Oxygen

L

lovingBenandCambree

New member
I am just wondering how many of you are on oxygen? I have been on it for over a year. I have been battling getting off and I just wanted to know how common it is for CFers to be on it. I had always been really healthy until the past two years. The first year I started going down hill I had a very stressful job and the second year I was pregnant and had severe complications with the pregnancy, anyone relate? Just wondering. I am new to this whole forum. Thanks for reading.
Emilee
 
J

JazzysMom

New member
In 1/2000 I was on oxygen while in the hospital then nothing until this May. I was on O2 the entire hospital stay & came home with it for nighttime & as needed. I felt like I took 10000 steps back. I thought it was the end of the world until the Social Worker at my CF office explained it this way. Our bodies go through a lot on a normal day even when there is no infection. They get a work out from the meds, treatments & just working hard to survive. The O2 gives everything a chance to relax, calm down & reenergize. I am only on 2 liters which is what I was using when I left the hospital. While in the hospital I struggled & worked so hard to get to where I didnt need it. I pushed too hard & believe I held up my progress. Sometimes things dont work as fast as we want. I do have to say that it is nice not to struggle & really be able to breath/relax during the times I use it.
 
L

lovingBenandCambree

New member
Hey thanks for responding. I know that there are times where I just get impatient and chasing my baby around isn't always easy with oxygen, but I certainly can't complain. I have come a long way this past year and am very blessed. I have a moment of being down and then I am usually able to get over it and get on with life. What else can you do, you just have to stay positive. Your name is Jazzysmom so can I ask how many kids you have?
 
S

SeasonsOfLove

Guest
Going on oxygen doesn't mean you'll be on it forever. Colleen had a tough winter once where she went on it briefly - but she eventually went off it.

Best of luck,
 
C

ClashPunk82

New member
I think for me it would benefit me at night to be on Oxygen. But my insurance won't cover it. I have to give them a document of what my O2 does during the night and if it's not low enough for them then they won't cover oxygen for me.
 
W

WinAce

New member
Gah! Same thing happened to me with Medicaid recently.

If your doc thinks you need it, GET IT, no matter what you need to do. You can ruin your heart if it dips to dangerous levels at night (levels that need not be as low as those dumbass insurance companies require). Heck, get your doc to forge a note certifying your levels drop sufficiently, if need be, so long as your health needs are taken care of.
 
J

JazzysMom

New member
My CF office would find a way for me to have O2 with minimal if any out of pocket expenses if my insurance didnt cover. That is what CF pharmacy, CFF & other groups are for. Your CF office, social worker etc might have to search harder, but there should be a way. The problem for me is that my Dr. is in NYC & I live 3 hours away from them in the country so my resources up here are not as abudant or are far away. Nothing happens immediately because of trying to locate a provider etc.
 
L

lovingBenandCambree

New member
I also had to do the overnight oxygen thing for my insurance. My Dr. set it up for me and it came right to my house. All I did was attach the oximeter to my finger for the night and my results were read all night. It was then sent up to be evaluated. It wasn't hard and as long as your numbers go below 90 I think insurance has to comply if that is in your policy. You should definitley look into it greater. Your heart works harder if your lungs aren't doing so good.
 
C

CFgirlie

New member
clash ... i go to Children's Hospital (Boston) too ... what floor do you usually go on ? ... (even though the floors are different now) ... have you been in the new building yet ? it looks so different !
 
C

ClashPunk82

New member
I go on 10 East. But I haven't seen the new part where 9 is going. I heard they have swivel beds and stuff. I am so jealous I wanna go there! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
L

luke

Guest
we don't have any stores there or I maybe could see if I get it if set up for free, sorry. Move down south and I will help you out
 
A

anonymous

New member
hello!

I´m on oxygen, I start with oxygen when i was 12 and now i´m 20. so i have had it almost 9 years, The first years i had oxygen only at night but now i must have it all the time(24h a day), But that not stop me to do what i want, I like to walk race usually it´s 5 or 10 km.with oxygen on and it going good,and one of my dreams are to walk Great Strides(the race for Cf in usa). now i´m also on the lung transplant list.. so maybe after i got my transplant. who knows. <img src="i/expressions/face-icon-small-smile.gif" border="0">

take care lot of hugs from Sweden/Marie 20 with cf.
 
A

anonymous

New member
Nicole with me, they did a "6 min walk test" and that dipped down to low 80's so they knew if I did that while exercising they said most likely dips that way at sleep. A couple times went to high 70's. But when I rested for a minute or two it went back up to 95. Weird. But the dr wrote a letter to ins and they approved it. Your CF center should be doing something for you. Low O2 is detremntal to other organs. Your heart probly races sometimes. I notices that alot when I finally realized that it was my O2 and not just the way I am. Because I just thought that that was the way my heart beated. Fast. It doesn't. Your heart tries to compensate for the lack of oxygen going to your lungs, it beats faster to get the o2 there. Sometimes your local healath dept can help with insurance coverage as well. We have a state funded program for CF'ers in Mich called "children's speical health care". Maybe they can put you in touch with something too. Take care. Becky
 
You must log in or register to reply here.
Top