More than COPD

Pulmonary Langerhans Cell Histiocytosis
Rare (Interstitial Lung Disease)
https://www.histio.org/page.aspx?pid=383

3/31/2015 Respiratory Failure Sats 79%
4/06/2015 Open Lung Biopsy
4/09/2015 Recovery (Complications Re-incubated).
4/16/2015 Released from Hospital,with 24/7 Oxygen. Sats 97% 2% Oxygen @ Rest 3% w/exertion.

On 4/01/2015 My X rays turned up many issues; Scar tissue and holes along with dark spots. I had to have a lung biopsy to be sure what was going on...a routine procedure I was told, not for me, I was revived twice during the procedure and ended up in ICU. I didn't know what happen, apparently my lungs are of tissue paper and purple, I couldn't leave until I was stable...I had no clue that I may not be going home, but I assumed all this was normal for a lung biopsy so I didn't worry....I was taken off the machines and went into respiratory failure once again, the feeling of having a lung collapse was excruciating to say the least, I grabbed the doctor's shirt and demanded re-incubation! Whilst on my 7th day in.(I was told a 3 day stay for this routine procedure) I was there 14 total.

At home, I am on a 50 ft tube from my nose cannula to a machine in which I can get around but when I go out I use a 3LB cylinder type tank of Oxygen, on a little two wheeled handled pole, Doctors would like me to have a double lung transplant, why I am now legally disabled and on SSD. However, considering the shape of my lungs, I do not think I may make it off the table!

So I believe in quality not quantity, so this will be long and slow. Best case scenario with new lungs; Live another year or 5 (Which requires you in and out of the hospital on anti- rejection medications) IF the new lungs are not rejected, no real guarantees! So a one time shot there. Some have done great for 5-15 yrs, (but my case is the worst they have seen, 5 yrs is pushing it). Others like me, who refuse, my live up to 2-5. I have made my choice.

Current CO2 Stats 97% with tube. Then there is the matter of your heart, it has to work harder also when you can't breath normally, which is my current issue this year, CHF, Left Ventricle.

Now being oxygen dependent... Adjusting has been a real drag. So many doctor appointments and frustration, I have become a hermit, depression and anxiety have taken over.

2016
So far.... I am at 3% Oxygen dependent usage @ rest and 4% @ Exertion. This disease is Progressive and is cancer -like, However it is very s l o w. I have been taking steroids vitamin D Zoloft Xanax Prilosec and lasix as well as aldectone (water pill 2). I play on the computer and watch movies. I do some stretching and nap a few hours a day, walking distances are limited, on a good day I can shop but have to sit every other isle, the motorized chair is awesome but not in reaching. I feel useless and lost if I overthink my situation, otherwise I try to do things I have put off while always working...however I miss the social aspect to no end...

I hope I am in the right place to chat, as I am sure COPD isn't any more fun.

Thanks for reading,

Blessings, Rene'