My name is Helen and I was originally diagnosed with ET in October 1991 when I was 39 years old. It had been a fairly hot summer and I was suffering from increasing pain and discomfort in my feet. The only way of relieving the pain was using what my children referred to as Mum’s mushy frozen peas, applying a bag of frozen peas to my feet, and even that didn’t work for long.
I went to my GP who referred me to an orthopaedic surgeon. I had my feet x-rayed and was referred for six weekly sessions of physiotherapy – but there was still no improvement – and the expense of some specially made insoles for my shoes. The surgeon was at a loss and referred me to a rheumatologist. He took some blood tests and asked me to go back the following week ; my husband was with me. The doctor told me that the blood tests indicated that I had an alcohol problem. Now I felt I had a real problem, as I rarely drink alcohol. Even though my husband backed me up I don’t think I was believed because the doctor’s response was that “maybe the machines have got it wrong.” He said that he would repeat the tests and that I should go back in the following week. A couple of days later, a Saturday morning, he phoned me at home to say that he was concerned about the second test and wanted me to see a haematologist on Monday. At that point I felt very apprehensive.
Until this illness started I had a blind faith in doctors. However my recent experience had led me to lose trust in them. At the same time, my feet were getting worse and I suffered from painful ulcers that wouldn’t heal very easily. I have to admit to feeling bewildered and frightened.
My platelet count was 904 when I first saw the haematologist. I was treated with busulphan, aspirin and persantin. I still had trouble with ulcers on my feet and at one point I was threatened with having my little toe amputated. I have always been a believer of holistic medicine working alongside conventional medicine and feel that I owe the fact that I still have my toe to the healer who helped me through the early stages of my condition. She was accurately able to predict my blood counts and heal my feet from Scotland whilst I was in Sussex. Because of my experience of doctors prior to diagnosis, I found this hugely reassuring as the biggest issue I had was whether or not to trust the medical profession. (Since then, I have built a good relationship with my consultant. He has endless patience with my questions and need for reassurance.) I knew that I had an incurable chronic condition which I had no control over and that I was powerless to heal myself. I also don’t like having to rely on medication. At that point I realised that I could chose to worry myself into a frenzy which would affect the lives of those around me or to reframe my thinking about the prospect of living with the changes that this condition brings. For me it sits more easily to think of it as a condition rather than an illness. I chose to look at it as no different to something like diabetes or even high blood pressure, which can be controlled and not cured. I often think how fortunate I have been that it was discovered when it was rather than in a medical emergency.
After the initial phase of stabilisation my ET became predictable. The busulphan kept my platelets between 300 – 400. I had approximately two years of drug-free time between each dose. This phase lasted for ten years. In 2002 a completely unrelated medical problem necessitated a hysterectomy. Shortly afterwards my blood counts started to rise and my consultant switched me to hydroxycarbamide because, he said, there was a possibility that busulphan could cause problems later. Actually we were told that I would have a higher risk of converting to leukaemia at age 60 or above if I stayed on busulphan. My view was and still is that a positive mental attitude lessens the risks and I had been happy with the medication because it had given me long drug-free periods. However, I agreed to change to daily medication. It became necessary for me to have the odd venesection to reduce my haemoglobin. I do remember being panicked by the wording in the patient information leaflet with the hydroxycarbamide particularly the word CANCER. Again my GP gave me reassurance and a full explanation of what cancer is! For nearly four years things were pretty stable with the odd venesection here and there.
After Christmas 2006 I started to feel very tired and lethargic, at the beginning of January 2006 my regular four-monthly check up showed that in spite of the medication the red cell counts were high again. My consultant decided as well as a venesection that he would send a sample off for a JAK-2 mutation test and he also wanted to do a bone marrow biopsy. It had been fifteen years since the first one. I asked him what he was looking for and the word myelofibrosis was mentioned as something that needed to be ruled out, although he though it was unlikely that I had it. The JAK-2 test was to confirm his ET diagnosis. Again I felt apprehensive which was made much worse by searching the internet. A little knowledge was definitely dangerous in my case and only added to my stress level!
The following week, very unexpectedly, the hospital where I had received fifteen years of excellent NHS treatment closed its doors. I had to see my consultant at a hospital on the south coast, at some distance from where I live. It was a completely different experience and made the pain of losing the services at my hospital worse, something that is still with me today. When I went to have the biopsy my husband came with me to the other hospital. We had been told that I now had PV and was JAK-2 positive. On the way home my husband suggested I ask for a second opinion. My GP thought that this was an excellent idea and together we looked on the internet for a haematologist attached to a London teaching hospital. Something quite extraordinary happened. I left the surgery with some phone numbers and for some reason the first number I dialled reached a consultant at his home number. He gave me the name of a consultant in London to try.
When we arrived at my new hospital I felt immediately that I was definitely in the right place. There was patient information on the wall, and a handout to take home, which I read and found very reassuring. My consultant gave me and my husband a much clearer insight into MPDs than we have ever had before. She checked my blood count and suggested a venesection, which is where I met an MPD specialist nurse, another experience of warmth and reassurance. My consultant also suggested that I ask my GP to do a cholesterol test which when done indicated a high enough level to warrant taking a statin. I was also told that I should give up smoking. With the help of a hypnotist I have done this and now have not had a cigarette since March 29th of last year although I have gained a stone in weight! My three children have also been tested and are reassured that they have normal blood counts.
I am not sure what phase I am in at the moment. I went back to see my consultant last week, my counts have risen again and I had another venesection (the last one I had was when I saw my consultant in March so it’s not bad going). I am due to have another blood count in three weeks time and then discuss whether or not to increase the hydroxycarbamide again. I started on 500mg daily. I was increased to 1000mg at weekends last year I haven’t had many significant problems with this drug other than gastric disturbance, and have been taking omeprazole on a reducing level to help with this. I am now back taking 75mg asprin on a daily basis.
What I do know is that after 19 years of ET and now PV I am able to lead and enjoy a “normal” life. I have accepted that I have PV. I don’t really think that it affects my lifestyle in any way. I don’t really give it any “worry time” other than when I have the odd blip of a blood count. If I really think about it I am not good with dealing with fear of the unknown and change. I also know that if I over-focus on negative things going on in my life I will miss out on the strength and hope that I get from all the many positives. I feel that I have the very best of help, an understanding local consultant and now new friends, fellow patients, and an exceptional staff team at my hospital – a big thank you all!