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Patient story

Hara Mihalea

My name is Hara Mihalea. I'm 52 years old and a mother of two biological and one adopted child. I was born in Athens, Greece, studied in London, and made a home in New York City where we lived for 15 years. In 1995 we moved to Thailand and in 1996 my work as a Public Health Communications Advisor took me to Cambodia where I still live and work. For many years I have experienced shortness of breath, fatigue and heart palpitations. My doctors always associated my symptoms to "too much work," "family stresses," or "going through the changes of life." I was advised in many of the visits to the doctor to take it easy and reduce my work load and stresses.

In 2007, on a long air trip from Phnom Penh to Washington, DC, I experienced my first really bad symptoms. My chest was throbbing and fluttering and I could not breathe out. To calm myself and also in denial that it might be something serious, I attributed my symptoms to being very tired and having had too much coffee before and on the flight. The symptoms got a little better during my stay in DC but got worse on the flight back and I had to make a stop in Bangkok and go straight to see a heart specialist. It was then, following an echo, that I was diagnosed with pulmonary hypertension and was told that there is not much to do besides regular follow-up.

In mid-2008 I was feeling even worse and went to see a different heart specialist. She agreed with the previous diagnosis and did a number of other follow-up tests which included CT and dye to determine the underlying causes. It was at that time that I was diagnosed with primary pulmonary hypertension and once again was told that there is not much I can do. Towards the end of 2008, still feeling some days worse than other days, I decided to go and see a pulmonary specialist. In all this time no one had advised me or even suggested that I do that. I was admitted in the ICU and went through a very difficult and painful CRA procedure. I was told that the pressure in the lung was much lower than the pressure measured in the echo and I was diagnosed with mild PPH. I was advised to stop drinking coffee and stop doing the only exercise that I ever did and enjoyed doing—swimming—and to instead take up Tai Chi and Yoga. Finally, I was told to reduce my air travel, which, by the way, is essential in my work. I was not given any medication to relieve my symptoms.

My life has changed completely as I try to figure out what to do and how to manage my illness. I hate having to put my family through this, especially my little girl. I have read all that is available to read on PPH and I have learned that even for mild PPH a doctor should prescribe medications to help relieve the symptoms. My doctor doesn't believe in this. I'm very depressed which is affecting my daily function. A month ago a GP diagnosed me with clinical depression and started me on Prozac. I feel that I'm able to manage my depression a little better and that helps me breathe a little easier. But is this the answer? I doubt that in the long run Prozac will do me any good besides helping me to have some balance. I hear that other people are managing with medications that are specifically for our disease.

Over the last two years I found people that, after many years, were finally able to diagnose my disease and I was glad. However I have not yet found anyone to help me to manage my disease. I'm wondering whether I would have been better off not knowing! What is the point of knowing when access to key drugs depends on the knowledge and attitudes of the individual that is treating you?

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.