A life with cystic fibrosis is full of challenges and mentally extremely difficult, but the Estonian Health Insurance Fund (Haigekassa) does not understand this fact. Kaftrio, the medicine I desperately need, has received a recommendation from The Medicinal Products Committee (Ravimiamet), but the Health Insurance Fund has not yet reached any agreements with the manufacturer of Kaftrio.
Before trying out this medicine, my life was depressing, to say the least – nothing was improving and everything seemed pointless. I spent my days waiting to fall asleep, because that was the only time of the day that I felt relief. For sleeping, I had to use a CPAP oxygen mask, which caused my face to become swollen by morning, but I was at least able to breathe. In the morning, I was always coughing for at least half an hour to clear up thick mucus from my throat. This was really tiring; I was sometimes out of breath and often, it made me vomit. I constantly needed more treatment: a huge pile of medicine, an inhaler, painkillers, more pills and therapeutic food. The first hour after waking up, my body was so exhausted from pain and coughing that I mostly just went back to sleep. Waking up again, everything repeated: coughing to get rid of the mucus, more drugs, more inhalation, more sleeping until evening – or until the situation became so unbearable that I had to go back to the hospital for at least two weeks.
At this time, I have been able to live my new life (Yes! Kaftrio has such an amazing effect on the quality of my life) for a couple of months (at the beginning of summer, I had the chance to try this medicine for two wonderful months, now one month and slightly more). In the night, I sleep like a healthy person without the need for extra oxygen or a mask. Sleeping well means that my body rests well, and it is no longer simply a substitute for pain and coughing. I have energy that lasts for the whole day! I am slowly able to make my body stronger with exercise and healthy nutrition, plus I have even been able to start working again part-time. Once again, my life has meaning! I am especially happy that I do not have to be hospitalized every month anymore.
Thanks to all of you, my kind-hearted supporters, I have found new meaning for my life, and I am able to see the sunshine! I am once more hopeful that I will be able to wait for the donor lungs and live a fulfilling life. I thank all donators and supporters that have been with me on this journey from the bottom of my heart. Thank you!
While we are waiting for funding by the Health Insurance Fund, YOU can help me stay alive. The donation links and accounts (MTÜ Janno Puusepa Fond and Naerata Ometi MTÜ) remain active.
HELP ME BREATHE!
With your help and in cooperation with Janno Puusepa Fond, we were able to buy a 2 month supply of Kaftrio. In a short time, we managed to collect ~27 750 EUR (find more info about the project HERE), and since Janno Puusepa Fond also had some funds in reserve, we were able to order 2 months of terribly expensive Kaftrio medicine (in total 32 000 EUR). This supply is starting to run out. If you are able to, please help us purchase another 3- or 4-month supply of Kaftrio for Maarja.
How can you help financially?
9008810 – donate 10 euros
9008850 – donate 50 euros
Beneficiary: Naerata Ometi MTÜ
Information: Maarja toetuseks
SMS to number 13013 write Naerata maarja for donating 1,6 euros
SMS to number 13017 write Naerata maarja for donating 3,2 euros
Become our regular supporter, more info HERE