"Told heart rate was normal when having a heart attack"

About: Colchester General Hospital / Cardiology Ipswich Hospital / Cardiology

(as the patient),

My story of being told my Atrial Fibrillation was harmless and then being told that my heart rate was normal when I was having a heart attack. Then being told by another hospital that I had not had a heart attack. My extreme chest pain being ignored. Being asked why was I playing the system by a nurse. Then being disbelieved when I found an alternative medication that actually worked.

I have suffered from Atrial Fibrillation for most of my adult life and was constantly told by my GP that it was harmless. But one day on the golf course last year my AF went out of control. I drove myself to the nearest hospital and presented myself at the A&E where I was told my heart rate was normal. I insisted (being quite ill) and the nurse agreed to do an ECG. This showed my heart rate to be 215. So much for the accuracy of the heart rate monitor she used on me the first time. The nurse called in the resuss team by computer link and the next thing I was told I would shortly have a feeling of impending doom as a doctor unloaded a syringe of unknown fluid into my arm which was apparently designed to stop my heart for a moment. The nurse leaned over me and whispered "You were right to come in to the hospital". They took several hours trying to reduce my heart rate and I spent 5 days in the cardiac ward. I was told that I had had a Myocardial Infarction after tests had shown that damage had occurred.

I was allowed to shower before going home and I felt very ill from the physical exertion just from having a shower. This I was told was totally normal for heart attack patients.

This was not my local hospital so when I returned home I switched to my own hospital for tests. This hospital decided that I had not had a heart attack at all and I was fine. Despite the fact that I could hardly climb the stairs at home. They took me off of the drugs and one week later I was back in A&E at my local hospital having been taken there by Emergency Ambulance. This happened about 5 times in all and a 5 day stay in the cardiac ward was the highlight. During that time I had extreme chest pains which lasted from midnight to dawn and I had to sit in a chair all night with oxygen. According to the specialists I saw I was quite healthy. A nurse even asked me why I was playing the system. (As if I would have put my health at risk by being in hospital other than for a genuine reason)

I finally decided to try to work out what was happening for myself and realised by a process of elimination that while I was in hospital I was being injected with Heparin but when they sent me home that was the only drug I was not on. I asked my specialist to be put on heparin and he agreed but only for a couple of months. After a few adjustments to the dose I was feeling much better. Then after a couple of months my specialist wanted to take me off of the heparin because he could not find anything wrong with me. I managed to persuade him to keep me on heparin but 3 days before Christmas his secretary told me that I could no longer have any more heparin and that was final. In my opinion the heparin was keeping me out of hospital. I didn't want to die so I phoned the police and they said they wouldn't do anything because it was a health matter. So I wrote a letter to the chief executive of the local heath trust and within hours I was told I could be prescribed heparin by my local GP no problem.

I could not stay on heparin for much longer due to possible side effects but luckily for me by chance I found an alternative form of blood thinning pill.

I now feel fitter than any time in the last 20 years and I have had very few AF attacks and none for the last 3 months. All my other symptoms have gone and I can play golf better than before. I have to be careful not to suddenly stress my heart but apart from that so far I am doing fine on my self prescribed alternative to Heparin.

I must continue with the pills because having missed a dose or two I found my symptoms coming back again. I am having trouble convincing the medics that it actually works but I am from a very technical background where results are everything. I may be making some progress convincing them but there is huge resistance to new ideas in the NHS. There are many theories from doctors as to why what I am taking cannot work but the results show that for me it really does work. I would not be paying 90 pounds a month if it did not work and all my friends know I am not renowned for spending money unwisely. Results are everything, theories are theories. That is Science.

My work involved diagnosis of technical problems and trouble shooting to the highest level and at one time I was in charge of protecting a major UK University's computers from attack by computer viruses. There were 60,000 different viruses at the time. There are now around 300,000 computer viruses at large so I am glad I do not have to do that anymore! I also designed an immune system for data disks. If you don't think data disks can be given an immune system then think again. So there was a striking similarity between my old job and what the NHS does.

Do you have a similar story to tell? Tell your story & make a difference ››