Back into Hospital with Muscle Wastage and an Infection

Week of 4th to 10th June 2007

I am catching up more than two weeks late for reasons which will unfold in the following entries. On Monday I am feeling even more weary than yesterday as if I am anaemic. I am drinking plenty of iced water and my appetite is ‘so- so’. I go for a blood test at the RSCH on Tuesday. My weight is 77.6 kgs. This absolutely correct as - for the first time - I use the large weighing machine in the Day Unit rather than the bathroom scales in the toilets. My blood results are good: Wbc: 5.1; Hbn: 12.3; PLT: 102; Neut: 4.9; Lymph: 0.1 - and show that I am not anaemic. So I ask to be checked over for my aching legs but Panos finds nothing to explain what is happening. Tuesday night is really bad, I wake with pain in my thighs and can hardly walk. I call Steve Devereux who thinks it could be myopathy (muscle wastage) as a result of the Methylpred. He tells me to get down to the RSCH for them to check it out again. I am seen by Panos and Tim Corbett and another blood test shows something that might explain the problem. (This turns out to be a CRP reading of 128 which I only get to hear about two days later.) I am admitted there and then but have an injection of Tazocin before leaving the Day Unit. I am feeling lousy, look appalling, cannot walk without extreme pain and we don’t know why. So I am back to Howard 2 ward via an MRI scan with a porter pushing me there in a wheelchair, renewing acquaintances after a ten week interlude! Tina has been with me since collecting me from home at 10.30pm. It has been a rotten day for her, obviously she is very anxious, but eventually she has to go home. I have a temperature check at 6.30pm and it is 38.2c - fever pitch! Later that evening I have a big sweat, soaking my T shirt right through. This is not good!! I have a fitful night and any leg movement is very painful. Shuffling to the toilet is a nightmare.

I am seen next day by Paul Hill, during Matthew‘s visit. My left thigh is now less painful than my right and he believes I have muscle wastage (sympathy) as a consequence of the dosage of Methylprednisolone. The infection is thought to be coincidental and not likely to be connected to the muscle problem. I am to have 48 hours of Tazocin. My blood results are good, but my CRP is now 172. By the time Tina comes to see me late afternoon, things are starting to make a bit more sense. Thursday night I have a better night’s sleep and when Tina rings me in the morning, I can move my legs about without pain! - although walking is still very difficult and makes my thighs hurt. My late morning consultant’s visit - the new Dr. Ros Johnston - is positive. Await a turn down in the CRP level, move on to Ciprofloxin and expect to be discharged soonest afterwards. My blood results today are: Wbc: 3.3; Hbn: 10.4; PLT: 82; Neut: 3.0; Lymph: 0.2; CRP: 90. My weight is 76.5 kgs. Although I have a restless Friday night, I am much improved by Saturday morning, but have to wait for Paul Hill to see me prior to discharge. He does not know what the infection was, but is satisfied that the muscle problem was caused by the Methylpred. He will discuss with Steve Devereux whether the dosage should be reduced next time, provided it is allowed within the protocol. It is decided that I should resume my Campath on Wednesday, so that I have lost exactly one week from the programme by this little episode. I will have blood tests twice weekly to keep track of my Neutrophil counts in case I become neutropenic or need to take GCSF - this applies if my count is 2.0 or less. He advises me to do simple exercises as I need to strengthen my thigh muscles - lifting up my leg with a bag of frozen peas balanced on my foot. In fact I use our beanbag door stop; it is slightly heavier. Tina collects me, I say my farewells once more to Howard 2 ward and I leave about 2pm. I spend Sunday in recovery mode!

Although it has done its job in the blood and lymph glands, my three lots of Methylprednisolone have each been accompanied - followed - by very unpleasant side effects or similar. The first session decimated my tastebuds and appetite for at least two weeks. The second session was followed by five weeks in hospital with the chest infection and CMV; and now the myopathy and another infection with this the third session. Not so good, is it?

Session 3 of Methylprednisolone

Week of 28th May to 3rd June 2007

As this week starts with a Bank Holiday, I am having my Methylprednisolone from Monday through to Saturday, as well as giving myself my three days of Campath. I had to remind myself what the steroid dosage is; 2 grams in 250 ml of saline solution - a hefty dosage - or ‘industrial quantities’ as Steve Devereux puts it! It is also eight weeks since the last lot rather than the four weeks it should have been, so will that make any difference? The week goes quite well. I feel tired most afternoons and have one or two hours sleep each day. I also have that strange dulled vision that comes with Methylpred. - as if my specs need cleaning. On Tuesday I felt quite light headed and on Saturday, a bit sickly. On the other hand I had a pint with Jim on Wednesday and lunch with Keith at the Royal Oak on Thursday, followed by a visit to the farm barn conversion they are having in Henfield. I also had to change a wheel on the A27 coming home on Saturday as we had a complete blow-out and shredded tyre - really annoying after just 2400 miles. So that was a test of my energy levels. Needless to say I was very tired afterwards and had a good sleep in the afternoon. As the week progressed so my taste buds started to be affected, with the taste of some things being altered more than others. But the good news is that my overall appetite seemed to hold up ok. But I found that I want Metoclopromide to ensure I don’t feel nauseous and I ask for a spray to deal with a dry mouth. My weight hovers around 76 kgs all week but whilst my Hbn is 10.4 across three blood tests and my PLTs average 142, my Wbc went from 1.2 to 6.1 and 5.7 and my Neutrophils from 1.0 to 5.3 and 5.0! I am told this is the Methylpred.

Our computer decides to die this week. Not only that, but it is giving off a nasty smell. We get a local PC engineer to have a look at it and he is able to remove most of the data files, but stops short of email and its address book - which is a right pain. Here’s hoping he can sort those out as well. It has been a real frustration these past two months as I have been off email all that time and recently Tina’s went down as well. Meanwhile we decide to use my brand new laptop as our main PC, complete with WiFi, bells and whistles.

I get an interesting call from Paul Hill telling me that the Health Trust’s legal person has viewed my blog and pointed out that I have referred to fellow patients by name. This contravenes the Data Protection Act apparently and I am asked to remove them. I suppose if I had got their permission, it would have been alright - shame really. On Sunday I am feeling really weary and my legs are aching. My food is just about ok. I am not enjoying my breakfasts now and my Saturday and Sunday dinners have been good only because it’s Spanish pork casserole.