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– When I found out at the age of 14 that I had cystic fibrosis, I did not realize what awaited me – says Marta, one of approx. people in Poland who live with this incurable disease. Get to know the story of Martha – a woman who, despite a terminal illness, learned to be happy.
In the photo: Marta during her hospital stay.
- Cystic fibrosis is a genetic disease and therefore incurable. First of all, it damages the respiratory system, but also the digestive tract and other organs cause problems
- Martha was diagnosed with cystic fibrosis in 2003, when she was 14 years old. – In the past, cystic fibrosis was not that well known and I was treated simply with antibiotics. Over the years, my body managed to cope without proper treatment
- The main task of cystic fibrosis treatment is to alleviate its symptoms and prolong the patient’s life. In recent years, causal treatment options have emerged for patients with specific mutations.
- It happened in the case of Martha. Kalydeco is her hope. Until recently, monthly treatment cost 74 thousand. PLN, from November the drug is reimbursed
- Do you want to live longer? Make a simple test and find out how!
- You can find more such stories on the TvoiLokony home page
Marta was diagnosed with cystic fibrosis in 2003, when she was 14 years old. – It was very late (today the disease is diagnosed mainly as a result of screening tests in newborns – editor’s note). “The symptoms were typical from the beginning, but in the past, cystic fibrosis was not that well-known and I was treated simply with antibiotics. Over the years my body managed to cope without proper treatment – he tells us. Until finally there was hemoptysis and finally a correct diagnosis.
After the diagnosis of cystic fibrosis, inhalations and drainages began, as well as getting used to death. – I remember waiting for the test results and diagnosis at the clinic. There was a leaflet on the table with a story about a 21-year-old girl who raised money for a lung transplant. I read it and cried out. Thought I didn’t want to be sick of it. Unfortunately, it was not the case.
Marta learned about the disease from an encyclopedia. – Shock again. It said that people with cystic fibrosis lived to be around 16 years of age. There was crying again and the fear that I only had two more years left.
Cystic fibrosis is said to be the most common “rare disease” in Poland. As we read on the website of the Breath of Life Foundation, it is estimated that over 1,8 thousand people live in Poland. – 2 thousand affected by the disease, although the number may be higher.
When Marta was 17, her condition deteriorated so much that the hospital became her home every four months (she spent an average of two weeks on the ward each time). Thanks to these visits, she got to know other people with cystic fibrosis, she was able to exchange knowledge and experiences. However, there was also a dark side to this situation.
– People I met and became close to started to die. I remember Mikołaj waiting for a transplant. He told me, “Just because I didn’t make it doesn’t mean you won’t make it” – it was so warm and very supportive. It was also a goodbye. A few days later I found out that Mikołaj was dead. Then Asia left, then Madzia – only a year older than me, after some time her friend. I was terrified again – I was afraid again that I too might die soon. I was going through death one more time. In fact, I am closely related to death. She is around me all the time – she tells us, adding: – I remember how my friend told me: «Marta, all the people on my phone are dying. Only you stayed ». Hearing that gave me a shudder.
It was, however, a turning point. – It was then that I decided to get as much out of my life as I can. Live in such a way that I feel happy.
Cystic fibrosis is a genetic disease (we inherit it together with an abnormal gene mutation) and therefore incurable. First of all, it impairs the respiratory system – the mucus clogs the bronchi and bronchioles and makes breathing difficult. In fact, however, problems are also caused by the digestive tract (the disease affects the functioning of the pancreas, liver, kidneys, and intestines), but also other organs.
Remember, there is no possibility of contracting cystic fibrosis.
In cystic fibrosis, one of the worst things is exacerbation, i.e. worsening of the patient’s condition. – We never know when this exacerbation will come, it comes suddenly and out of nowhere. It’s like a ticking bomb and a lot of stress. When will the hospital be back, for how long and how often. I have friends who are on the ward for up to three months – says Marta.
According to her resolution, the woman tries to focus on the positives. – I try to live with all my strength so as not to regret anything. At work, I hear: you are such an optimist. And I say: yes, I am. Life taught me that.
Three months of total isolation
At 23, Marta decided that she would not have children. – Even then, I had in mind that I would not live to be 30. Today I am 31 years old (I did not expect that I would live so much!), But the decision is still valid. Out of common sense. I do not want to give birth to a child to orphan them later – he explains. However, she has tied her professional life with the youngest – she is a kindergarten teacher. And, as she says, this work is her greatest passion.
In order to be in kindergarten at 6.30 am, she gets up at 4 o’clock. weightlifter – the daily dose of calories in her case is 3,5 thousand). – Sometimes I have to force this food into myself, my body does not rest, it eats all the time, even at night – because in the evening I also use a special nutrient in the form of a drip – he says.
A special device can be used for daily home respiratory therapies. Koflator – Flaem PulmoWaves cough assistant order today at Medonet Market.
