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Re: Digest Number 112

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I just don't understand why T2 goes faster than the speed of light at times.

Now that they took me off the Rezulin my blood sugars are going up real high

then down real low again. That does not do well with me. I feel like I am a

rollercoaster from you know where. I know that I am whining but I am just

frustrated right now. Sorry I will try to get in a better mood. Thanks.

Stormy

Re: Digest Number 112

>

>

>> <<< The ADA has issued guidelines to doctors that all adults 45 and

older

>> should receive annual testing for fasting blood glucose levels. This

should

>> go a long way toward locating the undiagnosed ones.>>>

>

>Hi Stormy,

>

>My doctor checked me about 6 weeks before I was diagnosed and I had a

fasting BG

>of 146 so he wanted to check it again in 3 months... Unfortunately my T-2

was

>catching up with me faster than that.

>

>

>

>

>------------------------------------------------------------------------

>Has ONElist changed your life?

>http://www.ONElist.com

>Visit our homepage and share with us your experiences at ONElist of the

Week!

>

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  • 6 years later...
Guest guest

Leanne-Sorry you had a terrible experience with your

biopsy. I must have been lucky as I experienced very

little pain-only a little tenderness which I still

have at the site. I did have some intercostal nerve

pain across my chest but it was minor. They even had

to make two incisions plus the one for the drainage

tube because my lung was so stiff they couldn't get it

out. The doctor apologized for having to do that. I

was wonderfing if you or anyone else has " clubbing " of

their fingernails? Both my fingers and toes have it.

I have to cut my fingernails down quite regularly

because they grow fast (some of my medicene makes them

grow rapidly) and when they get long they look like

claws.They are also turning in on the sides and

sometimes kind of dig into my skin. I took a walk

test yesterday and only made it 1 minute and 23 sec.

before my oxygen level dropped to 87. I keep hoping

all my exercise etc. will reverse this disease.....in

my heart I know it won't. How did you lose those 10

pounds? I lost 30 pounds just before I was diagnosed

then they put me on prednisone and I gained it all

back!!! Everytime I go to the doctor in Seattle he

says " you know it's not impossible to control your

weight even if you are on prednisone " - " It can be done "

- " you must have had a good summer " --yeah, right!.

I'd sure like to know how to get started again. I was

on Weight Watchers but find it hard to get motivated

to start again. I know my weight has to be down to

qualify for a transplant in the future. I did

convince my doctor to let me reduce my prednisone to

10 mg. Sometimes I think I was better off before I

started on all this medicene. At least I weighed

less. Hope you are having a great day. Ronnie (sorry

if I sound like I'm complaining-it's good to talk to

someone)

--- Breathe-Support wrote:

> There are 25 messages in this issue.

>

> Topics in this digest:

>

> 1. Re: lung transplant eval

>

> 2. Re: Digest Number 110

>

> 3. Re: lung transplant eval

>

> 4. Re: Re: lung transplant eval

>

> 5. # 's

>

> 6. Re: lung transplant eval

>

> 7. Re: PEGGY AND JOYCE

>

> 8. Re: lung transplant eval

>

> 9. Re: lung transplant eval

>

> 10. Re: lung transplant eval

>

> 11. Re: Re: lung transplant eval

>

> 12. Re: lung transplant eval

>

> 13. Re: Re: lung transplant eval

>

> 14. Re: Digest Number 110

> From: Leanne Storch

>

> 15. psychological stressors

>

> 16. Re: Digest Number 110

>

> 17. Re: Joyce

>

> 18. Interferon side effects

> From: sarleno@...

> 19. e-mail enclosures

> From: sarleno@...

> 20. transplant timetable

> From: sarleno@...

> 21. Re: Digest Number 110

> From: sarleno@...

> 22. Re: Digest Number 110

> From: TongueDancer2U@...

> 23. Re: sleep test

>

> 24. Re: Digest Number 110

> From: Leanne Storch

>

> 25. Re: Interferon side effects

>

>

>

>

________________________________________________________________________

>

________________________________________________________________________

>

> Message: 1

> Date: Mon, 13 Mar 2006 20:15:12 -0000

>

> Subject: Re: lung transplant eval

>

>

> Peggy,

>

> Are you buying your Inogen or is your insurance

> paying for it? How did

> you hear of it? I have never heard of it except on

> this site. Will you

> still have your old concentrator and tanks? Does it

> only pulse? Is

> that o.k. for everyday use? I am full of questions.

> I have pulled up

> some info but.....when you have gotten over your

> excitement... tell me

> all about it.

>

> I am glad you are seeing a rheumatologist. Mine

> works closely with my

> pulmonary doctor and together they have helped me

> realize more years

> than I was expecting.

>

> Eager to hear about your new toy!

>

> Joyce

>

> >

> >

> > I've already gone through the testing process

> (over a year ago), but

> > I had to lose 40 lbs. I've lost 10 so far but it

> is very slow

> > going. I don't think my heart was into the whole

> transplant thing.

> > I'm not sure it is yet or ever will be. My lung tx

> doc said he

> > could get me listed now if I wanted. I freaked

> out. Said I want to

> > try and wait until June or even September to get

> listed. (Can you

> > tell I'm dragging my feet?) The funny thing is

> I've started to get

> > worse. I've been holding my own for over a year at

> 4 litres now all

> > of a sudden I'm pusing 5-6 litres and it's scaring

> me. I know that

> > I'm grateful that this is even an option for me

> because I know so

> > many people that it isn't.

