Re: (unknown)

[Guest guest]

)

>

>

> Does anyone know if depression is a side effect of ACM. I have ACM and

have

> had two operations to correct with no success. Any one else out there

that

> has had surgery and still symptoms. I think i'm going nuts

>

>

>

>

> You are not alone , I also have a lot of trouble with depression and

they can't seem to find any of their drugs to help me.

I write in a journal because that use to help me and it isn't any more.

I just wanted you to know you are not alone.

take care

deb in mo______________________________________________________________

> Send and receive Hotmail on your mobile device: http://mobile.msn.com

>

>

> Help section: http://www.yahoogroups.com/help/

>

> NOTE: NCC refers to posts with No Chiari Content

>

> To Unsubscribe Yourself:

> chiari-unsubscribe

>

> WACMA Home: Http://www.wacma.com

>

> WACMA Online Group: http://groups.yahoo.com/group/chiari/

>

>

>

[Guest guest]

Melinda,

Your daughter's quality of life is in jeopardy. It sounds to me like you've

already made your decision.

I was told by my nsg that incontinence was a red flag and because I was

suffering from it (among a host of other ills) that made me a sure candidate

for decompression.

Cheryl Sousa

~ (unknown)

~

~

~HI ! For those of you I have not chatted with before: My daughter

~just turned 6 this monday. She is a Chiari Type 1 12mm. No spinal

~abnormalities. thankfullly!.We have just had our second opinion.

~First doctor did not seem to take this seriously and stated that

~surgery should not be done until symptoms are severe. Well, after

~this second opinion in which the doctor says he thinks we should do

~the surgery, he feels that we should not wait until things get alot

~worse!. So my question is: How bad do things need to get? I have read

~many of your stories and postings and am very thankful that my

~daughter is not having all the problems that many of you are. However

~she does have enough of her own problems. im not sure how many are

~related to the chiari, but either way she has her plate full!.

~i dont want her to have the surgery and end up worse than she is now.

~Any suggestions? I love my daughter very mych and it just tears me up

~to hear her crying with pain in her eyes and head, she cant control

~her urine often, poor performance in schools, mood disorder,sleep

~problems,poor balance and coordination and many other things going

~on.

~Any advice or suggestions and prayers are appreciated.

~Also I was fired from work this week for missing so much time with my

~daughter so I am looking for a business or something to do at home to

~help us financially. Any suggestions?

~Thank You for taking the time to listen!

~Melinda S.

~

~

~Help section: http://www.yahoogroups.com/help/

~

~NOTE: NCC refers to posts with No Chiari Content

~

~To Unsubscribe Yourself:

~chiari-unsubscribe

~

~WACMA Home: Http://www.wacma.com

~

~WACMA Online Group: http://groups.yahoo.com/group/chiari/

~

~

~

[Guest guest]

Your children are adorable!!!!

Love ya,

DebDog (formerly Debbie From Louisiana)

iowa97 wrote:

Latest Pic of the Brats.....

Taken 2 days after my birthday....July 28th. If it's too hard to really see it, let me know and I can make it bigger.

Tonia

Tonia

Founder:

Weight and Chronic Pain

www.groups.yahoo.com/group/WeightandChronicPain

Moderator:

RSD-CRPS of America

www.groups.yahoo.com/group/RSD-CRPSofAmerica

Sianna's Cinemania Incredimail

www.groups.yahoo.com/group/Siannas-Cinemania-Incredimail

Member:

Fipso

www.groups.yahoo.com/group/fipso

Sweet Expressions

www.groups.yahoo.com/group/sweet_expressions_for_incredimail

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Thanks Deb!!!

Tonia

-- Re: (unknown)

Your children are adorable!!!!

Love ya,

DebDog (formerly Debbie From Louisiana)

iowa97 wrote:

Latest Pic of the Brats.....

Taken 2 days after my birthday....July 28th. If it's too hard to really see it, let me know and I can make it bigger.

Tonia

Tonia

Founder:

Weight and Chronic Pain

www.groups.yahoo.com/group/WeightandChronicPain

Moderator:

RSD-CRPS of America

www.groups.yahoo.com/group/RSD-CRPSofAmerica

Sianna's Cinemania Incredimail

www.groups.yahoo.com/group/Siannas-Cinemania-Incredimail

Member:

Fipso

www.groups.yahoo.com/group/fipso

Sweet Expressions

www.groups.yahoo.com/group/sweet_expressions_for_incredimail

[Guest guest]

Geeta,

Good morning! I'm sorry you've been having problems with Yahoo. Have you contacted Yahoo about the problem you're having? I had issues the other day that seem to have been fixed now. Unfortunately I don't have the power to send you digests. Ican only forward individual messages and it would be very time consuming for me to forward every message sent to the board for the last day or so. What I would suggest is that you can read the posts directly from the board. Here is the link to that area of the board.

http://health.groups.yahoo.com/group/Breathe-Support/messages

I hope that your email issues are resolved soon.

Beth

Co-Moderator

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

(unknown)

Bethall my mails have come blank today, something wrongwith yahoo mail. Please send me digests nos.3969 tothe most recent one , I think we have reached 3973thanks and regards.Geeta

[Guest guest]

-Thank you mary-Beth, the problem seems to have resolved itself,

thank you once again.

Geeta

-- In Breathe-Support , Beth

wrote:

>

> Geeta,

> Good morning! I'm sorry you've been having problems with Yahoo.

