Bronchus/bronchiole/pulmonary infection and residual damage

[Palmyra]

Hello to the group! This question is regarding a friend that I have made on a parents support web page. Her dear son was diagnosed about 6 years ago (he is now about 22 years old,) and has primary pulmonary involvement. He has been seen at the Cleveland Clinic by Langford, et al.

He has been enduring frequent bouts of very severe pneumonia and bronchial infections, from fungal to bacterial over the last 5 years. He has been on cyclo/pred but is now keeping the Weg dog at bay with RTX. He has taken IVIG and seen an infectious disease specialist in efforts to prevent secondary infection. The problem appears to be that his bronchus and bronchiole tubes are so badly damaged from previous infection, and he now only has his 2 left lobes remaining. Quite the bad news scenario to bring to the general forum. They have been screened for a lung transplant, but he is not a candidate due to the poor quality of the bronchiole tubes.

Any one with experience in a similar situation?

Many thanks in advance,

Jane, mom to Alison

[Al]

Aiyee, Jane, this really sucks. I sincerel hope that no one else in the future of the earth has to go through this. It does sound like these infections are the result of the downside of immunosuppressive therapy. But in all cases it is a truly raw and crappy deal. I wish I could give you usable advice, but I can't think of anything at the moment. But please let us know how this works out.

Al

[Sangye]

Oh my gosh, what a terrible thing, especially considering how young he is. :sad:

[pberggren1]

Oh my goodness!!! I can't imagine being in that situation. It is absolutely terrifying. I have had repeated lung infections over the past 2 years but nothing that serious. I am very thankful that I can still get around and breath half way normal.

[Palmyra]

Sadly, I do not think there are any good answers to this one. He is to be released from the ICU/hospital soon, but there is not much good news in the prognosis. Today's culture was positive for several different resistant organisms.

[Sangye]

Do you know his name, Jane? If you don't want to post it, please PM it to me. I'd like to add him to my prayer list.

[Palmyra]

I know his Mom would not mind...his name is David. He has been through so very much, as has his entire family. Thank you so very much Sangye. One can only imagine how it feels to have a child so very ill with this disease. They live day to day.

[Sangye]

Thanks Jane.

[drz]

Things like David's sad story remind us vividly that when we think we are having a bad day or tough time that someone somewhere is having a much worse time. It makes me sad that is so much suffering and happy when someone recovers from a bad ordeal. We hope for a miracle recovery for David.