I was fit – a sportsman. I ran marathons. So why was my brother phoning me every Saturday, all the way from Australia, insisting I visit my GP for tests? After six weeks of resisting 5am phone calls, my wife said ‘enough is enough’. I made the appointment.
My brother’s persistence saved my life!
My GP took blood tests and referred me to hospital where I was told my ferritin level was nearly 2,700. This was twice that of my brother who is three years older. I started venesection (phlebotomy) treatment that day. Later, an ultrasound scan and a liver biopsy showed that I
had a severely fibrotic liver. I stopped drinking alcohol immediately.
My treatment then consisted of weekly venesections. This lasted for 18 months and finally began to reduce my ferritin level. The weekly visits to hospital proved quite disruptive – an understanding employer is to be welcomed.
Like most people, I was ignorant of genetic haemochromatosis. So I joined the GH Society, not only to gain knowledge but to meet other haemochromatotics. I have found this to be very
beneficial. Unfortunately, for some haemochromatotics, late diagnosis is to prove fatal. But it makes me realise how very lucky I have been and explains why no male member of our family, other than my father, had ever reached the age of 65.
Looking back, I had visited my GP and presented classic symptoms such as arthritis, chest pain and discomfort on my right side. Each was treated but never connected. Other symptoms, such as extreme tiredness and mood swings, presented themselves before and during treatment. This certainly tested relationships. A supportive partner is essential.
I do have sympathy with GPs as the condition presents itself over an extended period. In many ways, my brother has totally different symptoms to my own. What I do question is, after 14 years, why are my brother and I still the only haemochromatotics in our respective surgeries? A national screening programme would help, but the NHS appears reactive rather than proactive in nature. As with all initiatives, cost is paramount.
I have found it invaluable to manage my own treatment. I have, during the last 14 years, met many nursing staff. I’ve been transferred from Haematology to Gastroenterology and back again. Simple things such as knowing the colour tube for a specific blood test can save time. Nursing staff change regularly. Keeping a record of when I need extra tests etc. has proved helpful.
Bringing things up to date, my treatment has reduced most of the symptoms mentioned earlier, apart from the arthritis. In fact, I write this as I recover from a total knee replacement. A follow-up liver biopsy showed that my fibrosis is almost completely reversed. This demonstrates the benefit of reducing alcohol intake, especially during the ‘de-ironing’ phase. My life expectancy is now considered to be normal and, after recovery from my knee operation, I will be back in the gymnasium and leading an active lifestyle. I even take the odd glass of wine.
Yes, I am a very lucky haemochromatotic.