After work, another inhalation awaits her, another in the evening and, additionally, breathing exercises. Then connecting to the drip and waiting an hour for it to “come off”. – Around 23 – 23.30 I go to sleep. I sleep less than 5 hours.
- Secrets of cystic fibrosis
Marta’s schedule was changed by SARS-CoV-2. Patients with cystic fibrosis are at increased risk, so she decided to quit her job in March. – Since then, for three months I have been sitting at home in total isolation (a change for Marta was remote work – she prepared presentations for children). At the beginning, I didn’t leave the house at all, my sister left me shopping at the door. Then, for example, I would go to the forest, but not to meet anyone – he says. – We were terrified. My fiance is the driver. I didn’t let him into my house. Fortunately, his employer went to his advantage – as a result, he was on the road for 2,5 months.
He recalls the isolation time as very hard. There were times when she laughed for no reason, only to experience fear and cry shortly thereafter. – I came out of it when I went to the hospital in July – there were doctors’ rounds, nurses came. Somehow it got me on my feet. I decided not to shut myself up at home anymore. I started to live normally.
For me, this drug is a miracle
Paradoxically, the stay in the hospital in July was a great joy for Marta. This was a time when, under the supervision of doctors, she tested how her body would react to Kalydeco, a causal drug used in cystic fibrosis patients with a specific genetic mutation.
Let us explain here that there is no effective cure for cystic fibrosis, and the main task of treatment is to alleviate its symptoms and thus prolong the patient’s life. In recent years, however, treatment options for causal treatment have emerged for patients with specific mutations. This is what happened with Martha. Kalydeco is her hope. – Research in Germany showed that thanks to it, lung capacity increases by 13%. for me it was 17 percent! For me, this drug is a miracle – he says directly.
She found out about his existence eight years ago. – I remember the doctor telling me: Marta, I have good and bad news for you. The first was supposed to be good. “They invented a cure for your disease mutation.” The bad news was that one year of treatment costs over a million zlotys. I thought she missed it, she says. The annual cost of Kalydeco treatment in Poland is over one million zlotys, monthly it is 74 thousand zlotys. zloty. Today we can say about it in the past tense. Since November, Kalydeco has been a free drug for Marta. All because it was introduced to the list of reimbursed drugs.
- What symptoms might indicate cystic fibrosis?
Before that happened, money for Kalydeco was collected for Marta by friends and residents of Kwidzyn, where she comes from. – The whole idea was initiated by my headmaster from the kindergarten. When I went to the hospital again, she called my sister and said: “Monika, we must act”. And it started. My sister launched the action for the whole of Kwidzyn – recalls Marta.
At the beginning there was a Christmas fair, then a charity concert was organized with the help of schools and kindergartens. Then there was an 80s-style ball organized by sister Monika. – We collected from it 21 thousand. Schools, a horse farm, gyms, and the local bank helped. – In this way, we collected 74 thousand. PLN for the first package of the drug – recalls Marta. When the coronavirus stopped the actions, the rescue operation moved to the network.
«It is worth waiting for what is good»
She says about the ministry’s decision itself that it was surprising. – But I admit that the stone fell from my heart. The reimbursement was introduced thanks to the foundations that fought for it, but also, inter alia, media that covered this topic, including MedTvoiLokony. – As soon as we learned about the ministry’s decision, we ended the fundraiser. What they managed to collect was enough to survive until the refund.
– I dreamed about Kalydeco all these years and now this dream has come true. It is a wonderful feeling when I took the pill. Before that, I watched it from all sides. The hospital staff also experienced it. They came to see the “miracle pill”. Then there was a disappointment that these were just ordinary pills with a code stamped – Marta recalls the beginnings of Kalydeco therapy.
Although the drug stopped the progression of cystic fibrosis, it did not cure the disease. The therapy continues – inhalations and basic medications are necessary. For Marta, it costs about a thousand zlotys a month (you can help Marta by donating 1% of the tax to her treatment; KRS number 0000396361 Specific objective 1% 0072850 Marta).
– Life is surprising and we never know what will happen to us in the future. It is worth waiting for what is good. I know this because miracles happen in my life (and not only in mine). It is often the case that we do not notice them, but it is enough to practice mindfulness and open up to them for it to change – these words are addressed to people with cystic fibrosis, but also to all those who, for various reasons, have lost hope.
Currently, there is a battle for the reimbursement of other preparations used in cystic fibrosis.
People suspected of having cystic fibrosis must undergo the necessary diagnostic tests. One such test is the Cystic Fibrosis Genetic Test, which can be done without leaving your home, which is safe and convenient. We collect the test sample ourselves and send it by post or courier to the laboratory. Results are available after 2-4 weeks.
You may be interested in:
- What is the prognosis for cystic fibrosis?
- The most common genetic diseases. How are they made?
- What do our genes say about us?
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