Back in Hospital - Week 2

Monday 30th July to Sunday 5th August 2007

Sunday 5th August 2007

I have had a little problem with the thumb on my right hand. It has started to redden and swell over recent days on the right side. I seem to recall noticing a small cut there in the early part of the week of my Methylprednisolone and I conclude that it is probably as a result of catching it on a thorn when I did some rose pruning on, I believe, the Monday of that week - despite wearing heavy duty gloves. I have already drawn the consultants’ attention to it as it has started to ache a bit as well as swell. The swelling has now become more clearly defined and the tip - or head - has changed to give the appearance of its being infected. Otherwise there is no change as far as my discussions with Paul Hill are concerned. Sr. Peter calls to give me Holy Communion and meets Tina for the first time. We are then joined by Tony and Pam - which was lovely. I get two days’ blood results at the same time. They are - Wbc: 1.2 and 1.4; Neut: 0.3 and 0.4; Lymph: 0.9 and 1.0; Hbn: 10.8 and 10.5; PLT: 92 and 85; and CRP: 12 and 20. My weight is 70 kgs again.

So great news! An increase in the neutrophil count for each of the last three days. This makes me feel very good, especially after having such a “cheesed - off” week. I can at last see a proverbial light at the end of the tunnel. Afternoon and evening spent reading, dozing and doing Sudoku.

Saturday 4th August 2007

Tina is with me from 11.15am with post and gifts, including a jar of “Life Mel” honey from Evelyn Hole - plus the article in the magazine which gave her the idea of getting some for me. It was extremely successful in getting one person’s immune system back up and running and he out of bed and back on the golf course. She could not have known about my non-existent immune system at the time. How timely and how kind! I am seen by Paul Hill. No change. My weight has stayed the same at 70 kgs.

Friday 3rd August 2007

I am seen by Tim Corbett. As the oedema - and my weight - has reduced so much since my admission he halves my Furosimide dose. He also prescribes a 50% increase in my GCSF dosage in an effort to get my neutrophil count moving upwards. He mentions the possibility of my bone marrow transplant being brought forward because of the potential problem of further neutropenia. I hear news from Peter that Suzanne had a mild heart attack in the night and is now in Darent Valley Hospital at least over the weekend and seeing the cardiologist on Monday. That is a shock! Tina, Anna and Nick visit with Eva.
My blood results today are - Wbc: 1.3; Neut: 0.2; Lymph: 1.0; Hbn: 11.6; PLT: 113; and CRP: 14. My weight is 70 kgs.

Thursday 2nd August 2007

If it’s Thursday, it must be Paul Hill! It’s his day to do the Brighton clinic. My neutrophils are still on the floor and he says that if they are still down there after the weekend then they will have a look see what is happening in the bone marrow. He leaves me with a confident “See you at the weekend”. I have a visit from Jim Rodgers with info on their weekend in Paris, then Sister Peter arrives to give me Holy Communion. It’s a day of visits as I have Peter and Suzanne at 2.30pm., Terry and Les at 4.15pm and then Tina after they have just left. Fortunately my energy levels are high, although I spend the evening in “rest” mode, with bed at 12.30am. My weight today has dropped to 69.5 kgs - which turns out to be the lowest my weight gets. My blood results today are: Wbc: 0.6; Neut: 0.1; Lymph: 0.4; Hbn: 10.5; PLT:89; and CRP: 17.

