Up The Farway Tree

Jac's Tx Update - Day 9 - Saturday 9pm

Hello! It's me!! I couldn't sit back any longer and demanded access to Andrew's laptop so I could get my tuppence worth in. I have blurred vision due to low magnesium levels (very common post tx and nothing to worry about) so if this is full of typos you will understand why.

Today has been another good day. Although I am not sleeping well at night due to wound pain, I am for the first time in as long as I can remember actually waking up and feeling well. I think I had become so used to dragging myself out of bed, breathless and coughing with a pounding headache every morning that I had no idea how abnormal that was. You could also argue that I might be high on steroids but lets hope its a more permanent change than that and a glimpse of what my future holds.

I also had another huge milestone today when they removed my oxygen for the first time. I was really nervous about this as it felt like a saftey net was being taken away and I wasn't sure my new lungs would be able to cope. My sats stayed in the low to mid 90's this morning but hit a staggering 97% (normal!) this evening so I could not be more delighted. It feels strange to be free of oxygen and I feel instinctivly that something is missing...yet it feels so good. I also had my last central line removed this morning after it gave up the ghost, so in a week have gone from 2 central lines, oxygen tubing, sats monitor, cardiac monitors, 5 drains, arterial lines and catheter....to nothing. I am totally tube free and loving it.

It is a bank holiday weekend so there are no physio's around but they very kindly left me a list of exercises to be getting on with. The bike was dutifully rolled out again and I completed just over 5 minutes without stopping and planning for even more tomorrow. I also did some arm weights, although these are limited at the moment to allow bone and wound healing to take place. Since my biopsy showed no rejection I was allowed to leave my room as long as it was quiet and we avoided people (I am still very immunosuppressed at the moment). We went outside in the wheelchair and then I decided to walk back to the ward, which was hard work but encouraging all the same. I had a couple of wee stops but the main problem was wound pain preventing me from breathing deeply enough, but this will gradually subside and I'll soon be working muscles I didn't even know I had.

The ward staff have also introduced me to my "Red Book" which is basically a notepad where I have to list all my daily medications and the times they have to be taken (the anti-rejection medications have specific time frames). At the moment they get me to sort out the medications and the nurse checks them, and then they will allow me to self medicate once I'm proven trust worthy ;-) Having been self medicating all my life this is no hard task, but it's all just a process and good preparation for home. They have also given me material to read about post transplant issues - immunosuppression, medications, rejection, infection, things I have to avoid etc. It's quite a lot to take in but they will spend time going over all this again over the coming week. The nurse said this evening that if I continue at this rate I will be heading home quite soon. There will still be a long recovery process once home, and a great deal of adjustment, both physically and psychologically, but the thought of getting back to my own wee house with new lungs is an amazing one.

I also wanted to give Shelley a wee mention here. She is a fellow CF patient at Gartnavel - we went on the list around the same time 2 years ago and she was called for her transplant last month. After a flying start and getting home in only 19 days, she is now back in Newcastle with an episode of rejection. Hopefully the high dose steroids she is getting will do the trick, but please give her some good thoughts as it must be so disappoining to be back in hospital so soon.

Well, I'm now off to organise my evening medications and talk to Andrew, who has been left watching the TV while I sit here blogging. He has done well keeping you all informed - i might allow him a pint when he gets home :-)