6MW Test

July 10, 2009

This is crazy. I went last Mon for a 6MW test. I already told you about the

Tech. wanted to give me PFT's but I insisted that I was there for 6MW test.

Well I had the test. At 1 min. dropped to 90, at 2 min. dropped to 85, every

min. after kept dropping. Ended 6 min. at 76. Monday evening I had 02

delivered to house. They brought me 7 D tanks, and a Concentrator for the

house. I asked about something smaller for when I go away, they said I had to

get a new RX from my DR.

Tues. I used 02 when I went to Rehab, still dropped to 88 on Nustep. I am on 2

lpm with exertion. Tried calling my Dr. to find out if I am supposed to use 02

at night. Thur. at Rehab again I dropped to 88 on Nustep, and 86 with hand

weights. Called my Dr. again. Now this is the Crazy part, Pulmo Dr can't find

anything that they Rx the 02. Nurse said she would check around and find out

what is going on. Called me back later and said my Primary Care Dr. Rx the 02.

I have never seen her for any of my breathing problems,the only thing they did

id schedule my 6mw test,(wrong I might add) Now I find out that they did my 6mw

test wrong. They should have stopped when I dropped to 85, gave me 02, then did

the rest of the test with 02, to find out how much I should be using. Dr.

thinks I should be on 3 lpm not 2 lpm. Now I have to go back and have another

6MW test done next week. CRAZY

Now that I am done Ranting, I have some questions about 02 This is all new to

me. I lead a very busy life with 2 children and 3 grandchildren that live with

me. I am gone away from home a good part of the day,

What type of 02 does everyone use?

What about liquid? How hard is it to fill?

Please help.

Jo Ann 53 MI UIP 9/07

July 10, 2009

Jo Ann- I am on liquid and much prefer it to compressed air. First, My electric bill does not go up and it is soundless. As to being away from home. I have a MARATHON Portable and I can be away from home for about 8 hours if I use it on pulse. Pulse is when you breathe in you get a shot of air. I really like it. It is very easy to fill the tank. You just take it and put it on top the O2 tank and press down. They will show you how to do it should you decide on liquid. The portable when full weights about 10 lbs and I set it on the seat when I drive and if I am going to be doing a lot of walking I use it as a backpack. JOyce

Rudy AZ birds

6MW Test

This is crazy. I went last Mon for a 6MW test. I already told you about the Tech. wanted to give me PFT's but I insisted that I was there for 6MW test. Well I had the test. At 1 min. dropped to 90, at 2 min. dropped to 85, every min. after kept dropping. Ended 6 min. at 76. Monday evening I had 02 delivered to house. They brought me 7 D tanks, and a Concentrator for the house. I asked about something smaller for when I go away, they said I had to get a new RX from my DR.Tues. I used 02 when I went to Rehab, still dropped to 88 on Nustep. I am on 2 lpm with exertion. Tried calling my Dr. to find out if I am supposed to use 02 at night. Thur. at Rehab again I dropped to 88 on Nustep, and 86 with hand weights. Called my Dr. again. Now this is the Crazy part, Pulmo Dr can't find anything that they Rx the 02. Nurse said she would check around and find out what is going on. Called me back later and said my Primary Care Dr. Rx the 02. I have never seen her for any of my breathing problems,the only thing they did id schedule my 6mw test,(wrong I might add) Now I find out that they did my 6mw test wrong. They should have stopped when I dropped to 85, gave me 02, then did the rest of the test with 02, to find out how much I should be using. Dr. thinks I should be on 3 lpm not 2 lpm. Now I have to go back and have another 6MW test done next week. CRAZYNow that I am done Ranting, I have some questions about 02 This is all new to me. I lead a very busy life with 2 children and 3 grandchildren that live with me. I am gone away from home a good part of the day,What type of 02 does everyone use?What about liquid? How hard is it to fill?Please help.Jo Ann 53 MI UIP 9/07

July 10, 2009

Jo Ann,

What a nightmare! I can't imagine anyone doing a 6 minute walk without oxygen and finishing with a sat at 76. Who on earth was giving you the test? I'm sorry but I'm just boggled by this situation. As much as I know it's a royal pain I'm very glad you are going to have another 6MW that will (hopefully) be done properly.

I use a concentrator and tanks similar to what you've had delivered. I use the concentrator with 70 feet of tubing around home and tanks with a conserver when I'm out and about. This is what I've been using since I was diagnose 3 years ago and I've become very comfortable with it.

Lots of people on the board use liquid though and are equally happy with it. (I did try liquid once for a few weeks and it just wasn't for me at this point. At some point I may revisit this decision) But others will be able to give you much more info about liquid than I can.

Please take care of yourself. I know you are busy and have children to care for. But the reality is Jo Ann you will have no choice but to slow down. Trust me when I tell you I know how difficult this is. I've been there and run into the brick wall of my new limitations. There is a "new normal" and you will find it but it will take a bit of time. I understand you have responsibilities and are just trying to do what must get done. Just know that if you don't take care of yourself you won't be much good to anyone.

