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Question For Those With Lung Involvement

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Anybody on oxygen? Here's a barrage of questions for you:


At what point or how bad off were you before you went on oxygen?


Did your doctor insist on it or did you ask for it?


Are you on it all of the time? If not, when do you need it most?


How is life better for you on oxy?


How is life worse for you on oxy? (is it a pain in the rear?)


Did your family/friends treat you differently when they first saw that you had to have oxy? If so, how?


Do you get stares in public? If so, how does it make you feel?


That's all for now. Thank you very much for your time.

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I was on oxygen for 4 months after I was diagnosed and hospitalized. I was on it 24/7, doctors. orders. I had a unit with a really long hose here in the house and a portable Helios unit to take outside so I didn't have to use a tank. I felt like a dog on a leash in the house, I would get caught on things and it was a pain. I was so happy to get outside I didn't mind the portable unit and didn't notice anyone staring at me. But it really helped. My PFT got better so I don't need it anymore.

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Guest Jennifer

I was prescribed oxygen supplement as soon as I was diagnosed. I think my TVC was 47% and when I made it to the hospital my saturation was at 50%. The Dr. insisted I use it and I obliged. I moved to a lower altitude and I do not really need it all the time now, although I use it 90% of the time. I leave it at home if I go to dinner or out with the girls, or for a quick errand. I use it always when exercising and at night. I need it while exerting myself as my o2 drops under 90. Being on oxygen supplement is supposed to help you not get so tired and help not get PH. Being on oxygen was really difficult the first six months. You feel like you are given a death sentence and life is over. Now, it's part of who I am...and I am okay with it for the most part. You grow up so much when you are dealt things like this and you realize what the important things are. It's not the canula on my face. It is annoying, I won't lie. You trip over the hose, the dogs chew holes in it, sometimes the delivery guy forgets to deliver, the liquid o2 freezes often ruining your plans to leave the house as scheduled, you can't go for that run, I have perma lines from the hose on my face, and traveling is more difficult. I am single, so when I do decide to date, I am very reluctant to tell that new someone I am on oxygen. It makes me wonder just how hard dating will be. On the flip side, thank goodness it is even an option and that so many of us can rely on it to live. Elderly folks are the best....they can relate and I love it. Kids like to stare, but it's cute...they will usually ask me or ask their parents. My family and friends are jsut happy I am using it. Some friends cannot handle it and they are not my friends anymore. It was really embarrassing at first. It still can be, but I just don't use it if I know I'm going to run into an unpleasant situation. Lucky for me, I have a pulse oximeter and can measure my saturation when in question. Like I said, the first six months I was so sad about having to use it. Now, it's just how it is.

I wish you the best. If you have any questions feel free to ask. I have not been sold on this, but my Dr. told me I'd be on o2 for the rest of my life.


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Thank you guys for the detailed insight. It's just what I wanted to know. I guess I'm trying to prepare myself for the inevitable.


I don't know what the abbreviations mean regarding the PFT's (I know that one ;) ) but I was told my diffusion rate was 67% 3 months ago. Down 3% from the previous 3 month checkup so I wondered why doctor said he didn't need to see me for another 6 months this time.


I get short of breath when I get stressed, which is often (going through a divorce with 2 young kids)


I've also noticed recently that I will get SOB in a stuffy room. I can't sit in my favorite, crowded coffee shop for 20 minutes without feeling SOB. BUT I can work up a sweat mowing the lawn and have no problem. Slow and steady is the key. I tried scrimmaging with my son's soccer team and I wasn't so much out of breath as I was hot and flushed in a very short time.


I'm planning a trip back East to visit relatives and I'm worried about flying. I just know I will have problems breathing on the plane if I can't sit in my coffee shop for 20 minutes, how can I sit on a plane with the stale, recycled air for 5 hours?


I had a mini panic attack once on a crowded flight. I just didn't feel like I could breathe and I started feeling claustrophobic. I had a hard time holding it together. This was 15 years before my diagnosis!


Anybody else experience any of the same - SOB in stuffy rooms, with stress, on planes or flushing quickly with exercise?


Thanks again for the wonderful insight.



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Guest Jennifer

I know the feeling...I used to feel SOB in a car with windows up. I think it's odd that you can mow the lawn and not feel SOB.

I guess since your fluctuation was only 3%, it's not until it is a 10% range that doctors take notice and consider it a real curve. The 3% range can just be your breathing was off that day, stress, the person giving the test, and other environmental factors.


About flying...on the airline I use, it cost $100 per segment to use their oxygen and the last I knew you cannot bring your own oxygen on flights. THe cabins are pressurized though. I bought oxygen the first time I traveled after being sick but monitered my saturation and it turned out I remained above 90 the whole time as long as I remained sitting in my chair and didn't get up a lot. I ended up canceling the oxygen for the flight home and saved the money.


Another thing, I used to feel SOB if I even had water in my stomache.

Do you think your SOB could be from drinking the coffee and having a full tummy? I don't mean to sit here and try to diagnose you (ha ha) but I had the same problem for almost a year and finally my dr. listened and put me on a pill that moves food from my stomach faster and it has helped with the SOB that I would get even with oxygen on.


I wish you the best of luck with your everything. I am sure a divorce is so unpleasant and especially at a time like this. You have a bunch of friends right here to listen and try to help.


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