Re: Intro

March 11, 2002

kathy gibbs wrote:

> I thought I would introduce myself. I am Kathy and I

> live in Pennsylvania. I have had a problem with blood

> sugar for a few years and was finally diagnosed and

> put on medicine in December of 2000. I am on

> glyburide and Actos and have had an increasing harder

> time controlling my sugar. Anyway, I don't know what

> to write, I am looking forward to the information and

> support from this group.

Hi Kathy,

Welcome to our group! If you could let us know a bit more about your

diabetes and how you are managing it, it would be helpful. Do you have a

Blood Glucose Monitor? If so, how often do you test. Do you test before

and after meals?

When a pancreas is working normally, it produces a small amount of

insulin at all times, called basal insulin, but it responds with a surge

of insulin when your body detects an increase in Blood Sugar. This

normally happens when you eat. A normal pancreas produces just the right

amount of insulin to meet the needs of each meal. In a diabetic, the

pancreas does not respond well. It does not put out enough insulin.

There is also a problem in diabetics with how quickly the pancreas can

respond to rising sugar levels.

Glyburide is a type of drug known as a Sulfonylurea. This type of drug

is designed to coax your pancreas into producing more Insulin. One

problem is that your pancreas is responding to the dosage of the

medication rather than your blood sugar levels. If you take x number of

milligrams of Glyburide and then do not eat, your pancreas is going to

produce additional insulin anyway - even though you did not raise your

blood sugar because you did not eat.

The second drug you mentioned is Actos. Actos is designed to deal with

another problem associated with diabetes - Insulin Resistance. Many

diabetics have bodies that not only don't produce enough insulin, in a

timely manner, but their bodies are not able to use the insulin that is

produced very efficiently. Their bodies " resist " the action of the

insulin and therefore glucose remains in the bloodstream instead of

being taken into the various tissues that need it.

Since you are taking Glyburide, you need to make sure that you eat

regularly and that your meals contain enough carbohydrates to balance

the effect of the drugs. If you eat too many carbohydrates, your blood

sugar will go up. If you eat too few, your blood sugar will go low.

Hypoglycemia (extremely low blood sugar) is a definite possibility when

taking Glyburide.

There are a number of ways to control blood sugar levels and you will

find all kinds here. Some are able to control well using diet and

exercise alone. Some are low-carb diets, others are more moderate. Some

follow a higher carb diet and take oral medications. Still others use

insulin which allows them to have more flexibility when dosing for each

meal.

Hope I didn't make you feel like I was giving you a " sip " of water from

a Fire Hose! It's easy to give too much or too little info here! )

Rick

March 11, 2002

Hi Rick,

Thanks so much for the info, I feel like I have found

the right place. I really need to get my sugars under

control. I have a one touch ultra that I use at least

three times a day. I just recently started going to

Joslin diabetes center. My general doc was very

casual about my sugar. I started a number of years

ago with hypoglycemia and then when I became pregnant

with my daughter they had to put me on mega doses of

insulin. After she was born the diabetes supposedly

went away. I was told a lin that it never goes

away you are just in good control. Anyway, when I

became pregnant with my son my sugar was in much

better control. After he was born my sugar calmed

down for about 4 years. Now my HA1c is 10 and

actually I had good control back in July of last year

and in October I had a major ear infection and then I

had a series of infections and colds and such and

since then it has been so sadly out of control. I am

on the diet they put me on at Joslin. They said to

count carbs and so forth. I exercise 30 minutes a day

and try to keep active. I have recently started

having problems with nerve pain and they put me on

Neurontin. Well that is about it and I appreciate any

input you guys can give me. And as far as the sip

from the fire hose let it rip.

Thanks so much

Kathy

--- Rick wrote:

> kathy gibbs wrote:

>

> > I thought I would introduce myself. I am Kathy

> and I

> > live in Pennsylvania. I have had a problem with

> blood

> > sugar for a few years and was finally diagnosed

> and

> > put on medicine in December of 2000. I am on

> > glyburide and Actos and have had an increasing

> harder

> > time controlling my sugar. Anyway, I don't know

> what

> > to write, I am looking forward to the information

> and

> > support from this group.

