Up The Farway Tree

Tx Update - Day 11 - Monday

For some reason (probably just not enough distraction) I am getting a bit panicky in the late evenings and feeling quite anxious about everything and nothing. I'm sure this will settle down in the coming weeks though, and I have no doubt that some of the pain medication is contributing to some of the strange feelings. Despite this however, I had a much better sleep last night with the new pain medication. Although I was still awake quite a few times throughout the night, I was not waking up rigid with pain and asking for morphine. I managed to get myself back off to sleep and lasted all night without extra pain relief. Let's hope this will now continue and I can catch up on some much needed sleep!

There was a ward round this morning and the doctor was pleased with my progress so far, especially the bronchosopy results. He has however decided to change one of my anti-rejection meds (cyclosporin) to a different kind (tacrolimus), as the ones I was on can make me hairy. Eek! He hadn't realised how dark haired I was until the nurse pointed it out, which apparently meant I would almost certainly be troubled by this side effect. Not fancying the idea of shaving for the rest of my life we are swapping the meds now before it becomes an issue. I am also still having blurred vision which might have been related to my anti-rejection drugs, so I'm hoping this will clear up as its rather irritating (can't read a book or anything like that, and this is really hard to type). It could also still be my low magnesium but they are treating that, so not much more to be done on that front. I'm getting the usual side effects from high steroids - bloated moon face, generally swelling up and skin is looking bad - but this should clear up as they reduce the dose. Apparenty most people end up on a small maintenance dose, which is similar to the dose I was on for CF related chest problems anyway,so thats not a big problem.

I did well without the overnight feed last night, and did in fact eat more today that I have done all week. I am really hoping this is a sign that I can ditch the feeds for good, although i suspect they will make me keep the Peg tube in until they are sure my weight is steady. I have to now carefully monitor my blood sugars, as the steroids and anti-rejection drugs are playing with my diabetes control. With a bit of regular monitoring and adjusting of insulin this should be easy enough to manage.

I have continued with the exercise routine and had a couple of goes on the bike today- once for 7 mins and then for 8mins. Mum and Andrew kept telling me to stop, but I was listening to Dolly Parton's 9-5 on my ipod so I couldn't hear them anyway. (This sound track will forever be associated with my transplant, as that was the ring tone on my mobile when I got the call). Feeling that I was overdoing it, Mum did hit me with her newspaper in a bid for attention but I ignored her and carried on cycling. She might have just been trying to stop me singing along though. Andrew has evidence on his mobile, and it includes shoulder shrugging and general swaying to the beat whilst cycling. That clip will never be seen on this blog. I did feel quite breathless after the 8 minutes but it was a different kind of breathless than before - it wasn't a low oxygen levels, going to collapse feeling, but more a 'I've just exercised feeling' and I recovered quickly and was still able to talk (much to everyone's delight). I think that's the main thing people have noticed so far - that I speak for much longer and much faster, with little pause between. I remember only too well having to pace what I was saying because even talking made me out of breath, but now there is no shutting me up!

Getting fit! (this was taken before o2 was stopped)

Dad stayed with me this afternoon whilst Andrew and mum went to get some food essentials (including ingredients for mum to make me truffles!) They also had to buy me some more tops, because I can't get my arms above my head enough to get the ones I have on. I'm not complaining though. It was good that dad was here this afternoon though, as we had more teaching from the nurse and he could ask some questions as well. It was just more info about post transplant do's and don't buts I won't bore you with the details. I also signed a form to say that I am self medicating now, which is great - it means I can just get one with everything without waiting on a nurse to check things. I also have to take my temperature 4 times daily at the moment (and 2 times daily for the rest of my life) in order to pick up signs on infection or rejection early. There is a lot of new information to take in and alterations to my treatment regime but I'm sure I will get the hang of it soon enough.

Well, this is a really long blog so I won't go on any more. I hope its helpful for everyone to keep up to date like this - its helpful for me to write all this down as my head is spinning with new information. I do apologise if the detail is a little much, but then again its my blog so i can do as I please... :-)

Me and Andrew after a walk to main door

p.s Just a wee note to say Hello to Joan and Andy - great to hear you are keeping up with the blog. I'm sure we will be able to come and visit you all soon!