Re: Jane's Visit With the Pulmodude Yesterday

[Guest guest]

Jane,

I was so glad to sign on this morning and read some good news! I am so happy to

read about your stability. I'm also glad to see there are Pulmonary specialists

out there that take into consideration how difficult a so-called " simple " 6

minute walk can be for us. It's amazing the lengths to which they went to make

your walk safe and somewhat comfy!

My last 6mw was a nightmare as the nurse leaned against the wall with the

oximeter in her scrub pocket and a stop watch in her hand. I found myself

stopping in my tracks when I felt my O2 and heart rate going haywire. By the

time she got to me my o2 was in the low 80's and HR in the 190's. My 6MW turned

into a 1.5MW. I'm thinking I may tell my pulmodude about your positive

experience with your 6MW.

Best wishes from one GA peach to another!

33 FL

IPF dx 1/06

>

>

> Hi!

>

> I went to Emory yesterday and had all the tests and saw Dr. .

> The good news is that I am still stable and that is what I wanted to

> hear.

>

> I had an interesting experience with the 6 MW yesterday. The RT got out

> a rollator walker that had a basket under the set in the front of it,

> slightly sticking out. She took the O2 tank and set it in the middle

> in the basket of the walker and used a bungee cord to strap it in. I

> then used the walker to walk very fast. I was so impressed that I did

> not have to carry the O2 and when the walk was over, I had an instant

> seat available to sit down in. Now I know Joe goes to Dr. also

> and he has probably done a walking test like I did but I had never heard

> of it. Just wanted to share it with you all.

>

> Take care!

>

> Toodles!

>

> Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>

[Guest guest]

Hi Jane,

On one of my hospital stays, an RT recomended a rollator. My ins. co. approved a

walker but refused the rollator. My doc even asked for an exception explaining

that I needed the seat. They said no, only a regular walker. About a month

later, one of my neighbors got a new rollator and was going to throw away his

old one. But, the brakes didn't work. My son came over and rebuilt the brakes

for me.

The pulmo dude is starting me on O2. He said the same thing. Use the basket to

carry the tank instead of lugging it around myself. I love my rollator. It helps

me to get out and walk and when I get too winded, I can rest for a few minutes

until I feel better.

Nan 49, MASS

listed started in '82

PF '08

Asthma '09

>

>

> Hi!

>

> I went to Emory yesterday and had all the tests and saw Dr. .

> The good news is that I am still stable and that is what I wanted to

> hear.

>

> I had an interesting experience with the 6 MW yesterday. The RT got out

> a rollator walker that had a basket under the set in the front of it,

> slightly sticking out. She took the O2 tank and set it in the middle

> in the basket of the walker and used a bungee cord to strap it in. I

> then used the walker to walk very fast. I was so impressed that I did

> not have to carry the O2 and when the walk was over, I had an instant

> seat available to sit down in. Now I know Joe goes to Dr. also

> and he has probably done a walking test like I did but I had never heard

> of it. Just wanted to share it with you all.

>

> Take care!

>

> Toodles!

>

> Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>

[Guest guest]

,

How many liters of O2 are you on? Before I walked yesterday, the nurse & RT & myself discussed what liter flow I should be on. I told them that when I went to my exercise class that I was on a continous flow of 3 liters. So I was set on 3 liters and the lowest I dropped at one point was 92 which was acceptable. It sounds to me that the lady who is timing your walk is not paying much attention to you. The RT that takes good care of me will run up to me and look at my wrist whenever I had turned around to go back the other direction. If you have an oximeter, you can check yours at home when you are exercising. I check mine when I am exercising at my class. Then you could tell them before the next 6 MW what liter flow you put your O2 on when you exercise. , I am just wondering if you are on enough O2. If your sat drops, they should turn up the O2.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> >> > > > Hi!> > > > I went to Emory yesterday and had all the tests and saw Dr. . > > The good news is that I am still stable and that is what I wanted to> > hear.> > > > I had an interesting experience with the 6 MW yesterday. The RT got out> > a rollator walker that had a basket under the set in the front of it,> > slightly sticking out. She took the O2 tank and set it in the middle> > in the basket of the walker and used a bungee cord to strap it in. I> > then used the walker to walk very fast. I was so impressed that I did> > not have to carry the O2 and when the walk was over, I had an instant> > seat available to sit down in. Now I know Joe goes to Dr. also> > and he has probably done a walking test like I did but I had never heard> > of it. Just wanted to share it with you all.> > > > Take care!> > > > Toodles!> > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> >>