>

> Hi Kathy,

>

> Welcome to our group! If you could let us know a bit

> more about your

> diabetes and how you are managing it, it would be

> helpful. Do you have a

> Blood Glucose Monitor? If so, how often do you test.

> Do you test before

> and after meals?

>

> When a pancreas is working normally, it produces a

> small amount of

> insulin at all times, called basal insulin, but it

> responds with a surge

> of insulin when your body detects an increase in

> Blood Sugar. This

> normally happens when you eat. A normal pancreas

> produces just the right

> amount of insulin to meet the needs of each meal. In

> a diabetic, the

> pancreas does not respond well. It does not put out

> enough insulin.

> There is also a problem in diabetics with how

> quickly the pancreas can

> respond to rising sugar levels.

>

> Glyburide is a type of drug known as a Sulfonylurea.

> This type of drug

> is designed to coax your pancreas into producing

> more Insulin. One

> problem is that your pancreas is responding to the

> dosage of the

> medication rather than your blood sugar levels. If

> you take x number of

> milligrams of Glyburide and then do not eat, your

> pancreas is going to

> produce additional insulin anyway - even though you

> did not raise your

> blood sugar because you did not eat.

>

> The second drug you mentioned is Actos. Actos is

> designed to deal with

> another problem associated with diabetes - Insulin

> Resistance. Many

> diabetics have bodies that not only don't produce

> enough insulin, in a

> timely manner, but their bodies are not able to use

> the insulin that is

> produced very efficiently. Their bodies " resist " the

> action of the

> insulin and therefore glucose remains in the

> bloodstream instead of

> being taken into the various tissues that need it.

>

> Since you are taking Glyburide, you need to make

> sure that you eat

> regularly and that your meals contain enough

> carbohydrates to balance

> the effect of the drugs. If you eat too many

> carbohydrates, your blood

> sugar will go up. If you eat too few, your blood

> sugar will go low.

> Hypoglycemia (extremely low blood sugar) is a

> definite possibility when

> taking Glyburide.

>

> There are a number of ways to control blood sugar

> levels and you will

> find all kinds here. Some are able to control well

> using diet and

> exercise alone. Some are low-carb diets, others are

> more moderate. Some

> follow a higher carb diet and take oral medications.

> Still others use

> insulin which allows them to have more flexibility

> when dosing for each

> meal.

>

> Hope I didn't make you feel like I was giving you a

> " sip " of water from

> a Fire Hose! It's easy to give too much or too

> little info here! )

>

> Rick

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

March 11, 2002

Hi Rick,

Thanks so much for the info, I feel like I have found

the right place. I really need to get my sugars under

control. I have a one touch ultra that I use at least

three times a day. I just recently started going to

Joslin diabetes center. My general doc was very

casual about my sugar. I started a number of years

ago with hypoglycemia and then when I became pregnant

with my daughter they had to put me on mega doses of

insulin. After she was born the diabetes supposedly

went away. I was told a lin that it never goes

away you are just in good control. Anyway, when I

became pregnant with my son my sugar was in much

better control. After he was born my sugar calmed

down for about 4 years. Now my HA1c is 10 and

actually I had good control back in July of last year

and in October I had a major ear infection and then I

had a series of infections and colds and such and

since then it has been so sadly out of control. I am

on the diet they put me on at Joslin. They said to

count carbs and so forth. I exercise 30 minutes a day

and try to keep active. I have recently started

having problems with nerve pain and they put me on

Neurontin. Well that is about it and I appreciate any

input you guys can give me. And as far as the sip

from the fire hose let it rip.

Thanks so much

Kathy

--- Rick wrote:

> kathy gibbs wrote:

>

> > I thought I would introduce myself. I am Kathy

> and I

> > live in Pennsylvania. I have had a problem with

> blood

> > sugar for a few years and was finally diagnosed

> and

> > put on medicine in December of 2000. I am on

> > glyburide and Actos and have had an increasing

> harder

> > time controlling my sugar. Anyway, I don't know

> what

> > to write, I am looking forward to the information

> and

> > support from this group.

