Pulmonary Rehabilitation

[Red-head44]

I have GPA [5 yrs] and my specialist referred me to the Pulmonary team to see if they could help with my breathlessness, and I promised to report back here to let you know how I had got on as some had asked for me to.

I had 6 weeks of 5 different exercises to do and keep a tally of how my breathing was during each one. I did get better in that I eventually could do all the 5 one after the other without stopping and breathing only slightly raised, however, it hasn't helped at all with longer walking - I still can't walk very far at all without getting out of breath - perhaps this is because my village is on a steep hill so I always have to go down but then come back up either the same hill or a different one on my return journey. I'm much better on the flat. I think it would help people that couldn't get out the chair very easily and/or just at the start of their recovery journey.

[egre]

I’m just wondering if you have inhalers.

I also have GPA (4yr). Initially the respiratory team did not want to get involved and it took a relapse and the rhuemy to request a second opinion respiratory consultant to get involved. I was then prescribed Fostair (steroid based) and Sebri inhalers. Sometime later 2 years in I was shown breathing exercises (breath of life). I had right middle lobe lung collapse and bronchiestisis when diagnosed. Now the scans show much improvement. However I am still out of breath walking on the flat and a lot on any hills. I don’t think this will go away and like everything else have to adjust to it. I wouldn’t be too hard on yourself. Despite everything things are better than they were.

[michichgo]

Thanks, Red, this is a helpful tip and one I think I need to follow-up on.

I've had MPA for 7+ years and I don't recall what method(s) have been used to image my lunhs. I really, really, really struggle with shortness of breath and my stamina over the past few years has suffered, significantly.

I'll raise the issue with my nephrologist and ask her to make a recommendation. Here in the States, coordinated care amongst specialists is lacking.

Stay strong and healthy!

Michele