Showing posts from 2009

T + 470 Happy Twixmas

Happy Twixmas to all my readers. Twixmas of course being the official name for that weird twilight period between Christmas and New Year.
I had a very nice Christmas at home with Mom and Dad and observed all the usual Stanford family traditions. This year I was also able to go see my Brother and his family in the morning of Christmas day as they were all healthy this time.
As far as medical stuff is going, things are ticking along nicely. I've not had any occurrence of GVHD and the 2.5mg of prednisolone steroid every other day is not causing any major problems as far as my energy levels. The only thing I have noticed is a bit of a bout of nausea, tiredness and general yukiness about 2 hours after I have had my morning pills.
It passes after about 15 minutes so I just have to sit quietly and wait it out for the most part. I'll mention it to the doc when I go next Wednesday ( 6th Jan ) but I suspect my ciclosporin levels might be just a bit high and causing this reaction after my …

T + 457 Deck the Blogs...

As you can see I've put the Christmas Decorations up on the blog.....

It's been another tough week this week and I've been in to the office everyday except Wednesday. This has been a special occasion as we have had some visitors from our outsourcers from India to do a Knowledge Transfer for oracle that has required me to be present in the office to assist them.

I've coped but I've been in bed by about 20:30 most night and asleep by 21:00

Wednesday I went to the transplant clinic and saw one of the registrars. My B12 and other tests have come back and they are all fine which is good news on the one hand but means the cause of my low haemoglobin remains a bit of a mystery. However the level was up to 11.3 this week so as it is going in the right direction the doc was happy to just keep it under observation, ( known in medical world as MICO, masterly inactivity and cat-like observation ).

We decided to keep me on the same level of prednisolone of 2.5mg every other day rat…

T + 447 The Other Side of the Fence

Sorry for the delay in updating but I do have a good excuse as you will see...
Last Wednesday I had a clinic appointment and it was pretty routine. I saw one of the registrars who reviewed my results but annoyingly my B12 test from last time was not on the system so we had to repeat it which meant being stabbed a second time.
My prednisolone (a.k.a pred) is now down to 2.5mg every other day and so far I've not noticed any ill effects from that so that is encouraging. I might actually get off the damn things this time. Then there is the issue of getting me off the other two steroids I have to support me getting off the pred but one step at a time.
My haemoglobin remains lowish but stable at 10.3 and until we get the B12 result and a couple of other tests back we won't know exactly the reason for that, however I am pleased to say that although it is low I haven't so far felt the effects of fatigue at even light exertion that I sometimes get.
I'm back in the clinic in two we…

T+436 Winner, Winner, Chicken Dinner!

I had my flu jabs on Monday and apart from a slight residual tenderness on the top of my left arm ( swine flu jab ) I don't have any other effects from the jab. The first couple of hours after the jabs my right arm ( conventional flu jab) ached a bit but that passed off .
Whether this is a good thing or a bad thing and means I have not made any antibodies I am not sure but either way I will not be changing my behaviour in terms of contact with people who have colds , coughs etc.
Gareth had his jabs and had a more noticeable tenderness on his arms, to the point where he could not sleep on the one side ( swine flu again ) so hopefully he is fully protected.
Aside from that things are going ok and I'm down to 2.5mg prednisone steroid a day without any noticeable increase in tiredness or the GVHD coming back.
Just as well as I have needed my energy to make the time to finish writing the first draft of my novel.....
NaNoWriMo Winner
At just past 13:30 today I was officially verified by

T + 428 Keep Working the Jab (PG)

Rated PG for pictures of warts on my.......toe.
I went to the transplant clinic this morning and was seen by the same consultant as last time. Overall things were fairly routine and we are going to reduce my prednisone steroid dose from 5mg one day and 2.5mg the next to just 2.5mg every day.
I've been here before, briefly, but at the time I didn't have the extra support from the hydrocortisone and fludrocortisone so my adrenals crashed and burned and I was in a bit of a state ( plus I then got a viral infection of some kind. ) Hopefully this time round I should keep reasonable energy levels as I taper down my steroid dose.
I mentioned in passing that I had got a wart or verruca on my big toe as I wanted to check if it was ok to use over the counter remedies to try and get rid of it. The doc said this was very common in transplant patients. Verrucas are caused by a virus, we many of us get them as kids and then we develop antibodies and probably never see them again. However my im…

T + 422 Off by one

Just a quick health bulletin. This week has been pretty much like the last three I am pleased to say. I've been going in to the office twice a week and working from home the rest.
Feeling the cold is still an issue and the heating has been on a fair bit more than usual perhaps at home. Also by the end of the day I do feel quite tired but can usually cope and still be productive with washing, ironing and writing.
The hyper-observant of you might have noticed last week's post of 4th November was labelled as T+413 ( i.e. 413 days post transplant ) but it was of course T + 414. I blame a mislabelling of dates in the little book I record how much I have had to drink each day ( to keep me on track for my 3 litres ). Normal service has been resumed.
This blog is short partly because there is nothing much to report on the health front and partly because I'm using my energies to work on my novel. It's going pretty well , I passed the halfway word count of 25,000 words yes…

T + 413 Write On!