>

> Hi Kathy,

>

> Welcome to our group! If you could let us know a bit

> more about your

> diabetes and how you are managing it, it would be

> helpful. Do you have a

> Blood Glucose Monitor? If so, how often do you test.

> Do you test before

> and after meals?

>

> When a pancreas is working normally, it produces a

> small amount of

> insulin at all times, called basal insulin, but it

> responds with a surge

> of insulin when your body detects an increase in

> Blood Sugar. This

> normally happens when you eat. A normal pancreas

> produces just the right

> amount of insulin to meet the needs of each meal. In

> a diabetic, the

> pancreas does not respond well. It does not put out

> enough insulin.

> There is also a problem in diabetics with how

> quickly the pancreas can

> respond to rising sugar levels.

>

> Glyburide is a type of drug known as a Sulfonylurea.

> This type of drug

> is designed to coax your pancreas into producing

> more Insulin. One

> problem is that your pancreas is responding to the

> dosage of the

> medication rather than your blood sugar levels. If

> you take x number of

> milligrams of Glyburide and then do not eat, your

> pancreas is going to

> produce additional insulin anyway - even though you

> did not raise your

> blood sugar because you did not eat.

>

> The second drug you mentioned is Actos. Actos is

> designed to deal with

> another problem associated with diabetes - Insulin

> Resistance. Many

> diabetics have bodies that not only don't produce

> enough insulin, in a

> timely manner, but their bodies are not able to use

> the insulin that is

> produced very efficiently. Their bodies " resist " the

> action of the

> insulin and therefore glucose remains in the

> bloodstream instead of

> being taken into the various tissues that need it.

>

> Since you are taking Glyburide, you need to make

> sure that you eat

> regularly and that your meals contain enough

> carbohydrates to balance

> the effect of the drugs. If you eat too many

> carbohydrates, your blood

> sugar will go up. If you eat too few, your blood

> sugar will go low.

> Hypoglycemia (extremely low blood sugar) is a

> definite possibility when

> taking Glyburide.

>

> There are a number of ways to control blood sugar

> levels and you will

> find all kinds here. Some are able to control well

> using diet and

> exercise alone. Some are low-carb diets, others are

> more moderate. Some

> follow a higher carb diet and take oral medications.

> Still others use

> insulin which allows them to have more flexibility

> when dosing for each

> meal.

>

> Hope I didn't make you feel like I was giving you a

> " sip " of water from

> a Fire Hose! It's easy to give too much or too

> little info here! )

>

> Rick

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

November 1, 2007

, Thank you so much for posting this info. I too have started a strict diet and exercise plan. I have lost 15 of the pounds I initially gained and have 20 to go. I am very interested in the breathing exercises you do. Also I have a small trampoline but I have not used it since I got sick because I felt it would raise my heart rate too fast. Do you just bounce and not jump? Does it make you very sob? Congratulations on your great progress! God bless you- Sarcoid/PF 3/2006 California Intro

My name is . I was a member several years ago but got too busy with my life to keep up with all the posts. I felt it was now time to share how my life has changed. My pulmonary fibrosis was caused by formaldehyde poisoning. I was exposed to a low level for about a year (in my home) before I got sick enough to warrant an open lung biopsy and death sentence (pulmonogist, cardiologist, and surgeon). I was 57 at the time. My blood antigens to formaldehyde were 350% above normal safe limits. However, my hubby did enough detective work to locate the source and have it removed to I was spared further exposure. At the time of my open lung biopsy, I had only 32% oxygen diffusion and only 40% lung volume. I was on 6LPM 02. The MDs told my husband that he should expect me to die within a year. At that time, we lived at an elevation of

4800'. Through

diet and breathing exercises, I was able to reduce my supplemental 02 to 3LPM after 2 years...much to the astonishment of all the MDs. (This did necessitate eating raw grass fed beef and raw dairy from free-ranging animals for about 6 months. I later learned that it was the CLA in grass fed animals and products that did this!) My 02 diffusion had gradually increased from 32% to 52% (where it has stayed) and my lung volume increased by 20% (from 40%-60%). I have had no changes in the past 2 years. However, we moved to an elevation of 900' so I do not need supplemental 02...as long as I don't go above 2000' elevation. I have spent the last 2 years focusing on exercise and trying to lose the weight I gained when I was sick. I still cannot do traditional aerobic exercise (65%+) of my MHR. Nor can I even walk for more than about 20 minutes at a time. However, I have increased my