Be good to you and be patient!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, July 10, 2009 5:47:23 PMSubject: 6MW Test

This is crazy. I went last Mon for a 6MW test. I already told you about the Tech. wanted to give me PFT's but I insisted that I was there for 6MW test. Well I had the test. At 1 min. dropped to 90, at 2 min. dropped to 85, every min. after kept dropping. Ended 6 min. at 76. Monday evening I had 02 delivered to house. They brought me 7 D tanks, and a Concentrator for the house. I asked about something smaller for when I go away, they said I had to get a new RX from my DR.Tues. I used 02 when I went to Rehab, still dropped to 88 on Nustep. I am on 2 lpm with exertion. Tried calling my Dr. to find out if I am supposed to use 02 at night. Thur. at Rehab again I dropped to 88 on Nustep, and 86 with hand weights. Called my Dr. again. Now this is the Crazy part, Pulmo Dr can't find anything that they Rx the 02. Nurse said she would check around and find out what is going on. Called me back later and said my Primary Care Dr. Rx the 02. I have never seen

her for any of my breathing problems,the only thing they did id schedule my 6mw test,(wrong I might add) Now I find out that they did my 6mw test wrong. They should have stopped when I dropped to 85, gave me 02, then did the rest of the test with 02, to find out how much I should be using. Dr. thinks I should be on 3 lpm not 2 lpm. Now I have to go back and have another 6MW test done next week. CRAZYNow that I am done Ranting, I have some questions about 02 This is all new to me. I lead a very busy life with 2 children and 3 grandchildren that live with me. I am gone away from home a good part of the day,What type of 02 does everyone use?What about liquid? How hard is it to fill?Please help.Jo Ann 53 MI UIP 9/07

July 10, 2009

Jo Ann... We are all so different, that is the reason we all need an Rx from Dr. for O2...S/he will know what our needs are.

This board teaches us to be our own best advocate...now you know that if you are being tested and your sats start dropping, if THEY don't stop the testing YOU stop the testing...no matter who/where it is.

Yes, some of these things seem crazy alright.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

6MW Test

This is crazy. I went last Mon for a 6MW test. I already told you about the Tech. wanted to give me PFT's but I insisted that I was there for 6MW test. Well I had the test. At 1 min. dropped to 90, at 2 min. dropped to 85, every min. after kept dropping. Ended 6 min. at 76. Monday evening I had 02 delivered to house. They brought me 7 D tanks, and a Concentrator for the house. I asked about something smaller for when I go away, they said I had to get a new RX from my DR.Tues. I used 02 when I went to Rehab, still dropped to 88 on Nustep. I am on 2 lpm with exertion. Tried calling my Dr. to find out if I am supposed to use 02 at night. Thur. at Rehab again I dropped to 88 on Nustep, and 86 with hand weights. Called my Dr. again. Now this is the Crazy part, Pulmo Dr can't find anything that they Rx the 02. Nurse said she would check around and find out what is going on. Called me back later and said my Primary Care Dr. Rx the 02. I have never seen her for any of my breathing problems,the only thing they did id schedule my 6mw test,(wrong I might add) Now I find out that they did my 6mw test wrong. They should have stopped when I dropped to 85, gave me 02, then did the rest of the test with 02, to find out how much I should be using. Dr. thinks I should be on 3 lpm not 2 lpm. Now I have to go back and have another 6MW test done next week. CRAZYNow that I am done Ranting, I have some questions about 02 This is all new to me. I lead a very busy life with 2 children and 3 grandchildren that live with me. I am gone away from home a good part of the day,What type of 02 does everyone use?What about liquid? How hard is it to fill?Please help.Jo Ann 53 MI UIP 9/07

July 10, 2009

Jo Ann,Are those people idiots? At 76 you are doing damage to your internal organs. Every little bit adds up!I use 6-8 lts at home and 5 ltrs at work. I have a concentrator at home (10 ltr) and one at work (5 ltr) I still work 40 hours a week as Im an accountant and sit on me bum all day I do have a lot of trouble with moving so I have a mobility chair for going to the zoo or stuff like that and I have the medium large tanks I think they are MLsomethings with a puffer that goes to 5 for short walks like going to the doctor or things like that. I have never let the doctors tell me what liter flow I should be on, If I know my sats are dropping (watch your fingernails the bed get purplish blue) the o2 goes up. Get an oximeter, it will be your best friend. I don't have liquid only because the o2 people Humana wants me to use don't do liquid. I refuse to let the lack of o2 keep me from going somewhere. Hang in there!Dyane, Phx, AZ IPF 02>> This is crazy. I went last Mon for a 6MW test. I already told you about the Tech. wanted to give me PFT's but I insisted that I was there for 6MW test. Well I had the test. At 1 min. dropped to 90, at 2 min. dropped to 85, every min. after kept dropping. Ended 6 min. at 76. Monday evening I had 02 delivered to house. They brought me 7 D tanks, and a Concentrator for the house. I asked about something smaller for when I go away, they said I had to get a new RX from my DR.> Tues. I used 02 when I went to Rehab, still dropped to 88 on Nustep. I am on 2 lpm with exertion. Tried calling my Dr. to find out if I am supposed to use 02 at night. Thur. at Rehab again I dropped to 88 on Nustep, and 86 with hand weights. Called my Dr. again. Now this is the Crazy part, Pulmo Dr can't find anything that they Rx the 02. Nurse said she would check around and find out what is going on. Called me back later and said my Primary Care Dr. Rx the 02. I have never seen her for any of my breathing problems,the only thing they did id schedule my 6mw test,(wrong I might add) Now I find out that they did my 6mw test wrong. They should have stopped when I dropped to 85, gave me 02, then did the rest of the test with 02, to find out how much I should be using. Dr. thinks I should be on 3 lpm not 2 lpm. Now I have to go back and have another 6MW test done next week. CRAZY> > Now that I am done Ranting, I have some questions about 02 This is all new to me. I lead a very busy life with 2 children and 3 grandchildren that live with me. I am gone away from home a good part of the day,> What type of 02 does everyone use?> What about liquid? How hard is it to fill?> Please help.> > Jo Ann 53 MI UIP 9/07>

