Up The Farway Tree

Tx Update - Day 12 - Tuesday

Today has been a tired day for me. A combination of everything finally catching up and probably the sedative effects of medication. I think I forget that, including my pretend transplant, I have actually undergone 2 major anaesthetics and 2 surgeries in the past 6 weeks. I have also been feeling a bit viraly since last night and my temperature was raised last night and has remained borderline today. I immediately started panicking last night, as a raised temperature can be either a sign on infection or rejection. It is quite unlikely to be rejection at this moment in time, as my bronchoscopy results were so good from Friday, but the fact I had a runny nose pointed towards some kind of cold virus. I overreacted slightly and was worrying myself sick that this wee blip would turn into some major catastrophe. Thankfully the nurses who were on last night were able to calmly reassure me that this was not the case, and I managed to settle down for a reasonable nights sleep.

The doctors today said my chest sounded nice and clear, and my blood results weren't too bad, so they are not concerned at all at this stage. I just have to keep and eye on the temperature and take things from there. The only other negative thing physically is my persistently low magnesium levels (due to immunosuppressant drugs). I was getting IV magnesium when I had the central line in my neck, but when that failed we swapped to oral tablets since no one wanted to try and put a venflon in my rubbish veins. However, my vision is still very blurry and the magnesium level low, so they started me back on IV preparation today. These levels should improve as my kidneys get used to all the new drugs, so hopefully my vision improve soon, as this is really hard to see! ( not that its stopping me blogging mind you;-))

The excellent news of today is that I had another lung function test and it has risen to 51% (1.44Litres). The doctor said this is as expected and still has a long way to improve as the wound heals, and the new lungs settle down. Obviously everyone hopes for near perfect lung function post transplant but to be honest I can't even remember when it was last 51% (some time as school i suspect) so anything extra is a bonus.

I had an exercise session with the physio and we attempted some stairs. Since I have a stair lift at home, its been a while since I tried the stairs, so it was quite difficult. I did get out of breath, but the physio reassured me that this was normal and that it will get much easier as time goes on. I also did 9 minutes on the bike - so aiming for 10 tomorrow :-) I need to keep up with some arm exercises as I have a very stiff shoulder on one side, and have to be careful it doesn't heal with a poor range on movement. I'm sure i will have it flying above my head in the next few days...

The weather was lovely today, so we went and sat outside. I had to wear a face mask due to building works in the hospital grounds, so I did feel a bit of a dafty. The hot weather however brought a new issue to the forefront - the fact I now have to wear high factor sun cream, even in this country, as the immunosuppressants increase your risk of skin cancer. It's a small price to pay for future health though. It was great to get outside and experience the fresh air - plenty more of that when I get home!

My appetite has still been quite good today and mum brought in some home made truffles, which will definitely help! It is quite relaxed on the ward, and although I'm not really meant to be wandering about too much, Andrew can use the ward kitchen to make me hot chocolate and keep things in the fridge etc. so that's a nice touch when you are so far from home.

I asked the consultant today about plans for home, and he said I will go home when 3 things come together;
1. I am physically fit enough (only issue here at moment is the minor temp and magnesium)
2. The nurses are happy that I can do own medication and have had all the training (I think we are more or less there with this one)
3. I feel ready to go (although he said people often need a gentle nudge due to confidence)
The plan is to review things at the end of this week, and all going well I may have a discharge date for early next week! I know that I no where near home and dry, but what a great feeling (albeit terrifying) to think I could be back home so soon. Obviously we will be back down here for outpatient clinic and further bronchoscopy in the near future but much better to be back home in the meantime where I'm sure I will come on leaps and bounds.

Before I sign off for tonight, I must say thank you for all the lovely cards people have sent. Due to the bank holiday weekend there was a bit of a back log and I got lots to open today. You have no idea how much that helped me this morning, especially since I'm not having as perky a day as yesterday. It really cheered me up to have so many folk rooting for me. Likewise I really appreciate all the comments on the blogs....I can't wait for Andrew to bring the laptop in so I can read them all. Sad but true :-)