Gah, completely bloody knackered but I'll probably feel even less like posting tomorrow. So - catch up in brief...
The weekend was busy shopping and cleaning and panicking over today, and no, I didn't sleep very well. We got in for 9.30, and of course the platelets weren't there - though credit where it's due they were being got ready and arrived around 11, so at least something's worked.
Today was the big 'let's get lots of procedures done' day. I was taken down to the apheresis ward for vein assessment at 9.45 - it's quite a peaceful and comfortable place. The nurse had a good look at both my arms and although the veins aren't perfect, she was happy with them (cue a [PHEW!] as I was not looking forward to neck or groin canula!) Got back to the day unit and was weighed and height measured and then they took my blood pressure, which was even higher than expected (192 over 114 if you really want to know. I set off the alarm on the machine...) This of course is not good. Then I was whisked off for a conversation and full details of how this procedure works (it's at this point, of course, that we finally learn we're part of a trial and the procedure - haploid-identical transplant - is still very new. Hm...) And although I pointed out that my BP is normally high, and higher than normal right now due to stress, she said that I was unlikely to be able to donate if it stayed that high (as a rough guide the maximum they'll consider is 140).
Cue a phone call to Ken to ring our surgery to try to get an urgent appointment for me with our own doctor: she had one slot at 5.50, which Ken booked. Then the lovely Vicky (who tried so hard to take my blood samples last time and decided I was an alien when she couldn't) came to try again. (And told me to stop laughing...) However, taking her advice to heart I drank a LOT of water yesterday (and this morning) and she was able to draw what was needed with no trouble at all.
When Kai's platelets had gone through we both had ECGs (and that was embarrassing but at least our nurse was female), then headed off for the chest x-rays. Except one of the department's machines was broken and there was a two hour + wait (for some reason they don't actually book times for x-rays, it seems to be first come etc.) So we went off for Kai to have his respiratory tests (which left him breathless and with a sore chest, which fortunately faded quickly), then it was back to x-ray, where the situation hadn't changed. So I've reorganised for us to have them done next appointment: we'll get there about 8.30 so we're near the front of the queue, then head off to the day unit after (DU reception now know and are fine with it).
THEN it was off for Kai's echocardiogram (basically an ultra-sound of his heart). We were actually nearly an hour early getting there, so I tried a little charm on the receptionist and we got in almost immediately. (Doesn't always work but no harm in trying!) That procedure was fascinating...
Back at the DU we were early for the last appt of the day - a meeting with the radiologist. This is where it nearly became problematic, as we were unlikely to get out before 5.15 and my doctor is the other side of the river and it was rush hour. But the DU receptionist (the lovely Tara) had a word with him and we managed to be seen at 4.30. Relatively quick meeting - he described the procedure and said Kai needed to be measured to make sure he got an equal dose of radiation (which is going to be extremely low) all over, but given that my appt was pretty vital that could be done another day. Extremely nice doctor whose name I've forgotten already, alas, but today feels like three days stuff rolled into one and I'm poggled, so not altogether surprising.
Taxi took the Wells Rd and dropped me at the corner before heading down Talbot Hill to get Kai home. Got to the Surgery in plenty of time.
Explained the situation to my doctor, and added that they were hoping to perform the transplant in June. She stared at me and pointed out this was a pretty tall order. I said 'yes I know, so how do we start?'
... I'm not altogether surprised me and doctors don't always get on...
Anyway, luckily all my blood results from this morning were on the system (as she quite rightly was NOT going to prescribe me meds without knowing my kidney function - which is normal, as is my liver function, and how that hell it's that is completely beyond me...) so I now have Ramipril to take (got the prescription filled at Tesco, who now take your phone number for follow up calls to see if everything is all right! They're a bloody supermarket for gobs sake!) and an appt next Wed to have kidney function checked again.
[growl] So after fighting it for years I finally have to take meds for my BP. I suppose it's for the best. Can get it under control before anything nasty happens...
Kai, bless him, has been great all day. He's very tired now, but happier - as am I - that at least some of the hassle is done, and early and without undue stress. I can't see it lasting, but at least today has been good. Knackering, but good.
Somehow over the next couple of weeks I have to get a whole load of seeds on the go if we're to have anything for the freezer come autumn. I thought I needed clones/TARDIS/immortality before? Hah!
Oooh. Fox warbling in the garden...
Labels: medical matters
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Joules *Dances with Haddock* Taylor
pontificated this at 11:43 pm
1 Comments:
Crikey, what a day!
Mum ended up on BP tablets after managing without for years and it's been for the best; it has definitely helped her.
All sounds positive anyway.