July 10, 2009

Dyane,

You are an awesome testimony that even the need for higher flow need not deter us from doing the things we want/need to do. We may have to do things more slowly or in a different way but we can do them. Thanks for the reminder!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, July 10, 2009 7:17:31 PMSubject: Re: 6MW Test

Jo Ann,Are those people idiots? At 76 you are doing damage to your internal organs. Every little bit adds up!I use 6-8 lts at home and 5 ltrs at work. I have a concentrator at home (10 ltr) and one at work (5 ltr) I still work 40 hours a week as Im an accountant and sit on me bum all day I do have a lot of trouble with moving so I have a mobility chair for going to the zoo or stuff like that and I have the medium large tanks I think they are MLsomethings with a puffer that goes to 5 for short walks like going to the doctor or things like that. I have never let the doctors tell me what liter flow I should be on, If I know my sats are dropping (watch your fingernails the bed get purplish blue) the o2 goes up. Get an oximeter, it will be your best friend. I don't have liquid only because the o2 people Humana

wants me to use don't do liquid. I refuse to let the lack of o2 keep me from going somewhere. Hang in there!Dyane, Phx, AZ IPF 02>> This is crazy. I went last Mon for a 6MW test. I already told you about the Tech. wanted to give me PFT's but I insisted that I was there for 6MW test. Well I had the test. At 1 min. dropped to 90, at 2 min. dropped to 85, every min. after kept dropping. Ended 6 min. at 76. Monday evening I had 02 delivered to house. They brought me 7 D tanks, and a Concentrator for the house. I asked about something smaller for when I go away, they said I had to get a new RX from my DR.> Tues. I used 02 when I went to Rehab, still dropped to 88 on Nustep. I am on 2 lpm with exertion. Tried calling my Dr. to find out if I am supposed to use 02 at night. Thur. at Rehab again I dropped to 88 on Nustep,

and 86 with hand weights. Called my Dr. again. Now this is the Crazy part, Pulmo Dr can't find anything that they Rx the 02. Nurse said she would check around and find out what is going on. Called me back later and said my Primary Care Dr. Rx the 02. I have never seen her for any of my breathing problems,the only thing they did id schedule my 6mw test,(wrong I might add) Now I find out that they did my 6mw test wrong. They should have stopped when I dropped to 85, gave me 02, then did the rest of the test with 02, to find out how much I should be using. Dr. thinks I should be on 3 lpm not 2 lpm. Now I have to go back and have another 6MW test done next week. CRAZY> > Now that I am done Ranting, I have some questions about 02 This is all new to me. I lead a very busy life with 2 children and 3 grandchildren that live with me. I am gone away from home a good part of the day,> What type of 02 does everyone use?> What about

liquid? How hard is it to fill?> Please help.> > Jo Ann 53 MI UIP 9/07>

July 10, 2009

Jo ann

your body tells you when you need to increase the liters per minute

i tell my doctor how many liters i am on

with this disease it varies alot

you can sit without o2, but as soon as you move, it drops

i fill the liquid unit (marathon) every day, i did the same with the little Helios too, but eventually i needed more O2 than it provided

also the marathon does both pulse to 4 lpm, and constant to 6 lpm

filling the liquid tanks is very easy

talk to the manager at your supplier and discuss your needs

you might have to do some experimenting

i started with the Helios, complained about it, they brought the little green tanks, they were much too heavy, so i went back to the Helios and then "graduated" to the Marathon

don't want any more "graduations" lol

on days when i am extremely active or out of the house a lot, i might have to fill the marathon a second time -- the length of time the o2 lasts varies with how many liters you use

2 lpm on demand can last all day

3 or 4 lpm on constant lasts about an hour or two

{these are just estimates)

Jo Ann do you have your own oximeter?

you can experiment using the oximeter with the various lpm's with the various activities

then give that info to your docs

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: 6MW TestTo: Breathe-Support Date: Friday, July 10, 2009, 5:47 PM

