Kerry

[Guest guest]

hi all,

Call you insurance and see what hospital are contracted with them for transplants. You will also get a transplant case manager and they would for you. I love my transplant case manager she has went above and beyond her duties. Your insurance company only contracts with hospitals that has had x amount of success transplants, which is good for you. Not all hospital can do all transplants. So you do want to go to the best transplant hospital around you, they also help to pay for some of the traveling expenses, toll, mileage, some times rooms things like that.

I worked for an insurance company 11 years, and paid transplants claims for a few years before becoming a claims auditor. I learned a lot, I'm going through the lung evaluation now, I just passed the 6 minute walk test, I had to be able to walk 600, and I walked 835 feet, I did drop during the walk within a min they had the canula out of my nose and the hi-ox non rebreather on me and this whole time still walking, dropped down to 80 and then back up to 97. It was GREAT walking like that hasn't been able to do that in a long time. Now on with the evaluation for 3 days, yippee. I still have to lose 9 lbs before I can be listed. So I hope to lose that before the end of Sept. He said once listed, it takes about 3-6 months. But you MUST be ready the day you are listed. I'm ready, and now more excited too.

Donna in DE, ipf 1990

[Guest guest]

hi all,

Call you insurance and see what hospital are contracted with them for transplants. You will also get a transplant case manager and they would for you. I love my transplant case manager she has went above and beyond her duties. Your insurance company only contracts with hospitals that has had x amount of success transplants, which is good for you. Not all hospital can do all transplants. So you do want to go to the best transplant hospital around you, they also help to pay for some of the traveling expenses, toll, mileage, some times rooms things like that.

I worked for an insurance company 11 years, and paid transplants claims for a few years before becoming a claims auditor. I learned a lot, I'm going through the lung evaluation now, I just passed the 6 minute walk test, I had to be able to walk 600, and I walked 835 feet, I did drop during the walk within a min they had the canula out of my nose and the hi-ox non rebreather on me and this whole time still walking, dropped down to 80 and then back up to 97. It was GREAT walking like that hasn't been able to do that in a long time. Now on with the evaluation for 3 days, yippee. I still have to lose 9 lbs before I can be listed. So I hope to lose that before the end of Sept. He said once listed, it takes about 3-6 months. But you MUST be ready the day you are listed. I'm ready, and now more excited too.

Donna in DE, ipf 1990

[Guest guest]

hi all,

Call you insurance and see what hospital are contracted with them for transplants. You will also get a transplant case manager and they would for you. I love my transplant case manager she has went above and beyond her duties. Your insurance company only contracts with hospitals that has had x amount of success transplants, which is good for you. Not all hospital can do all transplants. So you do want to go to the best transplant hospital around you, they also help to pay for some of the traveling expenses, toll, mileage, some times rooms things like that.

I worked for an insurance company 11 years, and paid transplants claims for a few years before becoming a claims auditor. I learned a lot, I'm going through the lung evaluation now, I just passed the 6 minute walk test, I had to be able to walk 600, and I walked 835 feet, I did drop during the walk within a min they had the canula out of my nose and the hi-ox non rebreather on me and this whole time still walking, dropped down to 80 and then back up to 97. It was GREAT walking like that hasn't been able to do that in a long time. Now on with the evaluation for 3 days, yippee. I still have to lose 9 lbs before I can be listed. So I hope to lose that before the end of Sept. He said once listed, it takes about 3-6 months. But you MUST be ready the day you are listed. I'm ready, and now more excited too.

Donna in DE, ipf 1990

[Guest guest]

Hi Kerry,I asked my dad and he agrees with Joyce as well. My dad has the Helios and does extremely well with it. It is smaller than the first unit he had. He just puts the strap around his shoulders (It doesn't fit his waste thanks to prednisone.) and he is off. He has two big containers at home. One in the den and one in the bedroom for his sleep apnea machine. He only uses the one in the den when he is sitting in the chair. Otherwise he fills his Helios and always uses it. He says he fills like he can just go with that one. When we are out he refills it with the tank he keeps in the car. It is a smaller tank than the ones in the house, but it lasts a week of continued use. We take it on trips as well and he uses it the entire time to fill off of and sleep with. Sometimes his liquid oxygen freezes up which I know a lot of people complain about on the board. He says his mostly freezes

