New Member

[Guest guest]

Several members asked me if I had received an answer..here it is...Thanks

Lisha

Tina

------------------------------------------------------------------------

[Guest guest]

Hi Ron,

Welcome back to the group. I don't know why you haven't gotten any e-mail yet.

I am sure that Ronny or Chip will be able to help you. But I just wanted to

let you know that this message did come through.

Take CARE and God Bless! from La Verne, CA

ACM II, Spina Bifida, Syrinx (c2-t11), hydrocephalus

VP shunt revision (June 5, 1998)

Suboccipital Decompression (March 6, 1997)

VP shunt revision (November 1996)

Syringo-subarachnoid shunt (November 1995)

------------------------------------------------------------------------

[Guest guest]

In a message dated 3/8/99 11:40:11 PM Central Standard Time,

larshoes@... writes:

<< AM I DOING SOMETHING

WRONG?

DO I SMELL? WHAT DO I DO NOW? PLEASE HELP ME!!! I MISS TALKING WITH YOU

ALL!!!! >>

Hi Ron,

Could possibly be the name...everybody probably thinks ya might be

related to ronny...WOW, that would be an injustice to have chiari and be

related to r....lol

Anyways Welcome back!!!...you said you were a member before and missed

chatting. A lot of us suffer from big mental lapses so please refresh us with

your story (a brief introduction).

Love, hugs and prayers, Haydee, (Nana to , zippered 3/2/99 and so

far so good!)

------------------------------------------------------------------------

[Guest guest]

Hi Marie and welcome to the list - yes we got your message. Congratulations

on the weight loss you have had. I have not read Dr. Berensteins (sp) book

but I do the lower carb/higher protein way of eating and it works great for

me. I should get that book - it is too bad about that sarcastic lady you

talked to - someone " higher " up should be notified - I can't imagine that

those in charge would like that kind of attitude being dumped on people. Yes,

this list is great for questions and answers - I enjoy reading everybodys

also - somewhere along the line someone usually asks a question that I need

an answer to also! Rebekah

[Guest guest]

Yup, we got it Marie

fp

New member

>

>

>Hi all - have been enjoying all the info I have been reading on your

chatlist

>and noticed the note from and one other person re the book by Dr

>Bernstein. I have this book - not finished reading it yet but was getting

>quite confused about all the info on carbs so called the 800 no. in the

book

>and talked to a very sarcastic women who just kept telling me to keep

reading

>the book. I had cut out cereal, potatoes, etc. oh yes - fruit as he said

he

>had not eataen fruit for 20 some years and I had been eating fruit as a

snack

>almost every day. So hung up and called my dietitician and she told me to

be

>certain I have 3 carbs in each meal and to go back to eating fruit and

cereal

>(which I had cut out completely) so needless to say I am having a hard time

>getting back into the book but am certain I will. I have had this lovely

>decease since May 99 - am 66 yrs old and have lost 32 lbs so far. I was on

>meds to start with but have been off them for about 2-3 mos now and my no's

>stay pretty consistent most of the time. Keep up the good info coming -

don't

>know you but am glad as the others that you area back. Talk to you

all

>later and sure hope that this letter gets through as I am sort of new on

this

>machine - have to call my daughter when I get stuck and don't know how to

>keep going. So hope this gets thru. Someone pls let me know if you receive

>this as I would like to stay on the list with you all. Love to all

>

>____________________________________________________________________

>Get your own FREE, personal Netscape WebMail account today at

http://webmail.netscape.com.

>

>

[Guest guest]

Marie

I have been using Dr. Bernstein as a guide since being diagnosed Type2 in

March. My son was diagnosed 3 years ago and has been using Dr. Bernstein as

a guide for the past 2 years.

Since March I have lost 32 lbs - coming down from 182 to 150 - now just a

little over my ideal weight. I feel great, and at 64 I am feeling more like

44, but then I sure was dragging my tail around for a lot of years thinking

it was normal.

Notice I say my son and I use Bernstein as a " guide " . His message is pretty

clear - the carbs are the problem, fat and protein ain't! Using that as a

guide I start my day with egg, bacon and toast, and then for the rest of the

day I avoid carbs as much as possible. I stay almost fanatically away from

sugar, but may have a little rice, yam, sauces on my meat, possibly a little

noodles and then I load up on veggies.

I do the cooking and love to do a traditional roast dinner at the weekends

and oriental dishes for our evening meals - or maybe a barbecue, meat loaf,

pork chops, oven chicken breasts. I'm really cooking the way I always did,

but I just don't load up on rice, potatoes, pasta, sweet deserts - or fruit.

My bg's are fantastic now and I use my meter to monitor whether taking a

little bit extra of the carbs has had an effect - 9 times out of 10 (because

of the use of that word " moderation " ) there's no appreciable difference. My

bg's are rarely over 5.8 fasting level now (Canadian scale) and a high point

the other day was 6.2 when I had a little icecream before going to bed!

Before I was diagnosed, and for the first while after starting on Dr.

Bernstein's book, I was regularly in the 8's, 9's, and hitting high spots of

13+.

Pity about the sarcastic women - I wonder if Dr. B knows he's employing

someone like that? Can we get a message to him somehow.

Anyway, stick to it Marie, and let your own judgment and your meter be your

guide! Kinda like Pinoccio, eh?

:-) (-:

T2, d,e 3/99

[Guest guest]

hello Marie,

there is little doubt that carbohydrate restriction is required no

matter what diet you follow.

starches turn into sugar rapidly, and seemed to set you up for

further hunger.