Have you contacted Yahoo about the problem you're having? I had

issues the other day that seem to have been fixed now. Unfortunately

I don't have the power to send you digests. Ican only forward

individual messages and it would be very time consuming for me to

forward every message sent to the board for the last day or

so.  What I would suggest is that you can read the posts directly

from the board. Here is the link to that area of the board.

> http://health.groups.yahoo.com/group/Breathe-Support/messages

> I hope that your email issues are resolved soon.

>  Beth 

> Co-Moderator

> Age 48 Fibrotic NSIP 06/06

>  

> Change everything. Love and Forgive    

>  

>  

>

>

>

> (unknown)

>

>

>

> Beth

> all my mails have come blank today, something wrong

> with yahoo mail. Please send me digests nos.3969 to

> the most recent one , I think we have reached 3973

> thanks and regards.

> Geeta

>

[Guest guest]

Amy honey, It's Peggy again. we have had an onslaught of newbies this past few weeks. we that have been on the board for a while haven't had much of a chance lately. I was up really late and the board was quite is how I found your post. I am sure someone else will be responding.  Have you called the foundation to get an information package yet? You can find the number on the home page or drop an e-mail to Leanne. It is such good information.Hang in here you will learn a lot.  Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up."

[Guest guest]

.... depending on the day this board can be sad or glad or mad. Reading about your wife makes me sad. What a lot your family is dealing with.

Now remember, you are not going to die in the near short future! Some are 10, 12 14 years or more out from dx. Just plan on helping your wife and being there for your daughters and then go at it one day at a time. You'll look back on this day and say to yourself, "I never thought I could do it".

I hope most of your concerns can be quieted down by staying close to the board. There are good people here and knowledgeable about our disease. Seek those people out.

Love to you and yours.

MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there!

(unknown)

Hello,Special thanks to Leanne, Z., , Carolyn, Zena, Babs, Mayleen Jack, Beth, Sher and for the kindness. Having been dx last week I am still feeling numb and uncertain as to future plans. I am 53 with 7 and 11 year old daughters. The kicker is that my wife is waiting for a liver transplant and realizing I may not be available to help her or my daughters. The only Rx the pulmo gave me was a referral to a study at UCLA. Is anyone involved with Dr. Zisman's study at UCLA? Again, thank you all for the kindness. I have already learned a great deal from you all.

[Guest guest]

Amy Dawn, The saturation levels differ for

each of us. The lpm needed for me to stay at 92

is different than for someone else. The only way to get a fix on the

correct amount for you to stay within a safe and effective

range of saturation is to have a 6 minute walk test at your

pulmonologist's office.

They hook you up to an oximeter, blood pressure monitor and O2 and

then..actually walk with you around a course

that is about 100 feet or so. All along they say walk at your normal

speed..what's normal? with or without all the stuff attached?

The saturation number and the amount of O2 needed is completely

personal. Most doctors say anything over 90 is fine...I feel much

better at 92+

..I hope this helps. Talk to your doctor and get the simple test.

You'll have your own answers to a very complicated problem

Some insurance companies won't even cover O2 unless your saturation

number is less than88 ewith exertion..

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

Amy Dawn wrote:

Last night I posted a question only one person took the time to

answer. I reallly need help and wanted to know what has everyone been

told re: saturation should it be 93 95 etc should one person have 6 lpm

to get 97 or 4 to get 93? Only one person took the time to answer

(thank you Peggy) do you have to know everyone to get an answer.

Please help.

No virus found in this incoming message.

Checked by AVG. Version: 8.0.100 / Virus Database: 270.4.1/1516 - Release Date: 6/24/2008 7:53 AM

[Guest guest]

To qualify for my oxygen I had to fall below 88 while doing the walk

test. I hit 78.

/22/Ohio ~ Non-Hodgkins Lymphoma Survivor of 2 years 12/2005

~ Autologus Bone Marrow Transplant 09/2006 ~ Pulmonary Fibrosis

caused by chemotherapy 06/2008 ~

>

> > Last night I posted a question only one person took the time to

> > answer. I reallly need help and wanted to know what has everyone

been

> > told re: saturation should it be 93 95 etc should one person have

6

> > lpm to get 97 or 4 to get 93? Only one person took the time to

answer

> > (thank you Peggy) do you have to know everyone to get an answer.

> > Please help.

> >

> >

> >

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

-----

> >

> >

> >No virus found in this incoming message.

> >Checked by AVG.

> >Version: 8.0.100 / Virus Database: 270.4.1/1516 - Release Date:

6/24/2008 7:53 AM

> >

> >

>

[Guest guest]

Amy... so sorry I missed your post. As Peggy says, try and keep your O2 level about 90. Do you have an oximeter which makes it much easier to track?

I don't think you "use" liters of O2 to attain a level...You use O2 to keep the level above 90. It will be different for most of us. What liter of O2 has been Rx for you by Dr.?

No, you don't have to know everyone to get an answer...depends on who's on the board at the time and other things. Everyone does not respond to every post so some do get delayed. Just come back again! We're here.

MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there!

(unknown)

Last night I posted a question only one person took the time to answer. I reallly need help and wanted to know what has everyone been told re: saturation should it be 93 95 etc should one person have 6 lpm to get 97 or 4 to get 93? Only one person took the time to answer (thank you Peggy) do you have to know everyone to get an answer. Please help.

[Guest guest]

Thank you, 4 - 6 liters sometimes at 4 I am 98then sometimes low. I think Peggy described it best it sounds like me. Resting then as soon as I get up I drop. I would rather have 92 on 2 liters than 98 on 4. What do you think?

