MCL and Me

I had a call from the hospital yesterday afternoon. The ciclosporin level in my blood is still too high but it is getting better at least. It was 325 and the range they are looking for 250 - 300 so I have now reduced my dose to 50mg and 25mg down from 50mg and 50mg. Hopefully this will settle it to the right range. The fun will come when I stop taking the anti-fungal medication that is currently pushing the level up. This will need to be managed so that I don't swing too much the other way and give my donor immune system the chance to cause some more GVHD.

There is a certain camaraderie that builds up amongst us haematology patients particularly with those whom you have spent time in hospital and then see from time to time at the clinic or the day unit. Yesterday I caught up with a guy who I see every couple of weeks and is about eight weeks ahead of me in the process, though as he had stem cells from his brother rather than an unrelated donor his recovery has been somewhat quicker and he is on a low dose of ciclosporin and back in at work full time. He had some sad news to tell me yesterday. One of the other patients we both new, a young guy in his twenties had died. He also told me another guy we both know is struggling with set backs. It was sobering news and reminds me both to "count my blessings" and what is at stake here.

I battled through the unusually heavy traffic to get to the transplant clinic this morning and just made it on time. Not that it matters that much as it's always a good half an hour after the allotted time that I get to see the doctor. Over the last few days I've been getting the odd itch round the neck and face and on Monday evening I noticed a feint rash round my neck and shoulders so I figured my GVHD was making a bit of a comeback as I have been tapering off the steroids. The doctor confirmed that today and so I am going to stay on the 10mg dose of prednisilone steroids rather than finishing them on Thursday. I've also been given some Betnovate steroid cream to apply to my neck and shoulders twice a day for the next week. It goes on well and is easily absorbed but it does have a quite strong, good old fashioned medical embrocation  smell that lingers a while. The GVHD is nowhere near as bad as it was around Christmas so hopefully it will respond well to this little ext...

I had a pleasant weekend and even did some work. There was an important migration of users onto a new system planned for Saturday so I said I would make myself available if there were problems. As it happens I spent just over an hour working on issue on Saturday afternoon. I managed to resolve the issue just as my friend Andy popped round for a visit so the timing was excellent. I am very cognisant of the effects of stress on immune system function and the risks of overdoing it, so at the moment I won't be making a habit of working out of hours,. However in this case I would probably have been stressing more about what was going on had I not made myself available so I think it was the best thing to do. After bemoaning the fact I'm still on the clean diet the other day and take aways are therefore forbidden I took advantage of an offer on the Sainsbury's website and with this week's shop came a Chinese "banquet" for £5 . It consisted of spring rolls, peking du...

.........but this time it is in my ciclosporin doses not my fingers. I've just had the Thursday call from the hospital. My ciclosporin level is still around 400 ( down from 495 last week ) and it should be in the 200 - 300 range so I have to miss two doses tomorrow and then cut down from 75mg morning and evening to 50mg morning and evening. My level is 400 whats? Well according to this site here it is is ng/Ml   which is nanograms per millilitre or billionths of a gram per millilitre .

It was an early start for me today to get to the transplant clinic for 08:30, after being stabbed three times to get blood I went in to see my consultant. It was a pretty straight forward review of how things have been for the last week on the reducing steroid dose and as I have had no recurrence of the GVHD the plan is to continue reducing until in about 8 days time I will be off the steroids completely. Things will then need to be left to settle so I will not start tapering off my ciclosporin anti-rejection drug until March. This is a bit later than I was hoping for but I understand the reasons with having had some GVHD now. This means I won't be looking at getting re-introduced back into society until late March, early April and even then it will be in stages. I mentioned my current status and the regime I am following, namely eating a clean diet , no going to any public places, avoiding anyone with infection, only going to a couple of other people's houses and seeing a fe...

I managed to cut the tip of the index finger of my left hand with the bread knife yesterday. After my initial exclamation of "Ooh I say, that stings a bit!" My next thought was "possible source of infection!" something I wouldn't have given much thought to 18 months ago. It wasn't a very deep cut but it was right on the fleshy tip so bled a fair bit and was in a place that would open up again easily. When your immune system is low your first line of defence is the physical barrier of  your skin. So I was a brave little soldier and rinsed it with a some alcohol gel, more "Ooh I say", and then stuck a plaster on it. I tried taking the plaster off this morning but that was a bit premature and it was back on by lunchtime as the cut had opened opened up  again, probably due to using a keyboard all morning. The current status is I've taken the plaster off and the wound is holding up ok. Now the foregoing might seem more information that you could pos...