I have chosen to eat fruit rather than starches, they are high in

fiber, most of them low in sugar, and they are full of vitamins.

regards, Sam

[Guest guest]

GREAt going, ,

I follow low carb also - I use Atkin's , and it is absolutely wonderful for

my bg's

Meenie

>

>

>Marie

>I have been using Dr. Bernstein as a guide since being diagnosed Type2 in

>March. My son was diagnosed 3 years ago and has been using Dr. Bernstein as

>a guide for the past 2 years.

>

>Since March I have lost 32 lbs - coming down from 182 to 150 -

[Guest guest]

Say , you in Canada? where? Me too, Toronto area.

fp

Re: New member

>

>

>Marie

>I have been using Dr. Bernstein as a guide since being diagnosed Type2 in

>March. My son was diagnosed 3 years ago and has been using Dr. Bernstein as

>a guide for the past 2 years.

>

>Since March I have lost 32 lbs - coming down from 182 to 150 - now just a

>little over my ideal weight. I feel great, and at 64 I am feeling more like

>44, but then I sure was dragging my tail around for a lot of years thinking

>it was normal.

>

>Notice I say my son and I use Bernstein as a " guide " . His message is pretty

>clear - the carbs are the problem, fat and protein ain't! Using that as a

>guide I start my day with egg, bacon and toast, and then for the rest of

the

>day I avoid carbs as much as possible. I stay almost fanatically away from

>sugar, but may have a little rice, yam, sauces on my meat, possibly a

little

>noodles and then I load up on veggies.

>

>I do the cooking and love to do a traditional roast dinner at the weekends

>and oriental dishes for our evening meals - or maybe a barbecue, meat loaf,

>pork chops, oven chicken breasts. I'm really cooking the way I always did,

>but I just don't load up on rice, potatoes, pasta, sweet deserts - or

fruit.

>

>My bg's are fantastic now and I use my meter to monitor whether taking a

>little bit extra of the carbs has had an effect - 9 times out of 10

(because

>of the use of that word " moderation " ) there's no appreciable difference. My

>bg's are rarely over 5.8 fasting level now (Canadian scale) and a high

point

>the other day was 6.2 when I had a little icecream before going to bed!

>

>Before I was diagnosed, and for the first while after starting on Dr.

>Bernstein's book, I was regularly in the 8's, 9's, and hitting high spots

of

>13+.

>

>Pity about the sarcastic women - I wonder if Dr. B knows he's employing

>someone like that? Can we get a message to him somehow.

>

>Anyway, stick to it Marie, and let your own judgment and your meter be your

>guide! Kinda like Pinoccio, eh?

>

>

>:-) (-:

>T2, d,e 3/99

>

>

[Guest guest]

That's if you can eat like Sam and just take one or two little bites of

something then stop Sugar sets off cravings in me, so I avoid fruit.

Notice I don't say I never eat it - just occasionally as a treat. I'm low

carb Atkin's so sugar is not on my list in any form.

Meenie

Re: New member

>

>

>hello Marie,

> there is little doubt that carbohydrate restriction is required no

>matter what diet you follow.

> starches turn into sugar rapidly, and seemed to set you up for

>further hunger.

> I have chosen to eat fruit rather than starches, they are high in

>fiber, most of them low in sugar, and they are full of vitamins.

> regards, Sam

>

>

[Guest guest]

Bonnie,

Just out of curiosity, what "teaching hospital" are you referring to? These bozo's don't sound like they deserve to stay anonymous. Good luck with your struggles with this disease and the medical profession.

All my best,.......Arlen

[Guest guest]

sorry to hear all of this but understand the anger and sometimes the need to vent this has been a great group to vent and share our medical learnings, dorisBonnie Faulkner wrote: I've just spent the last couple of hours reading all the prior posts and have alternated between not knowing whether to laugh or cry. My name is Bonnie & I will be 58 next month. I have multiple health problems: respiratory allergies, asthma, exzema, chronic sinusitis since I was about7 yrs old, allergic reactions to various medications all my life, type II diabetes since I was in my 30's,chronic depression, became pacemaker dependent in my late 40's for no reason the cariologist can explain (meaning no heart disease, no artery disease, no active infections or viruses detectable.) I've always

been very active, often holding multiple jobs, as has my husband. This fall, we decided we'd been working too hard too long & not enjoying it anymore, so we quit all but the full-time work, deciding we'd rest up & begin to enjoy the fruits of our labors by traveling some. Long story short, I ended up with an upgraded pacemaker model because I now have congestive heart failure, again the reason for the decline is not discernable. I work at a hospital (social worker), had chest pains one day in January, 06, went to ER & they admitted me for 6 days. More cardiac workup, but I also asked them for a pulmonary consultbecause of the shortness of breath. The fifth day, the pulmonologist and all of his fledgling doctors (a teaching hospital),announced out of the blue that I have moderately severe IPF, between 2-5 years to live, they'd need to do more tests,he put me on O2 24/7 (without any tests), call for an

appt on Monday, we'd start high-dose long-term steriods,and they left. As someone said in an earlier post, these are the people we pay for their time and expertise. I haven't been back to this guy. I stopped the O2 because I'm not allowed to work on O2 & the doc wouldn't certify me as temporarily disabled. My primary physician has arranged an appt with me for a local pulmonologist, as well as one with an alleged expert in a nearby city next month. I've had the bronchoscopy, though I don't trust the competency of the doc who did it. I've decided that I have to be in control of my own disease, my own life, thus I've put off the lung bx until I can talk to a physician whom I think I can trust to make decisions on up-to-date info & in my best interests. I have read everything I can find on the internet, including scientific papers I don't really understand and, from what I