> >

> > Peggy keep us posted on whether or not you have

> fibromyalgia and

> > where you are in your journey. Prednisone sure

> makes losing weight

> > extremely difficult. Are you weaned off of it yet?

> >

> > Joyce, what hospital are you going through for

> your eval? When my

> > doc decided to get me tested, I was pretty much

> done in 2 days

> > (total). Have you gone through pulmonary rehab

> yet?

> >

> > Leanne

> >

> >

> >

> >

> >

> >

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Guest guest

Leanne-Sorry you had a terrible experience with your

biopsy. I must have been lucky as I experienced very

little pain-only a little tenderness which I still

have at the site. I did have some intercostal nerve

pain across my chest but it was minor. They even had

to make two incisions plus the one for the drainage

tube because my lung was so stiff they couldn't get it

out. The doctor apologized for having to do that. I

was wonderfing if you or anyone else has " clubbing " of

their fingernails? Both my fingers and toes have it.

I have to cut my fingernails down quite regularly

because they grow fast (some of my medicene makes them

grow rapidly) and when they get long they look like

claws.They are also turning in on the sides and

sometimes kind of dig into my skin. I took a walk

test yesterday and only made it 1 minute and 23 sec.

before my oxygen level dropped to 87. I keep hoping

all my exercise etc. will reverse this disease.....in

my heart I know it won't. How did you lose those 10

pounds? I lost 30 pounds just before I was diagnosed

then they put me on prednisone and I gained it all

back!!! Everytime I go to the doctor in Seattle he

says " you know it's not impossible to control your

weight even if you are on prednisone " - " It can be done "

- " you must have had a good summer " --yeah, right!.

I'd sure like to know how to get started again. I was

on Weight Watchers but find it hard to get motivated

to start again. I know my weight has to be down to

qualify for a transplant in the future. I did

convince my doctor to let me reduce my prednisone to

10 mg. Sometimes I think I was better off before I

started on all this medicene. At least I weighed

less. Hope you are having a great day. Ronnie (sorry

if I sound like I'm complaining-it's good to talk to

someone)

--- Breathe-Support wrote:

> There are 25 messages in this issue.

>

> Topics in this digest:

>

> 1. Re: lung transplant eval

>

> 2. Re: Digest Number 110

>

> 3. Re: lung transplant eval

>

> 4. Re: Re: lung transplant eval

>

> 5. # 's

>

> 6. Re: lung transplant eval

>

> 7. Re: PEGGY AND JOYCE

>

> 8. Re: lung transplant eval

>

> 9. Re: lung transplant eval

>

> 10. Re: lung transplant eval

>

> 11. Re: Re: lung transplant eval

>

> 12. Re: lung transplant eval

>

> 13. Re: Re: lung transplant eval

>

> 14. Re: Digest Number 110

> From: Leanne Storch

>

> 15. psychological stressors

>

> 16. Re: Digest Number 110

>

> 17. Re: Joyce

>

> 18. Interferon side effects

> From: sarleno@...

> 19. e-mail enclosures

> From: sarleno@...

> 20. transplant timetable

> From: sarleno@...

> 21. Re: Digest Number 110

> From: sarleno@...

> 22. Re: Digest Number 110

> From: TongueDancer2U@...

> 23. Re: sleep test

>

> 24. Re: Digest Number 110

> From: Leanne Storch

>

> 25. Re: Interferon side effects

>

>

>

>

________________________________________________________________________

>

________________________________________________________________________

>

> Message: 1

> Date: Mon, 13 Mar 2006 20:15:12 -0000

>

> Subject: Re: lung transplant eval

>

>

> Peggy,

>

> Are you buying your Inogen or is your insurance

> paying for it? How did

> you hear of it? I have never heard of it except on

> this site. Will you

> still have your old concentrator and tanks? Does it

> only pulse? Is

> that o.k. for everyday use? I am full of questions.

> I have pulled up

> some info but.....when you have gotten over your

> excitement... tell me

> all about it.

>

> I am glad you are seeing a rheumatologist. Mine

> works closely with my

> pulmonary doctor and together they have helped me

> realize more years

> than I was expecting.

>

> Eager to hear about your new toy!

>

> Joyce

>

> >

> >

> > I've already gone through the testing process

> (over a year ago), but

> > I had to lose 40 lbs. I've lost 10 so far but it

> is very slow

> > going. I don't think my heart was into the whole

> transplant thing.

> > I'm not sure it is yet or ever will be. My lung tx

> doc said he

> > could get me listed now if I wanted. I freaked

> out. Said I want to

> > try and wait until June or even September to get

> listed. (Can you

> > tell I'm dragging my feet?) The funny thing is

> I've started to get

> > worse. I've been holding my own for over a year at

> 4 litres now all

> > of a sudden I'm pusing 5-6 litres and it's scaring

> me. I know that

> > I'm grateful that this is even an option for me

> because I know so

> > many people that it isn't.

> >

> > Peggy keep us posted on whether or not you have

> fibromyalgia and

> > where you are in your journey. Prednisone sure

> makes losing weight

> > extremely difficult. Are you weaned off of it yet?