LBM and lowered my

BF% doing weight-training using hand weights. Once my capacity to lift hand weights had maxed out (8#), I began focusing on using yoga to increase my strength. Progress was very slow and I often wondered if it was worth the effort as I had to master the low push-up in sun salutations! After several months, I was astounded to realize that my cardio-pulmonary endurance had increased. I must still move slowly and rest after every sun salutation.. ..taking more than one breath for each move within the sun salutation and between sun salutations. ..but I can actually now do a low push-up (at 61 years of age!). I also invested in a good rebounder (aka...trampoline) . Just bouncing for about 20 minutes a day has mades a huge difference even though my feet never leave the mat! Now, keep in mind as you read all this, I still have only 52% oxygen diffusion and only 60%

lung volume. Even my

new pulmonologist did not believe I had been near death's door until he saw the CAT scan taken immediately before my lung biopsy and read the surgeon's report! He is willing to allow me a certain freedom to do my own thing AS LONG AS I agree to call him IMMEDIATELY if I feel anything might be wrong! I had to do so when I got a simple spider bite that caused an infection in my right arm and began entering my lungs! However, I got passed that. About a month ago, I began the next leg of my journey....focusing on losing weight. I felt this was critical when I learned that many with lung disease get diabetes. After the initial LM-BF exchange from weight training, my body weight refused to budge. Finally, I chose to get a glucose monitor so that I could find out where I stood in this area. After a month of pricking my fingertips 20+ times a day and several times a night (as

well as researching

the problem on the internet), I learned the CAUSE of the problem. (No one knows the WHY.) When my 02 saturation drops at night during deep sleep, my body's ability to access STORED glucose (using normal channels) is non-existent. My adrenal glands have to kick in and send out the hormone glucagon to trigger my muscles and liver to release glygocen. This causes an immediate rise in blood sugar which remains high until I do something to cause it to drop. When I should be waking up with a blood glucose reading in the low 80's, mine is about 105! From that point on, things only got worse! It has taken me a month of experimentation to learn how to bring down my blood glucose in the morning (into the 80's) and how to keep it in the 'fat-burning zone' (70-95) all day! Now I am experimenting with raising it (at dinner) just enough to allow adequate glucose in my blood during the first 4 hours of sleep and

then getting up with an

alarm at 3am to take in a small meal to prevent the adrenal gland from having to intervene during the night. It seems the most likely time for such intervention is between 3am and 6am. So far, I have lost 8# in the past month. I realize that I am one of the lucky ones in that the source of the problem was discovered and removed. However, I was at death's door and only determination, hard work, and refusal to admit defeat helped me get this far. I had MANY backslides and virtually no support within my family. (My husband wanted me to 'baby' myself!) If I don't exercise for a few days, I become well aware that I have defective lungs as my old breathing problems return. Also, a spider bite almost did me in so I don't want to think what a cold or flu would do! However, I wanted to share my success so that if there is anyone in the group who that life isn't worth

fighting for can know

that it is possible to have some quality of life even with pulmonary fibrosis. I don't know if what I am sharing will help anyone but I wanted to share it...just in case. ____________ _________ _________ _________ _________ __

November 1, 2007

, Thank you so much for posting this info. I too have started a strict diet and exercise plan. I have lost 15 of the pounds I initially gained and have 20 to go. I am very interested in the breathing exercises you do. Also I have a small trampoline but I have not used it since I got sick because I felt it would raise my heart rate too fast. Do you just bounce and not jump? Does it make you very sob? Congratulations on your great progress! God bless you- Sarcoid/PF 3/2006 California Intro