up when he puts too much in the tank upon filling. He is on 2lpm and he can use the Helios for about 6-8 hours depending on activity before he has to fill it. I am praying for you Kerry and thinking of you always. Hang in there.Cyndi (DAD PF 12.05)Joyce wrote: Kerry, Here is my advice: Get the Helios, snap it to your belt. Light weight, out of the

way. You may also get his big brother, the Marathon for longer times out. It lasts for hours. Then get compressed air tanks for back up....if you run out of liquid while you are out. You can get a small liquid tank for fill-ups to keep in the car. As active as you are, it would be the best way to go. You can also have a concentrator "R2D2" for home or simply use from your liquid tank. I used liquid until the 02/insurance decided that I could not be supplied with both liquid and compressed. See, when you think you have no mucus, it is only hiding down there. Sometime maybe your husband can come up with you and we will show you how to do the percussion therapy. Also, you should use your flutter while you are nebulizing. About 1/2 through and at the end. Percussion also should take place immediatly after. From experience I have learned

that the more of that germ ridden gunk that I can keep out of my lungs, the better I feel ...... and it has cut waaaaaaay down on infections. You can call me anytime if it becomes confusing. Wish that I had had help early on. The provider does not offer much. The less equipment and services that you demand ..... the better thier bottom line looks. All about money!!! Call me if you want to. I never want to call and interupt while you have so much to deal with. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am

strong.> >> > hi kerry,> > > > i'm not sure if this is the right thing for me to say but i am > going > > to say it anyhow.> > > > i personally know how disheartening the words! oxygen can sound and > > the initial sadness that comes with the words. now that i have had

> my > > oxygen for quite some time, i try to express to other new oxygen > > users that this is a step up not a step down. that's my firm > belief.> > > > look at all the things you are doing now without the oxygen. think > of > > how much more you may be able to do with it. > > > > girl i slap that tank on my back and that hose up my nose and trek > my > > little way all through the gym that i go to. my husband has been > down > > because he recently had hernia surgery. i turn my concentrator up > as > > high as it will go and mow the lawn. (now grant it, that takes me > 10 > > times longer than it would for chuck to do it but i get it done > > eventually)> > > > this is a new beginning for you, not another method of the disease > > wearing you down. wear that hose with pride

girl and show the > world > > you can keep up.> > > > love ya!!> > > > LCH 10-05> >>

[Guest guest]

Hi Kerry,I asked my dad and he agrees with Joyce as well. My dad has the Helios and does extremely well with it. It is smaller than the first unit he had. He just puts the strap around his shoulders (It doesn't fit his waste thanks to prednisone.) and he is off. He has two big containers at home. One in the den and one in the bedroom for his sleep apnea machine. He only uses the one in the den when he is sitting in the chair. Otherwise he fills his Helios and always uses it. He says he fills like he can just go with that one. When we are out he refills it with the tank he keeps in the car. It is a smaller tank than the ones in the house, but it lasts a week of continued use. We take it on trips as well and he uses it the entire time to fill off of and sleep with. Sometimes his liquid oxygen freezes up which I know a lot of people complain about on the board. He says his mostly freezes

up when he puts too much in the tank upon filling. He is on 2lpm and he can use the Helios for about 6-8 hours depending on activity before he has to fill it. I am praying for you Kerry and thinking of you always. Hang in there.Cyndi (DAD PF 12.05)Joyce wrote: Kerry, Here is my advice: Get the Helios, snap it to your belt. Light weight, out of the

way. You may also get his big brother, the Marathon for longer times out. It lasts for hours. Then get compressed air tanks for back up....if you run out of liquid while you are out. You can get a small liquid tank for fill-ups to keep in the car. As active as you are, it would be the best way to go. You can also have a concentrator "R2D2" for home or simply use from your liquid tank. I used liquid until the 02/insurance decided that I could not be supplied with both liquid and compressed. See, when you think you have no mucus, it is only hiding down there. Sometime maybe your husband can come up with you and we will show you how to do the percussion therapy. Also, you should use your flutter while you are nebulizing. About 1/2 through and at the end. Percussion also should take place immediatly after. From experience I have learned

that the more of that germ ridden gunk that I can keep out of my lungs, the better I feel ...... and it has cut waaaaaaay down on infections. You can call me anytime if it becomes confusing. Wish that I had had help early on. The provider does not offer much. The less equipment and services that you demand ..... the better thier bottom line looks. All about money!!! Call me if you want to. I never want to call and interupt while you have so much to deal with. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am

strong.> >> > hi kerry,> > > > i'm not sure if this is the right thing for me to say but i am > going > > to say it anyhow.> > > > i personally know how disheartening the words! oxygen can sound and > > the initial sadness that comes with the words. now that i have had

