First symptom foot pain

Charlie was diagnosed with ET after suffering digital ischaemia.

My husband Charlie’s path to diagnosis began back in May 2005 when he was 46 years old. It began with a seemingly innocuous event, when he caught a splinter in his little toe. He removed it and gave it no more thought.

But a few weeks later after a holiday abroad, Charlie began to feel pain again. His GP referred him to a chiropodist, who diagnosed a corn and attempted to remove it. Although Charlie has a very high pain threshold, he was forced to stop the chiropodist as the pain became too great.

Charlie was then referred to a podiatrist, who was not sure why Charlie had so much pain. We had spent our holiday in a tropical location and we had worn sandals throughout the holiday, so the podiatrist thought that some foreign matter might have become embedded in Charlie’s toe. He gave Charlie a local anaesthetic and removed some tissue.

But Charlie continued to experience severe, burning pain and we made several trips to A&E in an attempt to discover what was wrong. Eventually he was admitted to hospital and his doctors decided to amputate the toe. Before the operation was to begin, they took a blood sample and were shocked to see the result. Charlie’s platelet count was 2600 x 109 /L (a normal count would be 150 to 400). The severe pain in his toe was clearly the result of digital ischaemia – a clot in the small arteries which is a common complication of essential thrombocythaemia (ET).

A haematology consultant came to speak with us and told us that he suspected ET and that Charlie was lucky not to have suffered a heart attack, stroke or other clot. In the end Charlie did not require an amputation. He was given medicine to dissolve the clot and to reduce his platelet count.

Adjusting to ET

Charlie was in hospital for five weeks and was unable to walk for a further five months. The wound in his foot became badly infected, resulting in tissue loss down to the bone.

Once Charlie was formally diagnosed with  ET  he began taking hydroxycarbamide, initially on a dose of eight capsules per day. It took a year before his counts stablised.

Strangely, Charlie had never previously experienced any symptoms of ET other than some mild shortness of breath. He is extremely fit, and his doctors have said that they believe his strong cardiovascular system protected his body – in fact that it may well have saved his life.

Since his diagnosis, Charlie’s skin has become thinner and his nails weaker. At times, his sleep patterns are disturbed. He sleeps and wakes in short cycles, becoming sleep deprived, then collapses and sleeps for 14 hours straight.  During the first 18 months after his diagnosis, he complained constantly of burning feet and couldn’t bear to have so much as a sheet cover his feet. We swapped sides of our bed so he could dangle his foot off the bed – a bit of comedy in an otherwise distressing situation.

After recovery

Charlie works full time, and although he suffers from fatigue, he fights back by increasing the intensity of his exercise programme. He exercises three times a week – this keeps his energy up so that he can continue to lead a busy life.

Charlie now takes three capsules of hydroxycarbamide per day along with low-dose aspirin. He also takes lanzaprol to reduce the toxins caused by the hydroxy, and allopurinol to reduce the risk of gout.  Treatment with hydroxycarbamide has severely weakened his immune system and he suffers from frequent chest infections. We avoid friends with bad colds, and we have often cancelled plans due to illness.

Charlie’s toe has never healed properly and it can cause him a lot of pain. He says that he can tell when his counts are high by the texture of the hard skin, which feels rubbery.

Over the last two years Charlie’s platelet counts have been creeping up; his consultant suggested increasing his dose of hydroxycarbamide. We asked if we could delay the increase in dose pending another blood test in six weeks and we are awaiting his next test to know the results.

I have recently been unwell myself, and I became very angry – I didn’t feel that Charlie  was being supportive. On reflection I realised that he is not only used to, but dependent upon me to care for him. He became quite frightened by my becoming unwell. Since talking to others I realise that this is a normal reaction for someone who lives with a serious illness.

Has Charlie’s diagnosis changed us? The simple answer is yes. We live life for today and we don’t leave things unsaid in case the opportunity to say them is taken away. More than anything we realise that we have to make the most of every opportunity and live each day as if it is our last.

Has Charlie’s diagnosis changed us? The simple answer is yes.