I love walking. I have walked all over, notably in the Pyrenees, and for my sins I run a local walking group too. Fine, except that earlier this year, February maybe, I started to find walking hard work. Nothing wrong with my legs, but I was puffing and panting up hills and eventually, just walking briskly on level ground became a problem.
To start with I assumed I was just out of condition, hadn't done a lot over the winter period, after all... but it got steadily worse until - on one of my Linton walks, embarrassingly - I completely ran out of steam.
Wife Sue drove me home and we went to Maidstone hospital A&E. They were great, I have to say, examined and admitted me within 30mins. They discovered that my haemoglobin (red blood cell) count was 42, which meant an emergency blood transfusion. The haemoglobin count for a healthy adult male is between 135-170. I had six units of blood transfused over the next week, and a battery of tests - they took 17 blood samples, one day!
I spent a week in hospital. Apart from the blood samples they did a bone marrow biopsy (I do NOT recommend these! If you must have one, demand anaesthetic), a CT scan, an ECG, X-rays, etc etc. Basically, they concluded that my red blood cells were being produced as normal, but some form of antibody was attacking and destroying them.
I will pass over the period from then until the biopsy results were available, at the beginning of May. They involved numerous blood tests, several pints of blood as an outpatient, and a second emergency admittance via A&E. (also admitted within 30 minutes).
When the biopsy results were reviewed, they informed me that I had low level lymphomas in my bone marrow. The consultant said no treatment for the lymphomas was currently needed - they being low-level and all - unless it became clear that they were causing the current problem.
So for about three months, they tested and supplied blood, but no actual treatment was proposed or undertaken. Eventually, however they concluded that there was probably a link between the lymphomas and the blood problem. It seems that what I have is called autoimmune haemolytic anaemia. A treatment plan was agreed that involved four weekly sessions of rituximab immunotherapy, coupled with EPO. This is currently ongoing. The second and third sessions took place on 20 and 27 May and went well, no adverse reactions. I have a review with the consultant on 18 June 2025 when we will review progress and consider what further treatment may be required.
That is where we are at present. I am living a slightly restricted life - I live on a hill that I can no longer walk up - and have constant feelings of lethargy and tiredness. Holidays and trips, not really on. I am like a clockwork toy: wind me up with some units of blood and I go like the clappers for a couple of days, then start to run down and eventually, grind to a halt. Having said that, when I am on the ward in hospital and look around, I realise that things could be a whole lot worse. The illness has been totally painless, so far; I am still mobile, after a fashion, and can drive. Wife Sue has been an absolute saint, supportive and sympathetic. She would make a wonderful nurse. Maidstone hospital, all departments, and I've been in quite a few, has also been great. Cheerful, supportive and efficient. The Trust has about 7,500 staff and heaven knows how many patients, but it runs like a well-oiled machine. And I know a thing or two about the administration of large organisations. Don't ever criticise the NHS in my hearing.
So we plod on, take things from day to day and wait to see if the immunotherapy has an effect. I will do an update to this log when the chemo is complete, unless something interesting happens beforehand. In the meantime, if you have read this far, your good wishes for recovery are taken for granted. However, I do love to hear from walkers and other friends, so send me an email as often as you like and tell me how things are going with you. I do miss the Linton walks!
Jerry 19 May 2025
Updated 25 May 2025
Updated 30 May 2025
Following my consultant review on 18 June, I have done a new post which you can see here
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