[Guest guest]

,

I have been thinking about the rollator since yesterday but I don't

know. Part of me says that I wouldn't be wearing myself out carrying

the Helios Marathon that I use. Another part of me worries what people

might say. Yep, I am worried about it in that regard. I know my sister

would laugh at me and make a funny comment. Other people might wonder

if I have gotten worse. But I did love walking without that tank. The

other aspect of this rollator is that my ex-step mother uses one and my

brother, sister and I do not get along with her at all. I would hate to

run into her when I was using a rollator.

Yes, I would love to have one. Is it easy to fold up and put in and out

of the car?

Toodles

Jane

> >

> >

> > Hi!

> >

> > I went to Emory yesterday and had all the tests and saw Dr. .

> > The good news is that I am still stable and that is what I wanted to

> > hear.

> >

> > I had an interesting experience with the 6 MW yesterday. The RT got

out

> > a rollator walker that had a basket under the set in the front of

it,

> > slightly sticking out. She took the O2 tank and set it in the middle

> > in the basket of the walker and used a bungee cord to strap it in. I

> > then used the walker to walk very fast. I was so impressed that I

did

> > not have to carry the O2 and when the walk was over, I had an

instant

> > seat available to sit down in. Now I know Joe goes to Dr. also

> > and he has probably done a walking test like I did but I had never

heard

> > of it. Just wanted to share it with you all.

> >

> > Take care!

> >

> > Toodles!

> >

> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

> >

>

[Guest guest]

At Penn the 6 min walk is done with 2 people

one person walks with me

the other one measures the time, distance, records the data, there is always a wheelchair available and an O2 tank just in case i need it

my first 6 min walk was on room air, and i have insisted that they all be done on room air

that way we are measuring apples to apples instead of apples to oranges

right now i am still able to do the 6 min walk on room and will continue to do so until my body tells me that i can't

besides it's a level surface in a climate controlled hallway, so it's relatively easy for me to do

take me outside into bad weather or up and down hills, then for sure i would not be able to do it on room air

this is a very weird disease!!!

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Jane's Visit With the Pulmodude YesterdayTo: Breathe-Support Date: Saturday, May 23, 2009, 9:44 AM

Jane, I was so glad to sign on this morning and read some good news! I am so happy to read about your stability. I'm also glad to see there are Pulmonary specialists out there that take into consideration how difficult a so-called "simple" 6 minute walk can be for us. It's amazing the lengths to which they went to make your walk safe and somewhat comfy!My last 6mw was a nightmare as the nurse leaned against the wall with the oximeter in her scrub pocket and a stop watch in her hand. I found myself stopping in my tracks when I felt my O2 and heart rate going haywire. By the time she got to me my o2 was in the low 80's and HR in the 190's. My 6MW turned into a 1.5MW. I'm thinking I may tell my pulmodude about your positive experience with your 6MW. Best wishes from one GA peach to another! 33 FLIPF dx 1/06>> > Hi!> > I went to Emory yesterday and had all the tests and saw Dr. . > The good news is that I am still stable and that is what I wanted to> hear.> > I had an interesting experience with the 6 MW yesterday. The RT got out> a rollator walker that had a basket under the set in the front of it,> slightly sticking out. She took the O2 tank and set it in the middle> in the basket of the walker and used a bungee cord to strap it in. I> then used the walker to walk very fast. I was so impressed that I did> not have to carry the O2 and when the walk was over, I had an instant> seat available to sit down in. Now I know Joe goes to Dr. also> and he has probably done a walking test like I

did but I had never heard> of it. Just wanted to share it with you all.> > Take care!> > Toodles!> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>

[Guest guest]

