Monday 29th March 2021
Other Side
Hi everyone, I hope you’re all doing well. Firstly, thank you for all the well wishes, prayers and messages. It’s been a long time since I last posted, I managed to get out of hospital last week and haven’t been pushing myself too much but certainly feeling a lot better than what I had been at times during the last 6 weeks.
Day 0 went well, getting the infusion was grand and had no issues with it, it wasn’t until a few days later that the counts really dropped with the medication that I was on to suppress the old immune system so it wouldn’t attack the new one and cause any graft-host reactions.
With having absolutely no immune system I developed really bad mucositis and wasn’t able to eat and with all the infusions I had a lot of fluid retention. There was plenty of pain relief and thankfully that was mostly not an issue, there was only a couple of times I needed to get more.
My platelets were incredibly low and every time they tried anything like getting the subcut, blood taken, ended up in a bruise. So over the weeks I pretty much ended up being a bruise. Even getting the blood pressure was causing bruises and with that they were limited on where they could do the blood pressure, it also didn’t help with the fluid retention which made it really hard for them to measure as they had to do it manually and when they tried (later on when the counts began to rise) they tried with the electric monitor but it struggled and tightened too much causing more bruising. I got the most impressive blood blister you'll ever see as well but I'll talk about that another time.
The fatigue was pretty bad, doing anything was such a chore and really took it out of you, I was on a drip to supplement not eating but each time I went on it I got a raised temp (unrelated) and had to come off it again.
I developed an infection in the PICC line and the microbiologists wanted it removed but with the fluid retention it was almost impossible to get any bloods out of me and the same with getting a cannula in. Luckily they managed to get the cannula in at one point and got the PICC line taken out, after some antibiotics for a few days I got it replaced with a new one. At this stage I was lucky that I was able to take tablets again which reduced the number of drips I was getting, for long enough I was constantly hooked up to something, a lot of the time two things and sometimes even three infusions at once. With getting back on the tablets it was reduced considerably and even managed to get off the drips for periods. It was nice when at night and I could relax a bit more properly.
Again this time as the last there was the constant breeze in the room which you couldn’t escape. When you went to the loo at night your feet got cold and took ages to warm up again after.
For a couple of weeks things were really rough and ungraceful would describe things best but then things started to improve and each day you could really see a difference. Then there was a day and I just felt a lot better, counts had been doing well and improving but that day I just felt mentally sharper and starting to eat a bit and getting the motivation to move around a bit more too. At this stage I knew it would just be a matter of showing them I was able to eat ok and getting off the antibiotics as well. So a few days later I was on my way home.
I was expecting it to be a lot rougher and longer than the previous transplant, and it was, but not as bad as I had been expecting it to be, glad that part is over as I had been dreading it. Now that I’m out though I can eat a lot better and build up the exercises a bit better. I was very limited on what I could do and what I wanted to do there. I’ve already stabilized the weight and focused first on getting around the house which wasn’t too bad and now starting to venture a bit longer distances, I walked round to my house. Will be good once I get home home to get on the treadmill and be able to relax a bit more and be able to increase the distances etc gradually of course and will take a while but it will get there.
I’m still up at hospital a couple times a week to keep a good eye on things and will be for quite a while yet as things can still go drastically wrong but everything is looking well so far. Just need it to continue that way and keep on course of what I am currently doing. I'm quite pleased with my progress and the docs seem pretty happy too.
Hope you’re all doing well, until next time.