I'd quite forgotten that the 15th of the month is pay day and so it was a very pleasant surprise to get my pay slip through the post on Friday and see it contained nearly a full month's money. It being a bit short due to my not starting back to work until the 5th of the month. It's nice to be back earning again and I've started to look at things that need money spending on round the flat. The bathroom is in dire need of redecoration and a new ceiling so quotes are in hand for that. Also the soffits and guttering on one side of the house need attention. In order to get the soffits done I needed to check the lease to see if there was anything special I needed to do and whether the landlord was in anyway responsible so I spent an at times baffling half hour looking through the lease and the convenants in it. This is slightly complicated by the original 1962 lease having been extended in 2006 so there are two sets of documents to look through. My goodness the legalise is vi...

The phone rang at 16:45 and I knew it would be the hospital. It was the doctor from the Bone Marrow Transplant unit. My ciclosporin levels were about twice what they want them to be which is caused by the itraconazole anti-fungal medicine I'm taking.  My kidneys have coped well with this extra level and I put that down to the fact I've stuck rigidly to the three litres of water a day edict I was given when I came out of hospital. That and the fact I've not drunk alcohol for eight years. Well I think I average about four units per year. So now I have to halve my dose of ciclosporin down to 75mg morning and evening. Things are going to be up in the air for a while with reducing steroids, fluctuating ciclosporin levels, gvhd and blood counts all interacting. Hence going to the clinic every week again after previously dropping to every two weeks.

I went to the transplant clinic this morning and saw my original consultant who has now returned from maternity leave. We had a little joke about the fact I didn't look any different from when she last saw me ( back in June ) and we discussed how the transplant has been going. The aim now is to start reducing my steroid dose in more gradual steps, so from the current 50mg I'll do 5 days on 40mg, then 5 on 20mg, then 5 on 10mg. So in theory in a fortnight I could be off the steroids all together. However as the consultant explained this is not an exact science and it has to be done by clinical observation. I.e. if the GVHD starts to come back then the tapering of the steroids will need to stop and the dose may even need to go back up. As this was the first catch up meeting back with my consultant I didn't go into the details about my re-introduction into society. ( Makes me think of Born Free and Elsa the lion now). I will mention it next week just to start getting an outlin...

I've continued working from home this week and getting back into some detailed work configuring a new server. At lunch I decided a breath of fresh air would be good and the weather didn't look too bad outside so I took a stroll along Moor Lane and then back through the cemetery. The route was pretty level with only slight upward slopes here and there and I was out for about thirty minutes. I felt fine doing this, no tiredness at all so I'd say that means my haemoglobin is holding up pretty well. It was a very pleasant little stroll. Tomorrow is the transplant clinic and I hope to talk to the doc about working out a plan to start re-integrating myself fully into society. I was initially aiming for around March for this but this little GVHD episode may have set that back a bit.  I'm not expecting a concrete timetable more a sequence of events and target like having counts at a certain level, down to a certain dose of ciclosporin etc.

I had quite a busy and productive weekend in my terms. Spent a fair amount of time messing about with my Internet wireless router to try and remove the black spot that exists in the study and makes it difficult to get a good signal in there on some devices (still work to be done there) . Also did a few other geeky things with Gareth's eee PC laptot. Sunday I went to Mom and Dad's for lunch and afterwards got Dad to give me a haircut as it needed a bit of a trim. This is the first normal haircut I have had for several months. The previous two haircuts in about June and September were just to shave off the last sorry remnants after most of my hair had already fallen out. I had my usual No. 2 grade all over. My hair is definitely different to how it was, apart from the bits of grey it's darker and much finer or softer than it used to be. As well as the foregoing I also managed to fit in getting all the washing and ironing done. I wonder why so many barbers used to have boards ...