(unknown)

Last night I posted a question only one person took the time to answer. I reallly need help and wanted to know what has everyone been told re: saturation should it be 93 95 etc should one person have 6 lpm to get 97 or 4 to get 93? Only one person took the time to answer (thank you Peggy) do you have to know everyone to get an answer. Please help.

[Guest guest]

Thank you for your kind words and support.Subject: Re: (unknown)To: Breathe-Support Date: Tuesday, June 24, 2008, 12:34 PM

.... depending on the day this board can be sad or glad or mad. Reading about your wife makes me sad. What a lot your family is dealing with.

Now remember, you are not going to die in the near short future! Some are 10, 12 14 years or more out from dx. Just plan on helping your wife and being there for your daughters and then go at it one day at a time. You'll look back on this day and say to yourself, "I never thought I could do it".

I hope most of your concerns can be quieted down by staying close to the board. There are good people here and knowledgeable about our disease. Seek those people out.

Love to you and yours.

MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there!

(unknown)

Hello,Special thanks to Leanne, Z., , Carolyn, Zena, Babs, Mayleen Jack, Beth, Sher and for the kindness. Having been dx last week I am still feeling numb and uncertain as to future plans. I am 53 with 7 and 11 year old daughters. The kicker is that my wife is waiting for a liver transplant and realizing I may not be available to help her or my daughters. The only Rx the pulmo gave me was a referral to a study at UCLA. Is anyone involved with Dr. Zisman's study at UCLA? Again, thank you all for the kindness. I have already learned a great deal from you all.

[Guest guest]

Amy,

Sorry, I must have missed your question last night. The answer is it depends. No one can say what liter flow it will take to get any single person to a certain saturation level. If I'm sitting still, just reading or watching television 2 liters keeps me at 97 or 98. I can take it off if I'm sitting and maintain in the mid 90's for 20 minutes or so before I drop. If I'm up moving around I need anywhere from 4-5 liters to maintain my sats at 97 or so. Anything lower than that and I drop like a stone.

But my point is everyone is different and how our lungs react to this disease is different and how our lungs process and diffuse oxygen is different. What's true for me is not necessarily true for someone else.

My suggestion would be to monitor your sats with an oximeter and adjust your oxygen as you need it to keep your sats up. Obviously discuss this with your doctor. He/she may want to do a 24 hour oximetry to determine what liter flow you need under different circumstances.

Hope that helps!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

(unknown)

Last night I posted a question only one person took the time to answer. I reallly need help and wanted to know what has everyone been told re: saturation should it be 93 95 etc should one person have 6 lpm to get 97 or 4 to get 93? Only one person took the time to answer (thank you Peggy) do you have to know everyone to get an answer. Please help.

[Guest guest]

Amy... what ever works for you then do that. You will get more familiar as you use O2 and will know what you need...higher or lower. We all settle down after awhile and what seemed overwhelming becomes manageable.

What did the Dr. Rx for you and do you have an oximeter?

MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there!

(unknown)

Last night I posted a question only one person took the time to answer. I reallly need help and wanted to know what has everyone been told re: saturation should it be 93 95 etc should one person have 6 lpm to get 97 or 4 to get 93? Only one person took the time to answer (thank you Peggy) do you have to know everyone to get an answer. Please help.

[Guest guest]

Reading this post it sounds that, like me, you require different levels for different things. When using the oxymeter I found that I need slightly more for driving and for showering than I expected and more for walking the dog or walking to Lili's school than I do for walking around the house.

I haven't yet completed a 6min walking test as my sats drop too rapidly too soon

Love Ze xx>> Thank you, 4 - 6 liters sometimes at 4 I am 98then sometimes low. I think Peggy described it best it sounds like me. Resting then as soon as I get up I drop. I would rather have 92 on 2 liters than 98 on 4. What do you think?> > > > (unknown)> > Last night I posted a question only one person took the time to answer. I reallly need help and wanted to know what has everyone been told re: saturation should it be 93 95 etc should one person have 6 lpm to get 97 or 4 to get 93? Only one person took the time to answer (thank you Peggy) do you have to know everyone to get an answer. Please help. >

[Guest guest]



J/J... Yes, she is a beautiful woman. The guy standing beside her ain't bad either!

Glad to hear you are stable Joe. What good news. I enjoyed stability for a couple of years and now seem to have some progression...

Good luck on your appeal!

Love ya!

MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there!

(unknown)

This is a photo of Joe/Alane , when we met for lunch last week. Isn't she gorgeous? Her diagnosis is great also. Joanie and I really enjoyed meeting her and sharing lunch.     JOE/JOANIE JOE 60 IPF1/2008

GRIFFIN, GA.

[Guest guest]

n

I am in just about the same position you are in except I was not in S Korea. I was diagnosed with ILD in 06/06 and then it was IPF 06/06 but without a biopsy or further testing. I came to the same conclusion you did in that without any benefit to knowing the results of the test why take it. Well the doctor and hospital and others make more money but does not change the way I am treated or the recommended treatment plan. I have no insurance and only SS income to survive so watch the $. Keep looking because there are people out there that will help you but they are not easy to find and do not advertise their availability.