read, including my own medical records, I think I have IPF and that it is at least moderately severe at this point. I was most interested in this group's comments on steriods and herbals. As a diabetic and a depressive-insomniac, I have already considered not taking these drugs since I've taken them before & know what they do to me, even on the short term. I thank you for the info on herbals; I'll certainly be looking into that.Like several of the others who've posted, I'm angry at the way I've been treated by the medical profession and at the extreme change in plans my spouse & I have had to make because of this disease. Our daughter is an adult now, our obligations to others are at a minimun & now it was to be time for us. I'm generally a glass half-full sort of person, so maybe we will still have time for us after we get all this diagnosing done. Thanks for letting me vent;

most people don't understand.

Brings words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail.

[Guest guest]

Bonnie,

You sound so much like me. I have had doctors misdiagnose and mistreat me also over the years. It makes one very distrustful. I was at first diagnosed as having tuberculosis (bronchoscopy) and refused treatment. Found out that I did not indeed have it. Got so sick finally that I nearly died. Found a really good pulmonary doctor who had a top notch surgeon do a lung biopsy. Then I was diagnosed with fibrosis which was secondary to Lupus that I have had for years. After a couple of years my insurance forced me to change docs and I went to a University group. That numbskull almost killed me. I ended up in the hospital sooooooo sick. My insurance changed again and I am back with my original pulmonologist. He is the BEST.

The point being that you are very smart to manage your own disease. It is your body and you live in there. No one knows you like you. Did they do a CT scan or just guess? If you indeed have fibrosis, it may be caused by one of your other conditions. If it has a known cause, it is not IPF but PF. Because my fibrosis was caused by Lupus, the docs treat the Lupus along with the fibrosis. I was also given 2-4 years.....in 1997. I do not know if Diabetes can have relation to lung disease, but it is an autoimmune disease as is Lupus.

I have had to do steroids and there is nothing worse. Once you find a good pulmonary doc, he will advise you there. There are drugs to help control the side effects. I just hate it, tho. Still take low doses. A good pulmonary doc will determine if you need 02. I have drug it around for years and I have a good life. Not that big a problem and it nourishes every tissue in your body. Have read that it the best medicine there is available.

I think you are doing all the right things. You are smart...obvious! You are independant and you want to be healthy. You have been through so much in your life. You must be a wonderful example for those around you. Keep up the fight and know that you can talk to me anytime. >> I've just spent the last couple of hours reading all the prior posts > and have alternated between not knowing whether to laugh or cry. > My name is Bonnie & I will be 58 next month. I have multiple health > problems: respiratory allergies, asthma, exzema, chronic sinusitis > since I was about7 yrs old, allergic reactions to various > medications all my life, type II diabetes since I was in my > 30's,chronic depression, became pacemaker dependent in my late 40's > for no reason the cariologist can explain (meaning no heart disease, > no artery disease, no active infections or viruses detectable.) I've > always been very active, often holding multiple jobs, as has my > husband. This fall, we decided we'd been working too hard too long > & not enjoying it anymore, so we quit all but the full-time work, > deciding we'd rest up & begin to enjoy the fruits of our labors by > traveling some. Long story short, I ended up with an upgraded > pacemaker model because I now have congestive heart failure, again > the reason for the decline is not discernable. I work at a hospital > (social worker), had chest pains one day in January, 06, went to ER > & they admitted me for 6 days. More cardiac workup, but I also > asked them for a pulmonary consultbecause of the shortness of > breath. The fifth day, the pulmonologist and all of his fledgling > doctors (a teaching hospital),announced out of the blue that I have > moderately severe IPF, between 2-5 years to live, they'd need to do > more tests,he put me on O2 24/7 (without any tests), call for an > appt on Monday, we'd start high-dose long-term steriods,and they > left. > > As someone said in an earlier post, these are the people we pay for > their time and expertise. I haven't been back to this guy. I > stopped the O2 because I'm not allowed to work on O2 & the doc > wouldn't certify me as temporarily disabled. My primary physician > has arranged an appt with me for a local pulmonologist, as well as > one with an alleged expert in a nearby city next month. I've had > the bronchoscopy, though I don't trust the competency of the doc who > did it. I've decided that I have to be in control of my own > disease, my own life, thus I've put off the lung bx until I can > talk to a physician whom I think I can trust to make decisions on up-> to-date info & in my best interests. I have read everything I can > find on the internet, including scientific papers I don't really > understand and, from what I read, including my own medical records, > I think I have IPF and that it is at least moderately severe at this > point. I was most interested in this group's comments on steriods > and herbals. As a diabetic and a depressive-insomniac, I have > already considered not taking these drugs since I've taken them > before & know what they do to me, even on the short term. I thank > you for the info on herbals; I'll certainly be looking into that.> > Like several of the others who've posted, I'm angry at the way I've > been treated by the medical profession and at the extreme change in > plans my spouse & I have had to make because of this disease. Our > daughter is an adult now, our obligations to others are at a minimun > & now it was to be time for us. I'm generally a glass half-full > sort of person, so maybe we will still have time for us after we get > all this diagnosing done. Thanks for letting me vent; most people > don't understand.>

[Guest guest]

Hi Bonny, I'm so sorry about you trouble finding the right Dr.'s. What I do know for sure is that steroids (prednisone) is NOT any help. I was so happy last week because I took the LAST prednisone.. Well this week has been the most painful in the past year. I can hardly get out of my chair. stand on my feet for more than a min. or two. It is total drug withdrawal. I told every one about the side effects before but this last push to get off them completely is really rough. Thank God I have a husband that is understanding. So be sure you question going on prednisone. I would never do it again.