> >

> > Joyce, what hospital are you going through for

> your eval? When my

> > doc decided to get me tested, I was pretty much

> done in 2 days

> > (total). Have you gone through pulmonary rehab

> yet?

> >

> > Leanne

> >

> >

> >

> >

> >

> >

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Share on other sites

Guest guest

Leanne-Sorry you had a terrible experience with your

biopsy. I must have been lucky as I experienced very

little pain-only a little tenderness which I still

have at the site. I did have some intercostal nerve

pain across my chest but it was minor. They even had

to make two incisions plus the one for the drainage

tube because my lung was so stiff they couldn't get it

out. The doctor apologized for having to do that. I

was wonderfing if you or anyone else has " clubbing " of

their fingernails? Both my fingers and toes have it.

I have to cut my fingernails down quite regularly

because they grow fast (some of my medicene makes them

grow rapidly) and when they get long they look like

claws.They are also turning in on the sides and

sometimes kind of dig into my skin. I took a walk

test yesterday and only made it 1 minute and 23 sec.

before my oxygen level dropped to 87. I keep hoping

all my exercise etc. will reverse this disease.....in

my heart I know it won't. How did you lose those 10

pounds? I lost 30 pounds just before I was diagnosed

then they put me on prednisone and I gained it all

back!!! Everytime I go to the doctor in Seattle he

says " you know it's not impossible to control your

weight even if you are on prednisone " - " It can be done "

- " you must have had a good summer " --yeah, right!.

I'd sure like to know how to get started again. I was

on Weight Watchers but find it hard to get motivated

to start again. I know my weight has to be down to

qualify for a transplant in the future. I did

convince my doctor to let me reduce my prednisone to

10 mg. Sometimes I think I was better off before I

started on all this medicene. At least I weighed

less. Hope you are having a great day. Ronnie (sorry

if I sound like I'm complaining-it's good to talk to

someone)

--- Breathe-Support wrote:

> There are 25 messages in this issue.

>

> Topics in this digest:

>

> 1. Re: lung transplant eval

>

> 2. Re: Digest Number 110

>

> 3. Re: lung transplant eval

>

> 4. Re: Re: lung transplant eval

>

> 5. # 's

>

> 6. Re: lung transplant eval

>

> 7. Re: PEGGY AND JOYCE

>

> 8. Re: lung transplant eval

>

> 9. Re: lung transplant eval

>

> 10. Re: lung transplant eval

>

> 11. Re: Re: lung transplant eval

>

> 12. Re: lung transplant eval

>

> 13. Re: Re: lung transplant eval

>

> 14. Re: Digest Number 110

> From: Leanne Storch

>

> 15. psychological stressors

>

> 16. Re: Digest Number 110

>

> 17. Re: Joyce

>

> 18. Interferon side effects

> From: sarleno@...

> 19. e-mail enclosures

> From: sarleno@...

> 20. transplant timetable

> From: sarleno@...

> 21. Re: Digest Number 110

> From: sarleno@...

> 22. Re: Digest Number 110

> From: TongueDancer2U@...

> 23. Re: sleep test

>

> 24. Re: Digest Number 110

> From: Leanne Storch

>

> 25. Re: Interferon side effects

>

>

>

>

________________________________________________________________________

>

________________________________________________________________________

>

> Message: 1

> Date: Mon, 13 Mar 2006 20:15:12 -0000

>

> Subject: Re: lung transplant eval

>

>

> Peggy,

>

> Are you buying your Inogen or is your insurance

> paying for it? How did

> you hear of it? I have never heard of it except on

> this site. Will you

> still have your old concentrator and tanks? Does it

> only pulse? Is

> that o.k. for everyday use? I am full of questions.

> I have pulled up

> some info but.....when you have gotten over your

> excitement... tell me

> all about it.

>

> I am glad you are seeing a rheumatologist. Mine

> works closely with my

> pulmonary doctor and together they have helped me

> realize more years

> than I was expecting.

>

> Eager to hear about your new toy!

>

> Joyce

>

> >

> >

> > I've already gone through the testing process

> (over a year ago), but

> > I had to lose 40 lbs. I've lost 10 so far but it

> is very slow

> > going. I don't think my heart was into the whole

> transplant thing.

> > I'm not sure it is yet or ever will be. My lung tx

> doc said he

> > could get me listed now if I wanted. I freaked

> out. Said I want to

> > try and wait until June or even September to get

> listed. (Can you

> > tell I'm dragging my feet?) The funny thing is

> I've started to get

> > worse. I've been holding my own for over a year at

> 4 litres now all

> > of a sudden I'm pusing 5-6 litres and it's scaring

> me. I know that

> > I'm grateful that this is even an option for me

> because I know so

> > many people that it isn't.

> >

> > Peggy keep us posted on whether or not you have

> fibromyalgia and

> > where you are in your journey. Prednisone sure

> makes losing weight

> > extremely difficult. Are you weaned off of it yet?

> >

> > Joyce, what hospital are you going through for

> your eval? When my

> > doc decided to get me tested, I was pretty much

> done in 2 days

> > (total). Have you gone through pulmonary rehab

> yet?