Fay

IPF 06/06 IL

(unknown)

Hello All:If anyone remembers my brief appearance in this forum I can'timagine why you do, but you have a fantastic memory! I was diagnosed with IPF in April, 2006, and a few months later went off to teach English in S. Korea. I had almost two wonder-ful years there, before the IPF caught up with me and I landedin a Korean hospital...this was one of the more interesting experiences I had in Korea, and most of the two years was inter-esting! Fortunately, Korean doctors are well trained, and although medical services are delivered differently, they are on a par with medical care here, with the exception of cost. My 12 days in the hospital,including 2 in intensive care, cost the equivalent of $320 US and my Korean health insurance paid another $650. My share included the 24hr a day services of a pbyongwon-a, or substitute family member, as I had no family in S.K...amazing how one

cancommunicate without speaking each other's language...Anyway, I'm back in the US with blood oxygen hovering at 90-91(and lower, of course, if I do something like walk across a room...)I do not have health insurance, and only a modest amount of money,most of which I need to live indoors and all that good stuff. In the US I have not seen a pulmonologist, and where I live in N.C. no pulmonologist will see you without doing a lot of invasive (and very expensive)procedure s. Several doctors in S. Korea, and one US internist told me that I would not benefit from these procedures.Another friend, an RN, has told me that I MUST, MUST, MUST have alung biopsy and a couple of other things, I'm an idiot if I don't do it even if I have to live in a tent yada, yada, yada. However, she got a little iffy on the answer to "How will this benefit me?"Can anyone here suggest a concrete benefit to me of

these procedures? The best I've gotten from a doctor was "Well, then we'll know what's going on in your lungs." When my follow-up question was "Will it change how you treat me?" the response was, "well, maybe..." spoken in tones that lead me to think the answer was really "well, no, not at all."The trade-off for me is that I might rapidly outlive my money with even a very short time horizon if I'm spending $$$$$ on medical care. Medicaid is not possible in N.C. and I don't want to move to another state where I know no one. S.S. Disability is problematical because 1) they told me I had to be diagnosed by a pulmonologist (and have all those tests) and 2) it would take two years to be approved and I can't receive Social Security Retirement while waiting. (I'm 63)As of right now I'm not on any medication (I was given steroids inS.K., didn't respond) but about to start on oxygen as needed. And

onemore thing...I really have no interest in a lung transplant.How do you all vote on lung biopsy, bronchoscopy and whatall for some-one in my financial position? And why?n

[Guest guest]

I just have to say that my heart breaks for those who do not have heath insurance. I know that NO health care system is perfect but all doctors and hospitals are free in Canada. I know that there are other issues but at least care is available to everyone. I wish there was something I could do to help. Diane IPF June 07New Brunswick, Canada

(unknown)

Hello All:If anyone remembers my brief appearance in this forum I can'timagine why you do, but you have a fantastic memory! I was diagnosed with IPF in April, 2006, and a few months later went off to teach English in S. Korea. I had almost two wonder-ful years there, before the IPF caught up with me and I landedin a Korean hospital...this was one of the more interesting experiences I had in Korea, and most of the two years was inter-esting! Fortunately, Korean doctors are well trained, and although medical services are delivered differently, they are on a par with medical care here, with the exception of cost. My 12 days in the hospital,including 2 in intensive care, cost the equivalent of $320 US and my Korean health insurance paid another $650. My share included the 24hr a day services of a pbyongwon-a, or substitute family member, as I had no family in S.K...amazing how one

cancommunicate without speaking each other's language...Anyway, I'm back in the US with blood oxygen hovering at 90-91(and lower, of course, if I do something like walk across a room...)I do not have health insurance, and only a modest amount of money,most of which I need to live indoors and all that good stuff. In the US I have not seen a pulmonologist, and where I live in N.C. no pulmonologist will see you without doing a lot of invasive (and very expensive)procedure s. Several doctors in S. Korea, and one US internist told me that I would not benefit from these procedures.Another friend, an RN, has told me that I MUST, MUST, MUST have alung biopsy and a couple of other things, I'm an idiot if I don't do it even if I have to live in a tent yada, yada, yada. However, she got a little iffy on the answer to "How will this benefit me?"Can anyone here suggest a concrete benefit to me of

these procedures? The best I've gotten from a doctor was "Well, then we'll know what's going on in your lungs." When my follow-up question was "Will it change how you treat me?" the response was, "well, maybe..." spoken in tones that lead me to think the answer was really "well, no, not at all."The trade-off for me is that I might rapidly outlive my money with even a very short time horizon if I'm spending $$$$$ on medical care. Medicaid is not possible in N.C. and I don't want to move to another state where I know no one. S.S. Disability is problematical because 1) they told me I had to be diagnosed by a pulmonologist (and have all those tests) and 2) it would take two years to be approved and I can't receive Social Security Retirement while waiting. (I'm 63)As of right now I'm not on any medication (I was given steroids inS.K., didn't respond) but about to start on oxygen as needed. And

onemore thing...I really have no interest in a lung transplant.How do you all vote on lung biopsy, bronchoscopy and whatall for some-one in my financial position? And why?n

Ask a question on any topic and get answers from real people. Go to Yahoo! Answers.

[Guest guest]

Hi n

I as dx IPF in June 2005. When I saw my pulmo this summer, I asked him which form of fibrosis did I have. He looked at me in surprise and sheeplishly said, "I don't know." There are treatments for some forms of PF and there are differing life expectancies. For those reasons, I wanted to know what form I had. I had already learned that those specifics can be determined only by a lumg biopsy, so I requested one.

It went smoothly, I had minimum discomfort, spent two days in the hospital. My cost was $652.00. Recovery was quick and I was doing my usual things on day of discharge.

What did I learn. The biopsy said I had Usual Interstial Pneumonia. My handbook described that as another name for IPF. Well, at least I learned what I had, which was what I had had for three years. For ease of mind, it was worth it.