Have you had a CT scan ? Or a PFT ( pulmonary function test? ) They really tell a lot. Did you do the 6 min walking test to check your blood gas? Please use the o2 while your active. with heart problems I'm sure you need it. I've been dragging mine around for a while now, You know what,, I could give a rip what anyone thinks mainly cause I can breath. Anyhow good luck to you and keep us posted. God Bless. Peggy

on 2/12/06 9:19 PM, Bonnie Faulkner at bcfaulkner2002@... wrote:

I've just spent the last couple of hours reading all the prior posts

and have alternated between not knowing whether to laugh or cry.

My name is Bonnie & I will be 58 next month. I have multiple health

problems: respiratory allergies, asthma, exzema, chronic sinusitis

since I was about7 yrs old, allergic reactions to various

medications all my life, type II diabetes since I was in my

30's,chronic depression, became pacemaker dependent in my late 40's

for no reason the cariologist can explain (meaning no heart disease,

no artery disease, no active infections or viruses detectable.) I've

always been very active, often holding multiple jobs, as has my

husband. This fall, we decided we'd been working too hard too long

& not enjoying it anymore, so we quit all but the full-time work,

deciding we'd rest up & begin to enjoy the fruits of our labors by

traveling some. Long story short, I ended up with an upgraded

pacemaker model because I now have congestive heart failure, again

the reason for the decline is not discernable. I work at a hospital

(social worker), had chest pains one day in January, 06, went to ER

& they admitted me for 6 days. More cardiac workup, but I also

asked them for a pulmonary consultbecause of the shortness of

breath. The fifth day, the pulmonologist and all of his fledgling

doctors (a teaching hospital),announced out of the blue that I have

moderately severe IPF, between 2-5 years to live, they'd need to do

more tests,he put me on O2 24/7 (without any tests), call for an

appt on Monday, we'd start high-dose long-term steriods,and they

left.

As someone said in an earlier post, these are the people we pay for

their time and expertise. I haven't been back to this guy. I

stopped the O2 because I'm not allowed to work on O2 & the doc

wouldn't certify me as temporarily disabled. My primary physician

has arranged an appt with me for a local pulmonologist, as well as

one with an alleged expert in a nearby city next month. I've had

the bronchoscopy, though I don't trust the competency of the doc who

did it. I've decided that I have to be in control of my own

disease, my own life, thus I've put off the lung bx until I can

talk to a physician whom I think I can trust to make decisions on up-

to-date info & in my best interests. I have read everything I can

find on the internet, including scientific papers I don't really

understand and, from what I read, including my own medical records,

I think I have IPF and that it is at least moderately severe at this

point. I was most interested in this group's comments on steriods

and herbals. As a diabetic and a depressive-insomniac, I have

already considered not taking these drugs since I've taken them

before & know what they do to me, even on the short term. I thank

you for the info on herbals; I'll certainly be looking into that.

Like several of the others who've posted, I'm angry at the way I've

been treated by the medical profession and at the extreme change in

plans my spouse & I have had to make because of this disease. Our

daughter is an adult now, our obligations to others are at a minimun

& now it was to be time for us. I'm generally a glass half-full

sort of person, so maybe we will still have time for us after we get

all this diagnosing done. Thanks for letting me vent; most people

don't understand.

[Guest guest]

Welcome Tom,

I am sorry that you have been ill and that you recieved the diagnosis. You are so young. You seem to have a positive attitude and that is a good thing...an important thing. Who knows what will happen in medical research in the next years. You and your wife keep searching for answers and take good care of each other.

Hugs,

Joyce

>> Hi everyone, new to the group and just wanted to say it's good to know > my wife and I are not alone in our experience. I'm 34, diagnosed with > IPF last month - as with many of you, never smoked or been ill. Just > one of those things. Not on O2 and still working full time so can't > make the local (massachusetts) support groups since they run 4-6. If > anyone local is interested I would like to start a group in the SE > Mass or northern RI area that meets a little later or on weekends. Tom>

[Guest guest]

Hi Tom and , Welcome to our group, I am just broken hearted for you two.

Tom work as long as possible and exercise as much as possible.

Good luck on starting a group. We can't see each other but we share a lot.

It really helps to know your not alone. God Bless and Keep You. Peggy

on 3/15/06 9:05 PM, topamo at tomandcathy99@... wrote:

Hi everyone, new to the group and just wanted to say it's good to know

my wife and I are not alone in our experience. I'm 34, diagnosed with

IPF last month - as with many of you, never smoked or been ill. Just

one of those things. Not on O2 and still working full time so can't

make the local (massachusetts) support groups since they run 4-6. If

anyone local is interested I would like to start a group in the SE

Mass or northern RI area that meets a little later or on weekends. Tom

[Guest guest]

Hi Sheila and welcome. No one should have to deal with a terminal

illness once (never mind twice) but I am glad you found help in your

support group. I think you will find it here as well. I have been a

member for about two weeks and I love it. Good luck with your

search, Tom

>

> Hi!