My name is . I was a member several years ago but got too busy with my life to keep up with all the posts. I felt it was now time to share how my life has changed. My pulmonary fibrosis was caused by formaldehyde poisoning. I was exposed to a low level for about a year (in my home) before I got sick enough to warrant an open lung biopsy and death sentence (pulmonogist, cardiologist, and surgeon). I was 57 at the time. My blood antigens to formaldehyde were 350% above normal safe limits. However, my hubby did enough detective work to locate the source and have it removed to I was spared further exposure. At the time of my open lung biopsy, I had only 32% oxygen diffusion and only 40% lung volume. I was on 6LPM 02. The MDs told my husband that he should expect me to die within a year. At that time, we lived at an elevation of

4800'. Through

diet and breathing exercises, I was able to reduce my supplemental 02 to 3LPM after 2 years...much to the astonishment of all the MDs. (This did necessitate eating raw grass fed beef and raw dairy from free-ranging animals for about 6 months. I later learned that it was the CLA in grass fed animals and products that did this!) My 02 diffusion had gradually increased from 32% to 52% (where it has stayed) and my lung volume increased by 20% (from 40%-60%). I have had no changes in the past 2 years. However, we moved to an elevation of 900' so I do not need supplemental 02...as long as I don't go above 2000' elevation. I have spent the last 2 years focusing on exercise and trying to lose the weight I gained when I was sick. I still cannot do traditional aerobic exercise (65%+) of my MHR. Nor can I even walk for more than about 20 minutes at a time. However, I have increased my

LBM and lowered my

BF% doing weight-training using hand weights. Once my capacity to lift hand weights had maxed out (8#), I began focusing on using yoga to increase my strength. Progress was very slow and I often wondered if it was worth the effort as I had to master the low push-up in sun salutations! After several months, I was astounded to realize that my cardio-pulmonary endurance had increased. I must still move slowly and rest after every sun salutation.. ..taking more than one breath for each move within the sun salutation and between sun salutations. ..but I can actually now do a low push-up (at 61 years of age!). I also invested in a good rebounder (aka...trampoline) . Just bouncing for about 20 minutes a day has mades a huge difference even though my feet never leave the mat! Now, keep in mind as you read all this, I still have only 52% oxygen diffusion and only 60%

lung volume. Even my

new pulmonologist did not believe I had been near death's door until he saw the CAT scan taken immediately before my lung biopsy and read the surgeon's report! He is willing to allow me a certain freedom to do my own thing AS LONG AS I agree to call him IMMEDIATELY if I feel anything might be wrong! I had to do so when I got a simple spider bite that caused an infection in my right arm and began entering my lungs! However, I got passed that. About a month ago, I began the next leg of my journey....focusing on losing weight. I felt this was critical when I learned that many with lung disease get diabetes. After the initial LM-BF exchange from weight training, my body weight refused to budge. Finally, I chose to get a glucose monitor so that I could find out where I stood in this area. After a month of pricking my fingertips 20+ times a day and several times a night (as

well as researching

the problem on the internet), I learned the CAUSE of the problem. (No one knows the WHY.) When my 02 saturation drops at night during deep sleep, my body's ability to access STORED glucose (using normal channels) is non-existent. My adrenal glands have to kick in and send out the hormone glucagon to trigger my muscles and liver to release glygocen. This causes an immediate rise in blood sugar which remains high until I do something to cause it to drop. When I should be waking up with a blood glucose reading in the low 80's, mine is about 105! From that point on, things only got worse! It has taken me a month of experimentation to learn how to bring down my blood glucose in the morning (into the 80's) and how to keep it in the 'fat-burning zone' (70-95) all day! Now I am experimenting with raising it (at dinner) just enough to allow adequate glucose in my blood during the first 4 hours of sleep and

then getting up with an

alarm at 3am to take in a small meal to prevent the adrenal gland from having to intervene during the night. It seems the most likely time for such intervention is between 3am and 6am. So far, I have lost 8# in the past month. I realize that I am one of the lucky ones in that the source of the problem was discovered and removed. However, I was at death's door and only determination, hard work, and refusal to admit defeat helped me get this far. I had MANY backslides and virtually no support within my family. (My husband wanted me to 'baby' myself!) If I don't exercise for a few days, I become well aware that I have defective lungs as my old breathing problems return. Also, a spider bite almost did me in so I don't want to think what a cold or flu would do! However, I wanted to share my success so that if there is anyone in the group who that life isn't worth

fighting for can know

that it is possible to have some quality of life even with pulmonary fibrosis. I don't know if what I am sharing will help anyone but I wanted to share it...just in case. ____________ _________ _________ _________ _________ __

November 1, 2007

Wow ! What an encouraging story you have told. Isn't formaldehyde

in our carpeting and new furniture, etc.? I've never liked the smell.