This is a personal decision and I would never recommend another person to have one. You need a reason that is strong enough that you are willing to do it knowling the cost and discomfort you may have. Jack79/IPF - UIP/dx06/05 Maine

(unknown)

Hello All:If anyone remembers my brief appearance in this forum I can'timagine why you do, but you have a fantastic memory! I was diagnosed with IPF in April, 2006, and a few months later went off to teach English in S. Korea. I had almost two wonder-ful years there, before the IPF caught up with me and I landedin a Korean hospital...this was one of the more interesting experiences I had in Korea, and most of the two years was inter-esting! Fortunately, Korean doctors are well trained, and although medical services are delivered differently, they are on a par with medical care here, with the exception of cost. My 12 days in the hospital,including 2 in intensive care, cost the equivalent of $320 US and my Korean health insurance paid another $650. My share included the 24hr a day services of a pbyongwon-a, or substitute family member, as I had no family in S.K...amazing how one

cancommunicate without speaking each other's language...Anyway, I'm back in the US with blood oxygen hovering at 90-91(and lower, of course, if I do something like walk across a room...)I do not have health insurance, and only a modest amount of money,most of which I need to live indoors and all that good stuff. In the US I have not seen a pulmonologist, and where I live in N.C. no pulmonologist will see you without doing a lot of invasive (and very expensive)procedure s. Several doctors in S. Korea, and one US internist told me that I would not benefit from these procedures.Another friend, an RN, has told me that I MUST, MUST, MUST have alung biopsy and a couple of other things, I'm an idiot if I don't do it even if I have to live in a tent yada, yada, yada. However, she got a little iffy on the answer to "How will this benefit me?"Can anyone here suggest a concrete benefit to me of

these procedures? The best I've gotten from a doctor was "Well, then we'll know what's going on in your lungs." When my follow-up question was "Will it change how you treat me?" the response was, "well, maybe..." spoken in tones that lead me to think the answer was really "well, no, not at all."The trade-off for me is that I might rapidly outlive my money with even a very short time horizon if I'm spending $$$$$ on medical care. Medicaid is not possible in N.C. and I don't want to move to another state where I know no one. S.S. Disability is problematical because 1) they told me I had to be diagnosed by a pulmonologist (and have all those tests) and 2) it would take two years to be approved and I can't receive Social Security Retirement while waiting. (I'm 63)As of right now I'm not on any medication (I was given steroids inS.K., didn't respond) but about to start on oxygen as needed. And

onemore thing...I really have no interest in a lung transplant.How do you all vote on lung biopsy, bronchoscopy and whatall for some-one in my financial position? And why?n

[Guest guest]

I have been reading posts, but not posting for a week now. Have been really sick with some kind of stomach bug, nausea, vomiting, the whole 9 yards. Only lost 2 pounds though (BOO HOO!!). I just wish from this post that I could live in Canada!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi

Subject: Re: (unknown)To: Breathe-Support Date: Tuesday, July 29, 2008, 5:15 PM

I just have to say that my heart breaks for those who do not have heath insurance. I know that NO health care system is perfect but all doctors and hospitals are free in Canada. I know that there are other issues but at least care is available to everyone. I wish there was something I could do to help. Diane IPF June 07New Brunswick, Canada

(unknown)

Hello All:If anyone remembers my brief appearance in this forum I can'timagine why you do, but you have a fantastic memory! I was diagnosed with IPF in April, 2006, and a few months later went off to teach English in S. Korea. I had almost two wonder-ful years there, before the IPF caught up with me and I landedin a Korean hospital...this was one of the more interesting experiences I had in Korea, and most of the two years was inter-esting! Fortunately, Korean doctors are well trained, and although medical services are delivered differently, they are on a par with medical care here, with the exception of cost. My 12 days in the hospital,including 2 in intensive care, cost the equivalent of $320 US and my Korean health insurance paid another $650. My share included the 24hr a day services of a pbyongwon-a, or substitute family member, as I had no family in S.K...amazing how one

cancommunicate without speaking each other's language...Anyway, I'm back in the US with blood oxygen hovering at 90-91(and lower, of course, if I do something like walk across a room...)I do not have health insurance, and only a modest amount of money,most of which I need to live indoors and all that good stuff. In the US I have not seen a pulmonologist, and where I live in N.C. no pulmonologist will see you without doing a lot of invasive (and very expensive)procedure s. Several doctors in S. Korea, and one US internist told me that I would not benefit from these procedures.Another friend, an RN, has told me that I MUST, MUST, MUST have alung biopsy and a couple of other things, I'm an idiot if I don't do it even if I have to live in a tent yada, yada, yada. However, she got a little iffy on the answer to "How will this benefit me?"Can anyone here suggest a concrete benefit to me of

these procedures? The best I've gotten from a doctor was "Well, then we'll know what's going on in your lungs." When my follow-up question was "Will it change how you treat me?" the response was, "well, maybe..." spoken in tones that lead me to think the answer was really "well, no, not at all."The trade-off for me is that I might rapidly outlive my money with even a very short time horizon if I'm spending $$$$$ on medical care. Medicaid is not possible in N.C. and I don't want to move to another state where I know no one. S.S. Disability is problematical because 1) they told me I had to be diagnosed by a pulmonologist (and have all those tests) and 2) it would take two years to be approved and I can't receive Social Security Retirement while waiting. (I'm 63)As of right now I'm not on any medication (I was given steroids inS.K., didn't respond) but about to start on oxygen as needed. And

onemore thing...I really have no interest in a lung transplant.How do you all vote on lung biopsy, bronchoscopy and whatall for some-one in my financial position? And why?n

Ask a question on any topic and get answers from real people. Go to Yahoo! Answers.