It was transplant clinic this morning and I saw the consultant who saw me through my transplant and the first three months post-procedure so it was nice to catch up with him.
We reviewed where I was with everything and the edited highlights are that I am going to stay on the same prednisolone dose of 5mg one day, 2.5mg the next and go back in two weeks' time.
I mentioned about how sensitive I am to the cold nowadays and have to warm up like a lizard basking on a sunny rock before I am fully functional. He said that is often a symptom of thyroid hormone levels but I'd had this tested last time I went to the clinic and he looked it up and the levels were fine. So we are just going to keep an eye on that.
I also mentioned I'd been getting a few aches and twinges in my shoulder and elbow of my right arm, not in the joints themselves but more where the tendons join. I only mentioned this in passing because I know GVHD can attack joints. I was surprised by how thoroughly he quest…

T + 408 Preparations

Well the last week I've been doing pretty well, getting back to normal. I went in to the office Tuesday and Thursday this week and hopefully I'll be able to get back to making that the regular timetable.
That said, since I started reducing my prednisolone to 5mg and 2.5mg on alternate days I have felt a bit rougher in the mornings and quite tired come the evening with a couple of early nights already. Today (Friday) was probably the worst it has been but I've still been able to log on to work ok though I did have a little nap at lunch time , which helped a lot.
We shall have to see how this goes. Not ideal conditions for NaNoWriMo perhaps but what you gonna do? It's like the driver lost in a strange village asks the straw chewing yokel "How do I get to town?" "Oh I wouldn't start from here if I were you" comes the reply.
Speaking of NaNowriMo...
My preparations for this year's competition have been going well and I've worked out th…

T + 400 NaNoWriMo

Say what now? Have I finally gone crazy and started spouting nonsense ( more than usual ).
No, NaNoWriMo stands for National Novel Writing Month and once I explain maybe you will think I have gone mad, but first a quick medical update.
Things have gone well this week and I have been able to log on to work as normal and even visited the office yesterday. I've started a slow taper of my prednisolone steroids and currently on 5mg one day and 2.5mg the next. So far so good.
Also my nausea caused by taking itraconazole seems to have eased so maybe it was because my ciclosporin levels were a bit high before.
So NaNoWriMo or NAtional NOvel WRIting MOnth. Well you can read the details on their site but here's the gist of it...
National Novel Writing Month is a fun, seat-of-your-pants approach to novel writing. Participants begin writing November 1. The goal is to write a 175-page (50,000-word) novel by midnight, November 30.Valuing enthusiasm and perseverance over painstaking cra…

T + 394 Back on Track

I went to the transplant clinic yesterday and took my Dad with me in Arthur. Mostly for the company but also just in case I didn't fancy driving home.
I saw my consultant and explained how I have been getting steadily more energy since starting the additional steroids. The plan now is to try and get completely off the predisnolone over the next month. I am currently on 5mg each day, from next Wednesday that will go down to 5mg one day and 2.5 the next.
The idea is to get free of the prednisolone over the next four to six weeks. Then it comes to the issue of getting off the new Hydrocortisone but I may be referred to the endocrinologist for that for a formal assessment of my adrenal function if I get withdrawal problems when the time comes.
Yesterday I had an extra phial of blood taken to measure my thyroid and cortisol levels so will be interested to see if that shows anything.
The doc said I was basically back on track which is re-assuring.
Back in three weeks' time.
Today I logg…

T + 392 Twitter > Trafigura + Carter-Ruck

First a brief medical update. You'll pleased to know that the extra dose of different steroids, hydrocortisone and fludrocortisone, have helped get my energy back. It's gradually got better over the last week and today I got up at 07:40 to test if I can manage a whole day vertical.
I'm pleased to say I have managed just fine including a walk up the hill to the shop and a brief ride out in Arthur to do a couple of errands. I'm at the transplant clinic tomorrow and then hopefully logging back on to work on Thursday.
Of course the question remains how I get weaned off these new steroids that I am that help wean me off the original prednisolone steroids. But one step at a time.
Now for the real meat of this post.
Soap Box
It's not that often, I hope, that I get on my soap box in this blog. The last time I can recall was for the Atheist Bus Campaign almost exactly a year ago.
So perhaps you can indulge me once again. I should declare at this point that I am a typical left-win…

