Up The Farway Tree

Day 20 - Wednesday

Today has been a very tired day and everything has seemed like hard work. I didn't sleep too well in the flat last night as the bed wasn't very comfortable. I woke up feeling very sore and stiff and despite taking all my pain killers I was still really sore by the time I went to the gym at 11am. This made everything seem that bit harder, especially since breathing deeply seemed to make my chest more painful. I did manage to complete the session though, and the physio was still pleased with my progress. I feel as if the exercises are becoming harder instead of easier, but I'm sure that's something to do with muscle fatigue and general tiredness. We discussed what kind of things I should do when I get home, and she agreed that walking is the best idea and I should just gradually work on increasing distance at the moment. I am not allowed to use a gym or swim for 3 months, due to risk of infection and also pressure on the wound. I don't think I fancy joining a gym though and I'm not too keen on swimming, so its no great loss for me. If I can end up taking Seb for a decent walk then I will be happy.

At lunchtime we popped back to Pat's to get away from the hospital for a while, although we had to head back for clinic at 2pm and also to get the NG tube removed for the study I'm helping with (was so glad to get that out!). I was under the impression I had an actual clinic appointment, but it was actually just an introduction to show me around and explain what happens when I come back down for outpatient appointments. I think I will have to come every couple of months to start with but this will gradually become less. I also had the chance to chat with another transplant patient, who has CF. He had his transplant 4 weeks ago, and we were talking about how tired we both felt, and how we still can't feel the full benefit from having new lungs. I think we both found it reassuring that we were experiencing the same things and it definitely helped put my mind at ease. I know I am expecting too much too soon, and because the improvement is happening gradually it is hard for me to see. The blog will be useful for me looking back and seeing how far I have really come.

I have also noticed an interesting thing today - that my body needs to relearn that I have working lungs. For example, when I had my old lungs I usually sat leaning forward with my arms resting on my knees, as this was the easiest position for breathing. I noticed today that I am still doing this, even though I can now sit back and not feel breathless. It's just become a habit and I am sure there are lots of other things like this that I am still doing. I think it will just take my brain a little while to catch on!

Tonight I am back at Pat's for dinner again and its so lovely to get some home cooked food. My appetite has still not been great, although I am managing to eat my main meals. I am still hopeful that this will kick in once I get back home and into more of a routine. I am still not sure when I will be getting home as I haven't seen any of the doctors today. The nurse at outpatients clinic said I will be due my second bronchoscopy at the end of next week, so she thought it likely that they will keep me until then. It is true that there would be little point in sending me home after the weekend for me to travel back down on Wednesday, however I was hoping for release this week. You never know though...

p.s It's nice to see Rena and Aunty Margaret posting - hope Aunty Margaret is recovering well from her surgery!