[Guest guest]

Sorry about what you have to deal with, at times it seems the frustration of what to do

or how you will do it out weighs the disease itself. Welcome to my world! I too struggle with

some of the "procedures" I am suppose to have. The lung biopsy, well I wouldnt do it, but

I am donating my whole body when I pass and I feel they can "research" all they want then.

I dont understand how my xrays dont show enough(I saw them Im no expert but the Holes or

the honeycomb that is obviously growing kinda gave me a clue) I dont know how any one

can fake the lack of oxygen or all the vital organ readings at the emergency room. but still

Social Security wants more December 2006 was my last paycheck. I loved making money!

why on earth would I want to settle for less money. God, just to buy my favorite moisturizer,

my favorite shampoo, clothes for gosh sake! oops lol Ive gotten off the topic here. I guess

if the reasons they give you for a biopsy satisfy you and you can do it go for it. I for one

dont see it for myself.

With Warm Regards, Ali Klisser"Be who you are, & say what you feel, because those who mind don't matter, & those who matter don't mind." ~Dr. Suess ~

To: Breathe-Support From: marionhgriffin@...Date: Tue, 29 Jul 2008 20:52:05 +0000Subject: (unknown)

Hello All:If anyone remembers my brief appearance in this forum I can'timagine why you do, but you have a fantastic memory! I was diagnosed with IPF in April, 2006, and a few months later went off to teach English in S. Korea. I had almost two wonder-ful years there, before the IPF caught up with me and I landedin a Korean hospital...this was one of the more interesting experiences I had in Korea, and most of the two years was inter-esting! Fortunately, Korean doctors are well trained, and although medical services are delivered differently, they are on a par with medical care here, with the exception of cost. My 12 days in the hospital,including 2 in intensive care, cost the equivalent of $320 US and my Korean health insurance paid another $650. My share included the 24hr a day services of a pbyongwon-a, or substitute family member, as I had no family in S.K...amazing how one cancommunicate without speaking each other's language...Anyway, I'm back in the US with blood oxygen hovering at 90-91(and lower, of course, if I do something like walk across a room...)I do not have health insurance, and only a modest amount of money,most of which I need to live indoors and all that good stuff. In the US I have not seen a pulmonologist, and where I live in N.C. no pulmonologist will see you without doing a lot of invasive (and very expensive)procedures. Several doctors in S. Korea, and one US internist told me that I would not benefit from these procedures.Another friend, an RN, has told me that I MUST, MUST, MUST have alung biopsy and a couple of other things, I'm an idiot if I don't do it even if I have to live in a tent yada, yada, yada. However, she got a little iffy on the answer to "How will this benefit me?"Can anyone here suggest a concrete benefit to me of these procedures? The best I've gotten from a doctor was "Well, then we'll know what's going on in your lungs." When my follow-up question was "Will it change how you treat me?" the response was, "well, maybe..." spoken in tones that lead me to think the answer was really "well, no, not at all."The trade-off for me is that I might rapidly outlive my money with even a very short time horizon if I'm spending $$$$$ on medical care. Medicaid is not possible in N.C. and I don't want to move to another state where I know no one. S.S. Disability is problematical because 1) they told me I had to be diagnosed by a pulmonologist (and have all those tests) and 2) it would take two years to be approved and I can't receive Social Security Retirement while waiting. (I'm 63)As of right now I'm not on any medication (I was given steroids inS.K., didn't respond) but about to start on oxygen as needed. And onemore thing...I really have no interest in a lung transplant.How do you all vote on lung biopsy, bronchoscopy and whatall for some-one in my financial position? And why?n Keep your kids safer online with Windows Live Family Safety. Help protect your kids.

[Guest guest]

I do think of you, Caro, everytime you post and cannot get the medical care you need. I am sure you are very happy living in the US as I am in Canada but it would be nice if free health care were available to everyone across the globe. Diane IPF June 07New Brunswick, Canada

(unknown)

Hello All:If anyone remembers my brief appearance in this forum I can'timagine why you do, but you have a fantastic memory! I was diagnosed with IPF in April, 2006, and a few months later went off to teach English in S. Korea. I had almost two wonder-ful years there, before the IPF caught up with me and I landedin a Korean hospital...this was one of the more interesting experiences I had in Korea, and most of the two years was inter-esting! Fortunately, Korean doctors are well trained, and although medical services are delivered differently, they are on a par with medical care here, with the exception of cost. My 12 days in the hospital,including 2 in intensive care, cost the equivalent of $320 US and my Korean health insurance paid another $650. My share included the 24hr a day services of a pbyongwon-a, or substitute family member, as I had no family in S.K...amazing how one

cancommunicate without speaking each other's language...Anyway, I'm back in the US with blood oxygen hovering at 90-91(and lower, of course, if I do something like walk across a room...)I do not have health insurance, and only a modest amount of money,most of which I need to live indoors and all that good stuff. In the US I have not seen a pulmonologist, and where I live in N.C. no pulmonologist will see you without doing a lot of invasive (and very expensive)procedure s. Several doctors in S. Korea, and one US internist told me that I would not benefit from these procedures.Another friend, an RN, has told me that I MUST, MUST, MUST have alung biopsy and a couple of other things, I'm an idiot if I don't do it even if I have to live in a tent yada, yada, yada. However, she got a little iffy on the answer to "How will this benefit me?"Can anyone here suggest a concrete benefit to me of

