MCL and Me

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 af...

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 ...

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 ...

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...

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 ...

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. NaNoWriMo 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 ...

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 que...