> my > > oxygen for quite some time, i try to express to other new oxygen > > users that this is a step up not a step down. that's my firm > belief.> > > > look at all the things you are doing now without the oxygen. think > of > > how much more you may be able to do with it. > > > > girl i slap that tank on my back and that hose up my nose and trek > my > > little way all through the gym that i go to. my husband has been > down > > because he recently had hernia surgery. i turn my concentrator up > as > > high as it will go and mow the lawn. (now grant it, that takes me > 10 > > times longer than it would for chuck to do it but i get it done > > eventually)> > > > this is a new beginning for you, not another method of the disease > > wearing you down. wear that hose with pride

girl and show the > world > > you can keep up.> > > > love ya!!> > > > LCH 10-05> >>

[Guest guest]

Hi Kerry,I asked my dad and he agrees with Joyce as well. My dad has the Helios and does extremely well with it. It is smaller than the first unit he had. He just puts the strap around his shoulders (It doesn't fit his waste thanks to prednisone.) and he is off. He has two big containers at home. One in the den and one in the bedroom for his sleep apnea machine. He only uses the one in the den when he is sitting in the chair. Otherwise he fills his Helios and always uses it. He says he fills like he can just go with that one. When we are out he refills it with the tank he keeps in the car. It is a smaller tank than the ones in the house, but it lasts a week of continued use. We take it on trips as well and he uses it the entire time to fill off of and sleep with. Sometimes his liquid oxygen freezes up which I know a lot of people complain about on the board. He says his mostly freezes

up when he puts too much in the tank upon filling. He is on 2lpm and he can use the Helios for about 6-8 hours depending on activity before he has to fill it. I am praying for you Kerry and thinking of you always. Hang in there.Cyndi (DAD PF 12.05)Joyce wrote: Kerry, Here is my advice: Get the Helios, snap it to your belt. Light weight, out of the

way. You may also get his big brother, the Marathon for longer times out. It lasts for hours. Then get compressed air tanks for back up....if you run out of liquid while you are out. You can get a small liquid tank for fill-ups to keep in the car. As active as you are, it would be the best way to go. You can also have a concentrator "R2D2" for home or simply use from your liquid tank. I used liquid until the 02/insurance decided that I could not be supplied with both liquid and compressed. See, when you think you have no mucus, it is only hiding down there. Sometime maybe your husband can come up with you and we will show you how to do the percussion therapy. Also, you should use your flutter while you are nebulizing. About 1/2 through and at the end. Percussion also should take place immediatly after. From experience I have learned

that the more of that germ ridden gunk that I can keep out of my lungs, the better I feel ...... and it has cut waaaaaaay down on infections. You can call me anytime if it becomes confusing. Wish that I had had help early on. The provider does not offer much. The less equipment and services that you demand ..... the better thier bottom line looks. All about money!!! Call me if you want to. I never want to call and interupt while you have so much to deal with. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am

strong.> >> > hi kerry,> > > > i'm not sure if this is the right thing for me to say but i am > going > > to say it anyhow.> > > > i personally know how disheartening the words! oxygen can sound and > > the initial sadness that comes with the words. now that i have had

> my > > oxygen for quite some time, i try to express to other new oxygen > > users that this is a step up not a step down. that's my firm > belief.> > > > look at all the things you are doing now without the oxygen. think > of > > how much more you may be able to do with it. > > > > girl i slap that tank on my back and that hose up my nose and trek > my > > little way all through the gym that i go to. my husband has been > down > > because he recently had hernia surgery. i turn my concentrator up > as > > high as it will go and mow the lawn. (now grant it, that takes me > 10 > > times longer than it would for chuck to do it but i get it done > > eventually)> > > > this is a new beginning for you, not another method of the disease > > wearing you down. wear that hose with pride

girl and show the > world > > you can keep up.> > > > love ya!!> > > > LCH 10-05> >>

[Guest guest]

Dear Kerry, Thanks for posting. I think it would be safe to say we were all worried about you. I've had to wear oxygen for almost 5 years now and truth be told, I still hate it. But, it really does free you up and you are doing damage to your other organs by letting your saturation drop below 88-90. So, I deal with it. Honestly, I don't think anyone on this board could say that they like wearing it. I pray that you do what you need to do to be around for a long time for your family. Let us know about the transplant situation. Leanne uip 1/03 Illinois

Park yourself in front of a world of choices in alternative vehicles.Visit the Yahoo! Auto Green Center.

