T + 619. No Soup for you!

Thought I'd start this one off with a meds refresher for those of you that are either pre or post transplant. Daily I am on;

Ciclosporin 125 mg OD am
Ciclosporin 150 mg OD pm
Aciclovir 400mg BD
Mycophenalate Motefil 2g BD
Penicillin 500mg BD
Budesonide 3mg TD
Amlodipine  5mg OD
Betamethasone 500mcg TD
Folic Acid 5mg OD
Omeprazole 20mg BD
Pozaconazole 5mls YD

This is pretty much how things have been for about 18 months now the only real change is when I get a CMV reactivation and have to swap out Aciclovir for Valganciclovir. I take the occasional batch of steroid eyedrops and artificial tears but really they don't seem to make things any better.

I recently tried some quack eyedrops I saw advertised on TV - synthesized from Manuka Honey (with its amazing healing and antibacterial properties blah blah blah). The blurb said that after some initial sensitivity I would feel relief from soreness and dry eyes. The ad showed people who had been suffering for years, only to be healed by this miracle stuff.

Ah - that's better

So I popped a couple of drops in each eye and spent the next ten minutes writhing and blundering around the apartment in absolute agony. It was rather like someone had kicked me really hard in the plums, then gouged my eyes out of my head with a spoon and then squeezed my screaming testes into the vacant eye sockets. The only way these fucking things give you relief is when you've virtually dehydrated yourself crying enough to wash them out of your eyes. There is no fool like an old fool - because they get more illneses! Lourdes runs on mugs like me.

Jeannette came home from work with a great story  - she's starting to settle in to her new role and is zapping here and there across the country by jet getting in to see the various medical units and consultants who work in haemophilia in Australia. As they get chatting things often get very technical and as in any specialist area there is a whole language of acronyms and professional shorthand in use.
On some occasions the subject of my history of illness comes up and as it is a fairly rare type of disease the consultants are usually interested to hear more details. In this particular instance from what I can remember it went something like this;

Cons: 'So hubbie's had a BMT - what was it MUD, autogenic?'
Jeannette:' No - allogenic full match sibling'
Cons: 'Oh - OK , for ALA?'
Jeannette: 'MDS'.
Cons: 'Uhuh - 5q short string, Refractive?'
Jeannette:'No  - RCMD.'

The conversation carried on in this vein for some time and eventually came up to date with how I am now;

Cons: 'So current prognosis then?'
Jeannette: 'Chimerism 99 / 100%, transfusion free, but has chronic GVHD - ocular and oral, on immuno-supression and prophylactic anti-b's'
Cons: 'OK I see - Jellybean?'
Jeannette: (slightly perplexed) 'Eh? I haven't heard that before.'

a brief silence....

Cons: (starting to lose it) 'It's a sweet - I'm offering you one' ....hilarity obviously ensued.

A quick aside - I'm getting a bit dubious about the quality and accuracy of the stats calculator at blogspot. I dunno if other people reading this can go into the stats part of the site and see the country by country breakdown as I can, but out of the blue yesterday I was a big hit in Romania. Nothing at all for that country since I started in Feb 2013 and all of a sudden 43 page views out of nowhere. Weird.- unless the story about a massive nadgered dwarf appealed to the national psyche?

On the subject of which - Milo continues to be a source of total joy and teeth gnashing fury often in the span of the same minute. Mealtimes are particularly testing - often a minimum of 90 minutes to get it down him and a constant stuggle to keep him and his attention at the table. Earlier today after 45 or so minutes of me attempting to get a bowl of chunky beef soup and a slice of toast inside him we had the following exchange:

Me: 'Come on you like this soup! You said you loved it the other day - eat up'
Milo: 'No - you can't make me'
Me: 'Do you wanna bet? Either you eat it or you're going to be frigging wearing it in a minute son' ( I'm pretty sure I just said frigging)

No Father!! - I shall not eat the chunky beef soup you offer

Jeannette at this point could hear that the situation was escalating toward meltdown or mutually assured destruction and stuck her head out of the bedroom door to call over ' Nick - TAG!'
I've written about this before, it's a coded (we thought) system we use so that if one of us can see that the others' fuse is burning short they can jump in to avert murders. I just about had the red mist and was in no mood to be tagged and then Milo piped up; 'Yes  - tag Mummy in now Daddy, I've had enough of you'.
Defeated and deflated I skulked off to the bedroom to sulk and play Scrabble on the i-Pad. Obviously not that much of a code then - and less than 5 minutes later the little turd had finished the rest of his dinner completely and came in to give me a consolatory losers hug. I am now officially out of my depth.

Coda: - at the beach today him, standing in the sea  shouting back to land at the top of his voice
'Mummy! You have to wash my swimming costume tonight'
Jeannette calls back from the beach 'Why darling?'
'Because I've just done a great big wee in the sea'

Cue twenty or so heads swivelling towards us from adjacent towels.