Showing posts from January, 2010

T + 500 Two Mini-Milestones

As the title suggest, this post is about two minor milestones, one health related and one not.
First the health stuff.
T + 500
Yes I have reached five hundred days post-transplant and since we like big round numbers like that I guess it is worth mentioning. That equates to one year four months and a few days which sounds far less interesting.
Since stopping my prednisolone and related drugs things have been ok. I've have a few dodgy days when my energy has been low or I have felt nauseous but they seem to be less frequent now. They did seem to be time related always occurring around about 11:00 am .
Whether this was a certain time after my morning drugs had been digested and metabolised or part of some other biological cycle I am not sure. This is something I can mention when I go see the endocrinologist or hormone doctor as I have now had my appointment for that clinic come through. It's Wednesday 3rd Feb. This clashed with my appointment with the company medical advisors so I h…

T + 496 Chapters One & Two

A busy weekend clearing the study so we can have the carpet laid meant I didn't get chance to redraft anything of my Novel but this evening I have managed to get chapters one and two online:-

T + 493 Reunion - The Prologue

"Reunion" is the title of the first draft of the novel I wrote over 30 days in November 2009 as part of National Novel Writing Month, NaNoWriMo
I have now got round to starting the process of re-drafting the story and putting it up online. This post is to point those of you you are interested to the site where you can read it.
Friday 22nd January - The Prologue
I finally got around to taking another look at the novel I wrote in November for NaNoWriMo.
I've done a 2nd draft of the prologue and this now available at
I was pleasantly surprised to find the prologue was in reasonably good shape especially given it was actually one of the last things to be written that month so I was deep into "let's get this done" frame of mind.
I'm flattered that the piece has been "cherry picked" by the editors of the site and that someone has left some helpful and…

T + 491 Luke Warm Turkey

I went to the transplant clinic this morning and saw my main consultant whom I haven't seen for a few visits now.
I went over how I had been feeling the last couple of weeks and she thought I might have had a minor infection but we would just keep an eye on it for now.
Having gone the previous two weeks without any prednisolone steroid she decided it was now ok to come off the various supporting tablets related to the extra immunosuppression that the prednisolone caused.
So I am to stop taking the following meds:-
Itraconazole - An Antifungal liquid Alendronic Acid - To stop osteoporosis from the prednisolone Folic Acid - An blood making "supplement" , as my levels are fine now Aciclovir - An anti-viral for cold sores and shingles.
This means I am still on:-
Ciclosporin - My main anti-rejection / immunosuppression drug. The dose of this has been doubled to 50mg twice a day because the itraconazole I was taking interacts with ciclosporin meaning you don't need as much when you…

T + 485 Call Me Sisyphus

After my clinic visit last week I woke with eager anticipation on the Thursday morning and took my first Thyroxine tablet and didn't take any prednisolone

I have to say the results were initially less than spectacular, in fact for the next three or four days I woke each morning with a sick giddy headache that didn't go until late afternoon and was still quite tired at the end of the day. I wasn't sure if it was the new tablet, the lack of the old one or the fact that my sinuses were playing up a bit.

I started to wake up with one nostril completely blocked. I have had bouts of sinusitis before but it didn't quite feel like that as I usually have a pain in my cheek bones and lumpy green snot (if you will forgive the vernacular).

Anyway the headaches stopped a couple of days ago and though I am still a little "muzzy" headed first thing I feel much better.

I also am not so sensitive to the cold and have more energy. I've been able to cope with wearing only one f…

T + 478 Snow Day = P Day

That's P for prednisolone free day. Yesterday I harnessed up the huskies and made it in to the transplant clinic. As you might expect it was fairly quiet and I was seen quicker than usual.
The registrar I saw went through the usual checks about how I was doing and asked how I felt about stopping the prednisolone altogether and I said I was ready to give it a go. We then discussed how if this works ok then we can look at finally starting a ciclosporin taper. Very encouraging but there is many slip twixt cup and lip as they say so one step at a time.
My adrenal glands are supported by hydrocortisone and fludrocortisone so I shouldn't have the withdrawal symptoms of extreme fatigue this time as I stop the prednisolone. The only thing to watch out for now is whether my GVHD flares up again.
I asked about how I would get off those supporting steroids and the doc said she would refer me to the endocrinologist as though they are easy to get people on to it is harder and more specialise…

T + 473 Happy New Year

Happy New Year indeed to you all. 2010 well I never.
No change on the medical front in the last couple of days though the bouts of nausea and tiredness that I mentioned last time have not been as bad. Maybe my ciclosporin levels have adjusted back down. Now for related but non-medical items.
As you will see if you read this via the web page and not an RSS feed, I have taken down the Xmas decorations and gone back to my usual layout. Maybe I will look for another template style but I do rather like this one and it is nice a clear for reading on things like the iPhone so any replacement will have to be just as good.
Looking Back
I was looking back over some of my posts from this time last year and into early 2009 and there are a couple of telling sentences in there. They both relate to being on steroids and how this will delay my immune system recovery and hence returning to a normal life. You can use the archive list at the side of the blog if you want to read them for yourse…