This is crazy. I went last Mon for a 6MW test. I already told you about the Tech. wanted to give me PFT's but I insisted that I was there for 6MW test. Well I had the test. At 1 min. dropped to 90, at 2 min. dropped to 85, every min. after kept dropping. Ended 6 min. at 76. Monday evening I had 02 delivered to house. They brought me 7 D tanks, and a Concentrator for the house. I asked about something smaller for when I go away, they said I had to get a new RX from my DR.Tues. I used 02 when I went to Rehab, still dropped to 88 on Nustep. I am on 2 lpm with exertion. Tried calling my Dr. to find out if I am supposed to use 02 at night. Thur. at Rehab again I dropped to 88 on Nustep, and 86 with hand weights. Called my Dr. again. Now this is the Crazy part, Pulmo Dr can't find anything that they Rx the 02. Nurse said she would check around and find out what is going on. Called me back later and said my Primary Care Dr. Rx the 02. I have never seen

her for any of my breathing problems,the only thing they did id schedule my 6mw test,(wrong I might add) Now I find out that they did my 6mw test wrong. They should have stopped when I dropped to 85, gave me 02, then did the rest of the test with 02, to find out how much I should be using. Dr. thinks I should be on 3 lpm not 2 lpm. Now I have to go back and have another 6MW test done next week. CRAZYNow that I am done Ranting, I have some questions about 02 This is all new to me. I lead a very busy life with 2 children and 3 grandchildren that live with me. I am gone away from home a good part of the day,What type of 02 does everyone use?What about liquid? How hard is it to fill?Please help.Jo Ann 53 MI UIP 9/07

July 10, 2009

i would love to be working, but i retired from working with kids and we all know they tend to be "little petrie dishes" (they carry lots of germs for those of you who don't get it)

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: 6MW TestTo: Breathe-Support Date: Friday, July 10, 2009, 7:28 PM

Dyane,

You are an awesome testimony that even the need for higher flow need not deter us from doing the things we want/need to do. We may have to do things more slowly or in a different way but we can do them. Thanks for the reminder!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: dyanebillings <dyane.billings@ ball-mcgraw. com>To: Breathe-Support@ yahoogroups. comSent: Friday, July 10, 2009 7:17:31 PMSubject: Re: 6MW Test

Jo Ann,Are those people idiots? At 76 you are doing damage to your internal organs. Every little bit adds up!I use 6-8 lts at home and 5 ltrs at work. I have a concentrator at home (10 ltr) and one at work (5 ltr) I still work 40 hours a week as Im an accountant and sit on me bum all day I do have a lot of trouble with moving so I have a mobility chair for going to the zoo or stuff like that and I have the medium large tanks I think they are MLsomethings with a puffer that goes to 5 for short walks like going to the doctor or things like that. I have never let the doctors tell me what liter flow I should be on, If I know my sats are dropping (watch your fingernails the bed get purplish blue) the o2 goes up. Get an oximeter, it will be your best friend. I don't have liquid only because the o2 people Humana

wants me to use don't do liquid. I refuse to let the lack of o2 keep me from going somewhere. Hang in there!Dyane, Phx, AZ IPF 02>> This is crazy. I went last Mon for a 6MW test. I already told you about the Tech. wanted to give me PFT's but I insisted that I was there for 6MW test. Well I had the test. At 1 min. dropped to 90, at 2 min. dropped to 85, every min. after kept dropping. Ended 6 min. at 76. Monday evening I had 02 delivered to house. They brought me 7 D tanks, and a Concentrator for the house. I asked about something smaller for when I go away, they said I had to get a new RX from my DR.> Tues. I used 02 when I went to Rehab, still dropped to 88 on Nustep. I am on 2 lpm with exertion. Tried calling my Dr. to find out if I am supposed to use 02 at night. Thur. at Rehab again I dropped to 88 on Nustep,

and 86 with hand weights. Called my Dr. again. Now this is the Crazy part, Pulmo Dr can't find anything that they Rx the 02. Nurse said she would check around and find out what is going on. Called me back later and said my Primary Care Dr. Rx the 02. I have never seen her for any of my breathing problems,the only thing they did id schedule my 6mw test,(wrong I might add) Now I find out that they did my 6mw test wrong. They should have stopped when I dropped to 85, gave me 02, then did the rest of the test with 02, to find out how much I should be using. Dr. thinks I should be on 3 lpm not 2 lpm. Now I have to go back and have another 6MW test done next week. CRAZY> > Now that I am done Ranting, I have some questions about 02 This is all new to me. I lead a very busy life with 2 children and 3 grandchildren that live with me. I am gone away from home a good part of the day,> What type of 02 does everyone use?> What about

liquid? How hard is it to fill?> Please help.> > Jo Ann 53 MI UIP 9/07>

July 10, 2009

Who believes that hard times help us appreciate the good times even more.

