Monday 9th November
Time to go to Birmingham for clinic again today. When you go to clinic they always take your blood and for this reason you are not supposed to take your anti-rejection tablets in the morning so they can check the tacrolimus levels in your blood. As I’m trying so hard at the minute to try not to forget my tablets because I’m out of my routine with going back to work, I completely forgot that I shouldn’t and actually took mine this morning. The doctors don’t mind too much, they make allowances for the results they get, but it did actually make me feel quite frustrated with myself for getting it wrong and I got a bit of a telling off from Robyn 😦 so not a good start to the day.
Can you believe someone else was sat on our ‘picnic bench’!! So we had to sit opposite it today Robyn had her organised pack lunch, I had a latte and an orange and cranberry muffin from Costa, which actually wasn’t particularly that nice 😦
After being weighed and having my blood pressure taken, eventually it was time to see my consultant. I told him I was still suffering with joint pain after taking the extra vitamins for a month, so they obviously weren’t causing the problem. Now he says it might be a side effect of the anti-rejection medication so he’s now reduced that by 1mg a day. Have to wait another month now to see if that does anything. I told him that my Reynauds had also come back (this is when the blood flow doesn’t get to your fingers, toes etc. when it’s cold). And it’s not just because the winter is now coming, last year when I was very ill I didn’t actually have any problems with Reynauds! In my humble opinion I think I may have got all these problems because I have stopped taking my steroids after being on them for many years and I told him this, but at the minute he doesn’t agree with me. Or maybe it’s because of the aziathioprine which was also suddenly stopped when all my white blood cells disappeared back in the summer. I don’t know. And I don’t think he does either! At one point he just sat there looking at me, saying nothing He also says the reason why I still don’t feel great might be because I have a small infection which my body isn’t getting rid of. But mainly they still seem to put it down to the fact that it’s still early days, I had two transplants not one and I didn’t have an ‘easy ride’. So I’ve now come to the conclusion that this is how I’m going to be. I’m obviously feeling much much better than I did but I probably will never feel 100%. I will have good and bad days, both physically and mentally. It will be hard at times but I will be okay 😀
We were a long time in clinic today, the doctors were running behind again. So we didn’t have time to pop and visit my hospital friend Marina, who is still in hospital but has improved a little thankfully, and is back on the transplant list, at the minute. Fingers crossed.
Amazingly we didn’t get caught up in any traffic on our way back this time. So I think that cheered Robyn up a bit.
We stopped off in Banbury and did a bit of food shopping 🍏🍌🍞 which is never a fun thing to do with Robyn! but it was reasonably okay this time.
Finally made it back home.