these procedures? The best I've gotten from a doctor was "Well, then we'll know what's going on in your lungs." When my follow-up question was "Will it change how you treat me?" the response was, "well, maybe..." spoken in tones that lead me to think the answer was really "well, no, not at all."The trade-off for me is that I might rapidly outlive my money with even a very short time horizon if I'm spending $$$$$ on medical care. Medicaid is not possible in N.C. and I don't want to move to another state where I know no one. S.S. Disability is problematical because 1) they told me I had to be diagnosed by a pulmonologist (and have all those tests) and 2) it would take two years to be approved and I can't receive Social Security Retirement while waiting. (I'm 63)As of right now I'm not on any medication (I was given steroids inS.K., didn't respond) but about to start on oxygen as needed. And

onemore thing...I really have no interest in a lung transplant.How do you all vote on lung biopsy, bronchoscopy and whatall for some-one in my financial position? And why?n

Ask a question on any topic and get answers from real people. Go to Yahoo! Answers.

Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now!

[Guest guest]

Hey n, I have much to say about Social Security....problem is there's a good chance it will do you absolutely no good. Bottom line is that instead of this Federal agency having one rulebook that everyone reads the same way, it appears that there are many, many interpretations. For example, your case vs my case. I called my nearest SS office, which is Anchorage, in December 07, while I was still working. The lady I got was unbelievably helpful. She took my application for retirement (I turned 63 in Jan 08), AND my application for disability and explained to me it would be difficult to get me (tongue in cheek here) a disability while still working. I retired in Feb 08 but had earnings over the limit for SS retirement, so I didn't start getting retirement until March, which means I saw the money in April. So, I'm getting retirement, not the full

amount that I'd have to work until 66 to receive, (I had fun explaining to her why 3 or 4 years into the future was/is a place I don't go). I'd given the lady at SS my retirement date and she promised to begin processing my disability claim on that day. I'd decided that I wasn't going to hold my breath. When I hadn't heard anything by June I called and was informed that my disability had been approved and I'd receive my first benefit in August, something about a 6 month waiting period from last day worked. No muss, No fuss. Due to the fact that my diagnosis came following a fun period involving chemo and radiation, there were many CTs and bronchoscopies that SS had access to and there's no doubt that made a difference in their determination. So, that's the part that probably will do you no good. However, what may help is this.........the Anchorage office is terribly understaffed, as are many offices, and when we'd call them most times

our call would be re-routed via the 800# to one of their service centers. You never knew who you're going to get, it may be St Louis, Baltimore, Seattle, or Houston. In my job I dealt with SS alot......assisting clients in applying for disability, following through, and maintaining their open cases. Most times we'd just call the 800# in the first place. We'd explain what we needed and then we'd get their version of "the official policy and rulebook". If we didn't get the right answer we'd just hang up, call the 800# () again, and keep at it until we got what we needed. In 20 years it worked most every time. Eventually you get a person that does their job, that understands that they are a public servant, etc. If you try this and they ask you why you don't go to the local office, simply tell them........."because I am disabled". The thing to remember is that if what you are told does not sound right to a reasonable person......it probably

ain't. And never, never vent your frustrations on them. It does not work, trust me, I learned the hard way.

Your other issues are more difficult for me to respond to........I've been the medication route, all eventually discontinued except prednisone, which I'm trying to get off of. I have responded to it well in the past and would take it again. I've been stable for over a year. While taking all the immunosuppressants I had lots of bouts with pneumonia and lung infections. After seeing one doctor for more than 2 years I saw my new pulmonologist in Dec. He wanted to see me in three months. I've yet to go back. I can't think of a good reason to go back.....oh, they could do another bronch and a pulmonary function test to tell me what I already know, but the question is the same one you've asked, "how will that effect the way you treat me".

Biopsy..........same question. Given all the other factors, my age, I do not want a transplant. There are many folks here that have, for good reason, decided to do the biopsy. It's just not for me. There are some really smart folks here, n and I'm sure you'll get some very important feedback.

Welcome home........I guess. I know in my condition there is no way I'd want to be abroad instead of home, but I do have insurance. Are you sure there is no way you can get Medicare early?

Good Luck

jim IPF 05

alaska

Subject: (unknown)To: Breathe-Support Date: Tuesday, July 29, 2008, 12:52 PM

Hello All:If anyone remembers my brief appearance in this forum I can'timagine why you do, but you have a fantastic memory! I was diagnosed with IPF in April, 2006, and a few months later went off to teach English in S. Korea. I had almost two wonder-ful years there, before the IPF caught up with me and I landedin a Korean hospital...this was one of the more interesting experiences I had in Korea, and most of the two years was inter-esting! Fortunately, Korean doctors are well trained, and although medical services are delivered differently, they are on a par with medical care here, with the exception of cost. My 12 days in the hospital,including 2 in intensive care, cost the equivalent of $320 US and my Korean health insurance paid another $650. My share included the 24hr a day services of a pbyongwon-a, or substitute family member, as I had no family in S.K...amazing how one

cancommunicate without speaking each other's language...Anyway, I'm back in the US with blood oxygen hovering at 90-91(and lower, of course, if I do something like walk across a room...)I do not have health insurance, and only a modest amount of money,most of which I need to live indoors and all that good stuff. In the US I have not seen a pulmonologist, and where I live in N.C. no pulmonologist will see you without doing a lot of invasive (and very expensive)procedure s. Several doctors in S. Korea, and one US internist told me that I would not benefit from these procedures.Another friend, an RN, has told me that I MUST, MUST, MUST have alung biopsy and a couple of other things, I'm an idiot if I don't do it even if I have to live in a tent yada, yada, yada. However, she got a little iffy on the answer to "How will this benefit me?"Can anyone here suggest a concrete benefit to me of

