T + 218 Aah..Aah...Aach..who?
Today was my first visit to the transplant clinic for three weeks and it appeared that if you averaged my time spent today getting to, from or being at the clinic then it would be the equivalent of going every week.
Ok a slight exaggeration but the traffic was rather sticky getting in and on the way back there was an accident that closed the Queensway tunnel so that journey took even longer. Add to that the fact that the pharmacy took an hour and a quarter to sort out my prescription rather than the usual forty minutes and there was quite a bit of extra delay today.
However, in between all that, I was seen by the doc pretty quick. Not my usual consultant but one of the other ones. One I had not seen before but she was very good.
We discussed my current blood results which are all showing in pretty normal ranges for this stage of the proceedings. My haemoglobin was up to 11.5 thanks to my blood transfusion.
She had a look at the faint rash on my chest, more just a slight discolouration compared to my other skin really, and said it probably was just a tiny bit of GVHD and to put betnovate cream on it again if it gets redder or starts itching. Despite this we agreed to reduce my steroids from 10mg a day to 10mg one day and 5mg the next. The taper getting ever gentler but still going.
One result from the full blood panel from last time ( as opposed to the quick result of the basics they get there and then ) was that my creatinine level was a bit high at 141 where 130 is the top range of normal and my range had previously been 80 - 100. This is a measure of my kidney function and higher numbers mean poorer kidney function.
The doc asked if I was drinking enough and I was able to show her the little book I keep and write down every drink I have. I had to do this in hospital for the fluid balance and it is something I have kept up since coming out. Not least because I know how important it is to drink at least three litres of water a day and it's easy to lose track of how much you have or have not actually had to drink.
The doc decided that it was therefore most likely the ciclosporin that was affecting my kidneys and reduced the dose from 50/ 25mg to 25mg and 25mg.
Oh and my chest x-ray from three weeks ago was clear as well.
I had a couple of queries for the doc this time. Well three in fact. One was if it was ok to take Claritin anti-histamine as we approach the hay fever season. She said it was fine , though as I suspected there's no guarantee I'll have hay fever any more as allergies are closely related to the immune system and I have someone else's immune system now.
Another question was about going to the dentist for a regular check up and the doc advised me not to go for another month or two until I am off the steroids and unless I have any specific problems it's best not to go poking around my teeth whilst I am immuno-compromised. I must write to my dentist to let her know I'm still alive and don't want to be taken off the NHS register. It was hard enough getting back on it two years ago.
As for the third question I had for the doc, well tomorrow I shall hopefully be conducting a little scientific experiment in that regard and to add a small air of mystery to the blog and build some suspense I shall leave that until tomorrow.
My next clinic appointment is in two weeks' time as they want to monitor me a little more closely in relation to my creatinine, ciclosporin and steroid levels.