A lot has happened since I last wrote, and I know I should have recorded things sooner, but these days I find it hard being in the right frame of mind to sort out my thoughts/feelings, never mind writing them down for people to read.
After the 'good' news with regards to my scan a few weeks ago, I saw the 'main' doctor for transplants, who told me he's not as pleased as the other doctors with the results, and that we 'still have work to do'.
I did have my bone marrow biopsy, and also my central line taken out, which is nice to be 'free' from having something dangling out of your chest all the time!
I was taken off all ciclosporin, and my skin GVHD continued to spread (face/head/hands/arms/trunk/legs), and I also developed GVHD in my gastrointestinal tract - not so nice, but I am coping with both types that I have.
Then just over a week ago I started to get out of breath doing simple things (getting out of bed/walking around the house). I waited until I went to my regular 'Tuesday' clinic - where I had my o2 tested, and I was found to only have about 82% oxygen in my blood.
The doctor decided to admit me there and then - I persuaded them to let me go home and get my clothes etc, and I was put in a side room, on Ward 11 later that evening.
My breathing was very bead for the first 2 or 3 days - I was using oxygen after walking jusr a few steps to the bathroom. I had multiple tests - X-ray, CT Scan, Broncoscopy (which I DO NOT recommend), lung function test, blood tests, nasal swabs......
The results came back with a type of PCP. I was put on steroids, and lots of antibiotics - both oral and IV.
Luckily I did improve quickly, and was off the oxygen by Thursday, and off the IV antibiotics by Saturday.
Unfortunatly the doctor thinks I should stay in for a while, which is what i'm finding hard to cope with. I've been here for a week today, and they want me here till about Friday - as long as a scan/x-ray comes back clear, and I will still continue on antibiotics for 2 or 3 weeks when I get home.
'Health' wise I actually feel fine, which I think is quite frustrating as I want to be doing things, not stuck in a hospital room! Luckily my doctor has said I can leave my room, so I've had a few walks around the hospital, and last night he said it's fine for me to go for a drive, and go out to eat somewhere.
'Mood' wise is what I'm finding increasingly hard, and it seems to get harder every time I have to stay in here.
October, November, December I spent a week in each month.
January/February I spent a month in.
May - so far it's been a week........I know there has been a gap, but you get used to being at home, and in your daily routine, happy and safe!
Right now I'm just counting hours until I can get home to my family....thats what I miss the most.