Patient Comments: Cystic Fibrosis - Describe Your Experience

Please describe your experience with cystic fibrosis.

Comment from: amanda, 25-34 Female (Caregiver) Published: February 14

I was told I have cystic fibrosis. I'd just like to know how I can tell as I've been like this a year and 2 months now. I have been finding it hard to breathe, my jaw is numb all the time and I do have pains in my stomach and my lungs and chest. I have gone for blood test and all came back normal. An x-ray on my chest and lungs are clear too. I do suffer from headaches and other pains in my arms and legs. I am turning 26 this year. I'm hoping I don't get COPD as my mum passed from COPD. My lungs always have pain in them. Sometimes I awaken at night shaking and have shortness of breath like a panic attack.

Was this comment helpful?Yes
Comment from: Big Bird, 7-12 Male Published: March 31

I had abdominal aortic aneurysm open repair, and the cause was smoking. It was done on 9/12/02, 13.5 years ago. After a 3 month recovery, I never had a problem. I was 58 years old at the time, soon to be 73. I asked the vascular surgeon who did the surgery, how long I had to live. His reply was, 'see you in 40 years', and never saw him again! I do feel fortunate.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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).

Was this comment helpful?Yes
Comment from: Granny, 45-54 Female (Patient) Published: March 13

I am not a patient, just wondering can Adults get cystic fibrosis. I have had this cough for a few years now. And doctors have treated me with inhalers, antibiotics, nothing works. Now when I blow my nose it is bloody, only in the mornings though, and I'm tired all the time.

Was this comment helpful?Yes

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?

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.

Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.

Health Solutions From Our Sponsors