T + 500 Two Mini-Milestones

Posted by raetsel at Friday, January 29, 2010

As the title suggest, this post is about two minor milestones, one health related and one not.


First the health stuff.

T + 500

Yes I have reached five hundred days post-transplant and since we like big round numbers like that I guess it is worth mentioning. That equates to one year four months and a few days which sounds far less interesting.

Since stopping my prednisolone and related drugs things have been ok. I've have a few dodgy days when my energy has been low or I have felt nauseous but they seem to be less frequent now. They did seem to be time related always occurring around about 11:00 am .

Whether this was a certain time after my morning drugs had been digested and metabolised or part of some other biological cycle I am not sure. This is something I can mention when I go see the endocrinologist or hormone doctor as I have now had my appointment for that clinic come through. It's Wednesday 3rd Feb. This clashed with my appointment with the company medical advisors so I have moved that appointment to the 8th of Feb. I know where my priorities lie.

As an aside I have noticed that there are some words that you only really learn how to spell correctly when you have occasion to use them for real, as it were. It took me a while to get that endocrinologist is spelt as it is. In the run up to the year 2000 and the Y2K bug I learnt how to spell millennium ( two "els" and to "ens" ) and regular readers will now that in 2008 I unfortunately had to learn a mnemonic to help me spell diarrhoea.

My skin has been a bit dry and flaky and I am forever vigilant for my GVHD rash but so far the E45 moisturiser applied twice a day is helping a lot.

A Year on Twitter

The 26th January 2009 saw my first real tweet. I say real because I did use twitter briefly a few months before but never really got into it. For reasons lost in the mists of last year @andyhollyhead @gdsr and I ( @simonstanford ) started to make more use of twitter. Although twitter was already quite popular it has since become massively more mainstream and it uses have been extended and expanded.

I've mentioned twitter a few times before but for an overview of the micro-blogging service have a look here.

I'd like to take a few moments to talk about twitter and what it means to me and how I use it.

On my Mac I use an application called Tweetdeck that allows me to group the people I follow into different categories and lay them out in columns so they are easier to read and I'm going to use the groupings I have on that as a means to discuss my twitter use.

Personal

This is the primary reason I use twitter. In this group are all the people I know and have met personally. Twitter updates to and from this group are in one sense just ways to be able to update all my friends and acquaintances about what I am doing. A bit like sending texts to everyone in my contacts list but much easier ( and cheaper ) to do.

These tweets can be banal like what I cooked for my tea ( though sometimes these have links to recipes other people may like ) or more "important" ( and I use the term advisedly ) about my current health status. For this latter use I really am using twitter for micro-blogs as a quick update before I can get to write a long blog like this.

Seeing updates from people I know throughout the day gives me a warm fuzzy feeling ( unless they have bad news but even then it is somehow a positive connection ) and when working from home , as I do 3 days a week, it helps provide a bit of social interaction that would otherwise be provided by colleagues round the metaphorical or physical water cooler.

There are a few people in this category with whom I have otherwise lost touch and this has been a great way to get/keep the friendship fires stoked until I can see them face to face when I am back in full circulation.

Related to that using twitter has also re-ignited my use of facebook as I am able to update my facebook status from tweets and so this has led to me having more interaction on facebook than I used to.

Celebs

Ah celebrities. What is it that makes a lot of us fascinated by celebrities and keen to know what goes on in their lives? I guess celebrities are to some extent people we admire and by finding out about them we feel more connected to them. It makes them more real and maybe feeds some hidden sense that we are by the reflected light of their brilliance made a little more special.

Of course there are celebs and there are Celebs and of course I only follow people who are actually worthy of being Celebs. Well of course I would say that wouldn't I. There can be a certain amount of snobbery about celebrity and I am as guilty of that as the next person.

I like to think I only follow celebs who are talented and entertaining. Such as the King of Twitter, @stephenfry , his minstrel in chief @MitchBenn , the matchless @simonmayo and for a less well known example @boburnham a brilliant young comedy song writer/performer.

In fact add in @alancarr and @wittertainment ( the joint Mark Kermode & Simon Mayo films tweets ) and those are all the celebrities I follow.

The way celebrities use twitter varies a lot and Stephen Fry has written and spoken a lot about this. Stephen has over one million followers whom he can speak to directly. For publicity purposes this can be enormously influential but he at least uses his power with responsibility. If he backs a cause or takes issue with something thousands upon thousands of people will do the same.

Some celebs, whom I no longer follow, used twitter just as an extension of their public personas. They are, to use the showbiz phrase "always on", using twitter just to make jokes and witticisms and telling you very little about the real them. These people rapidly become rather boring and to me it is part of the bargain: I read your tweets about your latest gig, book, charity cause etc. in exchange for personal glimpses into your life now and then.

