Update on pberggren

[pberggren1]

Thanks so much Beverly. I'm sure a few more massages and getting back to regular stretching will improve my muscles. But unfortunately for now my breathing is probably as good as it will get. I really don't have much hope that the respiratory therapy I will do will have much benefit at all. But only time will tell, so I just have to take one day at a time.

[windchime]

Phil, are your intercostal muscles (between the ribs) very sore? If they're tight it could restrict air flow. Mine are often exquisitely tender. Just a thought.

[pberggren1]

No, they are not sore anymore thankfully.

[LisaT]

Phil, are your intercostal muscles (between the ribs) very sore? If they're tight it could restrict air flow. Mine are often exquisitely tender. Just a thought.

Is what you're describing costochondritis or are they two different things? I've had costochindritis before and it is very painful. Phil, I get sore after massages too. A warm bath with Epsom salts before bed helps. The salts also allow you to absorb magnesium which relaxes muscles. Sleep tight!

[pberggren1]

Thanks Lisa. I had 2 baths like that yesterday and 2 today already as well. I will have another one again later on. I find they help a bit.

[Alysia]

But unfortunately for now my breathing is probably as good as it will get. I really don't have much hope that the respiratory therapy I will do will have much benefit at all. But only time will tell, so I just have to take one day at a time.

no, sweetie, never give up hope to breath better.
respiratory thearapy is recommanded and prob can help and/ or other ways of treatment.

please check the folowing links:

New advances in the therapy of non-cystic fibrosis bronchiectasis

Azithromycin for prevention of exacerbations in non-cystic fibrosis bronchiectasis (EMBRACE): a randomised, double-blind, placebo-controlled trial : The Lancet

in the followong link there is evidence for a device that can help to clear the airways:
: Triangle Wave, Waveform | Effective Clearance | inCourage® Airway Clearance Therapy
it looks nice in this video:
https://www.causes.com/causes/660769...e-vest-therapy

and last one for now, is a national pride for me: a new med which was developed in Israel, in a Kibutz where I have an uncle and family. this is it:
: Glassia - Kamada
The explanation is this: in some cases there is a deficiency of Alpha -1 Antitrypsin which destroys the lung tissues. In order to know if you have that deficiency, you need to do 2 blood tests: 1. To find if you have that deficiency. 2. To see if it is genetical.
Now, if it is genetical, then the med that is in that link, is already approved by the FDA for use. If it is not genetical, the med is in experimental use still. but might help as well.
there is a connection between that defieciency and wg, like in this link for example:
Wegener's granulomatosis and alpha1-antitrypsin-defici... [Chest. 1999] - PubMed - NCBI

now you have an organized list to ask your WG doc and your lung doc about.
I wonder is someone around knows more about those options...

[mishb]

Alysia, has anyone told you lately that you are AWESOME
These links are a wonderful find

[pberggren1]

Thanks so much my love. You are definitely my sweetie pie.

[LisaT]

Alysia, you are brilliant in addition to being sweet and kind and funny. We are all fortunate to have you on our side!!! ...and why is there no emoticon blowing a kiss? I'm relieved to hear all of these possibilities exist for you, Phil.

[pberggren1]

I am definitely in love with you Alysia.