could get back in to see him. It transpired that my blood samples set off all kinds of alarm bells ringing at the pathology department.

I was referred to the local general hospital, initially to the Haematology dept as the test results pointed to a blood disorder. After a series of blood tests, bone marrow biopsies and tests for conditions as varied as A-Plastic Anaemia and Leukaemia, I was given an ultrasound scan which picked up that I had a very enlarged spleen and all the signs of a diseased liver.

Referred to the Hepatologists, the initial diagnosis was that I had Auto-Immune Hepatitis.

I began a course of steroids and immune suppressants and for a while the disease seemed to stabilise. I was still able to run, and cycle, and even squeezed in a skiing holiday, even though the Haematologist had told me to avoid any contact sport as my blood probably wouldn't clot if I was injured.

However, over time things deteriorated, I had the first of two cellulitis infections in my leg, I started to itch, accumulated ascitic fluid, developed varices and had a mild but none the less scary episode of encephalitis. I lost a lot of weight, and most of my myscle despite forcing myself to eat as much, and as well as I could. Eventually, I turned from someone who had previously been extremely fit and active, into someone who could only take the stairs one at a time. I couldn't sleep properly because of the pressure of the fluid against my lungs, and was hospitalised during three separate bouts of Spontaneous Bacterial Peritonitis (SBP).

I should say that over the course of this deterioration, I had been put onto the transplant list, and received fantastic care from the staff at my local General Hospital and at the transplant centre.

At the transplant assessment, I was told by the consultant that I had a 50% chance of surviving 12 months without a transplant, and that was before the three bouts of SBP.

One evening, after 10 months of waiting, I received the call from the transplant coordinator to tell me that there was a suitable donor liver on the way, and that I should get to the hospital ASAP.

I went into theatre at 5am, and awoke in ICU about 24 hours later. For some reason I didn't register the airway pipes, drains and multitude of other tubes, and reached down to my stomach to make sure that the operation had actually gone ahead, i felt the dressings and somehow I knew that everything was going to be OK.

After about 36 hours I moved from Intensive care to High Dependency, and then a couple of days later onto the Transplant Ward. By his time I was already up on my feet and exploring, refusing to take the lift up and down the five flights to the cafeterias. I was discharged exactly 2 weeks after arriving. One of my treasured possessions is a picture of me walking my dog on the beach just two days after my discharge looking like a different person.

That was two years ago, and in that time I haven't had a single day sick, I returned to work after three months, slowly building back to full time, and I'm now back to running each morning, taking my holidays on he hills and doing everything that I could six years ago, albeit at a slightly slower pace and with an occasional nap in the afternoon, but maybe that's just because I'm 6 years older. In actual fact I'm better than I was back then, as all the little symptoms that I had never recognised, such as dry lips, persistent dry cough, oily skin, congestion, all disappeared before I even woke up in ICU, never to be seen again.

By the way, it transpired that I actually had a Biliary Transport Disorder and not AIH, and that it was probably always there, but just took 37 years to manifest itself. I'm told that it isn't yet classified, and as such doesn't have a name yet, but i'm looking forward to the day when I can find out exactly what it was.

If I post again I promise it won't be quite as long as this, but hopefully anyone else out there with a liver disease or waiting for a transplant can see that there is light at the end of the tunnel.

[Hidden]

Thankyou for your contribution, it does make everyone feel better I am sure. For many the journey is longer and has more stops.

Any comments on how you coped with for example itching would help, your posative approch is fantastic, but hides I think a brave journey!

[boo03]

What a story and thank you for sharing this with us, for us waiting treatment and operations its a welcoming story.

I am so glad it has all worked for you and you have a 'new life', it has certainly given me the kick up the backside I needed to face what holds for me. Thankyou.

[Liverlover]

What an inspiring post, thank you. Your 1st 2 paragraphs are very similar to my own experience. I was 37 when diagnosed and so far i have had some of the deterioration you described too, but am not yet as far down the road to transplantation. It's great to hear how well it's gone for you. Keep us posted.

[KarenRL]

Thank you for sharing your story. It's great to hear about someone who is doing so well post-transplant!

I was diagnosed with AIH/PBC Overlap (Stage 3 Fibrosis) in May of this year, at just 39 years of age. It gives me great hope, that if I ever have to face a transplant, the outcome will be positive!

You have a great attiitude and outlook - I'm sure that has a lot to do with how you are doing!

Take care,

Karen

[Hidden]

Dear 98percentoriginal,

Thank you so much for sharing your story!

You will inspire so many people!

All the very best of luck and good wishes to you for the future!

Kind regards,

Sarah Tattersall

Patient Enquiry Officer

British Liver Trust

[pear-shaped]

Thank you for sharing - we are very anxious and frightened of what is to come... not quite there yet for transplant, but if anything else develops for the worse, then this is the route we will be taking. It is great to hear positives, lots of websites are dominated by horror stories!

Thank you again.

[98percentoriginal]

Thanks for the comments. I was fortunate in having excellent care both before and after transplant from my local General Hospital and the transplant centre, and I am concious that having hopefully put the liver disease behind me, I'm speaking from hindsight and may be seeing things through rose tinted glasses, but I'm happy to try to offer any advice or support that I can.

Everyone's approach is different and everyone's circumstances are different. I'm sure there's no one right way to deal with having liver disease, just the way that works for you.

I found out I had liver disease about a year before the symptoms really started to show, and had time to get used to the idea before it started to affect me seriously. Others might suddenly find themselves in a position where they become ill almost overnight and before they know it are waiting for a transplant.

All I can really comment on is how liver disease affected me. How I dealt with it, I can only really describe as a combination of acceptance, compliance, optimism, denial and stubbornness, a lot of the latter. I accepted that I had liver disease, and that there wasn't much I could do to affect the outcome other than take care of myself and let the doctors do their work. For me, that meant there wasn't any point worrying, and if I didnt worry I could concentrate on other things, easy to say maybe, but that's me. If I was told that there was a 75% positive outcome and 25% negative, I fully understood the 25%, I just assumed I'd be in the 75%. Luckily that's how it turned out. I know I have the generosity of an organ donor to thank for that, along with some very skilled and dedicated surgeons, doctors and nurses. My role of walking the dog, checking the salt content of all my food and remembering to take my medication and resting seems small in comparison, but it's those small things that make all the difference and make the doctor's job of fighting the disease a lot easier.

I could list all the bad things I went through, but one thing I found when I had liver disease, was that it was different for everyone, some people had the same symptoms as me, others didn't have all of them, some had more and worse. A forum like this is great for people with liver disease, but don't spend time worrying about what might be round the corner or reading too many of the horror stories on the internet, as from what I've seen there is no guarantee what symptoms you may, or may not get.

Now, post transplant, I work, I exercise, I rest, I still watch what I eat, I don't drink of course, and the dog is enjoying much longer walks and runs these days. The doctors don't need to do much more for me now other than monitor me every few months and give me a flu jab each autumn. I'm responsible for my own health again now.

[paulivicky in reply to 98percentoriginal]

hi again iv just reread your origanal reply 2 me,im so so very pleased for you and family and ov course the dog, ov which i hve 2 jack rusels are doing so well, i just cnt believe how simular our symptons are or were,i feel like im riding on a rollercoaster ov emotoins at the moment,most ov the physical symptons im dealig with,just the bloody itching,iv every cream lotoin imaginable,being cold seems to be the only answer an we all know just how cold we realy get,i sometimes hve a bag ov crisps low salt but am wondering if that is not helping,keep up the good health.