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Old 03-08-2004, 10:19 AM   #1
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jleigh HB User
Is it possible to have CF and still have normal spirometry?

Since getting diagnosed 2 years ago (I am 33, almost 34) I have had more problems than not. (Diagnosis: Bronchiectasis was found on CT after I came down with a bi-lobar pneumonia and I was genetically tested and found one copy of DF508 & a low/borderline sweat chloride test.) I have cultured staph, pseudomonas and stenotrophomonas maltophilia w/infections and had 3 episodes of hemoptysis in the last 5 months. I have had varying degress of chest pain, as well as dyspnea during this time. My spirometry however is completely normal...FVC 109%, FEV1 100%, FEV1/FVC 91%, FEF 25-75% 76%. I just think it is strange that I could have normal lung function, yet have all of these problems. (but hey, I am NOT knocking it!!) Have any of you heard of or known others who were diagnosed in adulthood to have normal spirometry?

Thanks,
jleigh

 
Old 03-08-2004, 11:47 AM   #2
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deanna0604 HB User
Re: Is it possible to have CF and still have normal spirometry?

Quote:
Originally Posted by jleigh
Since getting diagnosed 2 years ago (I am 33, almost 34) I have had more problems than not. (Diagnosis: Bronchiectasis was found on CT after I came down with a bi-lobar pneumonia and I was genetically tested and found one copy of DF508 & a low/borderline sweat chloride test.) I have cultured staph, pseudomonas and stenotrophomonas maltophilia w/infections and had 3 episodes of hemoptysis in the last 5 months. I have had varying degress of chest pain, as well as dyspnea during this time. My spirometry however is completely normal...FVC 109%, FEV1 100%, FEV1/FVC 91%, FEF 25-75% 76%. I just think it is strange that I could have normal lung function, yet have all of these problems. (but hey, I am NOT knocking it!!) Have any of you heard of or known others who were diagnosed in adulthood to have normal spirometry?

Thanks,
jleigh
Hi jleigh,
Did your genetics test state that you had a mutated gene also or just one copy of DF508 and that's it? My daughter's cf clinic drs were explaining variant cf to me: where the sweat chloride is borderline and I think one cf gene & 1 mutated, unidentifiable gene. Lung function is not as low as a person w/ 2 cf genes. Her pulmo. said that he diagnosed a man at 48 years old w/ variant cf & I hear that its not all that uncommon for someone w/ variant cf to be diagnosed at a later age. What meds are you taking?

-Deanna

Last edited by deanna0604; 03-08-2004 at 11:48 AM. Reason: typo

 
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Old 03-08-2004, 12:10 PM   #3
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jleigh HB User
Re: Is it possible to have CF and still have normal spirometry?

Quote:
Originally Posted by deanna0604
Hi jleigh,
Did your genetics test state that you had a mutated gene also or just one copy of DF508 and that's it? My daughter's cf clinic drs were explaining variant cf to me: where the sweat chloride is borderline and I think one cf gene & 1 mutated, unidentifiable gene. Lung function is not as low as a person w/ 2 cf genes. Her pulmo. said that he diagnosed a man at 48 years old w/ variant cf & I hear that its not all that uncommon for someone w/ variant cf to be diagnosed at a later age. What meds are you taking?

-Deanna
Hi Deanna,

You know, I am unsure what else if anything the genetics test came up with. I do plan to get the Ambry genetics test run soon, so hopefully that will tell me more. I am currently on Pulmozyme & I do take enzymes for mild PI (Ultrase 18MT and Pancrecarb 8) I am also on Flonase for sinuses and Nexium for GERD.

Thanks for replying!

jleigh

 
Old 03-30-2005, 05:43 AM   #4
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Join Date: Mar 2005
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ejaffe HB User
Re: Is it possible to have CF and still have normal spirometry?

my newborn son was just diagnosed with cf i donot know the degrees of it yet.We meet with the specialist today.But for the past week my husband has been coughing up blood he has'nt had a cold he just has spells and he has always had stomach problems he's on nexuim and constantly taking antiacids he is 28.He has went to the doctor who referred him to a pulomonary specialist.Alot of the cf stuff i read talks about hemoptysis in advanced stages.Does anyone know about adults being undiagnosed with this?

 
Old 03-30-2005, 08:45 AM   #5
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jleigh HB User
Re: Is it possible to have CF and still have normal spirometry?

Yes, it is very possible that adults can go undiagnosed for many years. However in your husband's case, I'm not sure (since you have a child) because 95% of men with CF have CBAVD (Congenital Bilateral Absence of the Vas Deferens). The vas deferens transports sperm from the testes to the urethra, to be ejaculated with the semen. Therefore, men with CBAVD are sterile. It is very difficult to replace or transplant, because it is a tube that has an essential function of contracting to propulse the sperm to the urethra. (info from ********) There is always that chance he could have CF (atypical or variant) and be in that 5% population who does not have CBAVD. It is defintely worth checking into and talking to a doctor about.

Since my post a year ago, I have had genetic testing through Ambry Genetics and I was found to have along with one copy of DF508, 5T TG12/9T and M470V which in combination, has been shown in studies to cause atypical CF with sinopulmonary disease and sometimes Pancreatic insufficiency. I have mild PI, but have chronic GI issues...bloating, constipation, GI pain, etc. I also have GERD, sinusitis and joint pain problems. My lung function has declined over the past year...still good but there has been a decline (last appt in Feb '05, it was FEV1 94%, FVC 105%, FEV1/FVC 90% and FEF25-75% 68%) and I am still colonized with stenotrophomonas maltophilia.

I hope you are able to get the info you need regarding both your new baby and your husband. Keep us posted!!

Best Regards,
jleigh

 
Old 08-28-2005, 05:23 AM   #6
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blouis HB User
Re: Is it possible to have CF and still have normal spirometry?

I wouldn't consider an FEF 25-75 of 75% to be normal. It is not too bad but is not normal.

 
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