> >

> > Leanne

> >

> >

> >

> >

> >

> >

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Guest guest

Does everyone know the self test for clubbing? Well I do and if you want to read on I will tell you. Pick your pointing finger, this takes two hands, touch your first knuckle and finger nail together, hold them up so you can look threw the space between them. Now that you have done that I will tell you that you saw. If the space looks like a diamond shape you DO NOT have clubbing. If the nails touch each other then you have clubbing. P

Hmmm....not sure I follow the demo, either. Left forefinger(pointer) on thumb knuckle??? ~Ginger~

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Guest guest

I have clubbing of my fingers and toes. I do like the fact that my nails grow nicely to a point. Then they have to be cut. The clubbing is what began my diagnosis from my G.P. when she saw the clubbing at first she thought I had a heart problem. But yes if I let them grow I could hang from any tree with ease. I hope it doesn't get much worse. God Bless and Keep You, Peggy

on 3/14/06 2:16 PM, Jerome Tuss at runningred3@... wrote:

Leanne-Sorry you had a terrible experience with your

biopsy. I must have been lucky as I experienced very

little pain-only a little tenderness which I still

have at the site. I did have some intercostal nerve

pain across my chest but it was minor. They even had

to make two incisions plus the one for the drainage

tube because my lung was so stiff they couldn't get it

out. The doctor apologized for having to do that. I

was wonderfing if you or anyone else has " clubbing " of

their fingernails? Both my fingers and toes have it.

I have to cut my fingernails down quite regularly

because they grow fast (some of my medicene makes them

grow rapidly) and when they get long they look like

claws.They are also turning in on the sides and

sometimes kind of dig into my skin. I took a walk

test yesterday and only made it 1 minute and 23 sec.

before my oxygen level dropped to 87. I keep hoping

all my exercise etc. will reverse this disease.....in

my heart I know it won't. How did you lose those 10

pounds? I lost 30 pounds just before I was diagnosed

then they put me on prednisone and I gained it all

back!!! Everytime I go to the doctor in Seattle he

says " you know it's not impossible to control your

weight even if you are on prednisone " - " It can be done "

- " you must have had a good summer " --yeah, right!.

I'd sure like to know how to get started again. I was

on Weight Watchers but find it hard to get motivated

to start again. I know my weight has to be down to

qualify for a transplant in the future. I did

convince my doctor to let me reduce my prednisone to

10 mg. Sometimes I think I was better off before I

started on all this medicene. At least I weighed

less. Hope you are having a great day. Ronnie (sorry

if I sound like I'm complaining-it's good to talk to

someone)

--- Breathe-Support wrote:

> There are 25 messages in this issue.

>

> Topics in this digest:

>

> 1. Re: lung transplant eval

>

> 2. Re: Digest Number 110

>

> 3. Re: lung transplant eval

>

> 4. Re: Re: lung transplant eval

>

> 5. # 's

>

> 6. Re: lung transplant eval

>

> 7. Re: PEGGY AND JOYCE

>

> 8. Re: lung transplant eval

>

> 9. Re: lung transplant eval

>

> 10. Re: lung transplant eval

>

> 11. Re: Re: lung transplant eval

>

> 12. Re: lung transplant eval

>

> 13. Re: Re: lung transplant eval

>

> 14. Re: Digest Number 110

> From: Leanne Storch

>

> 15. psychological stressors

>

> 16. Re: Digest Number 110

>

> 17. Re: Joyce

>

> 18. Interferon side effects

> From: sarleno@...

> 19. e-mail enclosures

> From: sarleno@...

> 20. transplant timetable

> From: sarleno@...

> 21. Re: Digest Number 110

> From: sarleno@...

> 22. Re: Digest Number 110

> From: TongueDancer2U@...

> 23. Re: sleep test

>

> 24. Re: Digest Number 110

> From: Leanne Storch

>

> 25. Re: Interferon side effects

>

>

>

>

________________________________________________________________________

>

________________________________________________________________________

>

> Message: 1

> Date: Mon, 13 Mar 2006 20:15:12 -0000

>

> Subject: Re: lung transplant eval

>

>

> Peggy,

>

> Are you buying your Inogen or is your insurance

> paying for it? How did

> you hear of it? I have never heard of it except on

> this site. Will you

> still have your old concentrator and tanks? Does it

> only pulse? Is

> that o.k. for everyday use? I am full of questions.

> I have pulled up

> some info but.....when you have gotten over your

> excitement... tell me

> all about it.

>

> I am glad you are seeing a rheumatologist. Mine

> works closely with my

> pulmonary doctor and together they have helped me

> realize more years

> than I was expecting.

>

> Eager to hear about your new toy!

>

> Joyce

>

> >

> >

> > I've already gone through the testing process

> (over a year ago), but

> > I had to lose 40 lbs. I've lost 10 so far but it

> is very slow

> > going. I don't think my heart was into the whole

> transplant thing.

> > I'm not sure it is yet or ever will be. My lung tx

> doc said he

> > could get me listed now if I wanted. I freaked

> out. Said I want to

> > try and wait until June or even September to get

> listed. (Can you

> > tell I'm dragging my feet?) The funny thing is

> I've started to get

> > worse. I've been holding my own for over a year at

> 4 litres now all

> > of a sudden I'm pusing 5-6 litres and it's scaring

> me. I know that

> > I'm grateful that this is even an option for me

> because I know so

> > many people that it isn't.

