T + 219 Hippo feet..... (PG)

Posted by raetsel at Thursday, April 23, 2009


........I've got those hippo feet. Rated PG for pics of feet.

So I expect none of you were able to sleep wondering what was the third question I asked the doctor yesterday. 

Well it was about the use of compression socks. As I've men
tion before the blood pressure tablet I am on causes water retention that makes my feet swell and by the end of the day they can be quite uncomfortable.

My dad has some special compression socks to help with his veins and I asked the doc if I could try some and she said it would be worth doing. So from yesterday lunchtime onwards I wore a pair borrowed from my dad and they seemed to really help. I was able to stand at the sink in the evening helping Gareth make coleslaw and potato salad for his charity BBQ and I didn't feel uncomfortable at all.

However today I did a more controlled experiment and wore just one sock to see how much difference it made. 

Here is the photographic evidence of the results. ( You'll be pleased to know clicking on the pics won't embiggen them due to a cock up in how I posted them that I can't be arsed to correct :o)

First both feet first thing in the morning when they are at their most shapely:-



Here we are with one sock on.  (Snazzy eh? ) 

Here they are side by side at the end of the working day (the one on the left that had the sock looks less swollen) :-

Here's a close up of the foot that had the sock. Not a dainty ankle it is true but you can make out the curve of the ankle and the ankle bone.

Some close ups of the other , hippo foot.

A cankle if ever I saw one:-



So I'd say that was a success and I shall ask the doc to prescribe me some compression socks of my own.

T + 218 Aah..Aah...Aach..who?

Posted by raetsel at Wednesday, April 22, 2009

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.

T + 217 Busy ol' Weekend

Posted by raetsel at Tuesday, April 21, 2009

I had very enjoyable and very busy weekend. 


Saturday was spent sorting my paperwork and re-organising all my filing, then I replaced a brake light bulb in Arthur, my Smart Car. The rear  bulb cluster is one of the few user serviceable parts on him, everything else needs to be done with specialist tools at the garage. I also started to rebuild my old PC Camilla to run Windows XP to try my Dad's video capture software. ( Yes I do anthropomorphise a lot of inanimate objects).

Sunday was taken up with ironing, lunch at Mom and Dad's and then a slightly frustrating afternoon trying to get the drivers installed on Camilla to make the sound card work. After trying several different drivers I had to admit defeat. However subsequently I have found the original support disk from Asus so later this week I will return to the fray.

I ended up having a very busy Monday morning as well, as all the printers for one system were migrated to another new print server over the weekend and there were the inevitable few problems. It was a bit of a frustrating time partly due to having to rely on people at depots in Leeds etc. to test things physically on the printers. However by lunch time it was all over bar the shouting.

Tomorrow is the transplant clinic for the first time in three weeks and we will see what the next step is for my steroids. I'm currently on 10mg a day.


T + 212 A Few Pics

Posted by raetsel at Thursday, April 16, 2009

Just a few pics of the picnic and its participants. ( Click to embiggen. )


First the Venue

 Then the participants taken with the self-timer on the camera on Gareth's phone
The "staff" I acquired whilst walking in the woods and it came in very handy to help me up the hilly bits as even after a transfusion my haemoglobin is still only 11 , below it's normal range of 13 - 17. 

The head gear and long sleeves are to keep the sun off as Graft Vs Host is easily triggered by too much sun. ( See my condition even impacts on fun in the sun. )

and yes I do look very fat even though I'm now only a few pounds heavier than my normal fighting weight ( which is overweight it is true but I normally don't look as big as that especially in the face). I'm blaming part of it on the steroids making my face puffy. They can do that and so that is my story and I am sticking to it.


T + 211 If you go down to the woods today....

Posted by raetsel at Wednesday, April 15, 2009

I had a really nice Easter break. Some of it was spent proof reading a friend's BSc Psychology dissertation which was more interesting than it sounds honest and I'm currently very genned up visual/spatial memory and the Corsi Block Task.


The highlight of the holiday however was having a picnic with Gareth on Monday. We went to a picnic site just outside Pershore called Pershore Bridges. After some lovely grub, courtesy of Ocado, sitting on some felled trees in the woods we had a stroll into Pershore itself and, since it wasn't very busy, we walked round the farmers' market  ( note the apostrophe :o).