[Guest guest]

Kerry, I will add my " I hate THE O2 " to all the others who posted

today.

I hate dragging the 65+ of tubing around my down stairs...I get caught

on kitchen cabinet knobs all the time. I hate going to sleep with the

nose hose !!!

I get caught on door ways and I hang myself on a daily basis...but I

can get around...I can get stuff done. I use liquid o2 and the Helios

portable

for getting out. I hate lugging the portable Helios...after 2 years

I still feel self-conscience.But again...I'm getting out...doing my

thing..whatever that may be.

Considering the alternative..I'll probably always hate it...but I'm

dealing day by day

Just live your life...love your kids and husband..and realize that the

o2 keeps you here!!!!

Z fibriotic NSIP/05

Z fibriotic NSIP/o5/PA

Potter, reader,carousel lover and

MomMom to Darah

“I’m gonna be iron like a lion in Zion”

Bob Marley

Kerry wrote:

MB,

It looks like the house is really coming along. That's so nice that

you are able to receive these updates. I LOVE, LOVE, LOVE screened

in porches. In our initial addition plans we had a sunroom planned

for the entire length of the back of the bedroom and bathroom. We

had to downscale though. I do love the back windows that open out

to the backyard, but it would have been nice to have the screened

in/glassed in room.

I haven't been on since the o2 was delivered. I don't exactly know

what to say. Well, yes I do... I HATE IT! When it was delivered my

daughter sadly said I don't want it, I want my old Mommy back. I

told her hopefully I'd feel better w/ this and that would be

better. I don't, I HATE IT. I hate it even more than when I had it

for overnight w/ the pregnancies. It was bad enough just for

bedtime, but to actually attempt to be mobile is ridiculous. I

don't know how some of you do it. The noise of the converter is

insane. It's not the noise actually it's the mmm, MMM, mmm, mmm,

MMM, mmm. I have a brand new Airsep, supposed to be one of the

quietest, < 40 decibels, its the change in tone as it's running the

cycles, the purge, etc. UGGGG! I can't sleep unless it's behind a

closed door. I can't close my bedroom door because I have to hear

the kids. I put it in my walk in closet because it's big and has

A/C and it still was like a sauna in the morning, burning UP!

Finally we put it out in the entry and it's perfect except you know

what 50 ft. ain't what you think it is. It reaches my bed, but

that's it, I can't even get up to pee. For me to reach from one end

of the house to the other it has to be in the middle room, so I'd

have to move this thing for daytime and nighttime. At night I wake

up about a million times w/ it on trying to readjust. It makes my

ears sore if I lay on my side. I think I'm snoring and

mouthbreathing if I sleep on my back. Walking around I jerk my head

off and my ears were sore the first day. Did I mention I hate

it!!! For coughing it's next to useless because I have to blow my

nose after every cough and spit. I did try to incorporate it last

night w/ coughing session hoping at least to make the recovery/post

coughing better. The only time I don't mind it is sitting down

watching tv or here at the computer... and guess what I don't need

it then. I need it when I am doing chores, yet I'm expending more

energy just to move around w/ it. I need it when I get up to pee,

yet it won't reach and even if it did it disturbs my sleep so that

doesn't seem like a good tradeoff.

I do like the portable. I received the POC I requested, the < 5 lb.

Airsep Freestyle. I didn't think I'd like the pulse, but it doesn't

bother me at all. This thing is very quiet and really portable. I

braved it out to the eye doctor and another day to a 2 hour grocery

trip to Meijer. Originally, I was almost brought to tears thinking

about going out w/ it and talking to my husband. Then I realize I

actually have it easier then most because of my age people might not

automatically assume "I've smoked for 40 years and that it's all my

fault." I told my husband about some of the stories here w/ people

telling their kids "see that's what happens when you smoke". My

husband said he'd absolutely go postal if somebody said that in his

presence.