> >

> > Peggy keep us posted on whether or not you have

> fibromyalgia and

> > where you are in your journey. Prednisone sure

> makes losing weight

> > extremely difficult. Are you weaned off of it yet?

> >

> > Joyce, what hospital are you going through for

> your eval? When my

> > doc decided to get me tested, I was pretty much

> done in 2 days

> > (total). Have you gone through pulmonary rehab

> yet?

> >

> > Leanne

> >

> >

> >

> >

> >

> >

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Guest guest

It would seem that for some reason the bones at the tips of the fingers and toes start growing giving us the clubbed look. Wear them with honor it's what distinguishes us from the rest of those pathetic souls.

Re: lung transplant eval> > > Peggy,> > Are you buying your Inogen or is your insurance> paying for it? How did> you hear of it? I have never heard of it except on> this site. Will you> still have your old concentrator and tanks? Does it> only pulse? Is> that o.k. for everyday use? I am full of questions.> I have pulled up> some info but.....when you have gotten over your> excitement... tell me> all about it.> > I am glad you are seeing a rheumatologist. Mine> works closely with my> pulmonary doctor and together they have helped me> realize more years> than I was expecting.> > Eager to hear about your new toy!> > Joyce> > >> >> > I've already gone through the testing process> (over a year ago), but> > I had to lose 40 lbs. I've lost 10 so far but it> is very slow> > going. I don't think my heart was into the whole> transplant thing.> > I'm not sure it is yet or ever will be. My lung tx> doc said he> > could get me listed now if I wanted. I freaked> out. Said I want to> > try and wait until June or even September to get> listed. (Can you> > tell I'm dragging my feet?) The funny thing is> I've started to get> > worse. I've been holding my own for over a year at> 4 litres now all> > of a sudden I'm pusing 5-6 litres and it's scaring> me. I know that> > I'm grateful that this is even an option for me> because I know so> > many people that it isn't.> >> > Peggy keep us posted on whether or not you have> fibromyalgia and> > where you are in your journey. Prednisone sure> makes losing weight> > extremely difficult. Are you weaned off of it yet?> >> > Joyce, what hospital are you going through for> your eval? When my> > doc decided to get me tested, I was pretty much> done in 2 days> > (total). Have you gone through pulmonary rehab> yet?> >> > Leanne> >> >> >> >> >> >

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Guest guest

Does everyone know the self test for clubbing? Well I do and if you want to read on I will tell you. Pick your pointing finger, this takes two hands, touch your first knuckle and finger nail together, hold them up so you can look threw the space between them. Now that you have done that I will tell you that you saw. If the space looks like a diamond shape you DO NOT have clubbing. If the nails touch each other then you have clubbing. P Peggy wrote: I have clubbing of my fingers and toes. I do like the fact that my nails grow nicely to a point. Then they have to be cut. The clubbing is what began my diagnosis from my G.P. when she saw the clubbing at first she thought I had a heart problem. But

yes if I let them grow I could hang from any tree with ease. I hope it doesn't get much worse. God Bless and Keep You, Peggyon 3/14/06 2:16 PM, Jerome Tuss at runningred3@... wrote: Leanne-Sorry you had a terrible experience with yourbiopsy. I must have been lucky as I experienced verylittle pain-only a little tenderness which I stillhave at the site. I did have some intercostal nervepain across my chest but it was minor. They even hadto make two incisions plus the one for the drainagetube because my lung was so stiff they couldn't get itout. The doctor apologized for having to do that. Iwas wonderfing if you or anyone else has "clubbing" oftheir fingernails? Both my fingers and toes have it. I have to cut my fingernails down quite regularlybecause they grow fast (some of my medicene makes themgrow rapidly) and when they get long they look likeclaws.They

are also turning in on the sides andsometimes kind of dig into my skin. I took a walktest yesterday and only made it 1 minute and 23 sec.before my oxygen level dropped to 87. I keep hopingall my exercise etc. will reverse this disease.....inmy heart I know it won't. How did you lose those 10pounds? I lost 30 pounds just before I was diagnosedthen they put me on prednisone and I gained it allback!!! Everytime I go to the doctor in Seattle hesays "you know it's not impossible to control yourweight even if you are on prednisone"-"It can be done"- "you must have had a good summer"--yeah, right!. I'd sure like to know how to get started again. I wason Weight Watchers but find it hard to get motivatedto start again. I know my weight has to be down toqualify for a transplant in the future. I didconvince my doctor to let me reduce my prednisone to10 mg. Sometimes I think I was

better off before Istarted on all this medicene. At least I weighedless. Hope you are having a great day. Ronnie (sorryif I sound like I'm complaining-it's good to talk tosomeone)--- Breathe-Support wrote:> There are 25 messages in this issue.> > Topics in this digest:> > 1. Re: lung transplant eval> > 2. Re: Digest Number 110> > 3. Re: lung transplant eval> > 4. Re: Re: lung

transplant eval> > 5. # 's> > 6. Re: lung transplant eval> > 7. Re: PEGGY AND JOYCE> > 8. Re: lung transplant eval> > 9. Re: lung transplant eval>

> 10. Re: lung transplant eval> > 11. Re: Re: lung transplant eval> > 12. Re: lung transplant eval> > 13. Re: Re: lung transplant eval> > 14. Re: Digest Number 110> From:

