Showing posts from September, 2009

T + 379 I'm not an addict.....

.....I can give up any time I like" as the old government anti-drugs campaign used to say.
I've had another bad week with fatigue and nausea to the point that for large parts of the day I've been hors de combat and certainly not up to logging on to work. I was due to go to the transplant clinic next week but called yesterday to get the appointment brought forward.
I saw one of the registrars who was very nice and she confirmed my suspicions that the cause of my problems is mostly likely steroid withdrawal. Unfortunately at this stage the only treatment is to go back to a higher dose of steroids to get the corticosteroids flowing again as my adrenal glands have decided to take a holiday as they think they are no longer needed.
This is a bit frustrating as this current tapering regime seemed to be working well and I have only had one small outbreak of my GVHD rash that a couple of days of topical betnovate cream sorted.
The doctor said that it is possible to become dependent up…

T + 372 Deja Vu

Since my last post celebrating one year of transplant I have certainly had a deja vu feeling, or déjà vu if you want to be posh.
I've been feeling unwell since last Wednesday 16th September evening and today is the first day I have felt well enough to log on to work, though I'm still not 100%
I'm fairly sure it is mostly steroid withdrawal related, I just get these waves of total fatigue come over me. Unfortunately when it came over me on Wednesday I was in the middle of cooking a lasagne for my tea using a new recipe. I'm not quite sure how I managed to get through it to be honest though as soon as it didn't need any attention from me I had a lie down while it finished cooking. The result was passable and I did find eating a portion perked me up a bit so I wonder if it is blood sugar related? I'll ask the doc about this when I go to the clinic next.
The following morning I realised I had left out the wine and only used half the amount of cheese sauce I should hav…

T + 365 Now We are One

My immune system is now one year old. It depends exactly on how you count it but I received by donor's cells on Tuesday 16th September 2008.
I was in the office so I bought cakes and cookies for people to celebrate and when I got home Gareth had got me a birthday card with a "1" on it and cooked me a celebratory meal for dinner ( with a little help from M&S).
The year has flown by in many respects and I was reading back over some of my posts at the time. It bought a lot of memories back. Can't say they are exactly happy ones as I was quite ill for most of the month of September but it is something to be able to say "I got through that".
Unfortunately my body has decided to join in the nostalgia by making me feel like crap, especially in the mornings. I haven't quite pinned down what is causing it and yesterday I was pretty good and able to go into the office but today I woke with the collywobbles and feeling nauseous and lacking in energy and this happ…

T + 360 Back to "Normal"

On Wednesday I went to the transplant clinic and got some good news as my blood counts and my neutrophils in particular had returned to their "normal" levels. Normal for me is not quite normal for anyone else as I am still on steroids and ciclosporin both of which suppress the immune system white cells.
We are going to have yet another go at reducing my steroid dose but this time I have some new 2.5mg tablets as well as my usual 5mg. I will try 5mg one day and 2.5 the next for two weeks and then 2.5mg every day for the following two weeks before I go back to the clinic in a total of four weeks' time.

The visit didn't get off to a great start as after the phlebotomist had taken my blood, rather than taping a ball of cotton wool over the puncture mark she used some type of gauze packing. I thought nothing of it but as I walked out the room I was met with rather shocked faces from a couple of the other patients in the waiting room. I looked down and saw the blood was runn…

T + 350 Here I Go Again.... (PG)

though unlike the lyrics to the song by Whitesnake I'm not "on my own".
Rated PG for vomit.

Since my last visit to the transplant clinic ( and blog as it happens ) things have been rather up and down. It took me until the following Wednesday to feel well enough to return to logging on to work.
I took my first GCSF injection on that first Wednesday evening with some trepidation but it all seemed to go ok and I certainly didn't have any immediate reactions like I did last time.
The problems this time have come the next morning instead. Both last Thursday and Sunday, the day after my evening GCSF injections I have felt quite nauseous and on Sunday I was sick just after taking my morning Itraconazole and Penicillin. ( I take these first thing as they need to be on an empty stomach and an hour before food ). I guess it was good that I hadn't had my breakfast before I was sick.
I was wiped out for most of the day and took some anti-sickness tablets to help me out for the re…