> I found your group when trying to research this disease for my dad

who

> will be 70 in July. I believe he was formally diagnosed about a

year &

> a half ago with IPF & I am concerned that he may not have much time

> left. I am looking for info about end stages of this disease---what

> are they---what are signs to look for, etc. I tried to search your

> archives but could not find exactly what I was hoping to find. My

dad

> has a varied health history includng heart bypass surgery 3 times

> after his first heart attack at age 39; diabetes now caused by the

> drugs he is on; strange arthritis which he previously took

> methotrexate (sp?) for (I know that's a possible cause for IPF);

> restless leg syndrome---you get the picture. He has been on SSDI

since

> about 1980 after his second bypass surgery so we know about that.

He

> has stayed fairly active (after learning what kind of pace he can

> tolerate) and enjoys restoring antique tractors and attending

antique

> tractor pulls--a family past time. He was in the hospital last week

> from Tues-Sat with a touch of pneumonia & had filled up with quite

a

> bit of fluid. He is currently on Imuron (sp?).

> Sorry for such a long post. Am anxious to find out as much as

I

> can as he is really down after this last bout in the hosp & afraid

> that this is the beginning of the end. I am a member of a similar

> group for colon cancer which I found when my 42 year old hubby was

> diagnosed in 2003. That group was a life line for me during the 20

> months that he battled the beast---so I am no stranger to terminal

> diseases--unfortunately.

> Thanks in advance for any info you can provide.

> Sheila Strong

>

[Guest guest]

To Sheila Strong; This goes to the whole group so I will try to be careful about what I have to say in response to your request about this disease. I waited a-while to see if you got a response to your request. I didn't see one. I could be wrong, but I think some of us are living in denial and hoping the doctors made a mistake. I do know the end (from observation) is tough. We don't like to talk about it. Try to help your Dad enjoy his days that he has left and stop worring about something you can't stop. A good friend of mine passed a few months ago with lung disease. I think of him every day when I pass his former business. I have lost a lot of friends and relatives to lung disease. Help your Dad enjoy the days he has left. None of us will know that. I don't like to write sad letters. I think that's why I haven't seen an answer to your request------Grey Singletary

Re: New Member

Hi Sheila and welcome. No one should have to deal with a terminal illness once (never mind twice) but I am glad you found help in your support group. I think you will find it here as well. I have been a member for about two weeks and I love it. Good luck with your search, Tom>> Hi! > I found your group when trying to research this disease for my dad who> will be 70 in July. I believe he was formally diagnosed about a year & > a half ago with IPF & I am concerned that he may not have much time> left. I am looking for info about end stages of this disease---what> are they---what are signs to look for, etc. I tried to search your> archives but could not find exactly what I was hoping to find. My dad> has a varied health history includng heart bypass surgery 3 times> after his first heart attack at age 39; diabetes now caused by the> drugs he is on; strange arthritis which he previously took> methotrexate (sp?) for (I know that's a possible cause for IPF);> restless leg syndrome---you get the picture. He has been on SSDI since> about 1980 after his second bypass surgery so we know about that. He> has stayed fairly active (after learning what kind of pace he can> tolerate) and enjoys restoring antique tractors and attending antique> tractor pulls--a family past time. He was in the hospital last week> from Tues-Sat with a touch of pneumonia & had filled up with quite a> bit of fluid. He is currently on Imuron (sp?).> Sorry for such a long post. Am anxious to find out as much as I> can as he is really down after this last bout in the hosp & afraid> that this is the beginning of the end. I am a member of a similar> group for colon cancer which I found when my 42 year old hubby was> diagnosed in 2003. That group was a life line for me during the 20> months that he battled the beast---so I am no stranger to terminal> diseases--unfortunately.> Thanks in advance for any info you can provide.> Sheila Strong>

[Guest guest]

Grey: When a person dies from this disease do they feel like they are smothering? Here is why I ask...I have been having a time keeping my canula on at night..whenever I wake up it is always off me and on the floor...so the other night I decided to take some paper medical tape and take the canula on both sides to my face....I woke up in the middle of the night trying to get it off because I couldn't breathe...The next night I turned my oxygen from 2L to 3.5L and I woke up in the middle of the night and I still had my canula on...and I hadn't even used any tape....There is a strong reason to believe that I have sleep apnea. So, do you think it was the sleep apnea making me think I couldn't breath or do you think it is because my disease is getting worse and I need more oxygen..???? Hope you will answer this. Barbjose singletary

wrote: To Sheila Strong; This goes to the whole group so I will try to be careful about what I have to say in response to your request about this disease. I waited a-while to see if you got a response to your request. I didn't see one. I could be wrong, but I think some of us are living in denial and hoping the doctors made a mistake. I do know the end (from observation) is tough. We don't like to talk about it. Try to help your Dad enjoy his days that he has left and stop worring about something you can't stop. A good friend of mine passed a few months ago with lung disease. I think of him every day when I pass his former business. I have lost a lot

of friends and relatives to lung disease. Help your Dad enjoy the days he has left. None of us will know that. I don't like to write sad letters. I think that's why I haven't seen an answer to your request------Grey Singletary Re: New Member Hi Sheila and welcome. No one should have to deal with a terminal illness once (never mind twice) but I am glad you found help in your support group. I think you will find it here as well. I have been a member for about two weeks and I love it. Good luck with your search, Tom>> Hi! > I found your group when trying to research this disease for my dad who> will be 70 in July. I believe he was formally diagnosed about a year & > a half ago with IPF & I am concerned that he may not have much time> left. I am looking for info about end stages of this disease---what> are they---what are signs to look for, etc. I tried to search your> archives but could not find exactly what I was hoping to find. My dad> has a