T + 387 Fight fire with fire

I went to the transplant clinic yesterday and saw my consultant. She could tell that I wasn't my usual chirpy self and as I explained how I had been the previous week she put it down to one of two possible causes.
But first just to recap on the preceding week. I have been very up and down with my energy levels and nausea, though more down than up. Unfortunately I couldn't find a useful pattern to it to relate to my steroid dose as I alternated between 2.5 and 5mg a day.
For example Sunday was a 2.5 day but apart from a bit of nausea before lunch I had a reasonable day, was able to visit my friend Andy in the afternoon and even iron a few shirts in the evening. Monday, a 5mg day, was ok but I was a bit nauseous. Then Tuesday another 2.5mg was a total washout. It was the worst day for fatigue I have known. I had four attempts to get up and each time after about half an hour or so I ended up back in bed. I finally managed to get up and have a shower by 16:00 and I was in bed by abo…

T + 379 I'm not an addict.....

.....I can give up any time I like" as the old government anti-drugs campaign used to say.
I've had another bad week with fatigue and nausea to the point that for large parts of the day I've been hors de combat and certainly not up to logging on to work. I was due to go to the transplant clinic next week but called yesterday to get the appointment brought forward.
I saw one of the registrars who was very nice and she confirmed my suspicions that the cause of my problems is mostly likely steroid withdrawal. Unfortunately at this stage the only treatment is to go back to a higher dose of steroids to get the corticosteroids flowing again as my adrenal glands have decided to take a holiday as they think they are no longer needed.
This is a bit frustrating as this current tapering regime seemed to be working well and I have only had one small outbreak of my GVHD rash that a couple of days of topical betnovate cream sorted.
The doctor said that it is possible to become dependent up…

T + 372 Deja Vu

Since my last post celebrating one year of transplant I have certainly had a deja vu feeling, or déjà vu if you want to be posh.
I've been feeling unwell since last Wednesday 16th September evening and today is the first day I have felt well enough to log on to work, though I'm still not 100%
I'm fairly sure it is mostly steroid withdrawal related, I just get these waves of total fatigue come over me. Unfortunately when it came over me on Wednesday I was in the middle of cooking a lasagne for my tea using a new recipe. I'm not quite sure how I managed to get through it to be honest though as soon as it didn't need any attention from me I had a lie down while it finished cooking. The result was passable and I did find eating a portion perked me up a bit so I wonder if it is blood sugar related? I'll ask the doc about this when I go to the clinic next.
The following morning I realised I had left out the wine and only used half the amount of cheese sauce I should hav…

T + 365 Now We are One

My immune system is now one year old. It depends exactly on how you count it but I received by donor's cells on Tuesday 16th September 2008.
I was in the office so I bought cakes and cookies for people to celebrate and when I got home Gareth had got me a birthday card with a "1" on it and cooked me a celebratory meal for dinner ( with a little help from M&S).
The year has flown by in many respects and I was reading back over some of my posts at the time. It bought a lot of memories back. Can't say they are exactly happy ones as I was quite ill for most of the month of September but it is something to be able to say "I got through that".
Unfortunately my body has decided to join in the nostalgia by making me feel like crap, especially in the mornings. I haven't quite pinned down what is causing it and yesterday I was pretty good and able to go into the office but today I woke with the collywobbles and feeling nauseous and lacking in energy and this happ…

T + 360 Back to "Normal"

On Wednesday I went to the transplant clinic and got some good news as my blood counts and my neutrophils in particular had returned to their "normal" levels. Normal for me is not quite normal for anyone else as I am still on steroids and ciclosporin both of which suppress the immune system white cells.
We are going to have yet another go at reducing my steroid dose but this time I have some new 2.5mg tablets as well as my usual 5mg. I will try 5mg one day and 2.5 the next for two weeks and then 2.5mg every day for the following two weeks before I go back to the clinic in a total of four weeks' time.

The visit didn't get off to a great start as after the phlebotomist had taken my blood, rather than taping a ball of cotton wool over the puncture mark she used some type of gauze packing. I thought nothing of it but as I walked out the room I was met with rather shocked faces from a couple of the other patients in the waiting room. I looked down and saw the blood was runn…

T + 350 Here I Go Again.... (PG)

though unlike the lyrics to the song by Whitesnake I'm not "on my own".
Rated PG for vomit.