Leanne Storch> > 15. psychological stressors> > 16. Re: Digest Number 110> > 17. Re: Joyce> > 18. Interferon side effects> 19. e-mail enclosures> 20. transplant timetable>

21. Re: Digest Number 110> 22. Re: Digest Number 110> 23. Re: sleep test> > 24. Re: Digest Number 110> > 25. Re: Interferon side effects> >

> >________________________________________________________________________>________________________________________________________________________> > Message: 1 > Date: Mon, 13 Mar 2006 20:15:12 -0000> > Subject: Re: lung transplant eval> > > Peggy,> > Are you buying your Inogen or is your insurance> paying for it? How did> you hear of it? I have never heard of it except on> this site. Will you> still have your old concentrator and tanks? Does it> only pulse? Is> that o.k. for everyday use? I am full of questions.> I have pulled up> some info but.....when you have gotten over your> excitement... tell me> all about it.> > I am glad

you are seeing a rheumatologist. Mine> works closely with my> pulmonary doctor and together they have helped me> realize more years> than I was expecting.> > Eager to hear about your new toy!> > Joyce> > >> >> > I've already gone through the testing process> (over a year ago), but> > I had to lose 40 lbs. I've lost 10 so far but it> is very slow> > going. I don't think my heart was into the whole> transplant thing.> > I'm not sure it is yet or ever will be. My lung tx> doc said he> > could get me listed now if I wanted.

I freaked> out. Said I want to> > try and wait until June or even September to get> listed. (Can you> > tell I'm dragging my feet?) The funny thing is> I've started to get> > worse. I've been holding my own for over a year at> 4 litres now all> > of a sudden I'm pusing 5-6 litres and it's scaring> me. I know that> > I'm grateful that this is even an option for me> because I know so> > many people that it isn't.> >> > Peggy keep us posted on whether or not you have> fibromyalgia and> > where you are in your journey. Prednisone sure> makes losing weight> > extremely difficult. Are you weaned off of it yet?> >> > Joyce, what hospital are you going through for> your eval? When my> > doc decided to get me tested, I was pretty much> done in 2 days> > (total). Have you gone through

pulmonary rehab> yet?> >> > Leanne> >> >> >> >> >> >

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Ok , I know I'm old but I don't get the demo.. I just can't help it. Thanks for trying to help.

I'll just hang onto this tree until I get it. LOL Peggy

on 3/14/06 7:33 PM, at kpoooh9@... wrote:

Does everyone know the self test for clubbing? Well I do and if you want to read on I will tell you. Pick your pointing finger, this takes two hands, touch your first knuckle and finger nail together, hold them up so you can look threw the space between them. Now that you have done that I will tell you that you saw. If the space looks like a diamond shape you DO NOT have clubbing. If the nails touch each other then you have clubbing. P

Peggy wrote:

I have clubbing of my fingers and toes. I do like the fact that my nails grow nicely to a point. Then they have to be cut. The clubbing is what began my diagnosis from my G.P. when she saw the clubbing at first she thought I had a heart problem. But yes if I let them grow I could hang from any tree with ease. I hope it doesn't get much worse. God Bless and Keep You, Peggy

on 3/14/06 2:16 PM, Jerome Tuss at runningred3@... wrote:

Leanne-Sorry you had a terrible experience with your

biopsy. I must have been lucky as I experienced very

little pain-only a little tenderness which I still

have at the site. I did have some intercostal nerve

pain across my chest but it was minor. They even had

to make two incisions plus the one for the drainage

tube because my lung was so stiff they couldn't get it

out. The doctor apologized for having to do that. I

was wonderfing if you or anyone else has " clubbing " of

their fingernails? Both my fingers and toes have it.

I have to cut my fingernails down quite regularly

because they grow fast (some of my medicene makes them

grow rapidly) and when they get long they look like

claws.They are also turning in on the sides and

sometimes kind of dig into my skin. I took a walk

test yesterday and only made it 1 minute and 23 sec.

before my oxygen level dropped to 87. I keep hoping

all my exercise etc. will reverse this disease.....in

my heart I know it won't. How did you lose those 10

pounds? I lost 30 pounds just before I was diagnosed

then they put me on prednisone and I gained it all

back!!! Everytime I go to the doctor in Seattle he

says " you know it's not impossible to control your

weight even if you are on prednisone " - " It can be done "

- " you must have had a good summer " --yeah, right!.

I'd sure like to know how to get started again. I was

on Weight Watchers but find it hard to get motivated

to start again. I know my weight has to be down to

qualify for a transplant in the future. I did

convince my doctor to let me reduce my prednisone to

10 mg. Sometimes I think I was better off before I

started on all this medicene. At least I weighed

less. Hope you are having a great day. Ronnie (sorry

if I sound like I'm complaining-it's good to talk to

someone)

--- Breathe-Support wrote:

> There are 25 messages in this issue.