varied health history includng heart bypass surgery 3 times> after his first heart attack at age 39; diabetes now caused by the> drugs he is on; strange arthritis which he previously took> methotrexate (sp?) for (I know that's a possible cause for IPF);> restless leg syndrome---you get the picture. He has been on SSDI since> about 1980 after his second bypass surgery so we know about that. He> has stayed fairly active (after learning what kind of pace he can> tolerate) and enjoys restoring antique tractors and attending antique> tractor pulls--a family past time. He was in the hospital last week> from Tues-Sat with a touch of pneumonia & had filled up with quite a> bit of fluid. He is currently on Imuron (sp?).> Sorry for such a long post. Am anxious to find out as much as I> can as he is really down after this last bout in the hosp

& afraid> that this is the beginning of the end. I am a member of a similar> group for colon cancer which I found when my 42 year old hubby was> diagnosed in 2003. That group was a life line for me during the 20> months that he battled the beast---so I am no stranger to terminal> diseases--unfortunately.> Thanks in advance for any info you can provide.> Sheila Strong>

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I am always so full of questions....yes, I keep hoping this is all a nightmare that I will wake up from...but it doesn't look like it is....So, here is my question....I have been coughing up a lot of phlem sometimes...I used not do that...think I should get something for this...can you have bronchitis with this disease? BarbBarbara Soice wrote: Grey: When a person dies from this disease do they feel like they are smothering? Here is why I ask...I have been having a time keeping my canula on at night..whenever I wake up it is always off me and on the floor...so the other night I decided to take some paper medical tape and take the canula on both sides to my face....I woke up in the middle of the night trying to get it off because I couldn't

breathe...The next night I turned my oxygen from 2L to 3.5L and I woke up in the middle of the night and I still had my canula on...and I hadn't even used any tape....There is a strong reason to believe that I have sleep apnea. So, do you think it was the sleep apnea making me think I couldn't breath or do you think it is because my disease is getting worse and I need more oxygen..???? Hope you will answer this. Barbjose singletary wrote: To Sheila Strong; This goes to the whole group so I will try to be careful about what I have to say in response to your request about this disease. I waited a-while to see if you got

a response to your request. I didn't see one. I could be wrong, but I think some of us are living in denial and hoping the doctors made a mistake. I do know the end (from observation) is tough. We don't like to talk about it. Try to help your Dad enjoy his days that he has left and stop worring about something you can't stop. A good friend of mine passed a few months ago with lung disease. I think of him every day when I pass his former business. I have lost a lot of friends and relatives to lung disease. Help your Dad enjoy the days he has left. None of us will know that. I don't like to write sad letters. I think that's why I haven't seen an answer to your request------Grey Singletary Re: New Member Hi Sheila and welcome. No one should have to deal with a terminal illness once (never mind twice) but I am glad you found help in your support group. I think you will find it here as well. I have been a member for about two weeks and I love it. Good luck with your search, Tom>> Hi! > I found your group when trying to research this disease for my dad who> will be 70 in July. I believe he was formally diagnosed about a year & > a half ago with IPF & I am concerned that he may not have much time> left. I am looking for info about end stages of this disease---what> are they---what are signs to look for, etc. I tried to search your> archives but could not find exactly what I was hoping to find. My dad> has a varied health history includng heart bypass surgery 3 times> after his first heart attack at age 39; diabetes now caused by the> drugs he is on; strange arthritis which he previously took> methotrexate (sp?) for (I know that's a possible cause for IPF);> restless leg syndrome---you get the picture. He has been on SSDI since> about 1980 after his second bypass surgery so we know about that. He> has stayed

fairly active (after learning what kind of pace he can> tolerate) and enjoys restoring antique tractors and attending antique> tractor pulls--a family past time. He was in the hospital last week> from Tues-Sat with a touch of pneumonia & had filled up with quite a> bit of fluid. He is currently on Imuron (sp?).> Sorry for such a long post. Am anxious to find out as much as I> can as he is really down after this last bout in the hosp & afraid> that this is the beginning of the end. I am a member of a similar> group for colon cancer which I found when my 42 year old hubby was> diagnosed in 2003. That group was a life line for me during the 20> months that he battled the beast---so I am no stranger to terminal> diseases--unfortunately.> Thanks in advance for any info you can provide.> Sheila

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Barbara-- I think we are going to experience a lot different things from lack of ox. I started on a cpap about the same time they did the 6 minute walk. All this came from sleep ap test to get cpap. They said I was border line for ox so I got ox. A few weeks went by on the cpap and I was taking it off and putting on ox bottle. I called (my wife called to Dr on a Fri afternoon and told them I needed more ox} Bad timing. They can't do anything without a office visit and a new Px. Late that evening the Ox man called and said he was bringing a concentrator down to be connected to the cpap. Thats how I got the 50 foot cord that I'm attached to 24/7 while I'm indoors. I was using the cpap with Ox attached but I started using the can up my nose with the cpap mask over it. What I'm saying is yes----I'm needing more ox support to breathe. I go see the exercise person tomorrow. Hope that helps. Keep us posted--Grey

Re: New Member

I have heard that Sleep Apena does go along with this disease, but you should talk to your doctor and possibly be tested. I have restless leg syndrome and have read where many here have it also.

