T + 164 A Year on the Blog

Posted by raetsel at Friday, February 27, 2009

Today is the first anniversary of this blog. In the last twelve months I've made 251 posts or an average of one every 1.45 days.

I've enjoyed writing it and it has been a useful resource for me just in terms of being able to check up when things happened, never mind the other benefits that accrue from writing it.

I spent a while yesterday reading over some of the posts and it has been surprising some of the things that I hadn't exactly forgotten but that I hadn't thought about for a while. One of which is that for several months of last year I went around with a tube sticking out of my chest that led straight to a major blood vessel over my heart. It all seemed perfectly normal at the time but now seems slightly surreal again. 

On the whole the tone of the blog has been upbeat and positive if sometimes a little clinical ( in every sense of the word ). People have commented that there hasn't been that much emotion in the posts. The reason for this is that when I am having a bad moment ( and I do have them, oh yes ) I don't feel like writing about it and then when I start to feel better about things I think "well what was that all about?" and it doesn't seem worth mentioning.

Still let me state for the record that the last year has been bloody difficult to deal with at times and I'm grateful for the support of my family and friends who have helped me get through it. 

As for what the coming year will hold, well of course one can never say for certain, but if it goes well then by this time next year I'll be back leading a normal life, whatever that means.

I hope you have enjoyed the posts on this blog and found them by turns informative and entertaining. 

Thanks for reading.

T + 163 Hit and Run

Posted by raetsel at Thursday, February 26, 2009

I went to the transplant clinic yesterday morning but as everything is going ok at the moment we'd agreed the previous week that I could just have my blood tests and then go. No need to see the doc this week.

So the visit was short and sweet. 

Just like this blog entry.

T + 161 Two Awfully Big Adventures

Posted by raetsel at Tuesday, February 24, 2009

I had a very nice weekend, the highlight of which was a rare evening out at my friend Andy's. His house is one the three places I've allowed myself to visit, the other two being Mom and Dad's and of course the hospital. Andy cooked some lovely food, his company was charming as ever and we had some fun on the Wii.

Nights like that mean such a lot to me at the moment as my general confinement seems to stretch out interminably into the future. ( A slight exaggeration perhaps but that is a bit how it feels currently. )

Yesterday I had some roofers start work on replacing the soffits and guttering on the flat and of course they needed to be supplied with the requisite number of cups of builders' tea. As neither I nor Gareth drink ordinary tea ( Earl Grey or Green Tea being our tipple ) I only keep a few tea bags in. 

So after lunch I decided I would venture up to the local shop to acquire provisions. It was about 13:30 so the shop wouldn't be that busy and I could always not go in if it looked like it was full of the cold and flu ridden unwashed masses. It may seem like a small thing but being able to do something like this for myself rather asking my Dad or Gareth to bring in some tea bags again meant a lot to me.

I won't be making a regular habit of these sorts of excursions, especially to the shops but every now and then I think it's a reasonable balance of risk versus reward.

T + 156 I want to ride my Freecycle

Posted by raetsel at Thursday, February 19, 2009

I went to the transplant clinic yesterday for what was my fifth hospital visit in eight days. I haven't been this "medical" for a while. Hopefully things will settle down now.

The visit was fairly routine. The consultant reviewed my steroid regime and we are going to reduce by 25mg  every five days until we get down to about 50mg ( currently just started 75mg ) then go to 40mg, then halve that every 5 days until we get to 10mg. Then we will review how my GVHD is and work out a plan for coming off the related anti-fungal without dropping my ciclosporin level.

This all assumes of course that the GVHD will stay away as I reduce the dose like it did last time. It's a case of trial and error or clinical observation and management to give it a fancier name.

After clinic I logged on to work and picked up from where I was before without too much difficulty. The new blood is working well and my haemoglobin reading yesterday was back up to a reasonable 11.3 ( will it ever get back to the dizzy heights of 14 that it was before I started treatment I wonder? ).


Just a little plug for a great service available in Birmingham and indeed throughout the country. Freecycle is a network of groups that allow people to pass on any unwanted items to other people rather than taking them to the dump for landfill or recycling.

I recently bought a new TV and my old but perfectly functional TV has now been freecycled and was picked up by someone today who is going to take it to his Grandad's care home where there TV is in rather poor nick.

The system is run as a bulletin board using Yahoo Groups here and the rules are pretty simple. You can't charge anything for your item including any transport so most people arrange for items to be collected.

