Another set of holes

I'm back home having been released from Vascular Ward L5, Bay 1, Bed A on Saturday at around midday. I was glad to get out of a very strange place populated by odd men, mostly from Bury St. Edmunds it seemed, talking in broad Suffolk accents about their diabetes and the amputations of legs and toes they'd just suffered. So I was busy dry retching in the corner while the old boy opposite, Frank from Bishop's Stortford, "Oi'm 82!!" strained loudly to have a shit into a potty while lying on his bed, weird John from Bury screamed as the nurse applied a vacuum dressing to his recently amputated toes and Trevor, a belligerent ex-shop steward (trade union official) with seemingly very limited intelligence made his best attempt at fairly cruel banter to all three of us when not explaining how 35 years of mis-managing his diabetes had led to his leg being taken off below the knee, and then how he fell on the stump and had to come back in to get it fixed.

I guess in a sense this was a fascinating insight into both the broad swath of humanity out there but also into an area of medicine I'd never really encountered before, but it would have been nicer to have been around other people who'd had Upper GI surgery so the nurses were more attuned to my needs.

As Vicky has said it was pretty horrible but is getting better fairly rapidly day on day and I'm feeling less pain, less sickness, and am managing to eat a little more each day. I think it'll be ok. And I'm no longer refluxing, which is quite pleasant and at least showed the surgery did it's job.

...and as well as the long armpit to armpit clamshell scar and the four drain holes from transplant I am now the proud owner of another 5 scars in my stomach.







You will note where the chest wig ends just below the scar from transplant (not even visible now through the hair!) thanks to them shaving the operation area. Luckily I am like Esau, an hairy man, (Genesis 27:11 - look it up), which means I won't inherit the kingdom of God (only smooth skinned men appear to do that) but it does mean it'll grow back and the scars will disappear in the forest.

P.S. Thanks for all your lovely comments and support over the last few posts. And Jess, thanks for your reply on the CF forum too - if you had this done with CF lungs then I'm in serious admiration. I had a bit of sputum the few days after this even with tx lungs and coughing it up hurt! I've no idea how I'd have managed before tx.


- Posted using BlogPress from my iPhone

Definitely not fun(do)

So, there's been radio silence from us for a few days. Will has been having a rough time - I can't believe people ever have this operation as a day case. He's had a lot of pain, a LOT of nausea, hot and cold flashes, dizziness... The whole thing has not been the walk in the park the docs tried to say it would be (though Will never believed them anyway). He's on a random vascular ward, because that's where there was a bed, and no one is interested in fundoplications, calorie intake or transplants. There's been a cannula and IV/oral meds saga, explosive diarrhoea (sorry), an unexpected catheter requirement and a whole load of dry retching. He seems to have turned a corner today, perhaps, and is planning on coming home tomorrow, armed with paracetamol and oral ondansetron (sp?).

To add EXTRA fun to our lives, I've got the first proper cold I've had for about two years, so haven't been to see Will for a few days. The plan, however, is that tomorrow I will wake up miraculously healed, decontaminate the house, change the bed sheets, not cough, and go and get Will from Addenbrooke's. We then embark on the next phase: Calorie Maximisation From Liquid Foods While Experiencing Constant Nausea and Stomach Pain. Ah, grant us strength to get through the days and weeks to come...

So, what's a sad and cold-ridden young woman to do on a Friday night when her husband is having a miserable time in hospital? The answer seems to involve pyjamas, series 3 of Sex and the City and a box of chocolate eclairs... Do women just want to be rescued? Ha!

- Posted using BlogPress from my iPad

It is done

I am sat with Will now. The docs are happy with how the surgery went. He has some shoulder pain. This is referred pain caused by gas in his stomach that was used to blow it up during surgery. He has a PCA with fentanyl and some IV paracetamol and the pain is reasonably well controlled. So far not much pain around the stomach or incisions, but am sure that will come. He is managing small sips of water but swallowing is tricky. Ciclosporin soon, which may be interesting given the horse pill nature of the tablets. We're going to try the 50mg pills instead of the 100s.

I had a minor panic earlier. When I rang to find out what ward Will was being taken to after recovery, they said he was back at the treatment centre (where we started, not an overnight ward) and would be going up to day surgery later. I thought that meant he needed more surgery... But apparently it's just another ward. Phew. Hospitals are no fun - how is it they manage to make me shiver and sweat at the same time. Nice.

I will keep you posted. Will is sleepy and pretty dopey from the fentanyl.

Edit: Will told me the gas is in his abdomen, around not in his stomach. Apologies for that factual inaccuracy.