Subject: 6MW TestTo: Breathe-Support Date: Friday, July 10, 2009, 9:47 PM

This is crazy. I went last Mon for a 6MW test. I already told you about the Tech. wanted to give me PFT's but I insisted that I was there for 6MW test. Well I had the test. At 1 min. dropped to 90, at 2 min. dropped to 85, every min. after kept dropping. Ended 6 min. at 76. Monday evening I had 02 delivered to house. They brought me 7 D tanks, and a Concentrator for the house. I asked about something smaller for when I go away, they said I had to get a new RX from my DR.Tues. I used 02 when I went to Rehab, still dropped to 88 on Nustep. I am on 2 lpm with exertion. Tried calling my Dr. to find out if I am supposed to use 02 at night. Thur. at Rehab again I dropped to 88 on Nustep, and 86 with hand weights. Called my Dr. again. Now this is the Crazy part, Pulmo Dr can't find anything that they Rx the 02. Nurse said she would check around and find out what is going on. Called me back later and said my Primary Care Dr. Rx the 02. I have never seen

her for any of my breathing problems,the only thing they did id schedule my 6mw test,(wrong I might add) Now I find out that they did my 6mw test wrong. They should have stopped when I dropped to 85, gave me 02, then did the rest of the test with 02, to find out how much I should be using. Dr. thinks I should be on 3 lpm not 2 lpm. Now I have to go back and have another 6MW test done next week. CRAZYNow that I am done Ranting, I have some questions about 02 This is all new to me. I lead a very busy life with 2 children and 3 grandchildren that live with me. I am gone away from home a good part of the day,What type of 02 does everyone use?What about liquid? How hard is it to fill?Please help.Jo Ann 53 MI UIP 9/07

July 10, 2009

Jo Ann,

When I was first dxd with IPF, all of this was so new. I no longer need o2, but I remember so well how frustrating the liquid o2 was when considering mobility. When away from the main tank, I was always afraid of running out of the liquid o2 from the reservoir of the portable unit. I also feared battery problems. I had to focus too much on staying put. The tanks are more universally available, and I knew how much I was carring and approximately how long it would last. My experience with liquid o2 was not satisfactory.

Now on your 6MW test, I remember so well Dr. Lasky watching me on the treadmill with 2 liters per minute. When I dropped below 84%, he told the operator to shut it down==he had seen enough. I didn't have to retake any kind of test to get oxygen as long as I needed it and took the routine PFTs. Once it is quite evident that O2 is required by your pulmonologist, I know of no reason that you should retake the test.

One thing I do remember is that I almost was allowed to leave the hospital following my lung biopsy without any oxygen. I required it for 9 months following. I know how frustrating it is. I kept having to remind myself that I would use less oxygen if I could stay cool; I know so well easier said than done. This first phase will pass. Relax as much as you can until you have the O2 to carry on as you know you can. You bring back so many memories, and should I live longer, these times will come again. Be good to yourself and remember that unless you have IPF, there is no way to understand. So hard to adapt to others' time table. Take good care of yourself.

Jerry/Mississippi/IPF/dx April 05Who believes that hard times help us appreciate the good times even more.

Subject: 6MW TestTo: Breathe-Support Date: Friday, July 10, 2009, 9:47 PM

This is crazy. I went last Mon for a 6MW test. I already told you about the Tech. wanted to give me PFT's but I insisted that I was there for 6MW test. Well I had the test. At 1 min. dropped to 90, at 2 min. dropped to 85, every min. after kept dropping. Ended 6 min. at 76. Monday evening I had 02 delivered to house. They brought me 7 D tanks, and a Concentrator for the house. I asked about something smaller for when I go away, they said I had to get a new RX from my DR.Tues. I used 02 when I went to Rehab, still dropped to 88 on Nustep. I am on 2 lpm with exertion. Tried calling my Dr. to find out if I am supposed to use 02 at night. Thur. at Rehab again I dropped to 88 on Nustep, and 86 with hand weights. Called my Dr. again. Now this is the Crazy part, Pulmo Dr can't find anything that they Rx the 02. Nurse said she would check around and find out what is going on. Called me back later and said my Primary Care Dr. Rx the 02. I have never seen

her for any of my breathing problems,the only thing they did id schedule my 6mw test,(wrong I might add) Now I find out that they did my 6mw test wrong. They should have stopped when I dropped to 85, gave me 02, then did the rest of the test with 02, to find out how much I should be using. Dr. thinks I should be on 3 lpm not 2 lpm. Now I have to go back and have another 6MW test done next week. CRAZYNow that I am done Ranting, I have some questions about 02 This is all new to me. I lead a very busy life with 2 children and 3 grandchildren that live with me. I am gone away from home a good part of the day,What type of 02 does everyone use?What about liquid? How hard is it to fill?Please help.Jo Ann 53 MI UIP 9/07

July 10, 2009

Jerry,

How have you managed to improve so much that you no longer need oxygen?

I think that is so great - would love to hear how you did it?

