Up The Farway Tree

Tx Update - Day 13 - Wednesday

Another mixed day really, but all the time moving forwards and everything progressing well. The temp was still a little raised this morning but has been settled the rest of the day, so they will just continue to keep an eye on this. The bloods were normal however, so no obvious signs of infection. My magnesium was still low today so had another IV boost, but they are hoping the tablets will now be enough.

I didn't sleep very well last night, mostly because I decided I wanted to try without the night sedation. After a few hours I finally gave in and took the meds, so managed a few hours kip before they kindly awoke me for bloods at 7.30 and then breakfast and meds at 8am. One of the side effects of my anti rejection medications is sleep disturbance and also added to the fact I can only lie on my back propped up doesn't make for the comfiest nights sleep. I think I will just take any meds on offer tonight and hope for a more restful sleep!

Exercise wise, I have been feeling really tired today but did do some more stairs with the physio and also met my self made target of 10mins on the bike. Woo! I went a walk to the main door with dad earlier but was being really limited by pain in my chest, and this making it hard to breathe deeply. I am also terrified to cough as this is still very painful. My oxygen levels were a little low tonight (91%) but the nurse felt it is because I am staying still and breathing shallow due to the pain. I foolishly haven't been asking for any extra pain relief because I felt this would be a step backwards, and was also unsure how much pain I should just accept as part of the process. The nurse explained that I should be pain free enough to be coughing and moving around freely, so clearly I should have been taking some extra today, but its all a learning process. The pain team will review me tomorrow but in the meantime I've just had some oramorph and the pain is a bit better, so I am sitting up in the chair now which should help get more air into my lungs. The biggest risk of not coughing and moving is that I get a chest infection and we really don't want to go there. They would like to see me moving around the ward now, using the ward kitchen and generally getting back to some sort of normality. This is quite strange for me, as I am used to being limited to my own room in hospital due to cross infection risks between CF patients - where as this is a completely different environment in which I don't even have CF lungs any more. It's such a strange feeling!

I'm doing well managing all my meds and taking control of my own care, but its quite overwhelming at times. I have gone from knowing my illness inside out, knowing what every twinge meant, knowing my treatments like the back of my hand, knowing when to seek help and when I could ignore something....but now it's all different. It's like I have been given a totally different illness to deal with now, and I will have to relearn how to interpret symptoms and how to manage my own condition, to know when to ask for help and when I can stop asking daft questions. I have been writing all my questions down as new ones keep popping into my head - I'm sure I will get the hang of it all soon enough though and I will be well on my way to being a post transplant pro.

I will probably be moved to another ward soon (I am still in HDU) as I am certainly well enough now. They do like to keep post transplant patients here as long as possible but as there are only 5 beds there is a lot of pressure to move people on. Another option is that I get moved to the hospital flats, which are in the grounds. This is where Andrew is staying at the moment (mum and dad are staying with a friends, as the flats are limited). I'm not sure which I would prefer to be honest, because from what Andrew tells me the flats are basic to say the least! I think it all depends on things like my temp settling, the pain being under control and such factors all coming together.

So, all in all I am marching forwards, but as always, probably trying to run before I can walk. I just can't wait to be feeling 100%, pain free and raring to go but these things take time so I will have to learn a little patience. It will be worth it all in the end, I am sure of that much.