As many of you already know, i use a baby stroller for my O2 when walking the dog, going to the mall, etc

the helios was too heavy to carry, the marathon is too heavy to carry and the little green tanks hurt my back last year

when going to the supermarket, or any store that has a shopping cart, the portable O2 container goes right in the baby seat

carrying that thing around is very tiring

people who don't know me, look for the baby, and are surprised when they see the tank

sometimes, when I take both the Helios and the Marathon, like when going to a ball game, i tell people that they are fraternal twins LOL

so it you are not ready for a walker or rollator, this is a good option (in my opinion)

the thing with the seat is a great idea, sometimes i do feel like sitting down when pushing the stroller

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Jane's Visit With the Pulmodude YesterdayTo: Breathe-Support Date: Saturday, May 23, 2009, 5:35 PM

,I have been thinking about the rollator since yesterday but I don'tknow. Part of me says that I wouldn't be wearing myself out carryingthe Helios Marathon that I use. Another part of me worries what peoplemight say. Yep, I am worried about it in that regard. I know my sisterwould laugh at me and make a funny comment. Other people might wonderif I have gotten worse. But I did love walking without that tank. Theother aspect of this rollator is that my ex-step mother uses one and mybrother, sister and I do not get along with her at all. I would hate torun into her when I was using a rollator.Yes, I would love to have one. Is it easy to fold up and put in and outof the car?ToodlesJane> >> >> > Hi!> >> > I went to Emory yesterday and had all the tests and saw Dr. .> > The good news is that I am still stable and that is what I wanted to> > hear.> >> > I had an interesting experience with the 6 MW yesterday. The RT gotout> > a rollator walker that had a basket under the set in the front ofit,> > slightly sticking out. She took the O2 tank and set it in the middle> > in the basket of the walker and used a bungee cord to strap it in. I> > then used the walker to walk very fast. I was so impressed that Idid> > not have to carry the O2 and when the walk was over,

I had aninstant> > seat available to sit down in. Now I know Joe goes to Dr. also> > and he has probably done a walking test like I did but I had neverheard> > of it. Just wanted to share it with you all.> >> > Take care!> >> > Toodles!> >> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> >>

[Guest guest]

Hi Jane,

My rollator is a bit bulky to fold. I guess you could say it's like folding a

wheelchair and putting it in the car. But, it's not as heavy. In Massachusetts,

we have " The Ride " . It's a service run by the MBTA (public transportation). It's

for the disabled that can't use public transport. They come right to the house

and pick me up. Drive me where I need to go and pick me up later when I'm ready

to come home. There are limits on how far you can go. But, I can take my

rollator and they put it on and off the van.

As far as not using it because your ex-step mother uses one, the heck with her!

I figure if it helps me to get around and be more independent, then who cares

what anyone thinks? I've learned to live for me and not worry about what others

think. Someone once told me that what others think of me is none of my business.

Nan 49, MASS

listed started in '82

PF '08

Asthma '09

> > >

> > >

> > > Hi!

> > >

> > > I went to Emory yesterday and had all the tests and saw Dr. .

> > > The good news is that I am still stable and that is what I wanted to

> > > hear.

> > >

> > > I had an interesting experience with the 6 MW yesterday. The RT got

> out

> > > a rollator walker that had a basket under the set in the front of

> it,

> > > slightly sticking out. She took the O2 tank and set it in the middle

> > > in the basket of the walker and used a bungee cord to strap it in. I

> > > then used the walker to walk very fast. I was so impressed that I

> did

> > > not have to carry the O2 and when the walk was over, I had an

> instant

> > > seat available to sit down in. Now I know Joe goes to Dr. also

> > > and he has probably done a walking test like I did but I had never

> heard

> > > of it. Just wanted to share it with you all.

> > >

> > > Take care!

> > >

> > > Toodles!

