I often think that the situation is unfair for our PH patients. First of all, our doctors are not familiar with pulmonary hypertension. PH patients should be treated vigorously like any other disease, but the doctors don’t want to fight hard enough for PH patients. I think that doctors more or less know what this illness is about, but considering the fact that there are no medicines for treating patients in our country, the easiest thing to do is to give up and not work hard to save our lives, because they see us as people that are doomed. That is cruel. Each time I take my mum to the specialist, who is not her general practitioner, and when I say that she suffers from PH, I’m confronted with many negative reactions. Most of the time, they say that’s it, we cannot do anything to help you. I am tired of answers like: You know, that’s it, we cannot do much! The other thing that I don’t understand, is the situation that arises when she is has an acute attack of suffocation and I call an ambulance. When I explain that she suffers from PH, they don’t want to come. They tell me that they don’t have medicines for that and that I should give her oxygen and try to keep her condition stable and take her to her doctor in the morning. This is an absurd situation in which you feel totally helpless. She cannot breathe, she is struggling to get some air while you sit next to her and watch….absolutely helpless.

My mum has been suffering from PH for 5 years. Her condition from one checkup to the next seems a little bit better, however physically she still feels very bad. She moves with difficulties, she is not able to walk or to go out, all her physical activity is limited to the house. The people in our community and our friends do not know what pulmonary hypertension is. Every time I say that my mum suffers from PH, they give me a questioning look, and ask me what it is all about. When I explain to them, all of them express reactions of dismay and regret. After all of this, I realize that only my family is aware of what PH really is and the ways we can fight in order to help her. We are a huge support to her, this is something that she often says. However, both my brother and I have our own families. Our families suffer a lot because sometimes, in the middle of the night, you have to leave your child in order to go to her house and help her. They suffer because together with us they see how helpless she actually is. They are worried and they suffer just as we do. Somewhere, in the middle of all the fighting, you realize that this is not an illness of only one person, but this is something that affects the whole family and causes a lot of pain to everybody. Neither of us were born ready to watch someone, who we really love, suffer and at the same time being unable to do anything to help her.

Except for a few doctors, we do not have any other support.
Often I am confronted with the failure of our health system. The system is a failure because it doesn’t provide the medicines that will make the suffering and lives of these people easier. The medication is just too expensive for anyone who suffers from this condition, to pay out of their own pocket.

People who see her are shocked. This is because her lips are blue and her struggle for breath is sometimes so noticeable that it causes disturbing reactions. They tell me: Do something! Help her! I tell them that there is nothing I can do to help her, but they are persisting: It’s impossible, is there nothing you can do?

When you try to explain to them the disease and the lack of treatment from our health authorities, they are surprised and they again ask for medicine. They say: It’s impossible that there isn’t a medicine.

I very often see the expression of amazement on their faces when they see her wheezing. When people walk passed disabled people they normally simply accept it. They realize that the person has some problem. But when they go passed my mum and see her oxygen cannula through which she gets oxygen, they are always amazed. They simply are not aware that oxygen is a medicine like any other.

I understand that this illness is not a usual or ordinary illness, but nobody knows about it at all. The only exception are a few doctors who are PH specialists. All others know nothing or very little about it.

I really don’t have any hope anymore. I’ve come to a point where I simply don’t know how to help her. I don’t know who I should talk to and ask for help. I simply don’t know how to explain to her that there is no medicine available and that unfortunately nobody can help her. Every time we go for a medical checkup she is full of optimism. She always says: Something might happen, maybe some new medicine is available, maybe somebody will help us … She watches the news every day and says: Look! Something new is happening, I will ask for it when I go for a checkup. A medicine for PH must have come… and then, she is in tears and disappointed again…
Every time she gets more and more hopeless.

IVANA V. the caregiver and the daughter of a PAH patient.