So, here's the bottom line I went out w/ it and was actually okay.

I hate the home concentrator, I like the POC, but well I just don't

feel like they're worth the hassle. For the most part it seems

easier to pace myself then deal w/ these. I've used it 3 nights out

of 4 and the one I didn't I slept best. I can see myself using it

shopping, but not many other things.

I got a call from my pulmo office on Friday, but I missed it as I

was out at a framing store (without my POC since I wasn't running

around). I assume the call was about whether BCBS covers transplant

at Jewish and whether or not they can get me in early at the other

doc.

Made appointment for another company to come out and clean our air

vents, had it done recently by Sears but in painting my husband

found something yucky looking on inside of one of the vent covers.

Seems like a good idea to have one of these guys come out and check

out our environments for molds, etc. Any suggestion on finding one

and if joe schmo can get one or is this a medical only prescribed

house evaluation?

Thats all folks!

Kerry (nose hose hater!)

IPF '01

>

> Hi all,

> Just wanted to say I posted some pictures of the progress the

builder is making on our new house in Durham, NC. It's very

exciting to see it going up. Between the builder and my sister we

get pictures via email frequently.

> I'm headed down there in less than two weeks, first to see my son

out in Boone and then to my sister's so I'll be able to see for

myself how it's coming along. I can't wait!

> Hope everyone is having a great weekend and feeling well. It's a

beautiful day here and I'm going to do my best to enjoy it.

>

> Kerry, haven't seen you post for a couple of days...the last post

I remember you mentioned the O2 company was on their way. How is it

going? I know we're all thinking of you!!

>

> Beth in NY Fibrotic NSIP 06/06

>

> "At the evening of life we shall be judged on our love."

> St of the Cross

>

No virus found in this incoming message.

Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.15/949 - Release Date: 8/12/2007 11:03 AM

[Guest guest]

Kerry, I will add my " I hate THE O2 " to all the others who posted

today.

I hate dragging the 65+ of tubing around my down stairs...I get caught

on kitchen cabinet knobs all the time. I hate going to sleep with the

nose hose !!!

I get caught on door ways and I hang myself on a daily basis...but I

can get around...I can get stuff done. I use liquid o2 and the Helios

portable

for getting out. I hate lugging the portable Helios...after 2 years

I still feel self-conscience.But again...I'm getting out...doing my

thing..whatever that may be.

Considering the alternative..I'll probably always hate it...but I'm

dealing day by day

Just live your life...love your kids and husband..and realize that the

o2 keeps you here!!!!

Z fibriotic NSIP/05

Z fibriotic NSIP/o5/PA

Potter, reader,carousel lover and

MomMom to Darah

“I’m gonna be iron like a lion in Zion”

Bob Marley

Kerry wrote:

MB,

It looks like the house is really coming along. That's so nice that

you are able to receive these updates. I LOVE, LOVE, LOVE screened

in porches. In our initial addition plans we had a sunroom planned

for the entire length of the back of the bedroom and bathroom. We

had to downscale though. I do love the back windows that open out

to the backyard, but it would have been nice to have the screened

in/glassed in room.

I haven't been on since the o2 was delivered. I don't exactly know

what to say. Well, yes I do... I HATE IT! When it was delivered my

daughter sadly said I don't want it, I want my old Mommy back. I

told her hopefully I'd feel better w/ this and that would be

better. I don't, I HATE IT. I hate it even more than when I had it

for overnight w/ the pregnancies. It was bad enough just for

bedtime, but to actually attempt to be mobile is ridiculous. I

don't know how some of you do it. The noise of the converter is

insane. It's not the noise actually it's the mmm, MMM, mmm, mmm,

MMM, mmm. I have a brand new Airsep, supposed to be one of the

quietest, < 40 decibels, its the change in tone as it's running the

cycles, the purge, etc. UGGGG! I can't sleep unless it's behind a

closed door. I can't close my bedroom door because I have to hear

the kids. I put it in my walk in closet because it's big and has

A/C and it still was like a sauna in the morning, burning UP!