Since my last visit to the transplant clinic ( and blog as it happens ) things have been rather up and down. It took me until the following Wednesday to feel well enough to return to logging on to work.
I took my first GCSF injection on that first Wednesday evening with some trepidation but it all seemed to go ok and I certainly didn't have any immediate reactions like I did last time.
The problems this time have come the next morning instead. Both last Thursday and Sunday, the day after my evening GCSF injections I have felt quite nauseous and on Sunday I was sick just after taking my morning Itraconazole and Penicillin. ( I take these first thing as they need to be on an empty stomach and an hour before food ). I guess it was good that I hadn't had my breakfast before I was sick.
I was wiped out for most of the day and took some anti-sickness tablets to help me out for the re…

T + 337 Wot No Flu? (PG)

Rated PG for discussion of vomit and pictures of rash.
After being discharged by the doc at about 11:00 last Monday due to waiting for tablets I didn't get to leave the ward until about 18:00. My ever present Taxi driver, Dad, came up during normal visiting at 14:00 and stayed with me whilst we waited.It was a bit odd that, like the nurses who came into my room, he had to wear an apron and a mask:-
even though we were going to be driving home together once I had my meds. I guess the idea was just to stop it spreading on the ward I was on.
When I got back to the flat it looked liked I was not the only resident of College Road who wanted to take precautions (thanks Gareth ;o) :-

That evening I took my first dose of Tamiflu along with a ham sandwich. The leaflets warn that nausea and vomiting are common side effects of Tamiflu but usually only with the first dose and that effect is reduced if the tablets are taken with food. However all was well and I thought I was going to be ok.
The fol…

T+329 Back in hospital

Yes a live blog posting from the QE hospital. It all started on Saturday when I woke feeling rough with absolutely no energy. then my anti-fungal medicine made me heave though I wasn't actually sick.

My temperature was a bit up at 37.6 more than my usual 36.5 but below the danger level of 38. Unfortunately I had to logon to work to help with the go live of a new server and my colleague (and now boss) was on holiday so there was noone to cover for me. I struggled through the changes needed in between spells in bed.

Sunday I felt a little better and my temperature was down to 37.3 but I still had no energy at all. Monday I started out feeling even better but after bringing the sainsbury's delivery upstairs and putting it away I felt worse again and had to go back to bed. I had asked mom and dad to pop over in the afternoon and when I got up to see them I had another bout of dry heaving with a tiny spec of blood in it (most likely from the straining + not fetching anything up) . I …

T + 323 I Forgot to Remember Not To Take my Tablet

This morning I went to the transplant clinic for the first time in six months and it was, just marginally, a bit more unusual than a regular visit.
I had my bloods taken and then realised this morning I had already taken my ciclosporin which I am not supposed to do when I have bloods done as one is to measure the "ambient" level in my blood and this would be distorted by the morning dose. I was obviously out of practice going to the clinic.
Then through a convoluted sequence of thought processes which I won't go into here, I convinced myself I hadn't actually taken my ciclosporin and took my second dose that I would normally take at tea time. Oops.
I then went in to see the doc. She checked the skin on my chest and neck and said there was little or no evidence of Graft Versus Host Disease so we are going to reduce my steroids from 5mg per day to 5mg one day and none the next. Getting ever closer to coming off them.
My other blood results were the second unusual thing. M…

T + 317 Nothing to See Here

On Tuesday I went to the late evening clinic at the eye hospital having been referred by my optician because my pressures were a bit high.
I got my long suffering taxi driver Dad to take me in case I had my pupils dilated and couldn't drive back. We arrived early and it was pretty busy. My appointment was for 18:45 and I was seen about 19:30 I think. They were short staffed apparently.
The doc I saw did the usual eye exam checks with the big light and called a colleague to come in to take a look at my map-dot-fingerprint dystrophy caused by my dry eye syndrome as he thought the colleague would like to see it.
The doc then recommended I start using the night cream lacrilube again and told me to come back in six months. At which point I gently reminded him I'd been referred for abnormal pressures and could he check them. I guess he'd had a long day. Anyway the good news is that my pressures are fine and I will go back in six months for a general check. The checks they do in o…

T+308 Intermission

Sorry for the bit of an intermission on my blog. Of course in one sense it means nothing exciting is going on medically which is a good thing but I really should try and manage at least one update a week. I will try harder.

My excuse, such as it is, is that last week I was working Wednesday to Friday doing a disaster recovery test at Hewlett Packard's (HP) recovery centre in Rugby. This is where we pretend some of our systems have exploded and we go down and try and recover them using just the backup tapes onto new equipment provided by HP.

