Trouble Breathing?

[Allisonquast]

Ok so no one has told us why my husband cannot breath - they tested his lungs and they were fine so what causes this? A few stairs and he is pale and breathless.

His wegs was diagnosed via a lung biopsy.

[Dirty Don]

Not sure what you mean by 'testing' his lungs. Any nodules left or early damage may cause breathlessness. The drugs can do it too if not properly dosed. I would suggest that it's the WG...I mean fatigue...it's part of the whole spiel. Also, make sure the lung test was a PFT...cuz other tests may not 'see' the damage done as well.

[pwc51]

Sounds like active WG still - I was quite fit before I was diagnosed but by the time I was diagnosed I could not climb a flight of stairs without getting breathless. A scan showed nodules / scars on the lungs. As soon as I started treatment I started walking again. Initially I walked for 15 mins per day but over the next few weeks I pushed it to an hour a day with hills. The breathlessness was largely gone thank gooodness! One I resumed work full time after 6 months I missed my daily walk and have ended up doing a little at weekends.

[Pete]

Wegs has left me with a bit of exercise-induced asthma. If I overdo, I get wheezy and a bit short of breath.

[annekat]

I also had lung involvement and a lot of breathlessness. Although the progress of the disease in my lungs was stopped by the meds, and healing began, it took a few months for the breathlessness to improve. I feel like my lungs are fine now, and my breathing function tests are not bad, but it may never be as before because of permanent scarring. In addition, there can be breathlessness and coughing indefinitely because of sinus discharge dripping down and collecting in the bronchial tubes and obstructing them, and it can take awhile to cough that up; once I do, the breathing improves immediately. So I would say what your husband is going through is normal and he should notice some dramatic improvement over time. I had trouble climbing stairs, too, but after probably six months of treatment, it became easier, and more and more so with time, until now I can climb them normally. But if I were attempt a really long flight of them.... well, that remains to be seen.

[Debbie C]

I too have lung involvement, in fact I'm going in the a.m. to get a ct of my lungs which they didn't report on last week,so I'll see what's up. I still get breathless also. I was walking the mall the other day and had to stop 3 times to try to catch my breath.
Has your hubby ever had any heart issues ?

[pberggren1]

Could be like me and have scar tissue in the bronchials. Or maybe tracheal stenosis of some kind.

[Allisonquast]

Thanks all. I'm not sure which lung tests he had I just assumed a lung function. We have sons with asthma so I made that assumption.
I guess we will just have to see what happens after this first course of drugs. He was diagnosed within six weeks of symptoms so hoping that there is no lung scarring.

[pberggren1]

When did the onset first begin for Colin? What are his onset symptoms and current symptoms? What meds is he on?

[annekat]

Thanks all. I'm not sure which lung tests he had I just assumed a lung function. We have sons with asthma so I made that assumption.
I guess we will just have to see what happens after this first course of drugs. He was diagnosed within six weeks of symptoms so hoping that there is no lung scarring.

Although I had had sinus involvement for a couple years before my dx, I was diagnosed within three months of my lung involvement, and within 6 weeks of my really bad lung symptoms. What scarring I have is pretty minimal, I think, as the doc hasn't bothered with a chest xray or CT scan in a long time. I may always have a bit less lung function than before, but I'm generally able to do moderately strenuous things like yardwork without having to stop and rest much. Your husband being dx'ed when he was is a very good thing and bodes well for him being able to do the things he could do before. Like skiing, if I remember right and haven't mixed you up with someone else!