Monday, January 21, 2008


You breathe, I breathe, even the terrorists breathe.

Some of us just have more trouble than others breathing. I happen to be one of them. I know my lung functions could be a lot worse, but I'm not happy with where they are. I will now try to explain PFTs in as few words as possible.

Pulmonary Function Tests - lung tests.
Spirometry - the most common lung function test. I breathe in REALLY deep and blow out the air as hard and as fast as I can... and keep blowing until there is no air left.

There are three numbers they mainly look at:
First, FVC - Forced vital capacity, the amount of air a person can expire after a maximum inspiration. The total air out is the FVC.
My FVC is running about 90% predicted when I'm healthy, about 75-80% when I'm sick. I don't like those lower numbers.

The second number is FEV1 - Forced Expiratory Volume in 1 Second. This is the amount of air I force out in the first second.
My FEV1 is about 60% when I'm healthy (not happy...) and as low as 40% when I'm sick (less happy...). This number has dropped a lot in the past few years for me.

The third number is less important, but still used. It is FEV1/FVC - This is the ratio of FEV 1 to FVC. In healthy adults this should be approximately 75 - 80%.
My most recent one was 56 when I was healthy, and when I was sick 42. I don't really like either of those, but whatever.

So that's the basics on how they measure my lung functions. When I'm sick, and sometimes when I'm not PFTs are absolutely exhausting. I've been told there is a point (mainly before transplant) when you become too sick to even do PFTs. Great.

Recently I was put on oxygen at night. It is a long story how I convinced them that I needed it, but I did. I was having horrible headaches, not sleeping well and was confused during the day. I was so tired no matter how much I slept.

I am on one liter at night, and honestly I'm not sure what that means. Is that one liter per hour? I'm guessing so, but I have no idea. I should Wikipedia it, but I am lazy.

I'm not a big fan of oxygen - well, I am a fan when it's in the air and I am getting enough on my own. Having to use a giant concentrator that is too heavy for me to lift to be able to keep my oxygen levels where they need to be is what I'm not a fan of. I hate my concentrator. I hate him so much I refuse to give him a name.

I name everything. I have Norman the hospital blanket, Shakey the Vest, Reggie the Wedgie, and Ned Nebulizer. I like naming things. I also like to take Gladly the bear with me to the hospital. My mother made fun of me for it last time she was here. I'd like to see her sick in the hospital, all by herself without a teddy bear. It's lonely without a bear.

Anyways, I refuse to name this oxygen concentrator. He is ugly and 50lbs and means I can't travel because I can't take him with me.

The day I saw the delivery guy roll the concentrator up to my door I saw my life ending. I knew I couldn't go visit Sarah in Milwaukee or Eau Claire, or go visit my parents or grandparents or travel with the dance team. I really wanted to go to at least one dance competition, but now that I'm on oxygen at night it doesn't seem possible.

I can't go camping because of the ugly guy in the dining room (he is in the dining room because he is too ugly for my bedroom. I would rather have 40 feet of tubing leading to my bed than Ugly messing up the vibe in my room). Not that I have been camping since middle school - but I've thought about it. It was possible before, now it's not.

If my friends decided to have a sleepover, I can't go because of the ugly beast in the dining room. ...Not that we've had a sleepover since the dorms, but it was possible. Now it's not. I can't stay over anywhere but here and that pisses me off. I feel trapped and isolated that I can't get drunk and spend the night on someone's couch. Not that I ever did that before, but I could have. Now I can't.

I can't go on a road trip. Forget flights. Forget trips. Unless I get a smaller concentrator, I'm never going anywhere overnight again. Seriously? That's insane.

This is why I'm fighting really hard to get the cute little concentrator. He would get a name. Cal, Caldwell, Carl, Carter, Chavez - all possible concentrator names. Or maybe Cliff then I would have Norm and Cliff. Cliff will probably be the winner unless someone else comes up with something even more clever.

When I get everything together and am able to travel again I will say "Let's go boys!" and haul all my stuff around. I really hope that I will be able to go to Italy this summer - that this O2 stuff hasn't ruined all my plans.

You never realize how much you could have done until you can't anymore.


Matt Todd said...

Sounds like you're about in the same spot as me. I'm in the in the Univ. MN hospital at the moment trying to get my weight up high enough to be transplanted and also to get PFT's up a bit as well. My FEV1 is down around 26% now and has been in that range for the better part of the last six months.

It is possible to travel with a big oxygen concentrator like that. i have done it. But its a real pain in the butt. It helped to have my wife move it for me. I might suggest that you look into liquid oxygen. Not sure if you're using anything portable. But when i was using a concentrator i also had some bottles for if i needed it when i went out. Those were a real pain in the butt. However now i have liquid oxygen. I have a big tank that looks like R2D2, not much better looking than the concentrator. But it doesn't use electricity, make noise or produce a bunch of heat, which is a nice plus. I also have one of those Helios portable deals that you see the old folks with. You fill the Helios up from the big tank and you have oxygen for 5-6 hours. So you get a lot more time than a bottle and its a lot smaller, less conspicuous and weighs less. I've been pretty happy with the switch, something you might want to check into. Also if you're traveling they do have a tank that i guess will fit in your trunk or back seat that you can take with you if you went on a trip and then just fill the Helios off of that, so that would make traveling a lot easier since that can just stay in the car. Also, depending on the oxygen company they may be able to hook you up with something at your destination as well.

Liters means liters per minute.

If you want to talk about this stuff more feel free to email me

Meredith said...

Found you by way of Nates blog spot, and thought I would drop you a line to tell you that I too (like so many others) will be praying for you. I am a Christ follower and believe in his wonderful working powers and miracles. I will stand today in the gap for you and others to believe for supernatural healing in your life. God has a plan, and it's our job to pray and wait upon him, but to believe in him and have faith in him.

"My light shall break forth like the morning, and my healing shall spring forth speedily." Isaiah 58:8

Stay strong cast ALL your cares upon the Lord. Gold Bless, Meredith/Orlando FL

Princess Talana said...

The last line of "You never realize how much you could have done until you can't anymore." hit me like a ton of bricks. That seems to be my life some days. It may be something small like carrying in a bunch of groceries at once... or something bigger like not being able to walk as far as I used to.
I'm surprized you are on night oxygen with that "high" of PFT's. I think I may be creeping closer to night O2 as I have been having migranes lately... dunno. My FEV1 usually hangs out around 45% so it may be time.

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