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Chantal Furst kookyfurst@hotmail.com age 46 |
Hello everyone, I am glad to have come across such an excellent web site. Although I have been diagnosed with other illnesses including CFIDS and varicose veins, I also have been diagnosed with heart failure. I am in the process of having a cardiac MRI and further tests to determine the cause of my heart failure.
I live in London, UK. From 1993 to 1996, I was working for an international organisation in Washington DC, USA. At the end of 1995 I was sent to Africa for 2 weeks to work with banks. I was given vaccines and Lariam. Within a day of receiving these I fell very, very ill. I thought it was a tummy bug.
Upon my return, my health went downhill with chest pains, T-wave flattenings, abnormal ECGs, exhaustion; vestibular, cardiovascular, cognitive impairments, and excruciating pain all over. I had tachycardia sometimes up to 200 heart beats per minute and palpitations for hours on end. I did not have the neuropsychiatric side effects such as depression or psychosis also associated with Lariam. I had mainly cardiovascular, neurological, and vestibular symptoms, which Roche now says may be associated with Lariam use. My contract in DC was terminated for health reasons and I returned to the UK.
After a year of being near death with doctors who did not know what was going on, I was diagnosed with post-viral illness. Meanwhile, my heart symptoms were getting worse. In 2001, I was in the coronary care unit for one week. I was discharged and told nothing about my condition. I then had an echo which showed mitral valve regurgitation and left ventricular dysfunction. The cardiologist said not to worry, that this was common. I did not look into it. I thought it was just a little glitch.
Meanwhile, I kept getting more and more breathless, sometimes not doing anything. I was breathless at times just carrying my handbag and sometimes my winter coat felt so heavy I could not wear it. Shifting from one side to another while lying in bed made me breathless and palpitations would start and be difficult to bring down. I was bedridden for another year and became afraid of even moving.
My PCP was not interested, saying that I had post-viral illness and that there was no cure and that anyway, I had allergies and was sensitive to medication so therefore she could do nothing.
I got better and became strong enough to start a degree course at University last September on a part-time basis. Campus is 5 minutes drive from where I stay. In 2000, I had been awarded 10 hours of home help, and other benefits including help on campus and a taxi to and from campus. These benefits were awarded because of evidence from cardiology and neurological reports, but were not based on a diagnosis of heart failure.
Despite being very debilitated, I pushed myself. I was lonely. I had lost all my friends, my home, my income, and had surrendered insurance premiums. I felt I needed to focus on something else. I chose to study in order to keep my mind occupied. I am unable to start again in September because I am simply not strong enough. It will be deferred till January of 2004.
I had a tooth abcess in January which oozed for 2 months. I had not been told by the cardiologist in 2001 that I should take antibiotics if I had dental work. I started feeling very breathless again with chest pain, palpitations, nausea, and edema. I went to A and E once where the doc took my oxygen saturation and it measured less than 93% upon my taking a few steps. The doc said not to worry. He wrote to my PCP and suggested a lung scan but she did nothing.
Then about a month ago, I began walking very slowly. I cannot tolerate heat and feel much worse in the heat. I got chest pains, was breathless, and my nails went blue on my left hand. The cardiologist said this was angina. I suppose heart failure can cause angina. I wrote to my PCP asking her to refer me to a cardiologist. I also mentioned that I had not been told what left ventricular dysfunction was, why my EF went down to less than 50%, the meaning of it all or about the mitral regurgitation.
In the UK now, there is socialised medicine. It is increasingly difficult to get treated. Recourse to litigation is limited. The government has made it almost impossible for patients to sue anyone in the medical field. This means that a lot of chronically ill people like myself are having to fight for proper care.
Meanwhile I read up. I decided that I do have heart failure, and now also have angina. It could be that sometimes my EF would go down, hence the breathlessness upon just moving and with minimal physical activity. I could be wrong but I am sure that it fluctuates. At times I can do more than at other times.
I saw a cardiologist. He said I would have a cardiac MRI and a stress test. I am terrified of the stress test, because I am afraid I am not sufficiently strong. I was given a chest x-ray. The MRI will be done November 10, 2003. He did not suggest anything else. I will now write to him and ask him for more tests. He seems quite kind and interested so far.
I cannot understand why the cardiologist in 2001 did not simply say I have heart failure, instead of saying that my heart was not pumping so well but not to worry. Why did he not mention the mitral regurgitation? This is very dangerous, especially when I had tooth abcess and continous infections.
Chantal Furst - August 29, 2003
My present diagnoses include cardiomyopathy, mild hypokinesis of inferior heart wall, systolic function slightly sluggish (but I actually feel very ill), ischemic heart disease, and peripheral vascular disease.
I am interested in hearing from anyone whose heart failure/cardiomyopathy was triggered by either viral/bacterial or an infectious disease. I would also like to hear from fellow UK residents relying on the NHS for their disease management.
Since 2002 I have had several echocardiograms and tests with verying results. The latest was in November of 2006. I am as puzzled as ever by a vague diagnosis and am still searching for answers in particular as to fluctuating and at times conflicting results. The investigations also concerns a not fully diagnosed heart attack; the first in 2002 and the second in November of 2006.
Chantal Furst - December 4, 2006
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. No one here is a doctor. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. This web site and all its pages copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.