MCL and Me

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 h...

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.

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 alway...

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 b...

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 ...

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 docto...

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 t...

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. Un...

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 ...

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 alway...

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 s...