>

> Topics in this digest:

>

> 1. Re: lung transplant eval

>

> 2. Re: Digest Number 110

>

> 3. Re: lung transplant eval

>

> 4. Re: Re: lung transplant eval

>

> 5. # 's

>

> 6. Re: lung transplant eval

>

> 7. Re: PEGGY AND JOYCE

>

> 8. Re: lung transplant eval

>

> 9. Re: lung transplant eval

>

> 10. Re: lung transplant eval

>

> 11. Re: Re: lung transplant eval

>

> 12. Re: lung transplant eval

>

> 13. Re: Re: lung transplant eval

>

> 14. Re: Digest Number 110

> From: Leanne Storch

>

> 15. psychological stressors

>

> 16. Re: Digest Number 110

>

> 17. Re: Joyce

>

> 18. Interferon side effects

> From: sarleno@...

> 19. e-mail enclosures

> From: sarleno@...

> 20. transplant timetable

> From: sarleno@...

> 21. Re: Digest Number 110

> From: sarleno@...

> 22. Re: Digest Number 110

> From: TongueDancer2U@...

> 23. Re: sleep test

>

> 24. Re: Digest Number 110

> From: Leanne Storch

>

> 25. Re: Interferon side effects

>

>

>

>

________________________________________________________________________

>

________________________________________________________________________

>

> Message: 1

> Date: Mon, 13 Mar 2006 20:15:12 -0000

>

> Subject: Re: lung transplant eval

>

>

> Peggy,

>

> Are you buying your Inogen or is your insurance

> paying for it? How did

> you hear of it? I have never heard of it except on

> this site. Will you

> still have your old concentrator and tanks? Does it

> only pulse? Is

> that o.k. for everyday use? I am full of questions.

> I have pulled up

> some info but.....when you have gotten over your

> excitement... tell me

> all about it.

>

> I am glad you are seeing a rheumatologist. Mine

> works closely with my

> pulmonary doctor and together they have helped me

> realize more years

> than I was expecting.

>

> Eager to hear about your new toy!

>

> Joyce

>

> >

> >

> > I've already gone through the testing process

> (over a year ago), but

> > I had to lose 40 lbs. I've lost 10 so far but it

> is very slow

> > going. I don't think my heart was into the whole

> transplant thing.

> > I'm not sure it is yet or ever will be. My lung tx

> doc said he

> > could get me listed now if I wanted. I freaked

> out. Said I want to

> > try and wait until June or even September to get

> listed. (Can you

> > tell I'm dragging my feet?) The funny thing is

> I've started to get

> > worse. I've been holding my own for over a year at

> 4 litres now all

> > of a sudden I'm pusing 5-6 litres and it's scaring

> me. I know that

> > I'm grateful that this is even an option for me

> because I know so

> > many people that it isn't.

> >

> > Peggy keep us posted on whether or not you have

> fibromyalgia and

> > where you are in your journey. Prednisone sure

> makes losing weight

> > extremely difficult. Are you weaned off of it yet?

> >

> > Joyce, what hospital are you going through for

> your eval? When my

> > doc decided to get me tested, I was pretty much

> done in 2 days

> > (total). Have you gone through pulmonary rehab

> yet?

> >

> > Leanne

> >

> >

> >

> >

> >

> >

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Jerome,

Yes, I have clubbing. I keep my nails short. My toenails are worse and also grow inward. I didn't know that happened on toes also. But, I found out!

Hugs to all,

Joyce> > >> > >> > > I've already gone through the testing process> > (over a year ago), but> > > I had to lose 40 lbs. I've lost 10 so far but it> > is very slow> > > going. I don't think my heart was into the whole> > transplant thing.> > > I'm not sure it is yet or ever will be. My lung tx> > doc said he> > > could get me listed now if I wanted. I freaked> > out. Said I want to> > > try and wait until June or even September to get> > listed. (Can you> > > tell I'm dragging my feet?) The funny thing is> > I've started to get> > > worse. I've been holding my own for over a year at> > 4 litres now all> > > of a sudden I'm pusing 5-6 litres and it's scaring> > me. I know that> > > I'm grateful that this is even an option for me> > because I know so> > > many people that it isn't.> > >> > > Peggy keep us posted on whether or not you have> > fibromyalgia and> > > where you are in your journey. Prednisone sure> > makes losing weight> > > extremely difficult. Are you weaned off of it yet?> > >> > > Joyce, what hospital are you going through for> > your eval? When my> > > doc decided to get me tested, I was pretty much> > done in 2 days> > > (total). Have you gone through pulmonary rehab> > yet?> > >> > > Leanne> > >> > >> > >> > >> > >> > >

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I New I couldn't explane It right. The dumb swede in me. Use the same two fingers doesn't make any diffencet as long as they match. Touch the knuckle and nail of the right hand to the knuckle and nail of the left hand together for the diamond shape PTongueDancer2U@... wrote: Does everyone know the self test for clubbing? Well I do and if you want to read on I will tell you. Pick your pointing finger, this takes

two hands, touch your first knuckle and finger nail together, hold them up so you can look threw the space between them. Now that you have done that I will tell you that you saw. If the space looks like a diamond shape you DO NOT have clubbing. If the nails touch each other then you have clubbing. P Hmmm....not sure I follow the demo, either. Left forefinger(pointer) on thumb knuckle??? ~Ginger~

