Fighting for LungFunction

[Rickengelage]

Hey everyone,

Im 20 from the netherlands, male

I always used to have good lungfunction 90%+
Though at times it would drop and i would get anti biotics and it would recover.

Im just out of the hospital.
I been there for three weeks.
Because my lungsfunction was dropping since half a year ago.
It went up, and back down for a while, back and foward.
But then in dec- jan.
It dropped.
And didnt go up, they kept giving usual treatment but it kept dropping,
Then end febuari, it had drop to lowest point of 52%

After three weeks in hospital, its now at 59%.

Im infected with a multi resistant B. Cepacia

Does anyone know any treatmet for this to recover my lungfunction to 90%?

Anyone with expierence of recovering from a huge drop? Is it even possible??

If u have expierenced recovering from huge lungfunction drops, please share your story, give some advice
Or if u know treatment for b.cepacia i could try.

Anyone who know more about in how far its even possible to recover from a huge drop like that, please share.

Thanks.

 

[static]

Tough one.

My largest lung function increases were after hospital stays as well.

With lung function you have to keep in mind two things, the clogging/ blocking of the airways and lung scarring.

Once you get an infection both of these occur, however hospital stays (if they are long enough) generally does a pretty good job at cleaning up the clogging aspect. What's left is scaring, and unfortunately that's permanent.

My advice for you is to develop and exercise routine. Exercise can expand your lungs and make your cells function more efficiently.

It sucks but we can always hold out hope that one day they will find ways to repair lung function, and of course there is always the lung transplant options. You may have a ways to go yet though before considering that.

 

[jaimers]

I don't have any helpful advice about the cepacia but agree with static that exercise would be very beneficial for you. Being totally compliant with your daily treatment regimen will also help. Www.runsickboyrun.com is a great blog that has lots of info about exercise. There is also a forum on this site all about exercise that you may get some good ideas from as well. Just remember if you haven't been exercising up until now to take it slow to start and build up your endurance and exercise tolerance. Good luck!

 

[believingjesus]

Please anyone who can share any treatments for cepacia are so appreciated! Anything that works and your experience please. He is trying to find treatments to share with his doctor in the Netherlands. This is a remarkable and amazing young man who is full of life and is such a blessing to know.

 

[Aboveallislove]

I'd push for doctors to consider Cystagon. Read up on the studies underway and published for use for cf.

 

[believingjesus]

Thank you AboveAll. I had asked about Lynovex about a week ago as I saw it in the Forums. I looks like that is what Cystagon is? It didn't look like that treatment is available yet? If the doctor would let you try that Rick it might be very beneficial as it can break the biofilm cepacia creates around itself and maybe that would let the antibiotics work. I appreciate that AboveAll!

 

[Aboveallislove]

That is the renamed cystagon being tested for cf. It would be off label use but Cystagon is available and has been for twenty years or so and has a very safe profile.