As my doctor has told me to yesterday, I started monitoring my O2 throughout the day. I used to be really good at this but I have slacked off int he past few months. So today I hung my oximeter around my neck and got to work...on cleaning, laundry and food shopping.
Cleaning - not bad, never dropped below 91%. Granted I did it all immediately after my morning treatment.
Laundry - right along there with cleaning. I still have some clothes in the dryer I need to fold, but my back ache is more troublesome right now than the lungs. I just did my nightly treatment.
Food shopping - of course the public chore is the one where I dipped below 90% and stayed there. I averaged around 87% the whole trip, dipping down to 81% when loading the bags into the car. I didn't even check after carrying them in the house...I was too nervous.
She told me if I get below 90% with ANY physical exertion I need to wear my O2. Does this mean I need to lug my O2 with me to the food store? I will have to go in public with tubing on my face? My CF won't be hidden anymore? I will be able to park in handicap and NOT look like I am lying?
As I sat in my car after loading it up with bags and trying to catch my breath, I thought of what she had told me, and then I thought that I will have to wear my O2. And then, the tears came. Just a few, nothing hysterical, but they came. I'm 29, I don't want to wear the O2 in public and shout to the world that I have a horrible lung disease and it is kicking my ass.
Call me wussy, call me a baby, but I don't wanna!!!!!!!!!!
sigh. i wrote almost this exact same post regarding o2 and the grocery store. what is it about the grocery store- it's like the quintessential independent lady thing to do, and doing it with 02 is just too symbolic and weird and everyone seems to have a last standoff regarding 02 and the grocery store.
ReplyDeletei will try to look up my two posts regarding this.
how do you feel about peapod?
i wait til i get a free delivery coupon, and then i order it up!
PS i still think that dr. d pushes for 02 way to early in the progression and that you should do as much as you can without it based on how you FEEL, not on your numbers. I mean, before she said this, did you have problems at grocery more than before? I just wondered, because she wanted me wearing o2 four YEARS before I needed it, and it was one of the two big issues between us.
ReplyDeletebut that's just me.
pro-feeling, anti-numbers,
your cystic gal.
I feel like you're speaking my mind. There comes a time in all CFers lives when the big scary Oxygen conversation comes up. I can wear it around people I know, no biggie, driving I'm even learning to live with, but out in real PUBLIC? No one understands why a seemingly healthy 24 year old (though I look much younger) is wearing oxygen tubing. It's just so.... odd. And I totally get that, hell if I see someone with O2 on, I stare too, trying to figure out what they have. It's natural to stare at something that doesn't seem to make sense. It's also natural to feel self conscious about wearing it in public. The thing is, I know that as long as I act normal, people are going to admire me for being strong and not letting a little tubing get in the way of me living my life the way I want to live it. I say, "tubes be damned!" I do what it takes to keep me going. I don't need an ego anyway, it never points me in the right direction. xoxo good luck with this battle!
ReplyDeleteI *hate* the thought of wearing my O2 in public, most specifically @ work. I feel like I'm playing the sympathy card if I wear my O2 to work (you know that "LOOK" people give you when you wear your O2 ...awww, poor thing, etc., etc., etc.) Probably not the brightest thought process, I know, but I can't change it.
ReplyDeleteMy "game plan" (so to speak) is to get to work early, take my time walking in, and then chill out at my desk for about ten or fifteen minutes. My #'s are routinely in the high 80's, low 90's but I drop like a rock with any kind of exertion. Por ejemplo, the day before I left the hospital last time I was satting 86 on RA after walking on the treadmill for two or three minutes. It's a pain in the a$$!!!
I agree with CG - I'm very pro-feeling, anti-numbers. I try to use my O2 as little as possible because a) I hate being tied down to it and b) I know there is one day when I am going to have to use it all the time and I'm not ready for that to be now. So as long as I can get away with it, I will. Fortunately my docs trust me to know when I must have it and when I can do without.
We are pretty much in identical spots again girly. My sats have sucked since Boston. I am 92ish at rest, and going up the stairs, doing anything, quickly puts me below 90. I have clinic in 2 weeks, and, well, I really don't want to deal with the conversations about it and my SOB.
ReplyDeleteLove you, even if we can't breathe.
1) i'm with CG too. i have ALWAYS been told (by all three of the CF clinics i've gone to in my life and by my tx clinic) that anything above 88 is safe for the heart. they prefer me to go on O2 as well when my sats are below 90, but i once specifically asked my doctor if i needed to return home if i was out and my O2 dropped into the high 80s. she actually laughed. she said, "only if you feel you need it, but please if it drops to at or below 86 take a rest!"
ReplyDeletenot that i'm anti-heart or anything. i wear my O2 in public because that's just how it's gonna be if i want to go out and do pretty much anything at this point. and for some reason it just stopped bothering me at some point -- maybe around the second week? i just don't care, and consequently i haven't noticed anyone staring lately. they stare a LOT more when i cough, for sure. and one good thing about the O2: when you do have a coughing fit, people don't assume you have something contagious. they see the O2 and are like, oh, whatever, she has a lung disease.
hope this doesn't sound too pollyanna, but maybe getting back to baseline will boost your exertion sats a bit? or since you respond so well to albuterol maybe carrying a xopenex inhaler with you would help? i dunno, just tossing things out there.
love to you friend!
I know I have at least one post regarding this and it's almost identical as well. O2 was a cause of a lot of emotional stress and sadness. However, I learned that NOT taking the O2 can damage the heart which leads to it becoming enlarged. It's unfortunate that we have to deal with such terrible things before we're 30!
ReplyDeleteaww thanks everyone :)
ReplyDeleteI should have been more clear. Like Piper mentioned, once the Cipro starts working or I go in for IVs my O2 won't drop (hopefully) with exertion like it is now. So this is basically a few week deal-o. I am definitely NOT at needing it throughout the day when I am feeling up to par.
As far as how I feel, I feel ridiculously SOB and tight when walking around the food store and loading the bags into my car. I don't know if the O2 will help with that feeling or not. Loading the bags and bringing them in have always been a trouble area for me, but it does get worse when I am "sick".
Best quote ever! "I don't need an ego anyway, it never points me in the right direction."!!!!!
My worry is my heart. My resting HR is usually 110+ as it is, so I hate the thought of adding un-needed stress onto it anymore than I have to ya know? At least I bought enough food to keep the house full until at least next Wednesday :) So maybe by then Cipro will have started working!!!!! (which I am waiting for since the 750mgs she rx'd will cost me $121, but Target is calling today to see if I can take 500mgs 3x a day instead so it will only cost me $4).
can target rx you enough 500mgs for you to break them in half? that is what my pharm did, I take 1.5 500mgs twice a day. That way they were still free (this pharm does free cipro and some other drugs). Nice to have a drug buddy, even if it isn't a fun one!!
ReplyDeleteWhile I don't think I need 02 yet, I would say I am with the "how you feel" people rather than the number people. CF stinks. boo.