I suffer from full-blown cystic fibrosis, which causes the organs in my body to slowly die and become fibrous every day.
What I feel most every day is that my lungs are unable to breathe fully. Each breath is a great effort for me. As if something heavy was sitting on my chest and preventing me from taking a full breath. This causes that I have to take a lot of drugs and rehabilitate myself.
And pain accompanies me every day, I don't know a day without pain. Pain from daily coughing, pain in muscles, joints, abdomen, sinuses, spine intertwine with each other. I tried to accept that my life must be like this. I knew that I had to live in the moment and I couldn't plan anything because it all depends on my health. But even in such a situation, I want to enjoy the little things and moments. Good people around me. Every day I need care and help in various activities, which is a burden both mentally and physically for me and my relatives. However, everyday duties make me forget about the deadly disease which is cystic fibrosis.
My form of cystic fibrosis is full-blown pulmonary-abdominal, with pancreatic insufficiency, secondary diabetes, progressive cirrhosis of the liver, chronic gastritis with impaired nutrient absorption resulting in underweight, chronic sinusitis, emphysema, lung capacity 48%, frequent hemoptysis, shortness of breath, rapid fatigue, heart with pulmonary configuration, i.e. hypertrophy and right ventricular overload, osteoarticular problems, chronic pseudomonas aeruginosa infection. Developed asthma, allergy, discopathy with age.
My body is very weak and the disease is not visible, there are only test results and medical documents. What I went through and I am still going through cannot be described in a few sentences or photographed.
Every day, because for a serious illness there is no vacation, I have to:
• Do inhalations with bronchodilators, mucolytics and antibiotics,
• Drain the lungs,
• Take several dozen tablets a day, including antibiotics, antibiotics are common for cystic fibrosis,
• Get active, get fit.
• Live hygienically, avoid infections, infected people, use masks and disinfectants and everything that should be done in the age of COVID-19. In cystic fibrosis it is a routine,
• In particular, avoid contamination with bacteria: Pseudomonas, Burkholderia cepacia, MRSA, which destroy already fibrotic lungs.
In my case, cystic fibrosis showed its first symptoms at birth. I had meconium obstruction and respiratory failure. The doctors did everything they could, but they didn't give my parents hope that I would survive. From that day the fight for my life began.
In the 1980s, it was not known what this disease was. There had also been no studies that had found that a baby could be born with cystic fibrosis. Medicine was developing very slowly, which gave little chance of survival, let alone recovery.
When I was 5 months old, I came to the Children's Health Center in Warsaw. There, for 21 years I had extensive care with many specialists. And from the age of 9 until now I have been treated at the Cystic Fibrosis Clinic in Gdańsk. In northern Poland, it is the only cystic fibrosis treatment center located in a children's hospital. Adults are just growing, but from my age and older they are single people. Many sick people have long passed away. I live with this thought every day, how many friends have already said goodbye and I know that this disease cannot be underestimated.
I never wanted to make my illness public, but when resources are needed for treatment, sometimes this is the only option. And now there is such a chance, huge for me, that I can live on, breathe, can live to an old age that I never thought about. The disease is progressing and I don't have much time anymore ...
In other countries, the medicament for cystic fibrosis is reimbursed, and the results of the research show that patients have an increasing lung capacity, they start to put on weight. Their bodies strengthen and life becomes more normal as their organs gradually regenerate. The first effects are visible at the beginning of treatment. Unfortunately, in Poland, the drug is not reimbursed and very expensive. The annual cost of combined therapy with these preparations is € 246,681.60, so I need your help.
If anyone can imagine living with this disease for 35 years, with constant visits to hospitals, medications, pain, suffering and all the limitations that accompany me, they know how much I want this medication. I want to live for myself, for my relatives.
I don't want to die too early….