If the phone rings late on a Thursday afternoon and the caller ID shows "unavailable" then it is a reasonable bet that it will be the hospital ringing to adjust my medication. So it proved to be yesterday. I had a call from one of the Bone Marrow Transplant co-ordinators saying that my ciclosporin levels were a bit high and I needed to skip two doses completely and then resume on a reduced dose of 150mg morning and evening, down from 150 in the morning and 175 in the evening. This was predicted by the doc last week as the itriconazole anti-fungal medication I am taking as part of the steroid therapy causes changes in the ciclosporin levels. I didn't sleep very well last night. I went to bed around 22:30 and though I drifted off at some point after for a while, I remember being awake at midnight. I had a lot of thoughts running through my head but not in the sense of them mithering me as I very occasionally get when I have a lot on my mind. This was much more like my mind ...

I braved the ice and snow to get to the transplant clinic today and it went well. It got off to a good start when the phlebotomist was able to get blood samples out of me on the first attempt ( it took five goes last time ). I saw my consultant and he was very pleased with the reduced GVHD on my head and neck, the skin is only a little dry and the rash has all but gone. The plan now is to reduce the steroid dose further and see if the GVHD will stay away. So after tomorrow I will reduce the dose from 75mg to 50mg. Blood pressure was pretty normal so hopefully we can get the steroid dose down before it starts to affect that too adversely. The stomach upsets and diarrhoea are a bit of a mystery still. The steroids can cause acid indigestion which I had a lot of to start with and I can take some ranitidine to alleviate that, but steroids don't usually cause diarrhoea and it responded too quickly ( and well ) to the immodium to be likely to be an extension of the GVHD. At the moment ...

Well after dinner last night I got really quite bad stomach ache with a lot of trapped wind and acid indigestion. Some Remagel tablets sorted the acid but the trapped wind was a real problem and gave me a disturbed night sitting up in bed at times with a hot water bottle on my belly. I was feeling quite sorry for myself at times. The problem was confounded by having to be careful about releasing said wind when the opportunity arose because, due to the problems the day before, I couldn't be sure I wouldn't get more  than I bargained for, so to speak. So I was up and down to the loo a few times in the night as well though I didn't actually have any more diarrhoea. I still managed to get up at 07:00 and did a full day's work including some actual productive stuff with support calls. I've taken it very easy with the food today, just four cornish wafer water biscuit things so far and plenty of water. My stomach has settled down a lot and I'm hoping to manage a little...

Rated Potentially Gruesome for references to runny bottoms. Yesterday didn't get off to a great start with having to go to the loo ( or open my bowels as the medicos say ) four times before midday and although nowhere near as bad diarrhoea as when I was in hospital it was obviously not right.  I took a couple of loperamide ( Immodium ) and this cleared everything up quite quickly but that is most likely just dealing with the symptoms and not the cause. That could be one of a number of things. It could be a stomach bug of some description, a reaction to the steroids and/or anti-fungal meds or it could be the Graft Versus Host Disease (GVHD) moving on to another area, the gut.  I don't think it is a stomach bug as it didn't have that sort of intensity to it,  I didn't have a temperature and could eat fairly normally. In theory the steroids should be combating the GVHD wherever it is, skin, gut etc.  so maybe it is a reaction to the new meds. I took another couple of doses...

The Christmas decorations have come down, both at home and on this blog and I'm trying out a new template.  I think it looks very crisp and clean and hopefully makes the blog easier to read and print out. I might fiddle with the fonts a bit and try one of serif fonts as they generally help guide the reader's eye along lines when there are large blocks of text.   It also now has tabs along the top for pages you might want to refer to whilst reading.

A very happy 2009 and to you all. I saw in the new year at my friend Andy's house and it was a very pleasant evening. Earlier in the day yesterday I went to the Transplant Clinic and deliberately didn't put any E45 moisturiser on so the doc could see my flakiness in all its glory. He confirmed that, as suspected, I have the symptoms of Graft Versus Host Disease (GVHD) with a reddening rash on my chest and neck and dry itchy skin on my face. This means the white cells produced by my donor stem cells are attacking my skin as it sees it as a foreign body. It's very common for this to happen with unrelated donor transplants and can usually be controlled quite easily with some steroid cream or tablets. The doc prescribed me 100mg of Prednisolone tablets dropping to 75mg after three days and put me back to a weekly clinic appointment until the GVHD has settled down. Steroids are wonder drugs and already my skin is less itchy. They do have some downsides though and in high doses...