It's a great service and worth a look for anything you want to get rid of that still works or indeed want some new "stuff" for free.

T + 154 All Topped Up

Posted by raetsel at Tuesday, February 17, 2009

I had an understandably quiet weekend, the highlight of which was cooking Coq au Vin on Saturday complete with flaming brandy for the chicken before it went into the casserole. ( Only a few hairs on the back of the hand singed ). 

My GVHD rash has abated almost completely so the steroids are doing their trick and my cold has gradually got better. Energy levels have been a bit odd, affected in part by the steroids I think. On Sunday night I was awake until 01:30 but last night I went for a little lie down at 20:00 and only woke at 23:00 to take my tablets and then slept until 07:00 this morning.

Dad took me to the day unit for my blood transfusion, three more units of red cells bringing me up to a total of 21 units since May 2008. Nearly three and a half people's worth. Thanks again to all of you who donate. Keep up the good work.

It was fairly straight forward apart from needing three attempts to get cannula into what remains of my veins. The first unit started at 10:00 and I was all done by 15:00 

The doctor saw me and said I can reduce the steroids from 100mg to 75mg. My ciclosporin level is still pretty low at only 109 so I'm increasing that dose from 50mg/25mg to 50/50 and that may need to go up a bit more later.

Tomorrow I'm at the transplant clinic in the morning and in the afternoon I'm planning to log back on to start work again. I certainly feel a lot better than I did a week ago.

T + 150 Now read on.....

Posted by raetsel at Friday, February 13, 2009

So yesterday we left our hero in a cliff hanger, today the resolution......

...and with one bound he was free!

( Quick aside here, the phrase "and with one bound he was free" as a cheat to get out of a tricky situation has dropped into the language but I couldn't find a definitive origin on my brief search on the 'net though a few hint to the original source so if you know it and can find a citation for it please let me know).

Ok it wasn't quite a cliff hanger of Dick Barton standard. My dad took me to the day unit yesterday so that I wouldn't have to manage the walk from the car park. I had my bloods taken for my ciclosporin level and I told the nurse I needed to see a doctor about the rash on my chest to see if I needed to go on steroid tablets.

The nurse initially tried to contact the main registrar from the Bone Marrow Transplant ward who had looked after me when I was in for my transplant but she was not available at the time. So she then asked the doctor that runs the day unit if he would have a look and he said he would when he had finished the bone marrow biopsy he was doing.

I had a bit of a wait and then I saw the day unit doctor and he said that I might need a skin biopsy just confirm it was Graft vs Host and not some other skin rash that had started. There was talk of local anaesthetics and round needle puncture biopsy but then the BMT doctor said she would be down in a bit so the day unit doctor said he would let her decide what I needed.

The BMT doc said she and the consultant were pretty certain it was GVHD and when she looked at my chest and back (where it had spread in further since first thing that morning ) she confirmed it had gone too far to deal with just steroid cream. She prescribed a full dose of steroids at 100mg and said she would review this on Monday when I was in for my cross match as it might be possible to start reducing the dose from then.

I had guessed by the spread of the rash I would need to go back to the full dose of steroids. Along with the steroids I've started back on the anti-fungal medicine Itraconazole.

It's something of a set back to have to go back on a full dose of steroids and it will probably be three or four weeks to taper off these and then see what happens. One thing I will be more careful about is how we manage coming off the itraconazole and how it affects my ciclosporin levels and I'll suggest I come for more regular blood tests to check the level to stop it going too low and giving the GVHD a chance to flair up.

This will all almost definitely delay the time I can start tapering off my ciclosporin and so delay my return to normal society. It's 150 days since my transplant and while that seems like a long time it's still the early stages of my recovery really and it's going to be another few months before I can start to get back to normal.

I've told work I won't be logged on to work until after my blood transfusion on Tuesday by which time I should have better energy levels, my cold may have abated and my GVHD should have started to subside. It's annoying to lose a few more day's pay but that is better than overdoing it and having to take more time off in the long run.

T + 149 Bad Timing

Posted by raetsel at Wednesday, February 11, 2009

Well yesterday proved to be rather eventful. Firstly in my cold addled state when I got up I took my ciclosporin tablet which I am not supposed to do on clinic days because they take a blood sample to get my current "ambient" level, as it were. By taking my tablet I rendered this test useless as it would be artificially high from the spike that occurs for a few hours after I take a dose.

