For those who you diagnosed with constrictive bronchiolitis how long have u had it?

[daniellegagne22]

For those of u with constrictive bronchiolitis ...how long have u had it for?....and how do you maintain it?

[Katinka46]

Hello Danielle

I got it as a result of PEs eight years ago. But although there was evidence that I had lung disease it was not until last December that I got a diagnosis. I knew that I had it years back and my consultants were pretty sure about it but we had to wait for a firm dx from the Royal Brompton Hospital. The progression is very slow in my case. I recently had a

PFT and there is a worsening in lung function but only a little down on the previous one. I have genuine exercise intolerance, I really, really can’t do much. I become very SOB on the slightest exertion and my heart rate shoots up. Exercise tests are stopped very early on and I was told by a physio to stop when my SOB reaches 5 on the Borg scale. I believe that this is down to the other problem in my lungs which is Chronic Thromboembolic Disease which can cause pulmonary hypertension. The jury is still out on whether or not I have it. I think I do.

I don’t know whether that helps you or not.

All the best

Kate xx

[Caspiana]

Hi Danielle.

Officially, I've had it for four years. But I think I may have had it a long time before I was diagnosed with it. Just a guess though. I hope your sister is stable now.

*HUGE hug* 🌸

Cas xx 🙋🐕

[Buff56]

I was diagnosed about 5 years ago with mild symptoms of shortness of breath. It has progressed to more severe shortness of breath and at times I use oxygen for walking distances. It has impacted my quality of life quite a bit as my lung function is about 27% predicted (normal). I have been refused for any transplant programs. I take advair inhaler, respimat inhaler, montelukast, zithromycin 3 times a week, and I have done pulmonary rehab a few times (as insurance allows). I take prednisone and Jakafi to prevent inflammation due to graft vs host disease. I try and stay as active as I can but my activities are very limited.