These are relatively intense sessions albeit with some periods of inactivity whilst we wait for the data to be recovered from the tapes. This along with travelling to and from Rugby for three days meant I was really tired by the end of each day. More so than usual. You'll be pleased to know, however, we recovered the systems successfully even if the client never turned up to test them.

In other news I finally got my eye hospital referral sorte…

T + 295 Irrational Pleasures

Well I finally got the automated system at City Hospital to understand me when I encountered it again today. When it says "Did you mean Eye Centre or Eye Department at City?" you have to say "Eye Centre" again not say "Yes". Not really intuitive particularly given the way the inflection is on the sentence.
After that, when I got through, my referral from Vision Express is still not on the system despite supposedly having been posted two weeks ago and faxed 3 days ago. The woman at the eye centre said give until Friday and if not on the system by then get Vision Express to fax it again and she will walk it through the system.
Meanwhile a non-medical item.
Irrational Pleasures
There are some things in life that give you far more pleasure than they really ought. Disproportionate to the significance of the item or act. I refer to these as irrational pleasures.
As you will see below I have currently deprived myself of one my specific irrational pleasures and that…

T + 293 "I'm sorry I didn't catch that"

Well another week has flown by, such a trite saying I know but I feel the need to say it somehow.
Quick recap on the week's events:
The 20/20 Cricket on Sunday 28th June with Dad was a great day out. The weather held and there was an exciting last ball win for Warwickshire.
The week at work has been its usual intense mix of tasks. I made it in the to office on Tuesday and Thursday, as is becoming my routine now. Whether I shall have to retreat to my bunker next month when Swine Flu takes a real hold or not remains to be seen.
I chased the eye hospital about my referral from the opticians from the 25th June and it was there I encountered City Hospital's wonderful voice recognition system. "Please state the name of the department or person you wish to contact". I said "Eye Centre" not expecting that to work at all, but low and behold back came the response "Did you say Eye Centre?" but then despite three attempts it could not understand me saying the mu…

T + 283 The Eyes Have it

Well the holiday is nearly at an end but the weekend still has some events to finish off the week. Saturday is a birthday lunch at Mom and Dad's and Sunday Dad and I are off to the 20/20 Cricket at Edgbaston.
Wednesday I went to transplant clinic for the first time in four weeks. On the whole it was pretty good apart from a cock up with pharmacy meaning I had a three hour wait to get my drugs.
The best news was that I don't have to go to the clinic for six weeks this time. (Unless of course something crops up and then I can just call the ward or the day unit to get advice and come in if necessary). The plan is to continue reducing my steroid dose three weeks now at 10mg one alternating with 5mg then next , then another three weeks at 5mg daily.
A slight disappointment was that my haemoglobin had fallen from 11.9 four weeks ago, when it appeared to be on the rise, to 10.6 this time. I've not felt any of the usual side effects of low haemoglobin so far and I am not in the tr…

T + 279 A Week Off

I don't mean a week off from writing the blog, though that is also apparent, but rather the fact I have a week off from work. Which is what is going to be what I believe is known in modern parlance as a "staycation".
The previous week at work was pretty intense as I was covering all the systems for my boss for the first part and then trying to clear the decks before I went "away".
On Friday Arthur, my Smart Car, developed a rubbing noise when in reverse so I took him in for a service this morning, so I didn't get a lie in as the appointment was for 08:00
Tomorrow I have a former work colleague coming to take me to lunch to say thanks for reading his Psychology dissertation. He's about to start a PhD on brain imaging at Birmingham University. I think I have mentioned this before. Anyway as someone who's attempt at academia didn't quite run to plan I'm really pleased for him and only a tiny bit jealous.
Wednesday morning I am at the transplant cli…

T + 271 Glee Club

Yesterday I had a night out at the Glee Club in Birmingham for an evening of stand up comedy. Though I am a huge fan of stand up I've only ever been to the Glee Club a couple of times and they were both music gigs.
So here are my thoughts on the venue and the acts we saw.
The booking said it was allocated seating but didn't actually say where we would be seated so after a quick drink in the rather swish Glee Club Lounge we headed upstairs to the main room and were shown to our seats. The room is laid out with theatre style curved rows with small tables in front of free-standing, and not overly comfortable, chairs. We were shown to seats in the second row just off centre, about 4 feet from the small stage. A great view of the stage but potentially a great view for the acts to see us and make us part of the performance.
Luckily there were a large group of girls in the front row and they provided most of the audience interaction. We were in our seats by about 20:00 but the show did…