This was particularly bad timing because it would have been the first ciclosporin level since I stopped taking the anti-fungal medicine itraconazole which was elevating my levels previously meaning I was on the low dose of only 50/25 mg.

I've never made that mistake before and I do put it down to not being completely compos mentis because of my cold. As well as that my skin was very dry on my face and I had two patches of rash on my forearms so it looked pretty certain my Graft Vs Host Disease (GVHD) was coming back. This might well have been caused by my ciclosporin level dropping too low now my anti-fungal meds had stopped. However as it was only two small patches I was hoping the doc would say I could treat it with just the steroid cream and not need to go back on the steroid tablets.

When I arrived at the hospital I really struggled on the walk from the car park up to the clinic and I wondered if my haemoglobin might be a bit low. I'd noticed my energy levels were a bit lower than usual and I got a pain in my shoulder blades doing the washing up the other day but put this down to my cold.

I had my bloods taken and then saw the doc, not my official consultant but the one who looked after me whilst she was on maternity leave. This doc confirmed I was getting GVHD and  that my haemoglobin was 8.8 which is pretty low. He booked me in for a blood transfusion on Tuesday 17th Feb. This is my first transfusion since 23rd December so I've done pretty well but I was hoping that I had started to hold my own on the red blood cell front. The doc said it was still normal to be needing transfusions at this stage and it was always the slowest of the blood cells to recover after the transplant.

The doc asked me if my rash was anywhere apart from these two patches on my arms and I said no everywhere else was clear. As the GVHD was localised to a couple of places we agreed to try just the betnovate cream rather than start back on the steroids. I also made an appointment with the day unit for this morning so I could get ciclosporin level.

When I got home I took off my shirt to put the cream on my arms and saw that, since checking after my shower this morning, the rash had spread to most of my chest and a bit on my back. I put the betnovate cream on all this but suspected that with it spreading this quickly and becoming so widespread I would need to go back on the steroid tablets.

I logged on to work when I got home and was fine for most of the afternoon. Just around 17:00, knocking off time, I felt my energy levels completely crash and I was totally shattered. I went for a nap for a couple of hours and that helped but when I woke my temperature was quite high probably because I'd left the heating on full blast whilst I was sleeping and I'd been under the covers with my shirt on.

It took a long time for my temperature to come down over the course of the evening and I felt pretty rough. I came very close to ringing the hospital to see if I needed to go in but thankfully my temperature slowly came down to a reasonable level.

As it happened yesterday Gareth was off sick from work with a cold ( which he probably got from me ) for the second day and I was really grateful to have him around. Despite not being 100% well himself he looked after me, cooked me dinner and generally made things easier for me to cope with.

Even so yesterday evening was probably one of the worse times since I came out of hospital and the triple whammy of cold, GVHD and low haemoglobin made me feel thoroughly miserable.

Today I've been a little better and my trip to the day unit was not without incident but that will have to wait until tomorrow as the twenty five minutes or so it has taken to compose this post has taken most of my energy. That and the fact this post is way too long already means I'll leave that tale until tomorrow.

However in the style of TV series these days, here is a trailer:-

On tomorrow's episode: The rash spreads and our hero is threatened with a skin biopsy.....

T + 146 Aches and Pains

Posted by raetsel at Monday, February 09, 2009

Well I had Thursday and Friday off from work and took things easy on Saturday. My cold has continued to improve each day though first thing in the morning my cough is very loose and phlegmy. Yesterday I was able to do the ironing though did need a little nap in the afternoon.

My energy levels are much better than they were on Thursday but not back to what passes for normal for me at the moment. I've been logged on to work since 08:00 this morning and coping ok so far.

Yesterday I had twinges in my mid back in the kidney area and my knee was aching as well. ( I've been getting little electrical shock type twinges in my right knee now and again for a while now - which I put down to "older" age.) Today those have both settled down but when I put some eye drops in earlier today I thought they had made my vision  blurred, as they occasionally do, but now I have a head/neck ache so maybe  the blurred vision was the warning of a mini-migraine that I get from time to time. Unfortunately it is two hours before I can have any paracetamol having had a lemsip at 10:00 this morning.

In short I'm a bit of wreck at the moment. :o)

At least I am completely steroid free at the moment, no tablets and no cream. I occasionally notice the odd itch round my neck but can't see any return of the GVHD so far, I think I am just a bit hypersensitive to these things at the moment.