these procedures? The best I've gotten from a doctor was "Well, then we'll know what's going on in your lungs." When my follow-up question was "Will it change how you treat me?" the response was, "well, maybe..." spoken in tones that lead me to think the answer was really "well, no, not at all."The trade-off for me is that I might rapidly outlive my money with even a very short time horizon if I'm spending $$$$$ on medical care. Medicaid is not possible in N.C. and I don't want to move to another state where I know no one. S.S. Disability is problematical because 1) they told me I had to be diagnosed by a pulmonologist (and have all those tests) and 2) it would take two years to be approved and I can't receive Social Security Retirement while waiting. (I'm 63)As of right now I'm not on any medication (I was given steroids inS.K., didn't respond) but about to start on oxygen as needed. And

onemore thing...I really have no interest in a lung transplant.How do you all vote on lung biopsy, bronchoscopy and whatall for some-one in my financial position? And why?n

[Guest guest]

I SOOOO totally agree!! I don't know why with the taxes and SS we pay while we are able to be employed that the government could not help us out like they do in Canada. Our country would be so much better!!

On the other hand, I have a question -- Has anyone out there ever gotten diabetes from taking prednisone? I went for my 3-month checkup on Tuesday to my family practice physician and she said that the next time I come in for my monthly B-12 injection, which will be the end of August, that I need to have my vitamin D3 checked, cuz that can cause fatigue and tiredness, and she also wants me to come in fasting so she can check my blood sugar, cuz it was 137, which is not extremely high, but is slightly elevated, and she said that prednisone can sometimes cause diabetes. Also, I have diabetes in my family so that is another plus. I don't think I can deal with having to take shots and count carbs and all that other crap that I type everyday regarding diabetes. My brain is too far gone from pain meds to be able to comprehend. What would I have to do? Have someone come by and give me shots of insulin if I needed

it? OMG!! I hope it doesn't come to that!! Was just wondering if anyone else have ever gotten diabetes from taking prednisone? I have never heard of that and I am now very curious to see. Thanks for all the info you guys give me even though I don't post as often as I should. I so appreciate each and every one of you for being there for me. I promise to try and post more often. I hope all of you are doing great and I pray often for each of you. You are may AIR FAMILY and I love you all very much!!

CaroCaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi

From: Diane <dtpaul00yahoo (DOT) ca>Subject: Re: (unknown)To: Breathe-Support@ yahoogroups. comDate: Tuesday, July 29, 2008, 5:15 PM

I just have to say that my heart breaks for those who do not have heath insurance. I know that NO health care system is perfect but all doctors and hospitals are free in Canada. I know that there are other issues but at least care is available to everyone. I wish there was something I could do to help. Diane IPF June 07New Brunswick, Canada

(unknown)

Hello All:If anyone remembers my brief appearance in this forum I can'timagine why you do, but you have a fantastic memory! I was diagnosed with IPF in April, 2006, and a few months later went off to teach English in S. Korea. I had almost two wonder-ful years there, before the IPF caught up with me and I landedin a Korean hospital...this was one of the more interesting experiences I had in Korea, and most of the two years was inter-esting! Fortunately, Korean doctors are well trained, and although medical services are delivered differently, they are on a par with medical care here, with the exception of cost. My 12 days in the hospital,including 2 in intensive care, cost the equivalent of $320 US and my Korean health insurance paid another $650. My share included the 24hr a day services of a pbyongwon-a, or substitute family member, as I had no family in S.K...amazing how one

cancommunicate without speaking each other's language...Anyway, I'm back in the US with blood oxygen hovering at 90-91(and lower, of course, if I do something like walk across a room...)I do not have health insurance, and only a modest amount of money,most of which I need to live indoors and all that good stuff. In the US I have not seen a pulmonologist, and where I live in N.C. no pulmonologist will see you without doing a lot of invasive (and very expensive)procedure s. Several doctors in S. Korea, and one US internist told me that I would not benefit from these procedures.Another friend, an RN, has told me that I MUST, MUST, MUST have alung biopsy and a couple of other things, I'm an idiot if I don't do it even if I have to live in a tent yada, yada, yada. However, she got a little iffy on the answer to "How will this benefit me?"Can anyone here suggest a concrete benefit to me of

these procedures? The best I've gotten from a doctor was "Well, then we'll know what's going on in your lungs." When my follow-up question was "Will it change how you treat me?" the response was, "well, maybe..." spoken in tones that lead me to think the answer was really "well, no, not at all."The trade-off for me is that I might rapidly outlive my money with even a very short time horizon if I'm spending $$$$$ on medical care. Medicaid is not possible in N.C. and I don't want to move to another state where I know no one. S.S. Disability is problematical because 1) they told me I had to be diagnosed by a pulmonologist (and have all those tests) and 2) it would take two years to be approved and I can't receive Social Security Retirement while waiting. (I'm 63)As of right now I'm not on any medication (I was given steroids inS.K., didn't respond) but about to start on oxygen as needed. And

onemore thing...I really have no interest in a lung transplant.How do you all vote on lung biopsy, bronchoscopy and whatall for some-one in my financial position? And why?n

Ask a question on any topic and get answers from real people. Go to Yahoo! Answers.

Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now!