The Thomas family

The Thomas family
From left to right, Tania, Dave, me and Corina

Monday, 24 January 2011

Another appointment day over

Today was a straightforward appointment day.  The normal procedure is that a car arrives to take me to the hospital and we sit in traffic jams for an hour or so.  On arrival I give blood and am given a copy of the immediately available results to take in when I see the consultant, Emma.  I then sit around for a while reading the paper,especially if it is very busy like today.  When I see her I tell her how I think things are going and list any new or ongoing symptoms since last week.  She then adjusts my treatment if required.  If the blood results which come in later indicate any other changes are required, I'll be phoned by Heidi, the transplant coordinator with further instructions.  This happened last week when I was asked to reduce my Cyclosporin slightly.  Then I order a car to get me home again.

Rather annoyingly, I was due to stop the steroids I have been taking to control the GVHD rash today but woke up to a new rash on my shins so I'm on them for another week.  Fortunately it is a very low dose.

That's it really.  My blog is in danger of get rather boring but I suppose I should look on that as a good thing.  I was chatting to a patient who has just passed his 100 days since transplant and realise that it goes on like this for some time yet.

Anyway, it's enough to tire me out so I'll sign off now.  Next appointment next Monday as usual.

Monday, 17 January 2011

A long day

I had a day full of hospital appointments today, starting with a heart echo at 11am, an appointment with the consultant at 2pm and a session on the pentamadine nebuliser at 3pm.  Finally got home at 6pm.  All seems to be going well with another minor tweak of my anti GVHD steroids (downwards which is good).  Now I'm pretty tired. 

I've also spent a lot of time being driven around today, as the echo was in a different location to the other appointments, and had a variety of drivers to match.  I was taken in by a Lithuanian driver with very strong opinions on lots of things (mobile phones, GPs and benefit cheats were among those in his firing line!).  I just grunted at the appropriate times after a while.  He's a firm believer in the medicinal qualities of a good Cognac, though, so it's not all negative!  Then there was the retired fireman who only needs 3 hours sleep a night and has achieved more by the time I wake up than I do in an entire day!  It takes all sorts.

I am experiencing some interesting side effects from my current list of drugs, in particular a constant taste of salt on my lips, as if I've just eaten something salty.  I don't know what is causing it but hopefully it will go away when I stop the steroids. The other is a well known side effect of Cyclosporine which is to grow excess downy hair on my face.  I'm beginning to feel a bit like a teddy bear!  Fortunately it stops as soon as you stop taking Cyclosporine so it won't be here for ever.

That's all for now, next appointment next Monday so do look in for an update.

God bless all.

Tuesday, 11 January 2011

Happy day

Oops, a day late updating my blog since my latest appointment was yesterday.  All is still going well and, joy of joys, my PICC line was removed!  It is so good to be able to wash my right elbow for the first time in 8 weeks!  I finally found out what PICC stands for - it is Peripherally Inserted Central Venous Catheter - but essentially it was one tube containing three separate fine tubes which ends in a vein at the top of the heart and emerge from the arm near the elbow.  For the past 8 weeks it has been the access by which blood has been taken from me whenever required, and to administer all intravenous drugs.  It has served me very well, and been very well behaved (I gather), but I can't say I'm sorry to lose it.  Blood tests will be taken in the traditional way (ie by needle) from now on.

In terms of my progress, there have been a few tweaks to my drugs to help keep my GVHD under control.  My cyclosporine has been upped slightly and I have a little more time on the steroids, but at a lower dose.  Nothing dramatic but a further reminder of what a juggling act the whole process is at this stage.  It is now 47 days since my transplant so I am nearly half way through the initial critical 100 days.

Anyway, having left this a day late I have to tell you what a delightful day I had today.  Our lovely friends Peter and Katie, who have been mentioned a few times in this blog and visited me a couple of times while in hospital, got married today and Dave and I were honoured to be invited and to be witnesses. They had 14 guests including us, all of whom had to be vetted to ensure that they didn't have any infections which I might pick up! It really was a special day and we left them entertaining more guests (time to exit stage left as I was pretty tired and had probably pushed my luck enough in terms of exposure to germs!).  All of our love and best wishes Katie and Peter.

Tuesday, 4 January 2011

Happy New Year

Here I am freshly back from my second appointment at the hospital since my escape.  All is still going well and I am feeling good.  The one event which I had to report is that the rash, which was relatively low level when I was released, has blown up in the last couple of days and keeps on appearing in new areas.  The worst places are the palms of my hands and soles of my feet as it is a little like extreme pins and needles too.  Also the dreaded puffy eyes are back

This is a manifestation of the battle going on between my old and new immune systems at the moment with my body as the battle ground!  The technical term is Graft Versus Host Disease (GVHD) and we want some of it, but not too much.

I have been given a short course of steroids to nip this in the bud (hopefully) as it is proving increasingly challenging to keep up with the rash with cream alone (there is a new patch every time I look!).

I hope you all had really great new year celebrations (mine were very quiet - Dave me and Avatar!) and wish you all the best for 2011.

Next appointment next Monday, 10 Jan, so look in then.