> > >

> > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > >

> >

>

[Guest guest]

great saying

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Jane's Visit With the Pulmodude YesterdayTo: Breathe-Support Date: Saturday, May 23, 2009, 7:10 PM

Hi Jane,My rollator is a bit bulky to fold. I guess you could say it's like folding a wheelchair and putting it in the car. But, it's not as heavy. In Massachusetts, we have "The Ride". It's a service run by the MBTA (public transportation) . It's for the disabled that can't use public transport. They come right to the house and pick me up. Drive me where I need to go and pick me up later when I'm ready to come home. There are limits on how far you can go. But, I can take my rollator and they put it on and off the van. As far as not using it because your ex-step mother uses one, the heck with her! I figure if it helps me to get around and be more independent, then who cares what anyone thinks? I've learned to live for me and not worry about what others think. Someone once told me that what others think of me is none of my business. Nan 49, MASSlisted started in '82PF '08Asthma '09> > >> > >> > > Hi!> > >> > > I went to Emory yesterday and had all the tests and saw Dr. .> > > The good news is that I am still stable and that is what I wanted to> > > hear.> > >> > > I had an interesting experience with the 6 MW

yesterday. The RT got> out> > > a rollator walker that had a basket under the set in the front of> it,> > > slightly sticking out. She took the O2 tank and set it in the middle> > > in the basket of the walker and used a bungee cord to strap it in. I> > > then used the walker to walk very fast. I was so impressed that I> did> > > not have to carry the O2 and when the walk was over, I had an> instant> > > seat available to sit down in. Now I know Joe goes to Dr. also> > > and he has probably done a walking test like I did but I had never> heard> > > of it. Just wanted to share it with you all.> > >> > > Take care!> > >> > > Toodles!> > >> > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> > >>

>>

[Guest guest]

Thanks Jane,

At the time of that 6MW I was on 3LPM w/ exertion. The nurse was not paying

attention at all. As a result of that walk I was prescribed 4LPM continuous and

the pulmo wanted me to use liquid O2. I tried the liquid O2 for 2 weeks before I

called the supply company and politely asked them to get it out of my house. I

hated the liquid contraption they gave me. It wasn't a Helios device but an old,

overused, bulky piece of junk that spewed frozen air out the butt at the

slightest tilt. I am back to my beloved tiny tanks and use them at 4LPM on

demand unless my SATS say otherwise.

I try to keep an eye on my O2 with my oximeter and of course sometimes we just

know. Usually my O2 at rest is about 98 or 99. Lately it has been between 94 and

97 at rest. However, my O2 with exertion has continued it's normal patterns. I

have a feeling it won't be too long before I'm on O2 at rest. I see my local

Pulmo at thend of June and the Pulmo at Mayo in August. I'm sure there will be a

few changes made.

If I come across a rollator lookiing for home I will make sure to let you know.

33 FL

IPF dx 1/06

> > >

> > >

> > > Hi!

> > >

> > > I went to Emory yesterday and had all the tests and saw Dr. .

> > > The good news is that I am still stable and that is what I wanted to

> > > hear.

> > >

> > > I had an interesting experience with the 6 MW yesterday. The RT got

> out

> > > a rollator walker that had a basket under the set in the front of

> it,

> > > slightly sticking out. She took the O2 tank and set it in the middle

> > > in the basket of the walker and used a bungee cord to strap it in. I

> > > then used the walker to walk very fast. I was so impressed that I

> did

> > > not have to carry the O2 and when the walk was over, I had an

> instant

> > > seat available to sit down in. Now I know Joe goes to Dr. also

> > > and he has probably done a walking test like I did but I had never

> heard

> > > of it. Just wanted to share it with you all.

> > >

> > > Take care!

> > >

> > > Toodles!

> > >

> > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > >

> >

>

[Guest guest]

O.K. Peggy, I will tell Eddie that and put him in the doghouse with Max

if there is room. Max has been very naughty today and he ran out the

door and it took nearly 2 hours to get him. That is how fast he is. He

injured one or two pads on the front left paw and he scratched up his

tummy reall good in the briars and whatnot.

Toodles!

Jane UIP/IPF 12/1998 Dalton, GEorgia aka pianolady_musicgirl

> > > > >

> > > > >

> > > > > Hi!

> > > > >

> > > > > I went to Emory yesterday and had all the tests and saw Dr.

> .

> > > > > The good news is that I am still stable and that is what I

> wanted to

> > > > > hear.