I have read the end of this disease can be right sided heart failue and many other ways. No one knows, as everyone is different. Nothing is black and white in anything.

I am always afraid to say too much, as I am not a doctor and everyone is different.

My husband died in my arms of a massive heart attack after we enjoyed a wonderful evening going to a wedding and dinner. He was happy and fine all night, but quick as a wink, he was gone.

Enjoy each day to the fullest if possible. I get depressed easy that is only normal too.

Remembering Pope "Be Not Afraid", also one of my favorite songs.

Ann

> Grey: When a person dies from this disease do they feel like they are smothering? Here is why I ask...I have been having a time keeping my canula on at night..whenever I wake up it is always off me and on the floor...so the other night I decided to take some paper medical tape and take the canula on both sides to my face....I woke up in the middle of the night trying to get it off because I couldn't breathe...The next night I turned my oxygen from 2L to 3.5L and I woke up in the middle of t

[Guest guest]

Barb wrote:So, do you think it was the sleep apnea making me think I couldn't breath or do you think it is because my disease is getting worse and I need more oxygen..????

When I wore the 24 hour oxygen monitor, I found out that my oxygen sats dropped while I slept. I do not have sleep apnea. I have a foam wedge that I use to sleep. Keeps the head elevated. Very important for me because I have so much mucus.

I also have smothering feeling at night. Wake up in a panic and dripping wet with sweat. I have thrashed around in the night and knocked everything off the nightstand.

Take care,

Joyce> >> > Hi! > > I found your group when trying to research this disease for my dad > who> > will be 70 in July. I believe he was formally diagnosed about a > year & > > a half ago with IPF & I am concerned that he may not have much time> > left. I am looking for info about end stages of this disease---what> > are they---what are signs to look for, etc. I tried to search your> > archives but could not find exactly what I was hoping to find. My > dad> > has a varied health history includng heart bypass surgery 3 times> > after his first heart attack at age 39; diabetes now caused by the> > drugs he is on; strange arthritis which he previously took> > methotrexate (sp?) for (I know that's a possible cause for IPF);> > restless leg syndrome---you get the picture. He has been on SSDI > since> > about 1980 after his second bypass surgery so we know about that. > He> > has stayed fairly active (after learning what kind of pace he can> > tolerate) and enjoys restoring antique tractors and attending > antique> > tractor pulls--a family past time. He was in the hospital last week> > from Tues-Sat with a touch of pneumonia & had filled up with quite > a> > bit of fluid. He is currently on Imuron (sp?).> > Sorry for such a long post. Am anxious to find out as much as > I> > can as he is really down after this last bout in the hosp & afraid> > that this is the beginning of the end. I am a member of a similar> > group for colon cancer which I found when my 42 year old hubby was> > diagnosed in 2003. That group was a life line for me during the 20> > months that he battled the beast---so I am no stranger to terminal> > diseases--unfortunately.> > Thanks in advance for any info you can provide.> > Sheila Strong> >> > > > > > >

[Guest guest]

Hi, Everybody: I just want to take the time to thank all of you who answered my questions...Those of you who read my emails know I am always asking questions. I guess you all probably get tired of it, but I am just tring to figure out this disease. You all have been wonderful...Thank you for letting me be part of this group.. BarbBarbara Soice wrote: I am always so full of questions....yes, I keep hoping this is all a nightmare that I will wake up from...but it doesn't look like it is....So, here is my question....I have been coughing up a lot of phlem sometimes...I used not do that...think I should get something for this...can you have bronchitis with this disease? BarbBarbara Soice

wrote: Grey: When a person dies from this disease do they feel like they are smothering? Here is why I ask...I have been having a time keeping my canula on at night..whenever I wake up it is always off me and on the floor...so the other night I decided to take some paper medical tape and take the canula on both sides to my face....I woke up in the middle of the night trying to get it off because I couldn't breathe...The next night I turned my oxygen from 2L to 3.5L and I woke up in the middle of the night and I still had my canula on...and I hadn't even used any tape....There is a strong reason to believe that I have sleep apnea. So, do you think it was the sleep apnea making me think I couldn't breath or do you think it is because my disease is getting worse and I need more oxygen..???? Hope you will answer this. Barbjose singletary wrote: To Sheila Strong; This goes to the whole group so I will try to be careful about what I have to say in response to your request about this disease. I waited a-while to see if you got a response to your request. I didn't see one. I could be wrong, but I think some of us are living in denial and hoping the doctors made a mistake. I do know the end (from observation) is tough. We don't like to talk about it. Try to help your Dad enjoy his days that he has left and stop worring about something you can't stop. A good friend of mine passed a few

months ago with lung disease. I think of him every day when I pass his former business. I have lost a lot of friends and relatives to lung disease. Help your Dad enjoy the days he has left. None of us will know that. I don't like to write sad letters. I think that's why I haven't seen an answer to your request------Grey Singletary Re: New Member Hi Sheila and welcome. No one should have to deal with a terminal illness once (never mind twice) but I am glad you found help in your support group. I think you will find it here as well. I have been a member for about two weeks and I love it. Good luck with your search, Tom>> Hi! > I found your group when trying to research this disease for my dad who> will be 70 in July. I believe he was formally diagnosed about a year & > a half ago with IPF & I am concerned that he may not have much time> left. I am looking for info about end stages of this disease---what> are they---what are signs to look for, etc. I tried to