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I New I couldn't explane It right. The dumb swede in me. Use the same two fingers doesn't make any diffencet as long as they match. Touch the knuckle and nail of the right hand to the knuckle and nail of the left hand together for the diamond shape PTongueDancer2U@... wrote: Does everyone know the self test for clubbing? Well I do and if you want to read on I will tell you. Pick your pointing finger, this takes

two hands, touch your first knuckle and finger nail together, hold them up so you can look threw the space between them. Now that you have done that I will tell you that you saw. If the space looks like a diamond shape you DO NOT have clubbing. If the nails touch each other then you have clubbing. P Hmmm....not sure I follow the demo, either. Left forefinger(pointer) on thumb knuckle??? ~Ginger~

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Wow! I learned something today. Thanks. > > >> > >> > > I've already gone through the testing process> > (over a year ago), but> > > I had to lose 40 lbs. I've lost 10 so far but it> > is very slow> > > going. I don't think my heart was into the whole> > transplant thing.> > > I'm not sure it is yet or ever will be. My lung tx> > doc said he> > > could get me listed now if I wanted. I freaked> > out. Said I want to> > > try and wait until June or even September to get> > listed. (Can you> > > tell I'm dragging my feet?) The funny thing is> > I've started to get> > > worse. I've been holding my own for over a year at> > 4 litres now all> > > of a sudden I'm pusing 5-6 litres and it's scaring> > me. I know that> > > I'm grateful that this is even an option for me> > because I know so> > > many people that it isn't.> > >> > > Peggy keep us posted on whether or not you have> > fibromyalgia and> > > where you are in your journey. Prednisone sure> > makes losing weight> > > extremely difficult. Are you weaned off of it yet?> > >> > > Joyce, what hospital are you going through for> > your eval? When my> > > doc decided to get me tested, I was pretty much> > done in 2 days> > > (total). Have you gone through pulmonary rehab> > yet?> > >> > > Leanne> > >> > >> > >> > >> > >> > >

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Peggy,

I wander how many of us were trying to do this test at the same time? I finally read it enough times that I understood what to do. Ha! Ha! I am not too good at reading directions.

Hugs,

Joyce

> > >> > >> > > I've already gone through the testing process> > (over a year ago), but> > > I had to lose 40 lbs. I've lost 10 so far but it> > is very slow> > > going. I don't think my heart was into the whole> > transplant thing.> > > I'm not sure it is yet or ever will be. My lung tx> > doc said he> > > could get me listed now if I wanted. I freaked> > out. Said I want to> > > try and wait until June or even September to get> > listed. (Can you> > > tell I'm dragging my feet?) The funny thing is> > I've started to get> > > worse. I've been holding my own for over a year at> > 4 litres now all> > > of a sudden I'm pusing 5-6 litres and it's scaring> > me. I know that> > > I'm grateful that this is even an option for me> > because I know so> > > many people that it isn't.> > >> > > Peggy keep us posted on whether or not you have> > fibromyalgia and> > > where you are in your journey. Prednisone sure> > makes losing weight> > > extremely difficult. Are you weaned off of it yet?> > >> > > Joyce, what hospital are you going through for> > your eval? When my> > > doc decided to get me tested, I was pretty much> > done in 2 days> > > (total). Have you gone through pulmonary rehab> > yet?> > >> > > Leanne> > >> > >> > >> > >> > >> > >

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,

This is so funny. Can you just see all of us out here trying to figure out how to do this test. It is not just age. My 12 year old grandaughter couldn't do it either. I did finally do it...... Joyce

> Does everyone know the self test for clubbing? Well I do and if you want to read on I will tell you. Pick your pointing finger, this takes two hands, touch your first knuckle and finger nail together, hold them up so you can look threw the space between them. Now that you have done that I will tell you that you saw. If the space looks like a diamond shape you DO NOT have clubbing. If the nails touch each other then you have clubbing. P> > Hmmm....not sure I follow the demo, either. Left forefinger(pointer) on thumb knuckle??? ~Ginger~> > > > >

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I was doing the same thing as I tried to explain a simple task like putting you finger together. I don't give good directions. Pjanne5303 wrote: Peggy, I wander how many of us were trying to do this test at the same time? I finally read it enough times that I understood what to do. Ha! Ha! I am not too good at reading directions. Hugs, Joyce > > >> > >> > > I've already gone through the testing process> > (over a year ago), but> > > I had to lose 40 lbs. I've lost 10 so far but it> > is very slow> > > going. I don't think my heart was into the whole> > transplant thing.> > > I'm not sure it is yet or ever will be. My lung tx> > doc said he> > > could get me listed now if I wanted. I freaked> > out. Said I want to> > > try and wait until June or even September to get> > listed.

(Can you> > > tell I'm dragging my feet?) The funny thing is> > I've started to get> > > worse. I've been holding my own for over a year at> > 4 litres now all> > > of a sudden I'm pusing 5-6 litres and it's scaring> > me. I know that> > > I'm grateful that this is even an option for me> > because I know so> > > many people that it isn't.> > >> > > Peggy keep us posted on whether or not you have> > fibromyalgia and> > > where you are in your journey. Prednisone sure> > makes losing weight> > > extremely difficult. Are you weaned off of it yet?> > >> > > Joyce, what hospital are you going through for> > your eval? When my> > > doc decided to get me tested, I was pretty much> > done in 2 days> > > (total). Have you gone through pulmonary

rehab> > yet?> > >> > > Leanne> > >> > >> > >> > >> > >> > >

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