Latest consultant visit gave a good overview of where things are clinically.
All my blood results were slightly improved again – likely to only get back to full strength a few weeks/months after I’m off anti-rejection drugs.
On that subject, I’m down to just one anti-rejection tablet each day and a week today they will stop completely.
When they do stop so will the anti-fungal drugs which I think are to stop me getting any sort of fungal lung infection which is a very bad thing. I take three of those a day.
Currently my tablets are as above, one anti-viral, one for my bladder, one for blood pressure and two for hypothyroidism.
Nine tablets in total about to reduce to just five in a weeks time – that’s quite exciting and also feels a bit odd as on average I’ve taken something like 20+ tablets every day for the last 400 days or so, something like 8,000 tablets and will continue on at least two for life.
Every month since transplant I’ve had a ‘chimerism’ blood test which shows if my various blood cells are all being produced by my transplant cells – each result has been 100% to date and I need that to continue till I’m a ripe old age…..or I won’t make it to a ripe old age!!
I’ve been wrestling with that thought a lot and with the insights of Tony, Matt and an old rowing coach, Ian, I have settled on a new mindset….most of the time! I’m now adopting a view that whatever the ‘stats’ say on survival rates, if I’m in the percentage that survive then my chances are 100%. So, as I’m in that group then I’m 100%!!! I only got C in maths o level, but those stats work for me!! 👍🏻
The iron overload treatment is imminent and it does look like we are going down the sub-cutaneous needle and drug pack route. The overload is measured on your ‘ferrite’ level which should be around 500 and yours truly is at 5,000. Oops. Need to get cracking on that which should help muscle and joint aches, abdominal pain, headaches, fatigue….and avoid liver failure, heart failure or blindness!!
Last medical thing is still my bladder and right kidney; op due anytime to go in and have the bladder to kidney pipe checked but that won’t help bladder swelling which is still just ‘get on with it.’ Unfortunately with this weather I’m working on drinking more so often am weeing every 15 – 30 mins during the night which is unfunny. I’ve resorted to getting more sleeps in during the afternoon when it’s been very hot but always feel pretty crap after an afternoon sleep. (Still getting up at least every 30 mins!) Still weeing in a jug to measure output and pleased to have seen a few 100 ml wees and the 75mls are easier to produce. Possible progress?
Pain in my bladder though can still be intense, especially if I’ve had a more physical/mobile day so more nights than not I’m resorting to a dose of ‘Oromorph’ morphine solution which seems to be the only thing to alleviate the pain.
Downside of not drinking enough is still constipation which occasionally still stops the trains leaving the station. This can be horrible and I’m sure it adds pressure on my bladder but I think I’m slowly getting them back to timetable with more water and laxatives. Running on time and no fuss will be massive, er, not literallly!!
That’s about it really – still doing a lot in the garden – absolutely love my morning cuppa with Lisa on the patio while it’s still cool. So nice to sit and natter and enjoy out company. 💕 💕
Also nice to get my folks up for the same thing as they’ve had such a lot to bear and have been so supportive in so many ways. It’s so good to get them up for a brew and a natter.
Must mention my ‘outlaws’ too who have been an amazing and practical support to us both on almost a daily basis and have really ‘propped up’ Lisa on so many occasions too. Val who has helped for example with washing and ironing while Lisa was still on hospital runs. Both taking the dog out for walks too while I was in hospital and while I’ve been at home and Lisa in work – that is much more help than it might sound. Helping wash walls down for painting, Ian putting up blinds, getting DIY materials for me, brilliantly building most of the kitchen, laying paving slabs, cutting grass and most importantly, building our Lily’s summerhouse!!
Think that’s it for now – making the most of everyday I think, keeping busy, trying not to overdo things, being massively in love with Lisa, lovin’ our kids and daring to dream.
Thanks everyone as ever,
(By the way, I try to answer most comments on the blog, but it’s doesn’t let you know I’ve replied…)