Keep us posted.

Kay

My name is . I was a member several years ago but got too busy with

> my life to keep up with all the posts. I felt it was now time to share how

> my life has changed.

>

> My pulmonary fibrosis was caused by formaldehyde poisoning. I was

> exposed to a low level for about a year (in my home) before I got sick

> enough to warrant an open lung biopsy and death sentence (pulmonogist,

> cardiologist, and surgeon). I was 57 at the time. My blood antigens to

> formaldehyde were 350% above normal safe limits. However, my hubby did

> enough detective work to locate the source and have it removed to I was

> spared further exposure. At the time of my open lung biopsy, I had only

> 32% oxygen diffusion and only 40% lung volume. I was on 6LPM 02. The

> MDs told my husband that he should expect me to die within a year. At

> that time, we lived at an elevation of 4800'.

>

> Through diet and breathing exercises, I was able to reduce my

> supplemental 02 to 3LPM after 2 years...much to the astonishment of all

> the MDs. (This did necessitate eating raw grass fed beef and raw dairy

> from free-ranging animals for about 6 months. I later learned that it

> was the CLA in grass fed animals and products that did this!) My 02

> diffusion had gradually increased from 32% to 52% (where it has stayed)

> and my lung volume increased by 20% (from 40%-60%). I have had no

> changes in the past 2 years. However, we moved to an elevation of 900'

> so I do not need supplemental 02...as long as I don't go above 2000'

> elevation.

>

> I have spent the last 2 years focusing on exercise and trying to lose

> the weight I gained when I was sick. I still cannot do traditional

> aerobic exercise (65%+) of my MHR. Nor can I even walk for more than

> about 20 minutes at a time. However, I have increased my LBM and

> lowered my BF% doing weight-training using hand weights. Once my

> capacity to lift hand weights had maxed out (8#), I began focusing on

> using yoga to increase my strength. Progress was very slow and I often

> wondered if it was worth the effort as I had to master the low push-up

> in sun salutations! After several months, I was astounded to realize

> that my cardio-pulmonary endurance had increased. I must still move

> slowly and rest after every sun salutation....taking more than one

> breath for each move within the sun salutation and between sun

> salutations...but I can actually now do a low push-up (at 61 years of

> age!). I also invested in a good rebounder (aka...trampoline). Just

> bouncing for about 20

> minutes a day has mades a huge difference even though my feet never leave

> the mat!

>

> Now, keep in mind as you read all this, I still have only 52% oxygen

> diffusion and only 60% lung volume. Even my new pulmonologist did not

> believe I had been near death's door until he saw the CAT scan taken

> immediately before my lung biopsy and read the surgeon's report! He is

> willing to allow me a certain freedom to do my own thing AS LONG AS I

> agree to call him IMMEDIATELY if I feel anything might be wrong! I had

> to do so when I got a simple spider bite that caused an infection in my

> right arm and began entering my lungs! However, I got passed that.

>

> About a month ago, I began the next leg of my journey....focusing on

> losing weight. I felt this was critical when I learned that many with

> lung disease get diabetes. After the initial LM-BF exchange from weight

> training, my body weight refused to budge. Finally, I chose to get a

> glucose monitor so that I could find out where I stood in this area.

> After a month of pricking my fingertips 20+ times a day and several

> times a night (as well as researching the problem on the internet), I

> learned the CAUSE of the problem. (No one knows the WHY.) When my 02

> saturation drops at night during deep sleep, my body's ability to access

> STORED glucose (using normal channels) is non-existent. My adrenal

> glands have to kick in and send out the hormone glucagon to trigger my

> muscles and liver to release glygocen. This causes an immediate rise in

> blood sugar which remains high until I do something to cause it to drop.