Finally we put it out in the entry and it's perfect except you know

what 50 ft. ain't what you think it is. It reaches my bed, but

that's it, I can't even get up to pee. For me to reach from one end

of the house to the other it has to be in the middle room, so I'd

have to move this thing for daytime and nighttime. At night I wake

up about a million times w/ it on trying to readjust. It makes my

ears sore if I lay on my side. I think I'm snoring and

mouthbreathing if I sleep on my back. Walking around I jerk my head

off and my ears were sore the first day. Did I mention I hate

it!!! For coughing it's next to useless because I have to blow my

nose after every cough and spit. I did try to incorporate it last

night w/ coughing session hoping at least to make the recovery/post

coughing better. The only time I don't mind it is sitting down

watching tv or here at the computer... and guess what I don't need

it then. I need it when I am doing chores, yet I'm expending more

energy just to move around w/ it. I need it when I get up to pee,

yet it won't reach and even if it did it disturbs my sleep so that

doesn't seem like a good tradeoff.

I do like the portable. I received the POC I requested, the < 5 lb.

Airsep Freestyle. I didn't think I'd like the pulse, but it doesn't

bother me at all. This thing is very quiet and really portable. I

braved it out to the eye doctor and another day to a 2 hour grocery

trip to Meijer. Originally, I was almost brought to tears thinking

about going out w/ it and talking to my husband. Then I realize I

actually have it easier then most because of my age people might not

automatically assume "I've smoked for 40 years and that it's all my

fault." I told my husband about some of the stories here w/ people

telling their kids "see that's what happens when you smoke". My

husband said he'd absolutely go postal if somebody said that in his

presence.

So, here's the bottom line I went out w/ it and was actually okay.

I hate the home concentrator, I like the POC, but well I just don't

feel like they're worth the hassle. For the most part it seems

easier to pace myself then deal w/ these. I've used it 3 nights out

of 4 and the one I didn't I slept best. I can see myself using it

shopping, but not many other things.

I got a call from my pulmo office on Friday, but I missed it as I

was out at a framing store (without my POC since I wasn't running

around). I assume the call was about whether BCBS covers transplant

at Jewish and whether or not they can get me in early at the other

doc.

Made appointment for another company to come out and clean our air

vents, had it done recently by Sears but in painting my husband

found something yucky looking on inside of one of the vent covers.

Seems like a good idea to have one of these guys come out and check

out our environments for molds, etc. Any suggestion on finding one

and if joe schmo can get one or is this a medical only prescribed

house evaluation?

Thats all folks!

Kerry (nose hose hater!)

IPF '01

>

> Hi all,

> Just wanted to say I posted some pictures of the progress the

builder is making on our new house in Durham, NC. It's very

exciting to see it going up. Between the builder and my sister we

get pictures via email frequently.

> I'm headed down there in less than two weeks, first to see my son

out in Boone and then to my sister's so I'll be able to see for

myself how it's coming along. I can't wait!

> Hope everyone is having a great weekend and feeling well. It's a

beautiful day here and I'm going to do my best to enjoy it.

>

> Kerry, haven't seen you post for a couple of days...the last post

I remember you mentioned the O2 company was on their way. How is it

going? I know we're all thinking of you!!

>

> Beth in NY Fibrotic NSIP 06/06

>

> "At the evening of life we shall be judged on our love."

> St of the Cross

>

No virus found in this incoming message.

Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.15/949 - Release Date: 8/12/2007 11:03 AM

[Guest guest]

Kerry, I will add my " I hate THE O2 " to all the others who posted

today.

I hate dragging the 65+ of tubing around my down stairs...I get caught

on kitchen cabinet knobs all the time. I hate going to sleep with the

nose hose !!!

I get caught on door ways and I hang myself on a daily basis...but I

can get around...I can get stuff done. I use liquid o2 and the Helios

portable

for getting out. I hate lugging the portable Helios...after 2 years

I still feel self-conscience.But again...I'm getting out...doing my

thing..whatever that may be.

Considering the alternative..I'll probably always hate it...but I'm

dealing day by day

Just live your life...love your kids and husband..and realize that the

o2 keeps you here!!!!

Z fibriotic NSIP/05

Z fibriotic NSIP/o5/PA

Potter, reader,carousel lover and

MomMom to Darah

“I’m gonna be iron like a lion in Zion”

Bob Marley

Kerry wrote:

MB,

It looks like the house is really coming along. That's so nice that

you are able to receive these updates. I LOVE, LOVE, LOVE screened

in porches. In our initial addition plans we had a sunroom planned

for the entire length of the back of the bedroom and bathroom. We

had to downscale though. I do love the back windows that open out

to the backyard, but it would have been nice to have the screened

in/glassed in room.

