Patient Comments: Cystic Fibrosis - Describe Your Experience

Please describe your experience with cystic fibrosis.

Comment from: Marlouise, 25-34 Female (Patient) Published: November 06

I'm almost 25 years old and I was diagnosed with CF (cystic fibrosis) when I was just over 1 year old. I went to the doctor every day for drips and I was on a lot of medication but by the time I was 5, I started feeling better and my mom stopped giving me medicine. When I went for my next appointment at the hospital the tests showed that my body had healed itself and there was no sign of CF anymore. The doctors are still baffled.

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Comment from: holdingonforhope, 13-18 Female (Caregiver) Published: October 27

A friend of mine recently passed away due to an infection in her blood stream. She was in the hospital being treated for malnutrition brought on by her cystic fibrosis. Her older sister, who has CF as well, recently received a lung transplant just after graduating from high school. It was extremely difficult to watch someone who was younger than me, and who had a full life ahead of her, pass away. I am currently in college working to receive my nursing degree, and she will remain in my heart as my motivation for the rest of my life.

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Comment from: Nauna, 7-12 Female (Caregiver) Published: July 25

My 11-year-old granddaughter was diagnosed with cystic fibrosis at age 2. Until recently, I have been very involved in my granddaughter's life and have been instrumental in her care along with my daughter. She has had many doctor visits and hospital stays. Her visits in the hospital range from 4 to 14 days. Many of those visits I have stayed with her overnight in the hospital. She has a wonderful team of doctors in California. I hurt for my granddaughter, my daughter, and my other grandchildren. Someday, a cure will be found for this disease that my granddaughter and many others struggle with daily.

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Comment from: djnutz82, 19-24 Male (Caregiver) Published: June 28

My girlfriend has cystic fibrosis and 3 weeks ago suffered a collapsed lung. She was treated with 1 tube then 2 tubes in the chest as the 1 wasn't working. After another week she had an x-ray and the doctor said he feared her lung would collapse again if they removed the tubes so they decided to operate. The next day she went and had the operation and then was put on a ventilator for the next 48 hours. In that time she caught pneumonia. After 5 days of antibiotics I was told she was making improvements and getting stronger but then 2 days later was informed that the antibiotics had stopped working and to expect the worst. However now she has been put on a higher and stronger dosage of antibiotics and has been told it is clearing the infection. However I'm still extremely worried as I was told before she was improving.

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Comment from: dragonfly, 45-54 Female (Caregiver) Published: May 21

My mother is 49 and just last week was told she has cystic fibrosis and that she will need a lung transplant. My mother has battled for many years with RA and has had many tests done. I've been curious during this week of finding out how after all the tests and x-rays my mother has had just in the past year, how no one noticed it. I'm worried of losing my mother. Last fall she was in the hospital for 2 weeks with the swine flu that almost took her from us. How could something like this be missed after all she is 49 years old. I've read and researched and listened to doctors say it was RA causing the cystic fibrosis, but what I've learned in research in the past week says it's inherited. The doctor says lung transplant and I'm curious how long is that list, will she live long enough to get one as a mother and a daughter I have to admit I've cried myself to sleep, I've cried everyday and I freaked out when my mom told me the bad news thankfully she told me while I was home on the phone with her instead of at the hospital with her. I refuse to let my mom see how worried I am for her.

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Comment from: Toni, 7-12 Female (Caregiver) Published: November 11

For years my body would ache all over and I was always tired. I would have unexplained, constant chest pain. I went from doctor to doctor who said I was fine then in August 2014 was told I have fibromyalgia. I've been taking Gabapentin (300mg, 3 times a day).

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Patient Comments

Viewers share their comments

Cystic Fibrosis - Symptoms Question: What symptoms have caused you or your child the most problems? How did you treat them?
Cystic Fibrosis - Risk Question: Have you and your spouse/partner been tested for the CF gene? Has or would it affect your decision to conceive?
Cystic Fibrosis - Diagnosis Question: What were the tests that resulted in a cystic fibrosis diagnosis for you, a friend, or relative?

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