> When I should be waking up with a blood glucose reading in the low

> 80's, mine is about 105! From that point on, things only got worse! It

> has taken me a month of experimentation to learn how to bring down my

> blood glucose in the morning (into the 80's) and how to keep it in the

> 'fat-burning zone' (70-95) all day! Now I am experimenting with raising

> it (at dinner) just enough to allow adequate glucose in my blood during

> the first 4 hours of sleep and then getting up with an alarm at 3am to

> take in a small meal to prevent the adrenal gland from having to

> intervene during the night. It seems the most likely time for such

> intervention is between 3am and 6am. So far, I have lost 8# in the past

> month.

>

> I realize that I am one of the lucky ones in that the source of the

> problem was discovered and removed. However, I was at death's door and

> only determination, hard work, and refusal to admit defeat helped me get

> this far. I had MANY backslides and virtually no support within my

> family. (My husband wanted me to 'baby' myself!) If I don't exercise

> for a few days, I become well aware that I have defective lungs as my

> old breathing problems return. Also, a spider bite almost did me in so

> I don't want to think what a cold or flu would do! However, I wanted to

> share my success so that if there is anyone in the group who that life

> isn't worth fighting for can know that it is possible to have some

> quality of life even with pulmonary fibrosis.

>

> I don't know if what I am sharing will help anyone but I wanted to share

> it...just in case.

>

> __________________________________________________

>

November 1, 2007

, you are an inspiration. You took control and have done what you

could. Obviously you have been quite successful, but even had you not

the empowerment and active approach would have enhanced your days.

Yes, Formaldehyde, one of the entire list that could have affected

me. Anyone (now you'd have to be old like me) remember how much

beauty shops use to use? My mother owned a beauty shop and I spent a

lot of time there. Mobile Homes also were quite saturated. I spent

every weekend year round at the lake in one.

More and more I believe that there are multiple environmental

influences involved in much of PF and leading to the increases.

Genetics wouldn't have changed that much. Smoking (and I never

smoked) has actually decreased. If there are 130 types are there 130

causes? Who knows. But there is something that is increasing and

unfortunately we're not going to be as small and exclusive a group as

we are for long. We can only hope that more research can find some

common factors. They may then find that while these factors are

prevalent throughout society, there is then a portion of us with an

inherent factor ourselve, maybe genetic, may viral, maybe autoimmune

that when coupled with the environmental factor leads to the

increase. I don't know. However, I do believe in time the answer will

be found. I just hope we can get more commitment to that effort to

speed that time along.

>

> Wow ! What an encouraging story you have told. Isn't

formaldehyde

> in our carpeting and new furniture, etc.? I've never liked the

smell.

> Keep us posted.

>

> Kay

>

> My name is . I was a member several years ago but got too

busy with

> > my life to keep up with all the posts. I felt it was now time to

share how

> > my life has changed.

> >

> > My pulmonary fibrosis was caused by formaldehyde poisoning. I

was

> > exposed to a low level for about a year (in my home) before I got

sick

> > enough to warrant an open lung biopsy and death sentence

(pulmonogist,

> > cardiologist, and surgeon). I was 57 at the time. My blood

antigens to

> > formaldehyde were 350% above normal safe limits. However, my

hubby did

> > enough detective work to locate the source and have it removed to

I was

> > spared further exposure. At the time of my open lung biopsy, I

had only

> > 32% oxygen diffusion and only 40% lung volume. I was on 6LPM

02. The

> > MDs told my husband that he should expect me to die within a

year. At

> > that time, we lived at an elevation of 4800'.

> >

> > Through diet and breathing exercises, I was able to reduce my

> > supplemental 02 to 3LPM after 2 years...much to the astonishment

of all

> > the MDs. (This did necessitate eating raw grass fed beef and raw

dairy

> > from free-ranging animals for about 6 months. I later learned

that it

> > was the CLA in grass fed animals and products that did this!) My

02

> > diffusion had gradually increased from 32% to 52% (where it has

stayed)

> > and my lung volume increased by 20% (from 40%-60%). I have had no

> > changes in the past 2 years. However, we moved to an elevation

of 900'

> > so I do not need supplemental 02...as long as I don't go above

2000'

> > elevation.