Other

This is an interesting gallimaufry of tweeters (guess who watches QI ). They are neither famous nor do I know them personally. They can be people that other people follow or people that provide useful information such as the owner of the Electric Cinema. Some are just interesting people who have followed me and I have followed in return and subsequently found them to be really good to follow.


So there you have my life in twitter and the reasons I use it. It is something you either "get" or you don't and it took me a few goes to get it.

Now as for Google Wave what's that all about.....?





T + 496 Chapters One & Two

Posted by raetsel at Monday, January 25, 2010

A busy weekend clearing the study so we can have the carpet laid meant I didn't get chance to redraft anything of my Novel but this evening I have managed to get chapters one and two online:-


T + 493 Reunion - The Prologue

Posted by raetsel at Friday, January 22, 2010

"Reunion" is the title of the first draft of the novel I wrote over 30 days in November 2009 as part of National Novel Writing Month, NaNoWriMo

I have now got round to starting the process of re-drafting the story and putting it up online. This post is to point those of you you are interested to the site where you can read it.


Friday 22nd January - The Prologue

I finally got around to taking another look at the novel I wrote in November for NaNoWriMo.

I've done a 2nd draft of the prologue and this now available at http://www.abctales.com/story/raetsel/reunion-prologue

I was pleasantly surprised to find the prologue was in reasonably good shape especially given it was actually one of the last things to be written that month so I was deep into "let's get this done" frame of mind.

I'm flattered that the piece has been "cherry picked" by the editors of the site and that someone has left some helpful and encouraging comments. It has given me a bit of re-assurance that the project of re-drafting the novel is worth pursuing.

I'll be posting the next chapter or two as I get to them and then see how I feel about it after that.

You'll be able to see all the chapters at http://www.abctales.com/set/raetsel/reunion and there will be a tab page on this site that has that link for quick access.

T + 491 Luke Warm Turkey

Posted by raetsel at Wednesday, January 20, 2010

I went to the transplant clinic this morning and saw my main consultant whom I haven't seen for a few visits now.


I went over how I had been feeling the last couple of weeks and she thought I might have had a minor infection but we would just keep an eye on it for now.

Having gone the previous two weeks without any prednisolone steroid she decided it was now ok to come off the various supporting tablets related to the extra immunosuppression that the prednisolone caused.

So I am to stop taking the following meds:-

Itraconazole - An Antifungal liquid
Alendronic Acid - To stop osteoporosis from the prednisolone
Folic Acid - An blood making "supplement" , as my levels are fine now
Aciclovir - An anti-viral for cold sores and shingles.

This means I am still on:-

Ciclosporin - My main anti-rejection / immunosuppression drug. The dose of this has been doubled to 50mg twice a day because the itraconazole I was taking interacts with ciclosporin meaning you don't need as much when you are on it.
Penicillin - Antibiotic
Septrin - Antibiotic
Amlodipine - To lower the blood pressure that is raised by taking ciclosporin
Fludrocortisone - Steroid to support my adrenal glands
Hydrocortisone - Steroid to support my adrenal glands
Levothryoxine - To support my thyroid gland

It is great to be able to stop taking so many drugs but also a little bit scary.

Thirty percent of transplant patients develop shingles and the aciclovir was helping to keep that at bay to some extent so that is one more thing to watch out for. If I get any tingling or nerve pain or blisters then I have to let the hospital know straight away so I can have high dose aciclovir treatment.

As you might know shingles can be brought on by stress so this is something I will be even more cognisant of now.

The other slight worry is the level of ciclosporin I am on. It is a bit of guess work in relation to how much I need now as I come off the itraconazole. The last time we did this ( several months ago ) my levels went too low and my GVHD flared back up.

Mind you my GVHD was much more aggressive then that it seems to have been of late so hopefully that will be less of a risk this time.

I certainly won't miss the itraconazole as it is pretty nasty stuff and caused me nausea quite often.

I need to keep an eye for my GVHD skin rash and should use my E45 moisturiser regularly to keep my skin hydrated, or in the words of one of the shavings adverts on TV, refuel my skin. ( Perish the thought a real man would use moisturiser). I also have the betnovate steroid cream to deal with any minor outbreaks of rash.

I'm due to go back in three weeks but of course I can call anytime if something untoward happens. I am also going to have an appointment with the endocrinologist or hormone doctor to review my adrenal and thyroid function.

Finally the doc is going to book me in for another CT scan to check I am still in remission as it has been a year since my last one. Not that there is anything to suggest that I am not still in remission but obviously this allow a further check.

The doc told me she saw a patient for a regular check up who had her transplant 17 years ago ( or T + 6205 ) and was still going strong.

