NetWellness Cystic Fibrosis

I`m 24 and Tested Positive for CF

John Heintz MD — Wed, 31 Aug 2011 11:08:00 EST

Question: I'm 24-years-old and I was just notified that I tested positive for CF. I'm very confused since I've had blood work done my whole life and never heard of this before . I asked my family and it's never been found in any other family member. Can anyone help me?

Answer: It is confusing and disturbing to receive a diagnosis of CF as an adult. There is no blood test that makes that diagnosis, so all of your previous blood tests for other things would not have been helpful.

Usually the test (a sweat chloride skin test) is done because a person is havi . . .

Ask an Expert: John Heintz MD, Cystic Fibrosis

Rotated Shoulder and Blade Pain

John Heintz MD — Wed, 16 Feb 2011 00:02:00 EST

Question: Hello, My daughter is 23 - she was diagnosed with CF at 13. She has low weight - 115 pounds - should be 125. Has no real interest in food so eating is an issue. She is complaining of severe neck, left shoulder blade pain - has a rotated shoulder. It makes sense why - is there anyone in the CF commun . . .

Answer: Chronic musculoskeletal pain is a major issue for those with CF and deserves attention. CF physicians, however, aren't really equipped to adequately evaluate and treat those problems. They should, however, assure that they have peers to whom they can refer those with pain and musculoskeletal issues. . . .

Ask an Expert: John Heintz MD, Cystic Fibrosis

I�m 30 Years Old Could I Have Cystic Fibrosis

Patricia Joseph MS, MD — Fri, 12 Nov 2010 14:11:00 EST

Question: I am 30 years old and was told that i have sinsus polyps and i have suffered with alot of digestive trouble including colon polyps should I be concerned

Answer: Many things can cause sinus polyps and digestive trouble. Cystic fibrosis (CF) is one disease that can have these symptoms.

It is not impossible for older persons to have mild or atypical symptoms of CF and have a delayed diagnosis. There are reports of CF being diagnosed in patients in . . .

Ask an Expert: Patricia Joseph MS, MD, Cystic Fibrosis

CF, Overweight, Vitamin Deficiency

John Heintz MD — Sun, 13 Jun 2010 00:06:00 EST

Question: I am 33, overweight (five foot tall, almost 200 lbs). I was diagnosed with CF at 3-4 months old. I`m gaining weight like crazy, and having seizures. I`m being told this could be a vitamin deficiency. My question is, if they put me on PEP`s, will my weight continue to raise? Ever heard of anything li . . .

Answer: This sounds like a very difficult problem for you, and I am sure that it is discouraging to both your caregiver team and you. However, this is well beyond the ability to evaluate in a forum like this. I would hope that a variety of specialists such as endocrinologists and gastroenterologists, in add . . .

Ask an Expert: John Heintz MD, Cystic Fibrosis

Chromosome

Steven Strausbaugh MD — Tue, 23 Mar 2010 20:03:00 EST

Question: Can you tell me what chromosome Cystic Fibrosis effects and possible treatments for it?

Answer: Cystic fibrosis does not affect a chromosome. It is a genetic defect of 1 gene on chromosome 7 that causes cystic fibrosis. The gene makes a protein called the cystic fibrosis transmembrane regulator protein or CFTR. Treatment is aimed at decreasing inflammation, fighting infections that are common . . .

Ask an Expert: Steven Strausbaugh MD, Cystic Fibrosis

Could a Sweat Test be Wrong?

Karen McCoy MD — Wed, 10 Mar 2010 05:03:00 EST

Question: My son has had respiratory problems since he was six months old and admitted to hospital several times. He also suffers with greasy bowel movements, bloated tummy and upset tummy on a regular basis and poor growth. He had the sweat test when he was 2-years-old which came back negative. He has also . . .

Answer:

Unfortunately, there is no test that can't be wrong. Particularly, as I am sure you have noticed, your youngster has some features that are commonly seen in CF. It is most appropriate that the test get repeated to be sure he is not missing out on treatments that might help . . .

Ask an Expert: Karen McCoy MD, Cystic Fibrosis

Can you get cystic fibrosis at the age 51?

John Heintz MD — Sat, 27 Feb 2010 02:02:00 EST

Question: I have had chronic sinusitis for a number of years. I have thick sputum, 3 sinus surgeries, each getting worse. After I eat usually cough a thick secretions and salty tastes.

Answer:

We do occasionally see adults diagnosed with CF, and some even later than 40 years old. Usually (though not always) these people have had some degree of problems for much of their life, though usually much milder than those with "classic" CF. < . . .

Ask an Expert: John Heintz MD, Cystic Fibrosis

Should I Consider Testing for CF?

Patricia Joseph MS, MD — Fri, 12 Feb 2010 15:02:00 EST

Question: I have had fatigue for eight years after a long bout with bronchitis. Since then, I received contradictory and inconclusive diagnoses. I noticed more and more mucus/fluids in my nose and ear canals since and have a constant feeling a having something stuck in my throat, which is hard to cough out an . . .

Answer:

Your symptoms are not specific for cystic fibrosis and could describe a wide variety of respiratory processes.

Ask an Expert: Patricia Joseph MS, MD, Cystic Fibrosis

Could I Have CF

John Heintz MD — Wed, 27 Jan 2010 16:01:00 EST

Question: My niece has CF, I am 40. I had double pneumonia dec. 2009, they tell me that it is all gone. I have stabbing pain in my lung area, both sides, shortness of breath, especially when I move around, I cough, sometimes i feel like I need to cough to catch my breath, sometimes I cough so hard I throw up. . . .

Answer: There are quite a few lung diseases that can cause the symptoms you have noted.

Cystic Fibrosis is one disease that can cause this, as are several others of the chronic obstructive pulmonary diseases. Other possibilities include Primary Ciliary Dyskinesis, Alpha 1 ant . . .

Ask an Expert: Patricia Joseph MS, MD, Cystic Fibrosis