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NB Phoenix

Member Since 22 Oct 2006
Offline Last Active Jun 01 2014 08:58 PM

Topics I've Started

NB Phoenix absence explained

01 May 2011 - 04:59 PM

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.


The System Works........ Sometimes.

11 July 2010 - 03:30 PM

My boat safety certificate runs out on the 29th August as does my BW licence, but we are taking the boat to the IWA National on the Thames as from the middle of August. Wanting to get everything sorted before we left so I rang a BSS examiner on Sunday (4th). He said no problem I can get an inspection done up to two months before the old certificate expires and he could do it the next day. (Monday 5th). Apart from a missing gauze in the fuel tank vent it passed. (He even waited whilst I popped down the road to the chandlers to get a new vent.) Tuesday afternoon I rang BW and spoke to a very helpful young lady who asked if the examiner had given me the blue copy of the BSS certificate? This he had done as he was due in hospital on the Monday afternoon for a triple bypass operation and would not have had time to send it off until he was back on his feet. BW suggested I post them the copy but as my old certificate had not yet run out she could still issue my new licence. After taking a few details and a load of money she said would get things moving. Low and behold on Thursday morning (8th) the new licence arrived in the post!

So in less than five days I manage to book and pass a BSS examination. Apply to and receive from BW my new licence. Wow. :lol:

Painting Roses and Castles

21 February 2010 - 06:55 PM

Thanks Phil and Megs for a great course. Loads of canal painting history and some great advice on the art of canal boat painting. A most enjoyable way to spend a weekend.

May I be the first

31 December 2009 - 10:14 PM

May I be the first to wish everyone a Happy Christmas for 2010 ;)

HAPPY NEW YEAR TO YOU ALL :cheers: :cheers: :cheers: :cheers:

Its Groundhog Day

02 February 2009 - 09:04 AM

Hope today will be a good day for you. Just in case you do it all again tommorow...........

Groundhog day