T + 142 Under Orders

Posted by raetsel at Thursday, February 05, 2009

My nearest and dearest ganged up on me yesterday evening somewhat and I was under orders not to logon to work today or Friday. At the time, having done an afternoon's work I was a rather reluctant to take another two days off sick but in the interest of a quiet life I emailed work to say I would be off on Thursday and prolly Friday as well. 

I could see the logic of trying to rest and recuperate over these two days and the weekend particularly as my cold is worst in the mornings. As it turns out it was a good idea as this morning my cold had worsened and the cough become looser. Much more mucus and phlegm in general in fact plus I was really tired.

I have spent most of the morning napping and the afternoon just sitting quietly reading or listening to the radio before having another nap. I did feel better this afternoon but am hitting a little bit of a dip as evening draws on. This is the usual way with me when I have a cold, mornings and evenings are the worst.

I haven't had a call from the hospital today so that must mean my ciclosporin level is finally back in the right range so that is one good thing. I wonder if I will get a call tomorrow or over the weekend about the results of my samples from yesterday?

T + 141 Watchful Waiting

Posted by raetsel at Wednesday, February 04, 2009

I didn't sleep too well and by 05:15 I was awake and not able to get off again though I was at least able to rest in bed until 06:45 when it was time to get up. My cold symptoms had worsened , definitely more snotty and felt a bit rough. Though no more than a normal cold and no temperature.

Dad took me to the clinic and we sat in the quiet room to keep out of the way of everyone and not to infect anyone. 

The doctor listened to my chest and said that was still clear. As expected some blood cultures and a snot sample, sorry Nasal Pharyngeal Aspirate, were taken. Though typically, my nose was dripping like a tap all morning but as soon as the little plastic pot was produced it got performance anxiety and dried up instantly. However with a bit of huffing and snorting we think we got enough without the need to squirt saline up my nose.

The results will be back in a couple of days. If they find the influenza virus then I can have some anti-viral treatment probably Tamiflu ( which always sounds like a cat medicine to me ). Another possibility is called RSV and that will require treatment as an in patient. If it's the common cold then I am on my own as far as treatment is concerned though they will keep an eye open for any secondary bacterial infections on the lungs etc.

I also checked that it is ok to take lemsip and it is so I will be able to get some relief from the symptoms.

In better news my GVHD has cleared up thanks to the prednisolone steroid tablets and betnovate steroid cream so we are going to stop the tablets now and stop the cream in a couple of days and see if anything comes back. 

Along with this I will also be stopping the itraconazole anti-fungal med so it will be interesting to see how my ciclosporin levels react, there's a chance I'll undershoot the theraputic level so I'm back at the clinic next week so that can be monitored, however after that the doc is planning to put me back to two weekly visits which will be good.

I had an overnight bag with me at the clinic today on the basis of my general "hope for best but plan for the worst| " approach. So it was nice to be able to come back home and log back on to work.

T + 140 *Cough*, *Sniffle*, Buggrit!

Posted by raetsel at Tuesday, February 03, 2009

Late yesterday afternoon I started to notice a little tickle at the back of the nose and the occasional dry cough. This morning it was obvious I was getting a cold. It's at the sniffle and dry cough stage at the moment (one sneeze) and my temperature is fine. My energy levels are a bit lower than they have been perhaps but not significantly so.

I rang the hospital this morning to explain my symptoms and hoping that it would be ok to leave things as they are and follow this up at my usual Wednesday Clinic appointment. I had a nice long chat with the nurse at the Bone Marrow Transplant ward and checked my latest blood results and current medications and we agreed that as long as my symptoms don't worsen then it is ok to wait until tomorrow.

I will probably have to have some blood cultures taken tomorrow and something referred to as an NPA which I believe stands for nasopharyngeal aspirate. They squirt some saline up your nose and the you snot in a pot, to be blunt. This is then sent away for viral analysis. I had one done when I was in hospital and whilst not the most pleasant thing it's not too bad.

What happens after that will depend on any results but just in case they decide to keep me in or send me to the day unit to have IV antibiotics I've asked my Dad to take me to the clinic tomorrow rather than driving myself and getting Arthur stranded in the car park.

At the moment it feels like a minor cold and under normal circumstances I would be on the lemsip and not worry too much. Of course these are not normal circumstances so I will have to see what happens. 

The chap I was talking to last week has been hospitalised twice in the last two months for brief spells to treat influenza and respiratory infections. My counts aren't too bad and I'm getting it looked at early so hopefully it won't come to that for me.