Diagnosis in sight?

2005CFmom

Super Moderator
Jen,
<br />
<br />My husband was diagnosed with bronchiectasis after our daughter was diagnosed with CF. He developed a severe cough that we could not get under control and was coughing up mucus plugs. His doc did the allergy/asthma route, but treatment didn't help much. He went to an ENT and found out his sinus were FULL of polyps, had them removed. Little to no improvement.
<br />
<br />Still, recently having a daughter diagnosed with CF, and being on CF sites and hearing about adult diagnosis of CF made us want to be sure he does not have CF...so onto the pulmonologists. Lung scans done indicated bronchiectasis, thus his current diagnosis.
<br />
<br />We already knew he was at least a carrier of DDF508, so they preformed a sweat test first. I think it was 18. The doctor was still not convinced that it was not CF so he ordered the Ambry CF Amplified test. He still showed only as a carrier.
<br />
<br />Our daughters CF doctor and nurse were very interested in my husbands case. They set up an appointment for him to see the Adult CF doctor on one of his regular days (not a CF clinic day). He felt (as does my husbands pulmonologist) that although my husband may not have CF, his carrier status could be influencing his symptoms.
<br />
<br />Long story to get to this, his treatment.
<br />
<br />AM
<br />Nebs -Albuterol, Hyper-sal, and Acetylcysteine (Mucomyst)
<br />30 Minute Vest
<br />Advair 500/50
<br />Nasonex
<br />
<br />PM
<br />Nebs - Albuterol, Hyper-Sal, and Pulmozyme
<br />30 Minute Vest
<br />Advair 500/50
<br />Nasonex
<br />
<br />He deals more with inflammation issues rather than infection issues. His go to drug for when he develops his uncontrollable cough is prednisone. Starts at a high dose then tapers down over the next few weeks. Thankfully his treatment regime has been very effective and it has been over a year since he had to take prednisone.
<br />
<br />Let me know if you have any questions. It was a very long process and I'm sure I left a lot of information out.
<br />
<br />Good Luck on your journey!
<br />
<br />P.S. Just some info on sputum test, both he and my daughter culture staph (not MRSA or PA).
 

Melissa75

Administrator
Teri,
Thanks for the thorough description of your husband's regimen. I find it very interesting to read about other's experiences with bronchiectasis.
 

Melissa75

Administrator
Teri,
Thanks for the thorough description of your husband's regimen. I find it very interesting to read about other's experiences with bronchiectasis.
 

Melissa75

Administrator
Teri,
<br />Thanks for the thorough description of your husband's regimen. I find it very interesting to read about other's experiences with bronchiectasis.
 
W

windex125

Guest
I was also dia. back in 1976 when I was 21/22 with bronchiectasis when I had pnemonia at the time, who knew the damage it would create later in life, plus the MAC appeared in 90 so needless to say the right lung is non-functional, make sure you treat the bronc. very forcefully, it will get worse down the road. Since yr. both carriers I think it is important for you both to follow up on and lung issues. Those bacteria's nest and grow and grow without us knowing alot of times, other than a slight cough or nasal congestion, sometimes we tend to blow it off, and say well it's not that bad. Pat-56/CF
 
W

windex125

Guest
I was also dia. back in 1976 when I was 21/22 with bronchiectasis when I had pnemonia at the time, who knew the damage it would create later in life, plus the MAC appeared in 90 so needless to say the right lung is non-functional, make sure you treat the bronc. very forcefully, it will get worse down the road. Since yr. both carriers I think it is important for you both to follow up on and lung issues. Those bacteria's nest and grow and grow without us knowing alot of times, other than a slight cough or nasal congestion, sometimes we tend to blow it off, and say well it's not that bad. Pat-56/CF
 
W

windex125

Guest
I was also dia. back in 1976 when I was 21/22 with bronchiectasis when I had pnemonia at the time, who knew the damage it would create later in life, plus the MAC appeared in 90 so needless to say the right lung is non-functional, make sure you treat the bronc. very forcefully, it will get worse down the road. Since yr. both carriers I think it is important for you both to follow up on and lung issues. Those bacteria's nest and grow and grow without us knowing alot of times, other than a slight cough or nasal congestion, sometimes we tend to blow it off, and say well it's not that bad. Pat-56/CF
 

Nervous1

New member
Hi Jen,

I have bronchiectasis & chronic sinusitis but no CF or PCD. PCD ruled out via biopsy of bronchial cilia during a bronchostomy, and autoimmunce issues ruled out via blood tests.

My treatment plan looks a lot like a CFer's though with regard to the pulmo treatments.

Seretide - 2 puffs twice/day
Nasocort (nasal steroids) - twice/day
Hypertonic Saline - twice/day
Nebulized colistin - twice/day - alternating months
Oral antibiotics 10 days/month - alternating between ofloxin/doxylin

The vest is only available for CFers where I live, so I don't have that. However, I go to pulmonary rehab twice a week when I have time.

Hope you feel better soon!
 

Nervous1

New member
Hi Jen,

I have bronchiectasis & chronic sinusitis but no CF or PCD. PCD ruled out via biopsy of bronchial cilia during a bronchostomy, and autoimmunce issues ruled out via blood tests.

My treatment plan looks a lot like a CFer's though with regard to the pulmo treatments.

Seretide - 2 puffs twice/day
Nasocort (nasal steroids) - twice/day
Hypertonic Saline - twice/day
Nebulized colistin - twice/day - alternating months
Oral antibiotics 10 days/month - alternating between ofloxin/doxylin

The vest is only available for CFers where I live, so I don't have that. However, I go to pulmonary rehab twice a week when I have time.

Hope you feel better soon!
 

Nervous1

New member
Hi Jen,
<br />
<br />I have bronchiectasis & chronic sinusitis but no CF or PCD. PCD ruled out via biopsy of bronchial cilia during a bronchostomy, and autoimmunce issues ruled out via blood tests.
<br />
<br />My treatment plan looks a lot like a CFer's though with regard to the pulmo treatments.
<br />
<br />Seretide - 2 puffs twice/day
<br />Nasocort (nasal steroids) - twice/day
<br />Hypertonic Saline - twice/day
<br />Nebulized colistin - twice/day - alternating months
<br />Oral antibiotics 10 days/month - alternating between ofloxin/doxylin
<br />
<br />The vest is only available for CFers where I live, so I don't have that. However, I go to pulmonary rehab twice a week when I have time.
<br />
<br />Hope you feel better soon!
 
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