Wednesday 1st August 2007

My weight is 70 kgs again, so it seems to have stabilised at last. Great minds think alike! I am taken off Septrin and I have an appointment next week for a Pentamidine nebulizer. In an effort to turn round my weight loss I have a Fortijuice - from the same stable as Fortifresh but juice based - and a chocolate brownie in the morning. But it is 11am when I have them and I get my lunch at 12.10am prompt(!), so my appetite for lunch is much reduced and I save my pudding to later. I have got to work this one out! As it is Wednesday, Tina is with me from 11.30am today and shares my disappointment that yesterday’s neutrophil count was a false hope. My blood results today are: Wbc: 0.6; Neut: 0.1; Lymph: 0.4; Hbn: 11.2; PLT: 98; and CRP: 12. I finish “Lost Continent” and go on to “Neither Here Nor There”. I have two more Fortijuice drinks through the day. For the first time I am getting really cheesed off over my immune system sticking stubbornly on the floor and nothing much being suggested to shift it. When I was in hospital back in March / April at least I could see the need for it, as I was getting i/v anti-virals and anti-biotics for my chest infection right through the five weeks. But this time I seem to be couped up just waiting for something to happen that might or might not and it’s getting tedious.

Tuesday 31st July 2007

My weight is still 70 kgs. Tim Corbett leads the round today on his first day back from holiday. He checks me over thoroughly, including my mouth. He is not sure that the ulcers may not be viral, but bacterial and wants some swabs taken. He also prescribes me additional anti-biotics - Metronidazole and Augmentin - plus Folic Acid as a vitamin. He remarks on my weight loss of 5 kgs over the past week. Most of that will have been fluid - and I still have a little oedema in my ankles - but also agrees that I will have lost body mass and muscle weight. He also concurs on the possible reasons for the neutrophils being suppressed adding that some of my medications could also be contributing. This made me later recall that Septrin was considered to hinder neutrophil recovery back in February when I was going through a period of neutropenia. I was taken off Septrin and had a Pentamidine nebulizer instead, followed by another one in March when I was in here with CMV.
My blood results today are:
Wbc: 0.8; Neut: 0.2; Lymph: 0.5; Hbn: 12.5; PLT: 138; and CRP: 16. Nurse Clare discusses my nutritional needs with me. I am asked complete a Food Record Chart and she gives me a Fortifresh raspberry flavoured yoghurt style drink to try out. It is 200 ml of thick liquid, contains 300 calories and is quite nice. I have a blackcurrant flavoured one in the evening. Apparently three per day will help build me up quite a bit.

Matthew visits me in the morning, which is great. He is still very busy with the kitchen / dining room but at last is seeing things take shape. Lots of the kitchen is now in place and they have running hot and cold water in there at last! Tina comes in about 4.45pm. She is meeting Marj Holloway in Lewes for something to eat at 7pm. Tina is much relieved to hear that my neutrophil count has gone to 0.2.

Had I not been here in hospital we would have gone today to a meeting of the area CLL Association being held in Hampshire. This is a shame as I think we would have found it helpful. I have now managed to completely catch up with my blog - hurray! - so I resume Lost Continent until bed at 12.20am.

Monday 30th July 2007

I am awake and showered before breakfast for the first time, I think. My weight is 70 kgs - yes 70 kgs! How can this be? I later have a discussion with Ros Johnston who tells me I cannot lose two and a half kilos in 24 hours. I don’t dispute the medical argument but my scales are correct and they are the same ones I have used each day this week. I check my weight on the platform scales in the Day Unit and find no difference. So how is this?

My blood results are: Wbc: 0.6; Neut: 0.1; Lymph: 0.4; Hbn: 11.1; PLT: 102; and
CRP: 17. Nurse Miriam, who has been very attentive to my needs, is anxious to ensure that my hip abrasion has not worsened, so she checks it and replaces the dressing. She also wants to refer me to the nutritionist because of my weight loss. I agree. I have a visit from Derek Oakensen is the afternoon. He updates me on the latest with his redundancy saga. Fascinatingly awful! Tina comes in at 4.30pm. She has been in touch with Vikki Bevan for a chat about things. While she goes to buy a coffee down in the shop, Vikki calls on her mobile and I take it. Steve Devereux reckons my neutrophils are being suppressed by the after effects of taking the Valganciclovir, coupled with a cumulative effect of the Campath. She just wanted to give Tina some reassurance on that.