Liver Failure, my journey………………..
Where do I begin?
Number one has to be the thanks a most understanding wife in the world and a Birmingham QE2 without who’s support I would not have made it through.
This open letters aim to add one persons experience to hopefully help others on a similar path.
The diagnosis
In the beginning what actually triggered the cirrhosis will always be an issue, but failure of my business and an increase in alcohol and then a hernia operation left me with 2 years of a life changing set of events. I was not a really heavy drinker but one of the keys to why I am still here writing this is a total abstinence of alcohol, which will be ongoing for the rest of my life
The first stage of recognition happened with a low blood platelet count when I needed a hernia operation, this led to the first bout of confusion and holding on the excess fluids (Ascites) and dramatic weight loss.
My first admission into hospital came as a result of my hernia wound busting open and the loss of a lot of fluid into the bed late at night.
I carried on then loosing weight and many people realised that I was very ill, the confusion was frightening for my wife more than me, I was unable to work my phone get dressed or remember who was the Prime Minister (That may have been a good thing!). At least as confused I was relaxed and not in pain
Added to this was the up and down of weight , and became a person that seemed to always be in hospital ward or the A& E department. When up to this point I had never really had a day ill
The next stage was to fix the oesophagal varices, this was done in out patients and while it is not high on fun things, the Northampton team were very supportive.
The continued confusion was a problem without warning up till Christmas 2011 (What Christmas)
The tiredness and itching carries on!
Over the 14 months I was on the transplant list I was called in once at 1.30 am but the liver was not suitable so home again.
But I have recently been taken off the list as my liver is function is better and appears to be in remission. How this feels I have yet to be able to find the words to explain.
Surprising facts
How many so called friends I have lost !
How stressful not being able to travel more that an hour from Birmingham is
How on earth my wife has put up with me!
Mad cravings for food, Bananas and Tomato soup, I was buying in bulk!
How many people turned out to be saints, and how difficult it is to say ‘Thank you’ because they will never really understood what they did to help, they are just good people.
I cannot work as I used to, but want to help others, but don’t know how (Yet)
Being accused of being an alcoholic and getting rejected because it is assumed to be the cause.
Now I don’t drink being excluded from the ‘Mens’ club
The confusion started long before any one was aware especially myself.
I am thankful every day and feel I have learned more about what’s really important, so have gained more that I have lost.
In my case it was the silly things that were obsessions rather than worrying about dying.
I don’t remember the proper medical terms, so please forgive the lack of details. What to me as I feel better is the emotional side is difficult, especially as part of the problem is constantly being tired.
I got up this morning positive and decided on step one, a support group to cover Northampton MK and all areas surrounding, if you want to help or have a chat please contact me on david@spherepartnership.co.uk
Here we go again
Most know the story. Something I can't figure out.
Should I ask for more tests or being assessed for a transplant?
Six pack after transplant- possible? :)
help with changing hospitals