> >

> > I have spent the last 2 years focusing on exercise and trying

to lose

> > the weight I gained when I was sick. I still cannot do

traditional

> > aerobic exercise (65%+) of my MHR. Nor can I even walk for more

than

> > about 20 minutes at a time. However, I have increased my LBM and

> > lowered my BF% doing weight-training using hand weights. Once my

> > capacity to lift hand weights had maxed out (8#), I began

focusing on

> > using yoga to increase my strength. Progress was very slow and I

often

> > wondered if it was worth the effort as I had to master the low

push-up

> > in sun salutations! After several months, I was astounded to

realize

> > that my cardio-pulmonary endurance had increased. I must still

move

> > slowly and rest after every sun salutation....taking more than one

> > breath for each move within the sun salutation and between sun

> > salutations...but I can actually now do a low push-up (at 61

years of

> > age!). I also invested in a good rebounder (aka...trampoline).

Just

> > bouncing for about 20

> > minutes a day has mades a huge difference even though my feet

never leave

> > the mat!

> >

> > Now, keep in mind as you read all this, I still have only 52%

oxygen

> > diffusion and only 60% lung volume. Even my new pulmonologist

did not

> > believe I had been near death's door until he saw the CAT scan

taken

> > immediately before my lung biopsy and read the surgeon's report!

He is

> > willing to allow me a certain freedom to do my own thing AS LONG

AS I

> > agree to call him IMMEDIATELY if I feel anything might be wrong!

I had

> > to do so when I got a simple spider bite that caused an infection

in my

> > right arm and began entering my lungs! However, I got passed

that.

> >

> > About a month ago, I began the next leg of my

journey....focusing on

> > losing weight. I felt this was critical when I learned that many

with

> > lung disease get diabetes. After the initial LM-BF exchange from

weight

> > training, my body weight refused to budge. Finally, I chose to

get a

> > glucose monitor so that I could find out where I stood in this

area.

> > After a month of pricking my fingertips 20+ times a day and

several

> > times a night (as well as researching the problem on the

internet), I

> > learned the CAUSE of the problem. (No one knows the WHY.) When

my 02

> > saturation drops at night during deep sleep, my body's ability to

access

> > STORED glucose (using normal channels) is non-existent. My

adrenal

> > glands have to kick in and send out the hormone glucagon to

trigger my

> > muscles and liver to release glygocen. This causes an immediate

rise in

> > blood sugar which remains high until I do something to cause it

to drop.

> > When I should be waking up with a blood glucose reading in the

low

> > 80's, mine is about 105! From that point on, things only got

worse! It

> > has taken me a month of experimentation to learn how to bring

down my

> > blood glucose in the morning (into the 80's) and how to keep it

in the

> > 'fat-burning zone' (70-95) all day! Now I am experimenting with

raising

> > it (at dinner) just enough to allow adequate glucose in my blood

during

> > the first 4 hours of sleep and then getting up with an alarm at

3am to

> > take in a small meal to prevent the adrenal gland from having to

> > intervene during the night. It seems the most likely time for

such

> > intervention is between 3am and 6am. So far, I have lost 8# in

the past

> > month.

> >

> > I realize that I am one of the lucky ones in that the source of

the

> > problem was discovered and removed. However, I was at death's

door and

> > only determination, hard work, and refusal to admit defeat helped

me get

> > this far. I had MANY backslides and virtually no support within

my

> > family. (My husband wanted me to 'baby' myself!) If I don't

exercise

> > for a few days, I become well aware that I have defective lungs

as my

> > old breathing problems return. Also, a spider bite almost did me

in so

> > I don't want to think what a cold or flu would do! However, I

wanted to

> > share my success so that if there is anyone in the group who that

life

> > isn't worth fighting for can know that it is possible to have some

> > quality of life even with pulmonary fibrosis.

> >

> > I don't know if what I am sharing will help anyone but I wanted

to share

> > it...just in case.

> >

> > __________________________________________________

> >

November 1, 2007