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Hi Ronald,


I must admit that I haven't noticed my breathing to be any faster (in the beginning I had a shortage of breath.)


I was able to go for a slightly more strenuous walk uphill today (hips are improving) and although I'm not nearly as fit as I once was, I didn't feel that my breathing was any more laboured than before my operation, despite my having to cease the immunosuppressants for a period of about six weeks.


Kind regards,

Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Does anyone one here experience shortness of breath with their lung involvement?  Mine just started about 2 weeks ago.  It started after a nasty flu bug, once the flu was gone, I ended up with shortage of breath. 

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Hi Ronald,


I've had shortness of breath on exertion for over 20 years now. By the time my lung involvement was caught, I already had fibrosis on the bases of both lungs. Since the damage was already done, and the inflammation over with, I didn't need any treatment for it.


My lung function is still very good, as in, I certainly don't need oxygen. However I also get short of breath very easily, usually even walking at a normal pace on flat ground for a bit. The solution, in my case, is to just move slower and to stop and catch my breath as needed. Which is miles above needing to use oxygen, or being incapacitated.


It can take awhile to really recuperate from any lung infection, so you can probably expect a little more improvement as you regain your endurance. Sometimes its not the lungs alone, but the heart and lungs working together, and being out of shape (which occurs very quickly, within a week or two of not exercising) exacerbates it. 


If your doctor allows it, try to do just a tiny bit more every day. Like, moseying for one minute more on each walk. Try to keep a steady pace that doesn't leave you gasping for air, which is likely a lot slower than you are used to. What I like about this plan for improving endurance is that it leaves me feeling a sense of accomplishment, but also doesn't exhaust me or land me back in bed. And it is amazing how fast those tiny little minutes can add up, over the course of a month.  Gradually, you might notice a bit of improvement because your heart and lungs and muscles are starting to coordinate their efforts better, as you recover.


You won't "recover" from scleroderma, of course, but you likely have a ways to go before you are really recovered from the flu. It can knock the socks of folks, and it can even take healthy people a long time before their functioning is really back to normal.  So please have patience with your recovery.


Basically, you are not alone, even though each and every one of us has a different path and experience with this highly individualized disease.



Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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Hi Shelley,


I went out and bought one of those meters for O2. But this thing is screwed up. Its giving me readings like O2 81% and pulse rate of 205. I continue and it still spits out strange numbers. I paid 80 dollars for it and I am going to return it. Every time I have been in the hospital or ambulance, they have always had a hard time getting readings from my fingers, most likely due to the poor circulation. They have sometimes used my ear lobe for readings.

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