Hello one and all.
I’m sorry for the long period of absence from the forum and the VP but I’ve had a few problems!
It all started last August when my stomach started to swell. I went along to my GP who informed me I was retaining fluid and sent me of to hospital. There they inserted a tube to drain the liquid. 12.5 litres in about 5 hours, so almost 2 stone lighter I left hospital the next day, only to return a week later to have another 8 litres drained off. After loads of tests (including, CT scans, ultrasounds, blood tests, bone marrow biopsy, gastroscope and a liver biopsy.) I was told I had liver problems and interrogated on my drinking habits. Which for a boater was not that high but I was told to stop drinking, which I did. I was prescribed a load of medication to help control things, including laxatives to flush out the toxins. I had to wait until December for some of the test results to come back and during a routine gastroscope visit I was told of the diagnosis.
I have “Alpha 1 antitrypsin deficiency disorder”. Which is an extremely rare hereditary disorder, not drink related, that causes the filtration system within the liver to block and is causing it to fail. So on the 2nd January I was back in hospital for a 2 week assessment to see if I was suitable for a liver transplant. In early February I was placed on the national transplant list under the team at Addenbrooke’s Hospital in Cambridge. I was told the average waiting time for a transplant is around 4 to 6 months but can be longer. As things progress, the fluid which is secreted from the failing liver and collected in my abdomen, has now breached my diaphragm and moves up into the right hand side of my chest. This causes my right lung to collapse on a regular basis. To control this a permanent drain was inserted into my chest and I go back to Addenbrooke’s every 4 days to have my chest drained, this can be anything up to 5 litres each time.
Apart from the inconvenience of going to hospital twice a week I am actually in good shape. I feel fine as long as the fluid is drained off regularly and I’m able to do most things I did before all this started. I have had to finish work as a firefighter though, but I was due to retire soon anyway.
The biggest drawback is the limitation of using the boat. It is moored at Napton in Warkwichshire. We did get a chance to go out for a few days last week and enjoyed the fantastic weather and also saw Bones at Braunston, but I have to stay within 2 hours of Addenbrooke’s Hospital 24/7 in case the the call comes to say they have a suitable liver.
All the best and have a drink on me, I'll stick to lemonade for a while.
NB PhoenixMember Since 22 Oct 2006
Offline Last Active 22 Nov 2014 11:18 AM
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