Dorothy, Fayetteville, GA

UIP - 7/05

>

> Subject: 6MW Test

> To: Breathe-Support

> Date: Friday, July 10, 2009, 9:47 PM

>

> This is crazy. I went last Mon for a 6MW test. I already told you about the

Tech. wanted to give me PFT's but I insisted that I was there for 6MW test. Well

I had the test. At 1 min. dropped to 90, at 2 min. dropped to 85, every min.

after kept dropping. Ended 6 min. at 76. Monday evening I had 02 delivered to

house. They brought me 7 D tanks, and a Concentrator for the house. I asked

about something smaller for when I go away, they said I had to get a new RX from

my DR.

> Tues. I used 02 when I went to Rehab, still dropped to 88 on Nustep. I am on 2

lpm with exertion. Tried calling my Dr. to find out if I am supposed to use 02

at night. Thur. at Rehab again I dropped to 88 on Nustep, and 86 with hand

weights. Called my Dr. again. Now this is the Crazy part, Pulmo Dr can't find

anything that they Rx the 02. Nurse said she would check around and find out

what is going on. Called me back later and said my Primary Care Dr. Rx the 02. I

have never seen her for any of my breathing problems,the only thing they did id

schedule my 6mw test,(wrong I might add) Now I find out that they did my 6mw

test wrong. They should have stopped when I dropped to 85, gave me 02, then did

the rest of the test with 02, to find out how much I should be using. Dr. thinks

I should be on 3 lpm not 2 lpm. Now I have to go back and have another 6MW test

done next week. CRAZY

>

> Now that I am done Ranting, I have some questions about 02 This is all new to

me. I lead a very busy life with 2 children and 3 grandchildren that live with

me. I am gone away from home a good part of the day,

> What type of 02 does everyone use?

> What about liquid? How hard is it to fill?

> Please help.

>

> Jo Ann 53 MI UIP 9/07

>

July 10, 2009

Dorothy,

I am always so happy to tell such a story-book tale as mine.

When first diagnosed with IPF some 4 years ago, I was so out of breath. My PFTs before biopsy of June 13, 2005 were less than 60%. Two pulmonologists in MS, where I was first diagnosed said there was little that could be done. My best friend from Vicksburg was told that I might live 2 years and probably not much more at best. I knew full well that I could lessen the load on my heart and lungs by loosing about 50 extra pounds, and I knew I could do that, even on prednasone.

Also because I was desperate, I decided to look on the internet for possible studies I could become involved with. There was one at Tulane sponsored by National Institute of Health that Dr. ph Lasky was conducting. Unfortunately, or fortunately, my numbers were too low (below 50%) to be included in the Gleevec trial. And then there was Katrina also. Dr. Lasky spent some very valuable time with me and answered all my questions. I was sitting there on oxygen, the prescription for which had really run out, according to my supplier. A couple of minutes into the test, he told the RT to stop the treadmill, as I could maintain any speed without dangerously low O2 levels.

My best friend Flo from Vicksburg was there at my side for the biopsy day and night. She also drives me down every few months (My sight is poor.). I guess because Flo and Dr. Lasky were willing to spend their valuable time, I would do all I could.

I am down to between 155 and 165 pounds, and have been for more than 3 years. I walk at least 6 miles every day of the week. Last year, I took Dr. Lasky a picture of my biicycle ride in April. I also included A picture of myself of O2 as I was coming home from a walk in Vaidne at Mom and Dad's. He has them on his bulletin board at tulane. He said to me one day, "This is why I do what I do." I suppose you could say I am driven. Last October, I finished the first day of the Multiple Sclerosis Bike Ride here in Mississippi. Each time I go down to Tulane now, I am almost too excited to properly take my PFTs. As long as life is this good, I will keep trying. I feel that this is borrowed time. Each time I visit Tulane, Dr. Lasky asks me if I remember the first time I saw him 4 years ago. How can I forget?

I should not leave any one with the idea that my lungs are OK. They are far from it. I have managed to improve all other areas of my physical and mental self to help compensate for my weak lungs.

Jerry/Mississippi/IPF/dx April 05

Who believes that hard times help us appreciate the good times even more.

Subject: Re: 6MW TestTo: Breathe-Support Date: Saturday, July 11, 2009, 1:21 AM

Jerry,How have you managed to improve so much that you no longer need oxygen?I think that is so great - would love to hear how you did it?Dorothy, Fayetteville, GAUIP - 7/05> > > From: Jo Ann Barrett <joann.butterflies@ ...>> Subject: 6MW Test> To: Breathe-Support@ yahoogroups. com> Date: Friday, July 10, 2009, 9:47 PM> > > > > > > > > This is crazy. I went last Mon for a 6MW

test. I already told you about the Tech. wanted to give me PFT's but I insisted that I was there for 6MW test. Well I had the test. At 1 min. dropped to 90, at 2 min. dropped to 85, every min. after kept dropping. Ended 6 min. at 76. Monday evening I had 02 delivered to house. They brought me 7 D tanks, and a Concentrator for the house. I asked about something smaller for when I go away, they said I had to get a new RX from my DR.> Tues. I used 02 when I went to Rehab, still dropped to 88 on Nustep. I am on 2 lpm with exertion. Tried calling my Dr. to find out if I am supposed to use 02 at night. Thur. at Rehab again I dropped to 88 on Nustep, and 86 with hand weights. Called my Dr. again. Now this is the Crazy part, Pulmo Dr can't find anything that they Rx the 02. Nurse said she would check around and find out what is going on. Called me back later and said my Primary Care Dr. Rx the 02. I have never seen her for any of my breathing

