I thought it was about time I updated you all as to how I am getting on!
This is a rather exciting update because I am using a bluetooth wireless keypad with my ipad to type, it’s tiny so proving slightly harder to use- this may take a while 🙂 it’s quite cool though- bright pink and made of soft rubber so it rolls up after use.
Anyway, back to more important things- like … me!!
Its been a week and a half since I got home. It took a few days to settle and feel better and then the second half of last week was pretty good. I felt much better than I have done for a long time. its still very hard work just doing the basics like washing and eating but i’m afraid thats just how things are now, it wont get much easier. I need to try and move around a bit more and do some walking- when breathing allows, that will get my muscles all a bit stronger which be important during transplant. The good news is I have managed to bring my oxygen down to a lower level since coming home which is good progress.
The weight has gone up slightly, I am 37.2kg today but its not really enough- really need to work on that. I have been getting through the easter eggs very well but been having terrible heartburn with every single meal at the moment. Its not fun and stops me from eating enough.
I had a clinic appointment today at the hospital, it takes a LOT of effort and planning to get me and sufficient oxygen down there for not a lot to be said and then time to come home! I have to say I was impressed with myself managing the car journey without any fuss or panics. That sounds silly but would have been impossible 6 months ago.
The consultant was pleased with me today and gave me a new tablet to try for the heartburn so fingers crossed for that to work! The main thing I wanted to discuss was my impending appointment at Harefield on 3rd June and how I am going to get there. He seems to think that Harefield will agree to follow ups being ok in jersey given the amount of travelling I would have to do. We have left it that he will discuss with Harefield. I am sceptical that they will agree but we will wait and see!
If I do have to go, at the moment I am thinking of going by boat and staying over with Aunty Jane (who lives in a convenient spot and very kindly doesn’t mind a houseguest!) for a while after and just see if I get that all important call any quicker. Obviously there is a lot to sort out between now and then though so nothing set in stone at the moment!
It’s just so difficult to know what the best thing is, I could really do with a crystal ball at the moment!!
It’s now getting late and been a busy day for me so I am off to eat more Easter egg then get to bed! I am still sleeping well on my lovely sleeping pills and he said today I can carry on taking them so happy days!
Love Kerry xxx