So now for the O2 post.
I got my home O2 set up delivered today. I emailed the new coordinator at Children's hospital to see if I could get a home concentrator set up before my appointment on March 9th. I have almost 500 hours on my portable EverGo that I got right before Christmas. While I love it, I don't want to wear it out when I will eventually need it all the time for going out etc. She emailed me back this afternoon to let me know Apria was going to call me about delivering it today. I was thrilled!!!!! Talk about fast service! The woman at Apria called me and within 90 minutes the guy was knocking on my door. She had gotten everything approved through my insurance and there is no deductible or copay for me (which I was not expecting one because I have the same insurance as I was using in PA).
The delivery guys rolls up and knocks on my door with a concentrator, HUGE O2 tank and 3 small tanks. And tells me that the respiratory technician will be calling this week to set up delivery of MORE smaller portable tanks. Even though I told him that I don't need any of the tanks for back up because I have one that runs on batteries. Luckily Peter is going to put the large tank in the basement so I don't have to look at it. Yeah I flat out told him I don't want to see it at all.
It just reminds me that so much has changed. The guy asked me how long I had been using O2 and I said a year and half. Can you believe it has been that long since I started it? That scares me to that I have also upped my liters at night (I now use 3L and 4 with exercise) and with exercise. It's the progression. I just hope that I have a good clinic appointment so I can spiral out of this mood and start to feel better about myself.
And yes, adding a second, or better anti-depressant is on my to-do task list for clinic.
Maybe try putting clothes on the tank and naming him.... maybe that will help ;)
ReplyDeleteyeah, it's a liability thing, unfortunately. my home O2 company never delivered me a monster like that though! i did, however, have a pretty big one, and i hated it so much i shoved it in a closet behind a bunch of coats. worked out fne until the day a coat was stuck and i yanked it out only to have the O2 tank fall ON MY TOE! not pleasant, let me tell you. just make sure it's stored somewhere that doesn't get too hot, assuming it's full.
ReplyDeletei hear you on the O2 sucking. last thurs they used 5 liters with me on my WALK test! good lord. don't worry though -- soon that monster will be safely down in the basement and out of sight and you can get back to the comforting hiss of the concentrator ;)
Oh hun, maybe Tanky needs a skirt and flashy top, or... perhaps just a bathrobe... My lil CF-er is only 5 so she talks and visits with everything she sees, the oxygen tank(s) for her mommy, her neb, her vest motor, the vans, candles, dishes, food.... OK, come to think of it, the only thing she DOESN'T talk to are her toys... weird kid....
ReplyDeleteIn any case, I think Tanky needs a cool name and a green outfit(s)for Saint Patty's, lots of glitter and maybe a radical green wig!
I hope your spirits pick up soon.
Yea Piper I am thinking the back of the walk in closet is a better place. I was up half the night worried that it might explode down in the basement and that would SUCK. Then I can just hide it behind some hanging dresses or whatnot haha!!
ReplyDeleteLMAO Somer and T&M!!!!! I should dress it up...maybe I will!!!! :)
Name her, I always do goofy stuff like that. My PICC was Peter (haha). Hmm maybe, Olivia the O2 tank :) Somehow it just makes it a little happier. I really hope things get better soon, thinking of you cyster. xo
ReplyDeleteHi Amy,
ReplyDeleteI use Apria too and I think they need to leave the big tank. I have a generator so even when the power goes out I have power from the generator. The tank is big and takes up a lot of space and with 3 dogs I am always afraid of it getting knocked over. I know how you feel about needing to have O2 in your house. it is very surreal.
Girl, I know just how you feel..When the tank is sitting there in the room...it just sceams at u how sick you are!!!!!!!!!! I feel the same way. I have a huge O2 concentrator in my bedroom. Hang in there...I will be praying for you!
ReplyDeleteI'm sorry you've been in a funk. The O2 will help you in the long run though. It's tough. Don't feel like you have to post only if you're happy, the sadness is all a part of us, I'm glad you're honest about it!
ReplyDeleteHope you are out of your funk! It gets to the best of us sometimes.
ReplyDeleteI hated when I had to have O2 at home ... somehow made the reality of CF that much more real. I promptly hid both the concentrator and my liquid O2 tank in the closets. I even went so far as to have a power outlet put in the closet when I remodeled so I don't even have to see the power cord if I don't want to.
Sorry..i know it sucks. I know exactly how you feel. I had a huge concentrator (sort of looked like a generator) for home O2. I attached several lengths of tubing so I could move about the house (or at least into the kitchen, because I got to the point where I needed it to walk anywhere. Then I had a couple of portable ones for going out (which I rarely did). I'll be praying for you...especially for a good clinic visit to better your mood. But think about it..sometimes you deserve to be in a mood like that. It's hard facing reality that you are getting sick (er). But the O2 will help you so much and keep your "healthier" in the long run...promise. Hang in there!!
ReplyDeleteoh my. I have my big huge tank in the back of my closet. The unfortunate thing is, here in [the state you live in now, can't remember if you post that on the blog], the power DOES go out because of snow. It's weird. It happens way more than in Chicago where I'm from, and where they get just as much snow. Weird.
ReplyDeleteI am going to clinic tomorrow because I had a bleed tonight :( yuck. So maybe jail for me tomorrow. I'll let you know.
Why am I writing about me on your blog? To bed.
I remember when I had to accept O2 as part of my daily routine. . .I was just like you, I cried. . .a lot. I hope you find what will make all this easier for you.
ReplyDelete