Interstitial Lung Disease (arm, cancer, rehab, treatment)

[SouthernBelleInUtah]

Anyone have this? Or a family member? I have just been told that I may have it, and am getting a high-res CT next week and a DLCO.

From what I've just read on some med sites, the prognosis is 4-10 yrs after diagnosis and depending on the type and severity.

Scared shi%less! I was planning on another 20-25 yrs.

[marlene09]

First of all you don't know yet if you have it so let's keep prayers and good thoughts going there. That said, if you do, you don't know how extensive it may or may not be - which is material. At least once you know you can arm yourself and prepare for battle and focus on preventing progression.

I don't know much about this disease and your fear is a natural response. There are medications and treatments under evaluation that are helping delay the progression while the prognosis information you have is based on past data, including times when there weren't as many treatment options. Please take that data with a grain of salt, and try not to let it feed into your psyche. For instance, if you look at AIDS prognosis data, it often may not reflect today's reality now that more drugs are available to manage the condition. The same goes for ALS, Parkinson's, MS and many cancers out there.

So, first things first; find out what's going on then do your best to arm yourself with information so that you can be an active participant in your treatment plan if one is required. I will keep you in my prayers and wish you the best.

[subsound]

I really suggest National Jewish Health in Denver for evaluation and treatment regiment of it, they are number 1 in the country in treating this kind of disorder. There are many different types depending on the underlying cause, some masquerade as others, and many treatments.

[SouthernBelleInUtah]

Thank you both, for encouragement and advice. I cried a lot, starting Friday, but got cried out by Sunday afternoon. My mother has been dead for 5 years - and I am 67! - but I wanted my mother!

I had the DLCo today, nothing to it, and the high-res CT is tomorrow. I did find out that the main hospital of the group I go to has a pulmonary rehab, so that is another option.

[marlene09]

I know you had your CT scan. I hope you are doing okay. Just wanted you to know I am thinking of you.

[SouthernBelleInUtah]

Marlene, thank you so much! They said it would take 2-3 days for my doc to get the report. So, maybe by Fri. I'll know something. I can't tell you how relieved I felt when you told me the comparision between what I had read and how the HIV/AIDS figures have changed. So grateful for the insight!