The story of Natalia
Life can win
The disease came upon me quickly and unexpectedly. Like a storm with no warning. Within a month, after a cold, I started to have breathing problems and I couldn’t walk more than 150-200 meters without making a stop to rest and recover my breathing. In the summer of 2009 I heard for the first time about the rare disease “pulmonary arterial hypertension”. For about a year I was totally lost, I did not know where I was and whether and how to continue. Then I found out that I could fight the nightmarish disease which was trying to take over my life. So I fought and I fight. Until today.
Not only I have not retreated over the last six years in front of the insidious disease but I am also fighting on behalf of everyone in Bulgaria who shares this difficult fate: I founded and have been managing the activities of the patients’ organisation Bulgarian Association of Patients with Pulmonary Hypertension. This has been my main personal cause.
The therapy with trepostelin keeps me alive but cannot cure me. As my disease progressed, death became more real than ever. And yet there is a possible way out – to save my life I need a bilateral pulmonary transplantation, and an urgent one. Life can win, if there is an adequate and fast enough medical intervention. I hope that in 2015 I will have new lungs and a new life.
“The disease of the blue lips and the blue hands”, as they call it, could overtake and tear anyone’s life down. You cannot breathe and you get tired from every little step or movement, your feet and hands swell, your lips and hands turn blue, you suffocate. You sleep with an oxygen mask and climbing stairs is an enormous challenge.
Although the pulmonary hypertension is known to the medical community since 1891 (it was first described by the German pathologist Ernst von Romberg), it remains even today un incurable disease. Patients can only be given supportive therapy. The illness and the suffering it brings are often invisible to the others – if the patient stays still and silent, the others wouldn’t even notice in how much trouble and difficulty he/she is. The PH patient looks well. But it is only an appearance.
People affected by pulmonary hypertension can’t speak long because they suffer from shortage of oxygen. To finish a sentence depends on much air and oxygen you have in your lungs. And that is – not a lot at all, typically it is enough to say 5 to 6 words. Pulmonary hypertension makes you realise how much a word is worth. In the world of the healthy people one can speak for half an hour and not say much. In the world of the pulmonary hypertension patient every word matters as it could easily be “oxygen”, “I am fainting” or “ambulance”. And, yes, there is no cure unless you are “given” new lungs, and yet there is something so curative – the love and support of close ones and friends.
You’re not alone with PH, join the international community: https://www.rareconnect.org/en/community/pulmonary-hypertension