problems,the only thing they did id schedule my 6mw test,(wrong I might add) Now I find out that they did my 6mw test wrong. They should have stopped when I dropped to 85, gave me 02, then did the rest of the test with 02, to find out how much I should be using. Dr. thinks I should be on 3 lpm not 2 lpm. Now I have to go back and have another 6MW test done next week. CRAZY> > Now that I am done Ranting, I have some questions about 02 This is all new to me. I lead a very busy life with 2 children and 3 grandchildren that live with me. I am gone away from home a good part of the day,> What type of 02 does everyone use?> What about liquid? How hard is it to fill?> Please help.> > Jo Ann 53 MI UIP 9/07>

July 10, 2009

Who believes that hard times help us appreciate the good times even more.

Subject: Re: 6MW TestTo: Breathe-Support Date: Saturday, July 11, 2009, 1:21 AM

Jerry,How have you managed to improve so much that you no longer need oxygen?I think that is so great - would love to hear how you did it?Dorothy, Fayetteville, GAUIP - 7/05> > > From: Jo Ann Barrett <joann.butterflies@ ...>> Subject: 6MW Test> To: Breathe-Support@ yahoogroups. com> Date: Friday, July 10, 2009, 9:47 PM> > > > > > > > > This is crazy. I went last Mon for a 6MW

test. I already told you about the Tech. wanted to give me PFT's but I insisted that I was there for 6MW test. Well I had the test. At 1 min. dropped to 90, at 2 min. dropped to 85, every min. after kept dropping. Ended 6 min. at 76. Monday evening I had 02 delivered to house. They brought me 7 D tanks, and a Concentrator for the house. I asked about something smaller for when I go away, they said I had to get a new RX from my DR.> Tues. I used 02 when I went to Rehab, still dropped to 88 on Nustep. I am on 2 lpm with exertion. Tried calling my Dr. to find out if I am supposed to use 02 at night. Thur. at Rehab again I dropped to 88 on Nustep, and 86 with hand weights. Called my Dr. again. Now this is the Crazy part, Pulmo Dr can't find anything that they Rx the 02. Nurse said she would check around and find out what is going on. Called me back later and said my Primary Care Dr. Rx the 02. I have never seen her for any of my breathing

problems,the only thing they did id schedule my 6mw test,(wrong I might add) Now I find out that they did my 6mw test wrong. They should have stopped when I dropped to 85, gave me 02, then did the rest of the test with 02, to find out how much I should be using. Dr. thinks I should be on 3 lpm not 2 lpm. Now I have to go back and have another 6MW test done next week. CRAZY> > Now that I am done Ranting, I have some questions about 02 This is all new to me. I lead a very busy life with 2 children and 3 grandchildren that live with me. I am gone away from home a good part of the day,> What type of 02 does everyone use?> What about liquid? How hard is it to fill?> Please help.> > Jo Ann 53 MI UIP 9/07>

July 10, 2009

Jo Ann

Two words: NEW DOCTOR

Anyone who would let you walk to 76% in the first place, then not

getting you oxygen immediately.

>

> Jo Ann,

> What a nightmare! I can't imagine anyone doing a 6 minute walk without

oxygen and finishing with a sat at 76. Who on earth was giving you the

test? I'm sorry but I'm just boggled by this situation. As much as I

know it's a royal pain I'm very glad you are going to have another 6MW

that will (hopefully) be done properly.

>

> I use a concentrator and tanks similar to what you've had delivered. I

use the concentrator with 70 feet of tubing around home and tanks with a

conserver when I'm out and about. This is what I've been using since I

was diagnose 3 years ago and I've become very comfortable with it.

>

> Lots of people on the board use liquid though and are equally happy

with it. (I did try liquid once for a few weeks and it just wasn't for

me at this point. At some point I may revisit this decision) But others

will be able to give you much more info about liquid than I can.

>

> Please take care of yourself. I know you are busy and have children to

care for. But the reality is Jo Ann you will have no choice but to slow

down. Trust me when I tell you I know how difficult this is. I've been

there and run into the brick wall of my new limitations. There is a " new

normal " and you will find it but it will take a bit of time. I

understand you have responsibilities and are just trying to do what must

get done. Just know that if you don't take care of yourself you won't be

much good to anyone.

>

> Be good to you and be patient!

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

> ________________________________

> From: Jo Ann Barrett joann.butterflies@...

> To: Breathe-Support

> Sent: Friday, July 10, 2009 5:47:23 PM

> Subject: 6MW Test

>

> This is crazy. I went last Mon for a 6MW test. I already told you

about the Tech. wanted to give me PFT's but I insisted that I was there

for 6MW test. Well I had the test. At 1 min. dropped to 90, at 2 min.

dropped to 85, every min. after kept dropping. Ended 6 min. at 76.

