Seeking answers

[Mahod]

Hi, 66 and diagnosed with Primary Immune Dificiency in past 18 months while in hospital for pnemonia. Fast forward, several more pneumonias, repeated bronchitis and now dx with, asthma, mild bronchiectasis and COPD. On IVIG infusions for immune disease, now bumped up to nebulizer 2 x day- budesonide and perforomist. Atrovent for rescue as needed between and singular pm. I want to learn more about how to stay well, improve lung function. Regain my energy and life. Suggestions??

[corkie65]

Hi Mahod trying to repair you lungs is not easy I have end stage COPD asthma and infazema I also are on Nebulizer treatments and the DR told me there is no way to fix the problem I am 71 years old I even stop smoking think it would help but that did not help I am also on oxygen 24/7 there is no cure for COPD is what J was told but try to stay away from anyone that is sick every time I get by anyone that is stick I end up on the hospital I wish you all the luck in the world

[clare86 in reply to corkie65]

Hi,

You can't repair the damage done to your lungs, but you can help yourself.

I find one of the key things is exercise. It doesn't matter if you start with very little, bit just slowly build it up. Perhaps your GP could refer you to the PARIS scheme?

People have this false image that you have to be able to run 10k, cycle 5k and lift heavy weights to go to the gym, you don't.

With medIcation your doctors can only decide what you need.

[Mahod Asthma Captain in reply to clare86]

Hi Clare,

Yes, I agree fully!! Think I have been trying too hard to be back to "me"...hours in gardens, on tractor, digging, in woods, working, doing it all. It changed so quickly and yet crept up subtly.

I need to find that "balance" acceptance. It's tough when I keep fighting new infections and doc's are working to improve treatment to meet current needs.

I think it just really sank in to my stubborn, I can push past this, brain- that I need to find the exercise/ activity balance without triggering bout.

What is PARIS scheme??

Thank you for responding. I'm not alone in the desire to stay on top of this.

Mary

[clare86 in reply to Mahod]

I was the same overdoing things md took me years to find a balance. I still now over do it now and then.

PARiS is a go referral scheme to a local participating gym who develop a personalised exercise programme over a few weeks.

[Mahod Asthma Captain in reply to clare86]

Thank you. I looked up the PARIS scheme. Love the full approach!

May I ask where you live? I don't think it's available in US.

[clare86 in reply to Mahod]

Hi, yes I'm in the UK. Didn't realise you were from US.

[Mahod Asthma Captain in reply to clare86]

No worries. Helps me look for something similar here.

[Mahod Asthma Captain in reply to corkie65]

Thank you Corkie! I have never smoked, but lived with Second hand smoke. I understand your frustration. Lack of control over our bodies is just hard to accept.

I am trying to prevent repeat infections that continue to do damage.

I truly appreciate you responding. Don't feel so alone in this.

Sending prayers and thanks!!

Mary

[corkie65 in reply to Mahod]

Hi Mahod its very difficault to live with I take so many Neb treatments in a day that I dont have time for much else I also am on oxygen 24/7 I am also a amputee so things dont always go the way you want them to I have been house bound for about a year now when I go out and its to hot it trigers attacks or when its to go in the cold the same thing happens but at least I am still alive and kicking that I can be thankful for the Dr say I am to old for a lund transplant and to many other problems so I just find thinks to keep me busy all day long if ever you feel like talking just post I will get back to you have a good day

[Mahod Asthma Captain in reply to corkie65]

Thanks. I am so sorry to hear all you have to struggle with. It isn't easy. Been housebound for months at a time. Absolutely not fun. But you're right. Finding new pleasures that are fulfilling is a great Outlook. Take care. Mary