A particularly good day

Hi all, apologies for not posting yesterday, I just didn't get around to it.  It was a pretty full day for me.

First of all I went up to London early and met up with Dave for a Valentine's lunch.  Getting there was fun as the driver was given the hospital address rather than the restaurant address (even though they were happy for me to go to the restaurant) so we went sailing past Soho until I pointed this out.  Then he thought I said Fleet Street instead of Frith Street so we passed Soho again!  Fortunately I had plenty of time and finally arrived at the appointed restaurant at the appointed time!  Dave had requested a quiet corner which we got.  The lunch was lovely.

Then Dave and I walked to the hospital as it was such a nice day and we needed to walk off the enormous meal.  It was about a mile and a half which is probably my limit at the moment.

At the hospital I had 14 vials of blood taken, I think that is a record, as 8 were for something called Chimerase testing.  This is an important test as it measures how much of my blood is my old stuff and how much the donor's.  If there is too much of mine they give me a "top-up" transfusion from the donor to help things along. 

Then I saw my consultant, Emma. My rash has been behaving quite well so no need to go back on the steroids and I was taken off one more drug, for my stomach as I have not been having any problems there.  I am now down to 4 tablets in the morning and 3 in the evening which is quite manageable.  And I have been signed off for two weeks!  So I won't have to go in next Monday unless something comes up.

Finally, the results from the missing blood had miraculously appeared and they were very good news.  My last 2 tests of this sort (pre transplant) showed the percentage of leukhaemic cells in my blood as 30% and 45%.  The results for 17 January were 1.7%!!!  This is largely down to the donor immune system mopping them up which is brilliant news.  Since we thought the blood had been lost they took more last week so I'll have a second result in a week or so's time which hopefully will back this up.

Then I had my monthly pentamadine nebuliser before heading home during the rush hour and getting back at 6.15m.  For anyone who doesn't know what a nebuliser is, the best thing to think of is the caterpillar in Alice in Wonderland, although there is nothing recreational about pentamadine!  I have this to protect me from an opportunist infection known as PCP (a form of pneumonia).

So a pretty full day but lots of good stuff.  My next appointment is 28 February but I will try to do an update in the meantime, especially if I have anything to report.

All the best.

Onwards and upwards

Well, that's another appointment day over and again, all is well.  I'm delighted to say that the rash has calmed down so much that I have been taken off the steroid tablets completely, just relying on the steroid cream to control it.  I hope that lasts.  The real bonus is that I can also stop taking another medicine which is a syrup which has to be taken on an empty stomach.  I've been having to get up very early, take a dose, and go back to bed rather than get up and take it and then have to wait for my breakfast.

One frustration is that three weeks ago I had extra blood taken to be sent to Hammersmith Hospital where it is tested for the level of leukaemia in it.  This will be the first evidence of how the transplant has really worked.  Sadly the sample never arrived so I didn't get the long awaited results today.  They took more blood today and couriered it to ensure that it does not go awol again, but that's another two weeks wait for the results.  Oh well!

It was lovely to come home to a beautiful bunch of flowers sent by my friends at my carving group, the Woodentops.  Many thanks everyone, they look and smell lovely.  I am hoping that I may be able to get along to the next meeting at the beginning of March.

Also, a mention for Nicola who was my girls' nanny for several years and who posted a comment last week.  Lovely to hear from you Nicola and I bet Elliot has changed at least as much as the girls have!  My email address is thomascathy@virginmedia.com and it would be great to see photos of the brood, and to have a proper catch up.

Next update is next Monday after my appointment.  In the meantime God Bless to you all.

And another one down

Well that's another of my Monday appointments over with no major dramas.  I had a bit of a Cyclosporin spike last week so was called and told to miss a few doses and then reduce the regular dose - all part of the fine tuning!  I'll find out today (Tuesday) if my levels are still high and I need to reduce the dose further.  I have been asked to collect my urine over a 24 hour period to check my kidney function - mmm that will be fun.

They're also weaning me off the steroid which I've been taking to control the GVHD so I'm now on one 5mg dose every other day, and have been given tiny 1mg tablets so that we can fine tune further if required.  I still have the rash which is evidence of the GVHD in various places on my body but it has calmed down, with the steroid and steroid cream I use.

My hair is showing good signs of growing back.  It's a bit strange as it is dark on top and fair at the sides so I'm starting to look a bit like a badger,what with the furry face too!  Apparently it is a mystery what people's hair will grow back like.  It is highly likely that I will change from straight fair hair to curly dark hair (my mother's hair type), although I suspect whatever result will have a heavy smattering of grey.

Thank you to everyone who is continuing to send emails and comments, it's great to hear from you and I apologise if I don't reply to them all.

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.

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.

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.

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.