I wonder if I will still be writing this blog then? Mind you I'm sure we will all be driving round in hover cars and be directly wired into the Internet via cybernetic implants by then. :o)






T + 485 Call Me Sisyphus

Posted by raetsel at Thursday, January 14, 2010

After my clinic visit last week I woke with eager anticipation on the Thursday morning and took my first Thyroxine tablet and didn't take any prednisolone

I have to say the results were initially less than spectacular, in fact for the next three or four days I woke each morning with a sick giddy headache that didn't go until late afternoon and was still quite tired at the end of the day. I wasn't sure if it was the new tablet, the lack of the old one or the fact that my sinuses were playing up a bit.

I started to wake up with one nostril completely blocked. I have had bouts of sinusitis before but it didn't quite feel like that as I usually have a pain in my cheek bones and lumpy green snot (if you will forgive the vernacular).

Anyway the headaches stopped a couple of days ago and though I am still a little "muzzy" headed first thing I feel much better.

I also am not so sensitive to the cold and have more energy. I've been able to cope with wearing only one fleece though not yet brave enough to give up the long johns.

Invigorated with a new lease of energy and slightly chastened by the fact my 85 year old neighbour has cleared snow off our shared paths and drive twice, I spent my lunchtime yesterday clearing the snow myself. Not something I could have considered even a couple of days ago.

I enjoyed having some physical exercise even if I did wonder if it would prove to be a sisyphean task.

My back is a little sore today not helped by a two hour journey in to work because the M42 was blocked by an accident.

However I was pleased to open the curtains first thing and see my shiny clean path unmolested by snowflakes.

T + 478 Snow Day = P Day

Posted by raetsel at Thursday, January 07, 2010

That's P for prednisolone free day. Yesterday I harnessed up the huskies and made it in to the transplant clinic. As you might expect it was fairly quiet and I was seen quicker than usual.


The registrar I saw went through the usual checks about how I was doing and asked how I felt about stopping the prednisolone altogether and I said I was ready to give it a go. We then discussed how if this works ok then we can look at finally starting a ciclosporin taper. Very encouraging but there is many slip twixt cup and lip as they say so one step at a time.

My adrenal glands are supported by hydrocortisone and fludrocortisone so I shouldn't have the withdrawal symptoms of extreme fatigue this time as I stop the prednisolone. The only thing to watch out for now is whether my GVHD flares up again.

I asked about how I would get off those supporting steroids and the doc said she would refer me to the endocrinologist as though they are easy to get people on to it is harder and more specialised getting people off them. I asked if these were having any immunosuppressive effects but she explained the levels I was getting from these two steroids are just to get me to a level that everyone should have in their system if they are healthy. It is the lack of them that gives me the fatigue. That means I don't have to worry about them suppressing my immune system further it's now just the ciclosporin doing that.

My haemoglobin (Hb) was up at 12 which is back to the highest level it has been since my transplant, so the little anaemic dip I had a while back has disappeared all by itself, however the size of my red blood cells is still rather large indicating what is known as megaloblastic anaemia. However for the time being since my Hb has recovered and my B12 levels were ok the doc is just going to keep an eye on it though she might test the iron levels in the blood as I guess it is possible have a normal Hb but not actually have enough iron in the haemoglobin. (Break out the spinach.)

When I went to see the pharmacist in the clinic to go over the drugs I needed he said he'd had an email from one of the other doctors in the team who had reviewed my blood results and decided my thyroid levels were a bit low and so prescribed me some thyroxin to boost the levels. I guess the email hadn't got to the registrar I saw so I'm glad the pharmacist was on the ball. The feelings of tiredness and sensitivity to cold can be symptomatic of an under-active thyroid but the last time it was tested it was ok but clearly they have been keeping an eye on it.

The pharmacist said the impact of the thyroxin should be pretty immediate and considerable. "A new lease of life" he said is how patients describe it. I guess I have become slightly habituated to feeling knackered by the end of the day so it will be interesting to see how I feel now I am on the thyroxin. It should help with the diet too.

The pharmacist also said that as drugs go it is largely side effect free and reading the leaflet that came with the tablets that seems to be the case as long as the dose is not too high. I'm starting on 50 microgrammes which is the lowest effective dose so it shouldn't be a problem.

These medical leaflets do make me smile sometimes in the casual way they describe things. In the case of this one it talks about the symptoms of overdose so you can recognise it:-

Mild to Moderate Overdose: fever, angina,racing heart, irregular heart beats....
Severe Overdose: Thyroid crisis including irregular heart beat, heart failure, coma and death.

I like the way death is described as a symptom, seems a bit academic at that point really.

T + 473 Happy New Year

Posted by raetsel at Saturday, January 02, 2010

Happy New Year indeed to you all. 2010 well I never.


