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Denis Chalykh, born in 1988 - cystic fibrosis, mixed subtype

December 2, 2015, 17:15 2752 Author: Olga Vovk, translated by Izabella Balakirsky deti.zp.ua "My dream is to create a family and to have children! And my biggest dream is for a cure to be finally developed for my disease, so that nobody else would ever have to know what cystic fibrosis is like!"

Denis Chalykh, born February 12th, 1988

Diagnosis: Cystic fibrosis, mixed subtype.

Up-to-date treatment news about Denis Chalykh

Medical extract: page 1, page 2.

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Our Denis is older than many others on our lists. He is already 27 years old and he continues actively fighting with the diagnosis he's had since he was born. To be exact, he was diagnosed with cystic fibrosis at the age of 6 weeks in the genetics clinic of his home city Krivoy Rog. During his 27 years of life, Denis has been through a great deal, beginning with his stay in NICU, losing a third of his birth weight shortly after birth, and bilateral pneumonia.

Thanks to local pulmonologists, he recovered, but for the first nine months of his life, he was living in the hospital, along with his mother. Until Denis turned two, the hospital was their home away from home. When he was five, they cultured Pseudomonas aeruginosa out of his sputum. This infection has been gradually destroying his lungs. So for the last 22 years, he's had to fight against this dangerous bacterium, taking inhaled antibiotics on a daily basis and several courses of IV antibiotics a year, for prophylaxis.

After the Soviet Union fell apart, from the time Denis was five years old until he turned 18, he was monitored and treated in the CF Center in Odessa, Ukraine, 3-4 times a year. He met many friends there, who also had CF and who came to the center from all over Ukraine. Every 3 months, he met them during his treatment in Odessa, but it was very difficult to live with the realization that not all of them would be alive three months later, when the next treatment session would be due.

In addition to that, Denis would also be admitted to the pulmonology unit of the hospital in his home city. Therefore, he did not attend school and was home schooled from 1st through 11th grade. He taught himself how to play guitar and use the computer, and therefore, he never was isolated from the daily lives of his classmates, but participated in all school celebrations and special activities.

After finishing school, he got a job as a courier, working half time, because he was certified as having disability and recommended by the certifying organization only for clerical work. His health did not permit Denis to apply for college, because he has to be hospitalized 4-6 times a year.

This is what Denis writes about himself: "I love dogs very much, and that is why I've always had a four-legged friend at home. That helped me feel that someone, besides my parents, of course, needed me. While taking walks with my beloved doggies, I've gotten to like taking nature photos. I also take videos; sometimes I take and edit photos and videos of children's school events.

In 2012, I had a right-sided pneumothorax and bacterial pleuritis, for which I spent 6 months in the hospital. After that, the Certificate of Medical and Social Expert Commission confirmed that I can only work from home.

At the end of 2012, my vision declined suddenly. I was found to have bilateral cataracts, and I had a lens replacement surgery in 2013. The world grew colorful again, because before, I was seeing everything as if it were fogged over, or through a plastic film! In 2015, my vision started getting worse again, and I was found to have a secondary cataract. Therefore, I had another eye surgery, laser removal of the secondary cataract.

Even though treating my disease takes up a great deal of time for daily procedures - nebulizers, chest physiotherapy, massage, breathing exercises, and IV drips, I try to live a full life.

I manage to find the time to hang out with my friends; I also like traveling to see interesting sights, and other cities. I am very fond of theater, and I never miss the photo and art exhibitions in our city.

I dream of starting a family, because many of my peers already have children. And my biggest dream is for a cure to be found for cystic fibrosis, so that nobody would ever again have to experience living with it!

I will be grateful to everyone who will help me in this trouble - help me keep on living!"

Denis always needs these vitally necessary medications:

Kreon 40, 000, Ursosan 250mg, Heptral 400mg, Medrol 16mg, ACClong 600mg, Kasark N 16mg, Pulcet 40mg, multivitamins: Aquadeks, Vitrum for adults, Azithro Sandoz 500mg, Vikasol 15mg, Seretid Diskus 500 mg. He also needs nebulizers, four times a day: Berodual, Pulmozyme, Toby (bramitob), Colistin, Dioxidine. And IV antibiotics, prophylactically and to treat exacerbations: Fortum, meropenem, Ciprinol, Cefepime, Amikacin, tobramycin. Every month, Denis' medications cost at least 20,000 hryvnyas or 800 US dollars. Denis and his mother Svetlana can't manage that without your help.

The family lives in Krivoy Rog.

Cell phone of Denis: +38 096 962 53 73.

Cell phone of Svetlana, mother of Denis: +38 096 962 53 72.

Email: DenFunnyBoy@gmail.com

Skype: den-maliy

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