Hi All! Haven't been on the site for some time again, as is my usual way, I've been through the mill again & as the broadband only works when it thinks it will it's all been rather too much effort! I still think of you all often though.
I've been really jaundiced since Christmas & the longer it's gone on the worse I was feeling. The itching, the loss of appetite, blah blah, I'm sure there are plenty of you who know exactly what I'm saying! The surgeons/radiologists had real trouble trying to get it all under control.
I've had the bile drainage bag on, off, on again, unfortunately that was pretty much the cause of my latest crisis - I'm feeling extremely fortunate to have reached my 51st birthday on Good Friday- it was a very close call this time.
I had to put the bag back on about 5-6 weeks ago when the drain started backing up again & I kept waking up wet..... YUCK! The output kept increasing & as I was feelling so rough I took my eye off the ball, wasn't really drinking as much as I should have been, or eating as I would normally do, I had a really dreadful week, started vomiting, then didn't want to eat, long story short, 3 saturdays ago I collapsed, literally, was quite unable to move anything, I managed to get myself sitting on the floor lying against the bed.
My Mum called the ambulance and I think the first paramedic on the scene thought I was joking saying that I couldn't move. Eventually the second crew arrived & decided to load me up & cart me off to A&E in Plymouth.
I was dealt with really quickly & soon appeared on the scene a delightful doc from the ICU. She told me she was going to admit me to ICU, at which I declared I couldn't possibly be THAT ill! She kept loking at me in a very strange way while I kept talking & asking questions, like something wasn't quite right. My cousin Keith & his wife Kathryn had come along to lend support in the mean time so I've heard anything I didn't remember, which wasn't much to be honest.
I was in the Hi-Dependency satellite section of ICU as I didn't need ventilating & was in there for 5 days. Such wonderful people - they saved me without a doubt. I had gone into renal failure along with marked cardiac changes, my potassium was very high & all electrolites right up the shoot.
I was discharged into the liver unit, my favorite consultant hepatologist (Jon Mitchell) back in charge. He told me a few day later that my sodium level of 1.7 on admission was in fact 'incompatible with life' & I should have died, they really had no idea how I'd survived, let alone kept on talking & asking questions! I told him I was made of pretty tough stuff & not planning on going away anytime soon!
Fortunately my kidneys recovered to almost full function in about 4 days, no dialysis or other invasive stuff, other than the usual stuff in the jugular vein - I have the 'vampire' style scars as my badge of honour!
I've now been home about 10 days, most of my coordination seems to have recovered although I'm still slow at walking, I have stopped 'tacking' now. My hands seem to have stopped their tremors, which is good cos I kept knocking things over! I almost got stuck in the loo yesterday whist at a good friend's 80th birthday party!There was nothing on the walls for me to haul myself up with - must remember to use the disabled loos for a while I completely recover!
Three weeks on, I'm feeling better than I have done for months, barring the slow walking etc. My jaundice is greatly improved, Billi Rubin 116 last week, the lowest since about october/November last year. Currnetly I am a drain bag free zone but am completely paranoid about the drain leaking as it caused soooo many problems whilst in hospital! I've lost about 5 & half stone (77lb) over the last 3 years & now have my hair really short so lots of people don't recognise me - which I find rather funny!
I'm now waiting to have an even larger drain put in, the radman that saw me 2 weeks ago was the one that did the surgical stuff last July - he told me we'd met - I knew I wouldn't have forgotten that face! But of course I was deeply unconcious at the time! No less than a Greek God! He said he'd been working in the States for a few months so if any of you have been fortunate enough to see Surgeon Commander Mac Armstrong (Royal Navy) I hope you enjoyed it as much as me! I believe my surgery last year was only scheduled when my surgeon knew the day he could get Mac to do his bit - Mr Stell was having no-one else do the job, so it seems he has a reputation to match his looks. And manner, extremely good at explaining everything.
So still 'no evidence of recurrence of the tumour', I'm 2 years post op now, which was a huge relief, a lot of the recent weight loss is down to malabsorption caused by the drain bag, it had caused almost total dehydration & caused some serious liver malfunction because of this. Hopefully it will carry on draining internally until the new drain is sorted & thereafter! In the mean time I'm back mostly with the hepatologists, who have a different view of things than the surgeons & at this point I'm not unhappy about that, they had the diagnosis sorted within days.
I guess Betsy & Bob are the only others I know of who have similar long term drainage problems - it seems it's a very rare complication of the surgery. Hopefully time will bring more experience & we can all be sorted out! Bod I truly hope your problems will resolve after your surgery. it is horrible trying to 'live' with all the attendant troubles.
I'm now anaemic, to add to the fun & games, but not seriously so, more nuisance value.
best wishes to you all, old & new members, I miss Kris & Teddy's repots dreadfully, despite not being on line, some of the bravest, most unselfish folk i have ever to fortunate enough to have contact with.