- Posted using BlogPress from my iPhone

Tummy Tuesday

Will went down to theatre at about 8.15 this morning. First on the list. Hopefully things are now underway - it's just after 9am. I cried a little after saying goodbye, which is madness given that I didn't cry at all when he had his transplant. There was no time, there had been no lead up, and my body was awash with adrenalin. Am worried am becoming slightly hospital phobic. That would be problematic. Still, this time I have the entire food hall at Addenbrookes at my disposal, which is very different to the late-night Papworth experience. It's a weird thing about Papworth - it's actually very small and therefore there are minimal opportunities to part with money. Or to find even half decent coffee. This time I am alone though. Nothing as lonely as a hospital while your loved one is under the knife. Though he's not literally under the knife, I suppose, under the laproscope or whatever the piercy/proddy thing is called. Ok, am waffling, time to go and browse some trashy magazines...

- Posted using BlogPress from my iPhone

Here we go again

Tomorrow's the day. I guess you could call it 'tummy tuesday'. I have to report to Addenbrookes by 7am tomorrow morning and I'm hopefully on the morning list so won't have to wait too awfully long, getting nervous. 

When I had the gastroscopy the surgeon said that there was a lot still in my stomach from the previous night, so he advised me to have 48 hours of clear liquids only before this operation. I've kind of compromised and gone for eating not that much for the first 24 and then only liquids today. God, I'm hungry! Must go and have some juice or something to get over my current sugar crash.

At least I don't need to worry too much about my lungs. Did some record breaking blows this morning - no idea why - there seems to be no rhyme or reason to it.

I am just hoping this won't be as bad as I imagine and that I can get over it relatively quickly. A necessary evil.

Happy days #1

Vicky here. To give you all some cheer before Will's op and his resulting misery, here's a marathon catch-up photo tour of some of our happy summer days. More to follow, but these are the ones on the iPad:

Summer walks on empty Exmoor


Sunny days - Will and his mum


Summer barbecues - Our nephews and niece (can children get any cuter?)



More cycling photos from the transplant games: here's Will lining up with the scary kidney transplant men (except the guy behind him, who is another CFer)


Going for it!! Did I tell you I cried? Don't think I've ever felt so proud and grateful in my life...


Chatting with Anne, a Papworth nurse who goes along to the games each year. She coordinated Will's transplant, so is kind of a special person to us!



Back with more photos soon!

- Posted using BlogPress from my iPad

Gout - isn't that a bit medieval?

Well, yes...but no. I suddenly feel compassion for Henry VIII.

It is surprisingly common in the general population, apparently, and very common as a post transplant complaint. I've noticed for a few weeks now a tell-tale pain in the last joint of my right big toe. Not there all the time but very painful when rubbing against fabric (sliding under the bedclothes, or pulling on a pair of jeans) and agony to bend if my toe is pointed.

I asked at clinic and they thought it was probably a mechanical injury as it wasn't a constant pain, but said they'd check my uric acid levels anyway to make sure. They came back a bit high, so I'm now on 20mg prednisilone steroids again, but only for 4 days, or until the pain goes away. At which point I have to do a week's course of 100mg a day Allopurinol which reduces the uric acid levels and should prevent it coming back for a while.

Vicky read that the uric acid and resultant gout can be more prevalent with diabetes, and after the hospital stay and the methyl pred for rejection my sugars went loopy for a while - that pretty much coincided with the start of the pain. So hopefully if I take the course of Allopurinol and then manage not to get more rejection it might not come back.

Oh, and I seem to have a mild case of 'runner's knee' after attempting to do some running two days in a row, overdoing it and straining my knees.

There's always something eh? I asked Vicky one morning how she was doing - "oh, fine". How about physically? - "yes, fine, no problems". What? How can you just be completely ok with no niggles at all? I never seem to quite get to that stage! But, hey, this is all minor stuff and generally all is good.

I may be blogging less positively after Sept 21st though, so prepare yourselves for the moaning onslaught!

A stressful time

Reasons to be stressed:

1. Blows feeling a bit shaky - they haven't hit the 'down 10%' threshold where I need to ring the hospital, but I am struggling more and more to get a good one. The consistency isn't there, and the average I get is around 3.10 FEV1 compared with a best of 3.36. I'll do a few in the 3.05, 2.98 range and then get a random 3.20 which will make me feel better...
2. My funcoplication is booked for 21st September and I'm getting nervous and a bit panicky. As soon as you search the web you come across horror stories on forums of the procedure. I'm worried about: maintaining weight, having an appetite, eating sludge for a few months, stomach pain and discomfort - and all that turning me into a miserable sod and the impact that'll have on long-suffering Vicky...  Usually a surgical procedure is to improve quality of life. This one is guaranteed to decrease my quality of life. Hopefully a short term pain for a long term gain (staying alive longer!).
3. My mother is getting worse with her Alzheimer's quite quickly. She is insecure and worried and calls me and my sister 4 or 5 times a day. It's distressing and very hard to understand what her problems are, or why she called as she has such problems with language.

Sometimes it feels like it all happens at once. On the back of all this I feel guilt for being stressed or pissed off since I should be grateful for the fact I'm alive, have had a transplant, am well. And of course I am grateful underneath - I still celebrate at every physical exertion achieved, at every good night's sleep. It's just so hard to feel so well and be faced with an operation that will make you feel ill again.