Patient Comments: Cystic Fibrosis - Describe Your Experience

Question:

Please describe your experience with cystic fibrosis. Submit Your Comment

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.

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.

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.

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.

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.

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).

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.

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.

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.

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.

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!

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.

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.

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.

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.

Comment from: dsd334, 45-54 Female (Patient) Published: April 26

I am a 46-year-old female patient. I was diagnosed at 19 months old. I do well for the most part, however, my regular cystic fibrosis doctor passed away a couple of months ago, and I am seeing a new doctor that has changed a lot of my medicine, so I am not doing as well as I have in the past. Please get with a doctor that is knowledgeable about CF, will treat lung infections aggressively and treats the whole body, not just the lungs.

Comment from: Littlebit, 45-54 Female (Patient) Published: June 15

I have a lot of health problems. I haven't been diagnosed with cystic fibrosis, but I have with COPD and Emphysema, which from what I've read it almost sounds like the same. Yes, I am a smoker and have tried to quit with patches and medications, but it has been a real struggle for me. If there is a big miracle drug out there I hope to learn about it. For my sake and family's. I would love to be able to quit, I want to live longer to be here for all my family. So for those of you who don't smoke PLEASE DON'T pick up the bad habit, cause for some it's really hard to quit and it makes harder on our loved ones.

Comment from: 13-18 Female Published: May 31

My aunt and Uncle died from cystic fibrosis. I am doing a report on this so that I can learn more about it.

Comment from: 13-18 Female (Patient) Published: January 28

I'm a 14 year old female and today I was diagnosed with cystic fibrosis. I have problems with my sinuses and an ongoing cough but fortunately no problems with my digestive system. I have to do daily chest exercises now and I'm on various medications. My doctor believes that they caught this disease early enough and the outlook of my future looks good.

Comment from: donya, 25-34 Female (Patient) Published: November 19

Thanks for this information. I am a 25 years old female from Saudi Arabia diagnosed with mild cystic fibrosis since I was 5 years old. I am now on creaon enzymes, a Symbicort inhaler and I frequently use antibiotics for my chest infection. I work as nurse in pediatric oncology. My problem that I have now is with frequent abdominal pain in the epigastric area. I have had blood tests and they found high level enzyme level s. My doctor said cystic fibrosis may affect your liver.

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