Friday 10th July 2020
Tempting
Hi all, hope you are still all staying alert. This week stuff happened, or at least more the prospect of stuff happening has happened. I had an update on Tuesday about my bro and sis and their compatibility to be a doner and it turns out that my bro is a match and this will simplify and make things a lot easier, I’ll be able to stay in Belfast to get the transplant and the complications are drastically reduced, less likely to react to it, that’s not to say I still can’t but the likelihood is a lot less than if it wasn’t a relative.
So I feel quite lucky that one is a match, I’ve heard stories of much larger families not having that luxury. It won’t be for another month or so before he gets the cells taken, basically your bloods taken from one arm put through a machine and put back in the other arm. I can’t remember the details of when I had it done but I do remember it was planned to get it done over two sessions in two days but we were able to get it all done in one day. I remember lying there and the doctor asking if it was ok for students to come in and see what was happening and ask questions, which I’m happy to do, as no doubt one of them will end up being my doctor in a few years. It happens quite a lot, happened a couple of times when I was in hospital the last time too. I’m not your regular patient with the scars and conditions, although somehow they missed the big fresh scar to the right of my chest, although I think it was more they didn’t mention it rather than not seeing it, their lecturer(?) had to because it was that scar he wanted to question them on.
So once they get the cells they’re after it will be frozen until I go in to get it. I think there are a few tests that need to be done beforehand, check his heart is ok and liver and all that stuff and I think the same for me too. The only thing that I can think that could be an issue would be the pericarditis I had in December, but it hasn’t been an issue really since then, notice the odd strain but it never seems to come to anything and is soon forgotten about again.
My trip to hospital wasn’t too bad, after last time having to use the car park I decided to park out on the street again to avoid having to use the machines, but I did have to use the main lifts to get to the Bridgewater Suit, took my temp and on in to book in. Everyone that didn’t have a mask was given one when getting their temp taken but once in the waiting room there was only a third of them wearing one, ok everyone has been, or at least should be isolating but you sometimes wonder what’s the point when this happens. I’m gonna continue wearing mine anyway, I always wear a hat when out and a neck warmer most of the time so a facemask isn’t much different. Bloods were taken and I didn’t want to sit and wait inside again so I went out for a walk, went to Queens and Botanic Gardens, Botanic was busier than I thought it would have been especially for the time it was too. Took a few 360 pictures and left, back to the car, and sat there for a while and then on back to the hospital as I didn’t exactly want them forgetting about me.
The nurse taking the temps confused things though, rather than me just going and sitting in the waiting area she went to the doctor to see if they were expecting me, which they were but not at that exact moment, she also went and said the wrong doctor than the one I was there to see, just confused things needlessly.
When I got in to see the doc we went over a couple of things, he’s happy the steroids are being reduced a bit, and he said to come off the colchicine which I’ve been waiting a month to hear. He’s also putting me on antifungal tablets as a preventative measure, as I have/had lesions and pockets in my lungs and on steroids I’m fairly at risk of getting fungal infections which are notoriously hard to get rid of, if you remember back to October that’s one of the things they thought I had, Aspergillosis and were expecting that from the results of the biopsy, I had the tablets and everything ready to start the course, but never did as it turned out to be something else.
At the time I was looking at HEPA fans and coincidently a couple of weeks ago I ordered one but as an extra precautionary measure to try and help get rid of any bugs floating about the house. Turns out it was a better idea than I initially thought. So I’ll be on the Posconazole up to the BMT, off for a short while and back on them once my immune system kicks in for 100 days when I’ll be getting some test if I heard him right. The transplant itself won’t be happening until the end of September as they have a couple of others they need to get through that were held back with covid, which is grand, but it did give me a better picture of the time scale, he did say we’d have a better idea at the next appointment but it was good to know roughly, not overly keen being left in the dark not knowing when.
It gave me an idea of just how long this will still be going on for, it is now Day 298, another 2 months say for the transplant, at least a month in isolation in hospital and then 100 days of keeping a close eye on things and tests and whatever after that. It’s a long way to go still. Which brings me to the title of this blog, I’m tempted to go out for a few weeks and shower the head, I’m not overly concerned about the covid stuff, I’m sensible and rote about avoiding people and washing hands etc, what I’m more concerned about is I’ll like it too much and not want or be able to go back into isolation and struggle with it. I’m doing well and quite content so I don’t want to throw a spanner into the works and screw that up. At the same time it would be nice. Haven’t decided, would be nice to get the kite out or get a proper walk, look at something that more than 4m away. But i’ll stick with my initial plan that I’ll stay in until August and take it from there.
I asked if there was a better way to do these appointments as I wasn’t too keen on the waiting around in the waiting room or sitting in the car and that I’ve been lucky that it’s not been raining have been able to go for a walk. I mentioned that the district nurse is out each week and has said about taking the bloods, at which he asked why they were out if it was just for the PICC line, which it is and asked if I’d like it taken out. It’s not being used and won’t be used for more than bloods being taken for a few months so I’m more than happy with that and said that I’ll not really need the bloods taken each time and could just come up to see him. Which I forgot about when booking in for the new appointment and said as early as possible which was 8.10 and there’s no way he’ll be there then so will probably have to wait around longer.
After booking the next appointment I’d to wait a while before going round to get the PICC line taken out, by this stage the waiting area was pretty much empty and once I went in it didn’t take long to get seen to and the line taken out, the fishhooks where catching though and they weren’t able to unhook it easily, I think she was being extra careful to not hurt me, but I’m pretty good with that type of thing and wasn’t really sore at all the odd sting and surprisingly little to no blood. So now it’s out I can shower at will again which I’m looking forward to, I’ve only really been able to shower about once a week so I don’t go through a load of plastic sleeves but now I don’t need them and can feel a little cleaner again.
When leaving I bumped into one of the nurses from 10N well 2 but one didn’t quite know who I was because of the mask and all but she was on her break and I didn’t want to hang around more than I had to in the foyer of the hospital, but was a coincidence to bump into them after finding out that I’ll be getting the transplant in their ward, at least I know the ones that will be looking after me.
As I had a plaster on my arm I wasn’t able to shower so the next morning I had a nice shower not having to worry about the dressing getting soaked. I had to go back to hospital to pick up the antifungal tablets, thankfully it was straight in pickup tablets and home and no waiting around but didn’t start them until this morning. Not quite sure what exactly caused it but I was incredibly tired this afternoon and even felt a bit sick with it, and lay down to sleep, completely out cold for some amount of time well over an hour. When I woke up I couldn’t move so I just lay there but what I had been watching on catch up had ended, returned to the home screen and even that had been cleared and was now showing what was on the tv which was the cricket, so was happy enough to just lay there, eyes still closing. Took long enough to properly wake up and get the ability to even sit up, not sure if it was the tablets I have been on or the new ones, or I was just really REALLY tired. Guess we’ll see if it continues.
All caught up again, I guess it was a pretty good week nice to have a rough idea of a timeframe and goals to aim for as such.
Until next time
Stay alert