Patient Comments: Cystic Fibrosis - Describe Your Experience

Please describe your experience with cystic fibrosis.

Comment from: Jesus_love_me, 13-18 Male (Caregiver) Published: January 14

A cousin of mind died at age 18. Doctors told him more likely he won't make it past 15 but he lived 3 more years before his death. As years pass I learned about cystic fibrosis and understand that it is essential to keep yourself aware. This disease is a very dangerous disease and I hope doctors can give a better cure than what they are giving.

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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: Nana, 0-2 Male (Patient) Published: August 17

My grandson was diagnosed with CF at birth he is now eleven months old. He is on enzymes, micro lipids and has four breathing treatments a day when he eats his stomach swells and has to be given MiraLax. His breathing is very rapid and his mucus is very thick it is a daily struggle to keep him well!

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Comment from: melissa, 19-24 Female (Caregiver) Published: July 02

My sister was diagnosed with cystic fibrosis when she was 2 years old. She spent the first 2 years of her life in and out of the hospital. She has had a rough time with this disease! She has had many operations due to her illness. Her lungs have collapsed twice among other things. She is now 21 and is the hospital now. She needs a double lung transplant.

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Comment from: Frankish, 19-24 Female (Patient) Published: November 26

I am a 19 year old student who has been recently diagnosed with cystic fibrosis and also type 2 diabetes because I have cf. I have only told close relations because I find it hard telling people as I feel very self conscious with my diagnosis. I've learned to accept it but I'm just afraid of what people's reactions will be if I ever let it go public. The cf I can handle but the diabetes is tough. I'm off sweets and fizzy drinks and yet sometimes it is still high.

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Comment from: Concerned Grandmothe, 13-18 Female (Caregiver) Published: August 09

My 16 year old granddaughter has been treated for asthma since she was an infant, we were recently, last week, told she has signs and symptoms of cystic fibrosis. She is presently in the hospital with a severe lung and kidney infection and is in a lot of pain. The doctors will not give her more than liquid codeine and that isn't helping her. She is quite short but isn't underweight, she has been treated for another condition also and that medication makes people at risk of obesity, so she looks overweight for her height, but is not obese yet. I am very worried about her.

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Comment from: SPE96, 13-18 Female (Patient) Published: April 05

I live in Dominican Republic. I was diagnosed with Cystic Fibrosis at the age of 6. Here in my country, there aren't any doctors who are specialized in the disease, so I have to go every 3 to 6 months to the USA to get checked. I have to admit that living with CF isn't easy, but talking with others that have it can help you a lot. Another thing that had helped me is staying positive. If you think positive, positive things would happen to you.

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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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