I haven't been on since the o2 was delivered. I don't exactly know

what to say. Well, yes I do... I HATE IT! When it was delivered my

daughter sadly said I don't want it, I want my old Mommy back. I

told her hopefully I'd feel better w/ this and that would be

better. I don't, I HATE IT. I hate it even more than when I had it

for overnight w/ the pregnancies. It was bad enough just for

bedtime, but to actually attempt to be mobile is ridiculous. I

don't know how some of you do it. The noise of the converter is

insane. It's not the noise actually it's the mmm, MMM, mmm, mmm,

MMM, mmm. I have a brand new Airsep, supposed to be one of the

quietest, < 40 decibels, its the change in tone as it's running the

cycles, the purge, etc. UGGGG! I can't sleep unless it's behind a

closed door. I can't close my bedroom door because I have to hear

the kids. I put it in my walk in closet because it's big and has

A/C and it still was like a sauna in the morning, burning UP!

Finally we put it out in the entry and it's perfect except you know

what 50 ft. ain't what you think it is. It reaches my bed, but

that's it, I can't even get up to pee. For me to reach from one end

of the house to the other it has to be in the middle room, so I'd

have to move this thing for daytime and nighttime. At night I wake

up about a million times w/ it on trying to readjust. It makes my

ears sore if I lay on my side. I think I'm snoring and

mouthbreathing if I sleep on my back. Walking around I jerk my head

off and my ears were sore the first day. Did I mention I hate

it!!! For coughing it's next to useless because I have to blow my

nose after every cough and spit. I did try to incorporate it last

night w/ coughing session hoping at least to make the recovery/post

coughing better. The only time I don't mind it is sitting down

watching tv or here at the computer... and guess what I don't need

it then. I need it when I am doing chores, yet I'm expending more

energy just to move around w/ it. I need it when I get up to pee,

yet it won't reach and even if it did it disturbs my sleep so that

doesn't seem like a good tradeoff.

I do like the portable. I received the POC I requested, the < 5 lb.

Airsep Freestyle. I didn't think I'd like the pulse, but it doesn't

bother me at all. This thing is very quiet and really portable. I

braved it out to the eye doctor and another day to a 2 hour grocery

trip to Meijer. Originally, I was almost brought to tears thinking

about going out w/ it and talking to my husband. Then I realize I

actually have it easier then most because of my age people might not

automatically assume "I've smoked for 40 years and that it's all my

fault." I told my husband about some of the stories here w/ people

telling their kids "see that's what happens when you smoke". My

husband said he'd absolutely go postal if somebody said that in his

presence.

So, here's the bottom line I went out w/ it and was actually okay.

I hate the home concentrator, I like the POC, but well I just don't

feel like they're worth the hassle. For the most part it seems

easier to pace myself then deal w/ these. I've used it 3 nights out

of 4 and the one I didn't I slept best. I can see myself using it

shopping, but not many other things.

I got a call from my pulmo office on Friday, but I missed it as I

was out at a framing store (without my POC since I wasn't running

around). I assume the call was about whether BCBS covers transplant

at Jewish and whether or not they can get me in early at the other

doc.

Made appointment for another company to come out and clean our air

vents, had it done recently by Sears but in painting my husband

found something yucky looking on inside of one of the vent covers.

Seems like a good idea to have one of these guys come out and check

out our environments for molds, etc. Any suggestion on finding one

and if joe schmo can get one or is this a medical only prescribed

house evaluation?

Thats all folks!

Kerry (nose hose hater!)

IPF '01

>

> Hi all,

> Just wanted to say I posted some pictures of the progress the

builder is making on our new house in Durham, NC. It's very

exciting to see it going up. Between the builder and my sister we

get pictures via email frequently.

> I'm headed down there in less than two weeks, first to see my son

out in Boone and then to my sister's so I'll be able to see for

myself how it's coming along. I can't wait!

> Hope everyone is having a great weekend and feeling well. It's a

beautiful day here and I'm going to do my best to enjoy it.

>

> Kerry, haven't seen you post for a couple of days...the last post

I remember you mentioned the O2 company was on their way. How is it

going? I know we're all thinking of you!!

>

> Beth in NY Fibrotic NSIP 06/06

>

> "At the evening of life we shall be judged on our love."

> St of the Cross

>

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