[zoesmom]

I am currently in the middle of a fairly long lasting flair up. And it sucks. And I hate predisone. I ALWAYS gain on the junk. I can not exercise when I have a flair up. I feel like I can't breathe. I feel like my lungs are balloons that have a on hold in them and no matter how much I fill them up, they never get full. I have asthma. I have ARDS. I never thought I would say this, but I prefer the asthma attacks.

I was diagnosed last August after my O2 sats dropped to 42 and I spent a good chunk of time in ICU. My daughter, then three, had Strep B and had given it to me. Being an asthmatic, things like to go all crazy when they get to me and it quickly turned to streptococcus pneumoniae. I ended up with severe blockages in my lungs and scarred the majority of my left lung. I had no air movement in both upper and middle lobes and in the left lower lobe. I was told I had carbon dioxide posioning due to the blockages. I later developed a fungal infection and viral infection while in the hospital. My then kid found me more or less in a coma and somehow had managed to drag my then 293 pound frame out of the bed. By the time she managed to wake me, she had been bawling her eyes out for who knows how long. To this day, she still gets scared if I fall asleep. I came home sometime in late August, early September and remained on an O2 tank up until November. I was told that the majority of people with ARDS make a full recovery and the first year is the time frame to know if you will be one of those people. I am not one of those. My doctors tired to push for me to file disability. I was told that I would likely not have any real quality of life. And I was told I would likely be on the O2 tank the rest of my life. I was 29 at the time and REFUSED to hear that my life was over and REFUSED to let my kid find me like that again, so I started making changes. My asthma went from moderate to severe because of how sick I was. I now cough up castings more often that not, something I never did pre-August 2012. I still have an O2 tank in my house. I have flair ups probably once every 8-12 weeks. And those flair ups tend to last about 3-4 weeks before I return to "normal". But I refuse to let it rule my life. When I am feeling well, I run. I lift weights. I play with my kid. I do everything I can to live my life to the fullest. Predisone ALWAYS sets me back. I usually end up with a 5-10 pound gain and I am ALWAYS on the junk for at least 2 weeks, sometimes longer. SO, my weight loss is fun trying to explain to people. First, I exercise, so that slows me down. Second, I take medications on ocassion that makes weightloss hard, if not impossible at times. But, I AM losing. Even if it IS slower than what many people would like.

But then, when these flair ups do happen...I just want to cry. It is so hard to feel motivated when you can't do anything. When you are passing out as your O2 sats drop. I have looked all over and have found that either people don't talk about it...or I am in the very small minority of folks who continues to have issues. Surely I am not the only one. Please tell me someone else is going through this too. I need support from someone who gets it...and I just can't seem to find anyone.

[Kaitie9399]

I'm sorry you're having to go through this. I don't have ARDS but I do have a major case of asthma--which is acting up a lot these past few days.

Try to stay positive--your discomfort will pass soon. :-)

[hopebewild]

Ards stands for acute respiratory distress syndrome. Anything acute comes on strong and fast and doesn't last long. Long is of course a relative term. But a year? You have a chronic disease that needs a new name dear. You are seeing a pulmonologist right? I really feel for u because I have seen first hand how deadly and debilitating lung disease can be. Because of ards you might have pulmonary fibrosis and or pulmonary hypertension. Those are the two that came to mind right away when I read ur post.

Stay strong!

[zoesmom]

Correct, I am seeing a pulmonolgist. I see him every 4 weeks currently. Have been since August 13, 2012 (oh lord, tomorrow makes a year!) He still stands by his diagnosis of ARDS but I do know he has recently made mention of getting more tests in sometime in the near future. I have spent more time than I care to admit to searching the internet for lung diseases and how they relate to me, so I am at the point that I am just going to wait for the tests and the results. No need to scare myself more At least, I can breathe again after several weeks of not being able to. That's nice. Thank you for your input though. I see him again in about 3 weeks, so I will have to being both those up to him and see what he says.

[zoesmom]

My doctor just sent me an email with THIS LINK. His only words to me where "I know it is a long hard battle, but know that you are beating the odds." I opened the link and cried my eyes out. I AM beating the odds! I knew it was a wretched diagnosis, I knew that I would ahve issues the rest of my life, but I really did not know that even though I am one of the few who hasn't had a full recovery, I also not of the majority who had their life completely taken from them. I was told a year ago (OMG! August 13th was TWO DAYS AGO!!!!) I needed to file disability. I was told to expect this life, the life of nothing. And here I am today, beating the odds. I have set backs. I have issues. I have gains due to medications. I have weeks where I am unable to be active. I have the possibility of having a very premature life. But regardless, I AM beating the odds. It's really nice knowing that. It's nice to be reminded of that. It's nice to know, I am not alone.

[hopebewild]

I read that link and all I can say is wow that was interesting. I guess working where I work I pretty much see the patients where they are at the point of either living or dying so just getting them strong enough to go to rehab is to me the conclusion of the illness. Very eye opening on what ards patients struggle with longterm. Thanks for the link!

[kaplods]

I do not have ARDS, but I have multiple health issues, such as fibromyalgia, arthritis, ibs, sleep apnea, asthma, copd, and an autoimmune disease that was attacking my nasal cartilage, lungs, joints, and skin.

I also periodically have to deal with prednisone, but have been very, very lucky to have discovered that NSAID drugs were dramatically impairing my lung function. I've been off the NSAIDS for about 5 years, I think, and my lungs have been slowly healing.

I have lung scarring that may be permanent, but since I stopped all NSAIDs, the damage has slowed, and at some times was even stopped and reversing... Initially, we thought I was in remission, but just when I thought it was gone, it has reared it's ugly head again, but not anything like when I was on the NSAIDs. Just enough to know the beastie is still there.

I don't get the extreme "elephant sitting on my chest" year-round bronchitis anymore, and can sleep normally in a normal bed.

At my worst, hubby and I needed separate bedrooms because he couldn't sleep with the gurgling noises I made and the set-up I needed to keep from drowning in my sleep. In addition to the cpap, I had to use car jacks to raise the head of my bed about a foot higher than the foot. The mattress was strapped to the frame so it wouldn't slide off the bed, and hubby would tuck me in tightly so that I wouldn't slide off the bed. If I got up to go potty, I'd have to wake hubby to tuck me back in. Even so, by morning, I would wake having slid to the bottom of the bed, my feet sliding towards, if not actually on the floor (I am not exaggerating).

If I could have found a way to sleep standing up, I would have considered it.

My lungs are in much better shape now, but for a while it was pretty scary.

[Lolo70]

I assume they will test you using microbial cultures. You should also have your antibodies tested, i.e. your IgEs. It would help to know what triggers your flares. Maybe write everything down for 6 months or so. If it is as periodic as you say, it may correspond to a bug's life cycle from spore to fully developed.

If you have carpets, they can host a variety of guests. Same with air conditioners. I know COPD has been linked to Aspergillus. An air purification system my help. When I had my mystery "allergies", I had one that filtered everything including chemicals. I also had to purchase a vapor cleaner and sterilize the house every couple of weeks.

Look around for self help groups or local chapters of the American Lung Association or similar. Is your physician associated with an university hospital? If not maybe get a second opinion. Most importantly, educate yourself about lung disease. You already do that, but look out for primary literature in Pubmed. Google your symptoms and read into the diseases that come up. It may be hard in the beginning, but sometimes with chronic diseases it is up to you. Doctors will only treat symptoms. It is less risky (law suits), easier, and better business. Plus, they often see too many patients to really be able to care too much.