The weather was excellent and I had a really nice time pretending to be normal.

On the health front my GVHD rash has been fading in and out on a small area on my chest and I am currently back using the Betnovate cream. We shall have to see what happens as I reduce my steroids further.

Tomorrow being a Thursday is an alendronic acid day so that means I get my breakfast half an hour late as I have to let it go down for 30 minutes before I can take my other meds that need to be taken an hour before food. Harumph! Still it is only once a week.

T + 204 Wot no clinic?

Posted by raetsel at Wednesday, April 08, 2009

One  thing I didn't mention about my visit to the transplant clinic last week was that the Doc decided that, since things are relatively settled, I didn't need to go for another three weeks, so no clinic today and none next week either.


At the moment things are going ok as I start the second week of alternating 15mg and 10mg steroids but I did have the starting of a bit of redness and rash on my "necklace area"  ( official medical term used by my consultant, though she also claims "faff" is an official medical term as in not "faffing about with low dose chemo" ). I've used some betnovate steroid cream on the area for the last three days and it has pretty much gone now. We shall have to see how this progresses as I reduce my steroid dose.

The second line drug to replace steroids that I mentioned last week by the way is called mycophenolate. To quote from that link.

Mycophenolate targets an enzyme in the body called inosine monophosphate dehydrogenase that is important for the formation of deoxyribonucleic acid (DNA) in cells. By interfering with DNA, the medication impairs function of immune system cells that become overactive in autoimmune diseases such as lupus.


Interferes with my DNA. Not scary at all then.

Oh and for those of you missing my non-medical posts where I pontificate on some great issue of interest to me watch this space. ( But don't get too excited).

T + 199 Who's Counting?

Posted by raetsel at Friday, April 03, 2009

You might have noticed a slight correction in my post-transplant count. I managed to getout of sync with my days but that has now been corrected and my double century comes up tomorrow. ( Standing ovation from the pavilion?)


On the subject of counting. I'm just back from my umpteenth blood transfusion bringing the total number of units I have had to 24 or well into 3 person's worth.

The transfusion went as smoothly as usual and I was tucked up in a corner of the day unit with my book and podcasts most of the day. The worst bit was losing half my arm hair to the sticking plaster when the cannula was removed.

T + 198 Plus Ça Change......

Posted by raetsel at Wednesday, April 01, 2009

...plus c'est la même chose. As they say in Dudley. The more things change, the more they stay the same as a former favourite rock band of mine, Rush, used to sing.


I went to the transplant clinic today and having got over my steroid withdrawal fatigue ( by having some steroids ) I told the doc that my day to day stamina was much better but I still got out of breath more than normal after exertion such as coming up the stairs. 

This is most likely as my haemoglobin was only just over 9 so my graft is still not making red cells or if it is not enough certainly. So I'm booked in for a blood transfusion on Friday, 3rd April. 

Just in case this isn't the cause of being out of breath after exertion the doc also sent me for a chest x-ray just to rule out any lung problems as sometimes GVHD can affect the lungs. I was a bit concerned that the doctor had gone off me when I saw her notes on the form I took to the x-ray department until I realised SOB stands for Shortness of Breath and not Son Of a Bitch.

We also discussed my GVHD and steroids. I've no rash at the moment and I am taking 10mg steroids one day and 15mg the next. I have been having the odd itchy feeling round my neck so I get the impression my GVHD might be just loitering in the shadows awaiting its chance once I drop my steroids. The doc said we should slow things down a bit and I should stay on the 10/15 regime for two more weeks then drop to 10mg daily.

I've also been given a new tablet alendronic acid to take once a week. This is to counteract the bone thinning side-effects of long term use of steroids  ( I've  been on them almost continuously since Christmas ). Steroids are great drugs but they do bring with them their own issues. I should also make sure I have enough calcium in my diet so milk, cheese etc. ( Yoghurt is out because of the bugs in live culture ).

This is kind of the last chance saloon for the steroids. If this latest tapering attempt causes the GVHD to come back then I will be switched to a different non-steroidal  drug to counter the GVHD, mainly just to get me off the steroids as long term use isn't really ideal. Didn't catch the name of this alternative drug but of course I'll get all the details if I need to go on it.