ITP Personal Stories

ITP - A Blessing?

During 1990 at the age of 48 I was an instructor teaching disabled people communication and mobility, including swimming. During this time I started to itch all over. After some months the itching became so unbearable I reluctantly went to my doctor (I had not needed to see a doctor for years, in fact I had not been a hospital patient since 1960).

My doctor suggested that I had an allergy and prescribed anti-histamines. The situation grew rapidly worse. I became unnaturally very tired and very hungry. A blood test revealed a my platelet count was 27. A week later it was 23! Fortunately I had seen a different doctor who had an old friend at the hospital. I was sent straight down to see a professor who did a bone marrow test. The result was that I was producing plenty of platelets but he said that my spleen was destroying them and it might be a good idea to remove the spleen. I suggested that he could remove it but what if the theory did not work? The professor declined to answer. I suggested that perhaps it would not be a good idea because the ultra sound scan showed that it was normal, so it was decided to continue the steroid treatment.

After a few months I realised that I was going blind and getting very thirsty and the doctor suggested stopping the steroids because they were damaging me beyond repair. Fortunately for me I am a big strong man and just stubborn enough to keep my body going despite extreme pain. All of my joints had seized up. I was wheel chair bound. I really thought that I was going to die. I had lost my physical strength. All I had left was my faith in God and a platelet count of about 50. The doctors did not hold out much hope and could not give me a prognosis but I felt that God was saying ‘Fear not, I have granted you long life.’

I thought that my mind was going. I was convinced that the cause of the problem was extreme stress coupled with food allergies. The doctors said that I did not know what I was talking about so I went to see a herbal specialist, who agreed with me and gave me some horrible black medicine and some tablets to alleviate the joint and muscle pains. The results were fantastic. I could walk again and my platelet count rose to the low 80s. In 1992 I was ordained as a Pastor in the Pentecostal church. This fulfilled a prophesy made several months earlier.

I was getting on fine for the next few years, still with a low platelet count between 56 and 65 when it happened. One day in August 1997 I started to shake uncontrollably and violently without warning. During that night I haemorrhaged into my left leg. It swelled up to an enormous size and went black. A blood test showed a platelet count of 2. I was rushed into hospital bleeding everywhere, in my water, under the skin. I had thousands of small red spots and my leg was unbelievably painful. I was given little chance of survival. It was back to the steroids 16x5mg every 4hrs for two days. My count went up to 50, then up to 550 (I felt awful until it went down below 100).

My count is now 48 and I feel fine again. Even though I have been off steroids for about a month I am again stiff and my muscles are again very painful. This situation will resolve itself in a few months I am sure. I am taking vitamin C, Frumil Diuretic, and selenium with various things in it to help my immune system.

My question in all this whilst I was in hospital was ‘What is God trying to tell me?’ I knew that I was missing something. The answer was in the hospital day room. There were people having blood transfusions. I thought they were being prepared for chemotherapy but I was mistaken. I discovered that they had terminal leukaemia. I decided that I wanted to make a difference but the next question was how? I realised that the biggest problem regarding ITP was the psychological rather than the physical effect, and this was something that I could use my teacher training and my own experiences to help people with, but I have little money.

I am a Pastor without a church. However, the Lord found me enough to buy a scrap canal boat which is 38 ft. long and 7 ft. wide. Some friends and I have rebuilt it and I have named it after my disabled wife Patricia Ann who has looked after me despite her own serious difficulties. It is our intention to take ITP people out for short cruises to help their situation both spiritually and physically.

This is a very condensed version of the last 8 years, and strange to relate, because as I write ITP appears to be almost a blessing rather than a disability. I now have to rely on God totally instead of my own mental and physical strengths.

-- Pete (rev_pete@talk21.com)