Confession of Djurdjica who drinks viagra every day because there is no cure for her deadly illness: I became a disabled person from a normal person (PHOTO)
Although her statement that she "doesn't expect anything from life" doesn't sound optimistic, she is still a great fighter, full of energy, ready to help others
Djurdjica Caeva (39) from Djevdjelija, at the south of Macedonia, is drinking viagra every day to survive, but the cure for her rare and deadly illness - pulmonary hypertension - doesn't exist. We talked to her last year, and now we have called her again to ask her if there is any improvement in the treatment of her disease.
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- I got used to this kind of life already and there is nothing to decide anymore. I live a normal life as much as possible. As much as I can something around the house, and when I can't, I can't. That's it. You simply get used to it. I know patients that have other diseases with pulmonary hypertension. They are in an even worse situation than I am because they don't have the therapy - Djurdjica Caeva said.
Although her statement that she "doesn't expect anything from life" doesn't sound optimistic, she is still a great fighter, full of energy, ready to help others. She has been fighting the state institutions for five years to register this rare disease and to cover the large treatment costs.
Caeva won the fight for the cheapest of medications for pulmonary hypertension to be placed on the positive list of Health fond, and thanks to her persistence, the basic therapy for this disease is now free.
Pulmonary hypertension is a disease that complicates blood flow to the lungs, increasing the pressure on the right heart chamber, and in addition to difficulty breathing, this can lead to cardiac arrest and death. The illness is incurable, but with appropriate therapy, the patient can prolong and make life easier.
Caeva explains that the symptoms of pulmonary hypertension often do not indicate this wicked disease, but lead to something else. In Macedonia, there is a lack of professional staff for rare diseases, and so doctors often miss the diagnosis. They first thought that it was asthma or chronic pneumonia, and until the right diagnosis, the disease developed even further.
Djurdjica was lucky, so to say.
- The disease was diagnosed immediately. I got sick all of a sudden. Since my right side of the heart got bigger, lips turned blue, I had difficulty breathing, the doctor saw it clearly because those are book examples, that it is pulmonary hypertension in a late stage - Caeva said.
She doesn't know precisely how she got pulmonary hypertension but she said that it can appear as a result of a lot of things. Mutation of the genes, and most it comes most often from systemic scleroderma (sclerosis) because patients with this rare disease most often get pulmonary hypertension. It can also occur after a very severe pneumonia that was not treated.
Djurdjica suddenly became disabled from a normal person. She can't move a lot because she becomes tired and she loses air, and in order to breathe as much as she can, she has to drink 150 milligrams of sildenafil, which is the generic name for the viagra.
- I have to drink 150 milligrams of sildenafil for the rest of my life, or viagra. Depending on the weight of the patient, the dose is prescribed, but over 180 milligrams can't be given. Besides sildenafil, of viagra, I am taking another medicine - bosentan, which has to go together, because the viagra itself is not reacting and it has to be mixed with double, or triple therapy in other countries to extend the life of the patient - Caeva explains.
- Besides viagra and bosentan that is given to us, there are more effective therapies in the world. There are 14 new different treatments and several groups of medications. There is a common practice to put the patient to double therapy, and we are going to one here. Besides viagra and bosentan, the patients are given with another therapy, which is enormously expensive for our conditions - Djurdjica said.
Breathing is a great problem for the patients with pulmonary hypertension, which can be discouraging. While breathing is normal for other people, for the people with this disease every new breath is a new challenge. There is an unstoppable hunger for air because inner organs don't have enough oxygen.
This young, brave woman from Djevdjelije is fighting the battle for each new breath each day.
- It's hard when I am out of breath, but I have a strong desire for life while I watch my son Boris (14) and my husband Ratko, who are my greatest support and help in the house and life. It is important to face and fight this disease, and not to disappoint the closest to you. Every day is a fight. As soon as you start the treatment, as sooner it can be controlled, stop progression and live long enough to prove that the disease can't limit you. The limits are there, however, because of the disability which is not visible, and it is constantly even with some smallest house works.
- I can move, I am not tied to the wheelchair, but I need to use the wheelchair if I walk longer because my heart becomes tired and I have difficulty breathing. When you see me without a wheelchair, no one can suspect that it is a disability, which is not noticeable. Husband Ratko is the main in the house, he is cooking, and I make lunch once a week if I can, or at least help, but after that, it takes a lot for me to stabilize - Djurdjica Caeva said.
She is a founder and the president of Association for pulmonary hypertension "Moment plus", and they had a guest from Bulgaria last year on may 5th, the day of pulmonary hypertension.
- He ran a marathon. He is a patient as well but with a different form of pulmonary hypertension, thromboembolic hypertension that can be cured. It's the only one that's curable. With his participation in the marathon, we wanted to show that people who have thromboembolic pulmonary hypertension should not be afraid and must struggle to get to healing and normal life. The colleague from Bulgaria ran the entire marathon, the entire 5 kilometers, and I was in a wheelchair - Caeva said.
According to her, over 25 million people in the world are affected by pulmonary hypertension, and between 8 and 10 people are suffering from this disease in Macedonia, and the youngest patient is only 4 years old.
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