No change on the medical front in the last couple of days though the bouts of nausea and tiredness that I mentioned last time have not been as bad. Maybe my ciclosporin levels have adjusted back down. Now for related but non-medical items.

Housekeeping

As you will see if you read this via the web page and not an RSS feed, I have taken down the Xmas decorations and gone back to my usual layout. Maybe I will look for another template style but I do rather like this one and it is nice a clear for reading on things like the iPhone so any replacement will have to be just as good.

Looking Back

I was looking back over some of my posts from this time last year and into early 2009 and there are a couple of telling sentences in there. They both relate to being on steroids and how this will delay my immune system recovery and hence returning to a normal life. You can use the archive list at the side of the blog if you want to read them for yourself.

In one I talk about delaying things by a couple of weeks and the other suggests it'll be March or April before I am back in full circulation. Well I really didn't expect to still be on steroids and ciclosporin a year later and whilst it is true I didn't say which March or April I meant I wasn't thinking 2010 at the time either.

That said, maybe March or April this year will be a reasonable goal to be off the anti-rejection drugs and have my immune system returning to normal. I'm on my lowest level of steroids and tolerating it well ( albeit with help for my adrenals from two other steroids ) but even so I'm not counting my chickens this time. There have been too many false dawns in the past year so I'll just play it by ear. Though if I am writing a similar blog entry to this next year and still on ciclosporin and/or steroids then I will be very disappointed.

Overall on the medical front it has been pretty good, a couple of minor infections and only one short hospitalisation. About 40 days off sick in the year which seems a lot, but better than the close to 120 I took in the previous nine months March - December 2008.

Looking back at other things that happened in the year it was May that I persuaded my consultant to relax things a bit on my purdah and I started back in the office two days a week which has been very nice to have the extra human contact during the day. If the office wasn't so far away and only accessible by car I would probably try and do a bit more but as I struggle to get going in the morning especially until the steroids have kicked in I can only manage a couple of 6 a.m. starts a week at the moment.

I was also able to have the occasional trip to the cinema and restaurant. For the most part I have chosen the excellent Electric Cinema in Birmingham which is either fairly quiet or where I can have a sofa seat with Gareth and keep the unwashed masses at bay. The alternative has been Gold Class tickets at Star City where you get big electrically adjustable armchairs that are well spaced out.

I've been to a couple of concerts as well though sadly couldn't go to some because they were standing only and I didn't want to risk things bumping into sweaty Herberts in the "mosh pit".

One of the other highlights has been getting the garden into shape to grow my own vegetables. This started as a little pipe dream when I was staying at Mom and Dad's after recovering from a bout of chemo and whilst lying bed I got to thinking how nice it would be to go out to the garden and pull some spuds and few other veg to bring in for tea. Well we are all set for this growing season, just need to weed the beds and work in some compost.

Late in the year the completion of my novel, Reunion as part of the National Novel Writing Month (NaNoWriMo) competition meant a lot to me and showed me what I can accomplish with a bit of grit and determination and more importantly regular application of myself to a specific task.

Looking Forward

On the medical front it is really the same goal as it was for last year, namely get my immune system back to normal. From that flows everything else really and I should be left on just one antibiotic twice a day to help my spleen which will probably remain under-active as far as its role in my immune system is concerned. (Otherwise known as the reticuloendothelial system for the medically minded. Don't you just love these complicated terms?)

My little milestone for this is getting back to going swimming again which, despite the chlorinated pools, is something you can really only safely do with a fully functioning immune system.

The garden as I mentioned at the end of the "looking back" section will be a major focus for outdoor activity in 2010 and I look forward to starting seedlings on the window cill and transferring them out to the beds. If I can provide some of the veg for this year's Christmas dinner then that would be an achievement even it is a single sprout or parsnip.

I want to build on my NaNoWriMo experience and find forty-five minutes most days and a bit longer at weekends to do something "improving" as the Victorians would probably call it. Initially this will be editing the novel I wrote for NaNoWrimo and giving it a second draft. As I've mentioned previously this will just be correcting typos and removing major inconsistencies. What I do with it then will depend how I feel about it once I have appraised it in the cold light of day and not the white heat of the competition in November.

Aside from that I'd like to spend some time having a concentrated month or two on other projects but I'm not sure what they will be. I'd like to get back into learning Russian again, though on my own at the moment though maybe I can go back to a class by September.

I also want to get back to a regular reading habit of at least half an hour a day. I love reading and find it an immense source of comfort and mental nourishment but, not unreasonably, during NaNoWriMo I got out of the habit and I find it is something I have to make a bit of effort to get into as the lure of television is all too great.

The foregoing are as close as I am going to get to New Year's resolutions but let us consider them more as hopes and aspirations than goals and targets. After all we never know what is round the corner do we? And a good job too I reckon.