> > > > >

> > > > > I had an interesting experience with the 6 MW yesterday. The

> RT got

> > > out

> > > > > a rollator walker that had a basket under the set in the

> front of

> > > it,

> > > > > slightly sticking out. She took the O2 tank and set it in

> the middle

> > > > > in the basket of the walker and used a bungee cord to strap

> it in. I

> > > > > then used the walker to walk very fast. I was so impressed

> that I

> > > did

> > > > > not have to carry the O2 and when the walk was over, I had an

> > > instant

> > > > > seat available to sit down in. Now I know Joe goes to Dr.

> also

> > > > > and he has probably done a walking test like I did but I had

> never

> > > heard

> > > > > of it. Just wanted to share it with you all.

> > > > >

> > > > > Take care!

> > > > >

> > > > > Toodles!

> > > > >

> > > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Before spending the money on a rollator, shop around a bit. They come in many

different sizes with many features. Also, they're made for different weights.

I'm no Barbie doll anymore. So, I had to go for a more sturdy one. Also, look

online for a site that has " durable medical equipment " . In Massachusetts, we

have a site called assistive technologies.com. You can post an ad for things you

have but don't need any longer or things you need. Not sure if there's one down

there. It might be worth a shot though.

Nan 49, MASS

list started in'82

PF '08

Asthma '09

> > > > >

> > > > >

> > > > > Hi!

> > > > >

> > > > > I went to Emory yesterday and had all the tests and saw Dr.

> .

> > > > > The good news is that I am still stable and that is what I

> wanted to

> > > > > hear.

> > > > >

> > > > > I had an interesting experience with the 6 MW yesterday. The RT

> got

> > > out

> > > > > a rollator walker that had a basket under the set in the front

> of

> > > it,

> > > > > slightly sticking out. She took the O2 tank and set it in the

> middle

> > > > > in the basket of the walker and used a bungee cord to strap it

> in. I

> > > > > then used the walker to walk very fast. I was so impressed that

> I

> > > did

> > > > > not have to carry the O2 and when the walk was over, I had an

> > > instant

> > > > > seat available to sit down in. Now I know Joe goes to Dr.

> also

> > > > > and he has probably done a walking test like I did but I had

> never

> > > heard

> > > > > of it. Just wanted to share it with you all.

> > > > >

> > > > > Take care!

> > > > >

> > > > > Toodles!

> > > > >

> > > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Jane

is the rollator for you or for Eddie?

did you talk to your doctor about it?

i don't know anything about the cost, but...

if your doctor thinks you need it, will insurance pay for it?

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Jane's Visit With the Pulmodude YesterdayTo: Breathe-Support Date: Sunday, May 24, 2009, 2:05 PM

HI !

Eddie and I were in Walgreens together a few moments ago and we walked by the rollator on display. I had told Eddie about it but he did't want anything to do with it. I am going to keep looking as I have heard there are many models. There is one on display at the Kroger Pharmacy where I get my meds. I am going to check that one out, too. I am hopig he will come around to my point of view and look at one with me.

Thanks for the info

Toodles!

Jane UIP/IPF 12/1998 Dalton Georgia aka pianolady_musicgirl> > > >> > > >> > > > Hi!> > > >> > > > I went to Emory yesterday and had all the tests and saw Dr. .> > > > The good news is that I am still stable and that is what I wanted to> > > > hear.> > > >> > > > I had an interesting experience with the 6 MW yesterday. The RT got> > out> > > > a rollator walker that had a basket under the set in the front of> > it,> > > > slightly sticking out. She took the O2 tank and set it in the middle> > > > in the basket of the walker and used a bungee cord to strap it in. I> > > > then used the walker to walk very fast. I was so impressed that I> > did> > >

> not have to carry the O2 and when the walk was over, I had an> > instant> > > > seat available to sit down in. Now I know Joe goes to Dr. also> > > > and he has probably done a walking test like I did but I had never> > heard> > > > of it. Just wanted to share it with you all.> > > >> > > > Take care!> > > >> > > > Toodles!> > > >> > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> > > >> > >> >>