Monday evening I had 02 delivered to house. They brought me 7 D tanks,

and a Concentrator for the house. I asked about something smaller for

when I go away, they said I had to get a new RX from my DR.

> Tues. I used 02 when I went to Rehab, still dropped to 88 on Nustep. I

am on 2 lpm with exertion. Tried calling my Dr. to find out if I am

supposed to use 02 at night. Thur. at Rehab again I dropped to 88 on

Nustep, and 86 with hand weights. Called my Dr. again. Now this is the

Crazy part, Pulmo Dr can't find anything that they Rx the 02. Nurse said

she would check around and find out what is going on. Called me back

later and said my Primary Care Dr. Rx the 02. I have never seen her for

any of my breathing problems,the only thing they did id schedule my 6mw

test,(wrong I might add) Now I find out that they did my 6mw test wrong.

They should have stopped when I dropped to 85, gave me 02, then did the

rest of the test with 02, to find out how much I should be using. Dr.

thinks I should be on 3 lpm not 2 lpm. Now I have to go back and have

another 6MW test done next week. CRAZY

>

> Now that I am done Ranting, I have some questions about 02 This is all

new to me. I lead a very busy life with 2 children and 3 grandchildren

that live with me. I am gone away from home a good part of the day,

> What type of 02 does everyone use?

> What about liquid? How hard is it to fill?

> Please help.

>

> Jo Ann 53 MI UIP 9/07

>

July 11, 2009

Jerry ... I'm popping in here to say I enjoyed what you wrote to Dorothy...

You did not respond to my last "letter"...did I offend you to suggest we take our personal chats to personal email? I didn't want to bore the board...

You are a story-book tale...you fit in well with all the other 'tales'.

Hi to you too, Dorothy.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

6MW Test> To: Breathe-Support@ yahoogroups. com> Date: Friday, July 10, 2009, 9:47 PM> > > > > > > > > This is crazy. I went last Mon for a 6MW test. I already told you about the Tech. wanted to give me PFT's but I insisted that I was there for 6MW test. Well I had the test. At 1 min. dropped to 90, at 2 min. dropped to 85, every min. after kept dropping. Ended 6 min. at 76. Monday evening I had 02 delivered to house. They brought me 7 D tanks, and a Concentrator for the house. I asked about something smaller for when I go away, they said I had to get a new RX from my DR.> Tues. I used 02 when I went to Rehab, still dropped to 88 on Nustep. I am on 2 lpm with exertion. Tried calling my Dr. to find out if I am supposed to use 02 at night. Thur. at Rehab again I dropped to 88 on Nustep, and 86 with hand weights. Called my Dr. again. Now this is the Crazy part, Pulmo Dr can't find anything that they Rx the 02. Nurse said she would check around and find out what is going on. Called me back later and said my Primary Care Dr. Rx the 02. I have never seen her for any of my breathing problems,the only thing they did id schedule my 6mw test,(wrong I might add) Now I find out that they did my 6mw test wrong. They should have stopped when I dropped to 85, gave me 02, then did the rest of the test with 02, to find out how much I should be using. Dr. thinks I should be on 3 lpm not 2 lpm. Now I have to go back and have another 6MW test done next week. CRAZY> > Now that I am done Ranting, I have some questions about 02 This is all new to me. I lead a very busy life with 2 children and 3 grandchildren that live with me. I am gone away from home a good part of the day,> What type of 02 does everyone use?> What about liquid? How hard is it to fill?> Please help.> > Jo Ann 53 MI UIP 9/07>

July 11, 2009

Thanks Beth,

I've always been the kind of " so what do we do next " type of person

because I just can't deal with sitting around feeling sorry for myself.

The youngest grandchildren have only known me with my o2 and they like

to take turns pushing my tank or riding with me on my chair. I figure

if its not a big deal to them, its not a giant deal to me. And yes they

are little snot nosed so and so but they know not to kiss Nanie if they

have a cold. I walk a fine line sometimes because I know I may not be

there for them later so I want to spend more time with them now. My

middle daughter and my 3 middle grandchildren may be moving to Ennis

Texas. My son-in-law works for PetsMart and may be promoted and if so

would have to move. Of course I would have to visit as its only an 16

hour drive. Lou really inspired me. She was dx the same year I

was and was on a higher flow and just lived every day with such joy. I

miss her. And you be careful miss mary beth! running out is too scary.

I LOVE YOU ALL THIS DAY

Dyane, Phx AZ IPF 02

> >

> > This is crazy. I went last Mon for a 6MW test. I already told you

about the Tech. wanted to give me PFT's but I insisted that I was there

for 6MW test. Well I had the test. At 1 min. dropped to 90, at 2 min.

dropped to 85, every min. after kept dropping. Ended 6 min. at 76.

Monday evening I had 02 delivered to house. They brought me 7 D tanks,

and a Concentrator for the house. I asked about something smaller for

when I go away, they said I had to get a new RX from my DR.

> > Tues. I used 02 when I went to Rehab, still dropped to 88 on Nustep.

I am on 2 lpm with exertion. Tried calling my Dr. to find out if I am