search your> archives but could not find exactly what I was hoping to find. My dad> has a varied health history includng heart bypass surgery 3 times> after his first heart attack at age 39; diabetes now caused by the> drugs he is on; strange arthritis which he previously took> methotrexate (sp?) for (I know that's a possible cause for IPF);> restless leg syndrome---you get the picture. He has been on SSDI since> about 1980 after his second bypass surgery so we know about that. He> has stayed fairly active (after learning what kind of pace he can> tolerate) and enjoys restoring antique tractors and attending antique> tractor pulls--a family past time. He was in the hospital last week> from Tues-Sat with a touch of pneumonia & had filled up with quite a> bit of fluid. He is currently on Imuron (sp?).> Sorry for such a long post. Am

anxious to find out as much as I> can as he is really down after this last bout in the hosp & afraid> that this is the beginning of the end. I am a member of a similar> group for colon cancer which I found when my 42 year old hubby was> diagnosed in 2003. That group was a life line for me during the 20> months that he battled the beast---so I am no stranger to terminal> diseases--unfortunately.> Thanks in advance for any info you can provide.> Sheila Strong> New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. __________________________________________________

[Guest guest]

JOYCE, Thanks for the information. I'm going to share a short story. My cousin was on oxygen and unplugged an appliance and the electric spark caught him on fire. His wife said he had fire coming out his nose. His lungs were burned and could have speeded up his passing. I unplugged a toaster last night and saw the sparks and I had the ox on. I hope I remember not to do that any more. Grey

Re: New Member

Grey,

This from an oxygen safety article: BY CAR: When traveling by your own car or motor home, you have the freedom to carry your own portable oxygen equipment and to arrange for refills along the way. But remember to transport and store oxygen safely. The oxygen must be kept upright, away from heat and flame. Do not store oxygen in the trunk where it can get very hot. Also, because oxygen containers release small amounts of gas periodically, keep a window partially open, regardless of the weather.

I have a small box that I secure the extra bottles into and keep in the floor of the backseat. Until I pulled this up (trying to verify what I had been told about putting it into the trunk) I did not know it had to be upright. It is a wonder that I have not went up in flames already.

Even though oxygen isn't flamable, it is an accelerant. So a small spark could set it off. I wish people who block entryways smoking knew this.

Also, you said . My Dr. told me that if I could work hard at rehab that I might be able to come off ox. I was able to come off oxygen for about 2 years after rehab. So, work hard and don't give up. Attitude is everything.

Hugs,

Joyce

>> Re: Re: New MemberBarb: Whatever works for you to get your rest is important. This ox deal was started with 2lt as needed. It was left up to me to know when I needed it. After getting a pulse ox meter, I found my blood ox started droping pretty soon after taking off the ox. I stay on the concentrator while in the house and keep the bottle in the car. Put the bottle in a back pack and keep ex bottles in trunk. I can't say how accurate the meter is. I just know it drops when I turn off the ox. I notice some of this group are using higher levels of ox. I guess this comes the futher we travel down the road. My Dr. told me that if I could work hard at rehab that I might be able to come off ox. I hope he is right. GOOD LUCK Grey> ----- Original Message ----- > From: Peggy > To: Breathe-Support@yahoogroups

[Guest guest]

LOIS JOINER CRLEJ3@... tHANKS FOR THE STORY i KNOW THAT CARE IS NEEDED BUT HAD NOT GIVEN THIS A THOUGHT. i JUST STARTED WITH O-2 YESTERDAY. NOT USE TO IT YET. THANKS AGAIN. jose singletary wrote: JOYCE, Thanks for the information. I'm going to share a short story. My cousin was on oxygen and unplugged an appliance and the electric spark caught him on fire. His wife said he had fire coming out his nose. His lungs were burned and could have speeded up his passing. I unplugged a toaster last night and saw the sparks and I had the ox on. I hope I remember not to do that any

more. Grey Re: New Member Grey, This from an oxygen safety article: BY CAR: When traveling by

your own car or motor home, you have the freedom to carry your own portable oxygen equipment and to arrange for refills along the way. But remember to transport and store oxygen safely. The oxygen must be kept upright, away from heat and flame. Do not store oxygen in the trunk where it can get very hot. Also, because oxygen containers release small amounts of gas periodically, keep a window partially open, regardless of the weather. I have a small box that I secure the extra bottles into and keep in the floor of the backseat. Until I pulled this up (trying to verify what I had been told about putting it into the trunk) I did not know it had to be upright. It is a wonder that I have not went up in flames already. Even though oxygen isn't flamable, it is an accelerant. So a small spark could set it

off. I wish people who block entryways smoking knew this. Also, you said . My Dr. told me that if I could work hard at rehab that I might be able to come off ox. I was able to come off oxygen for about 2 years after rehab. So, work hard and don't give up. Attitude is everything. Hugs, Joyce >> Re: Re: New MemberBarb: Whatever works for you to get your rest is important. This ox deal was started with 2lt as needed. It was left up to me to know when I needed it. After

getting a pulse ox meter, I found my blood ox started droping pretty soon after taking off the ox. I stay on the concentrator while in the house and keep the bottle in the car. Put the bottle in a back pack and keep ex bottles in trunk. I can't say how accurate the meter is. I just know it drops when I turn off the ox. I notice some of this group are using higher levels of ox. I guess this comes the futher we travel down the road. My Dr. told me that if I could work hard at rehab that I might be able to come off ox. I hope he is right. GOOD LUCK Grey> ----- Original Message ----- > From: Peggy > To: Breathe-Support@yahoogroups __________________________________________________