Re: (unknown)

[Guest guest]

Caro

Prednisone does often lead to diabetes.

>

> From: Diane dtpaul00yahoo (DOT) ca>

> Subject: Re: (unknown)

> To: Breathe-Support@ yahoogroups. com

> 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 07

> New Brunswick, Canada

>

>

>

>

> (unknown)

>

>

>

> Hello All:

>

> If anyone remembers my brief appearance in this forum I can't

> imagine 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 landed

> in 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 can

> communicate 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 pulmon

> ologist 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 a

> lung 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 in

> S.K., didn't respond) but about to start on oxygen as needed. And one

> more 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]

Hi Brett, It is good to see you posting. I am still amazed at all you have been through and are still facing. God knew what he was doing giving you such perfect Sunshine covered with honey.Still praying for you. How are your brothers doing ?  Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up."

[Guest guest]

Hi peggy ,good to hear from you as wellmy brother's are doing as well as can be expected no health issues so far aron gets checked out every three monthsand we are still trying to get cory in to get a physical everyone in my family now knows about my cancerbut what I have not told them is the severity and prognosis both of the oncologists I saw said the chance of 1-year survival is at 20% and 2-years about 2% Im thinking Im going to beat all the odds just wait and seeI start chemo next week fun , funBrett Bowser 40 MI.familial UIP/IPF 11/07 stage 4 lung cancer 7/08 Hi Brett, It is good to see you posting. I am still amazed at all you have been through and are still facing. God knew what he was doing giving you such perfect Sunshine covered with honey.Still praying for you. How are your brothers doing ? <Sun Flower.gif>Love and Prayers, Peggy IPF 2004, Florida"Worry looks around, Sorry looks back, Faith looks up."

[Guest guest]

Hi Caro ... wanted to say hello and hope you are feeling better now.

I have no info on the diabetes question, don't know.

Can you get the pain patch? It surely is helping me with good pain control. I have side effects to nearly every narcotic I take but so far the patch is doing a good job.

Take care.

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

(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]

I don't know about the pain patch. I haven't asked about it yet. Is it Fentanyl or Duragesic?CaroASTHMA 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.

[Guest guest]

Thanks for the info. Seems like I am one of the many fortunate ones to get nearly every side effect from prednisone!! But, hey, at least I am still breathing!! I was reading some of the posts and see that Vicky is not doing well. If you are reading this, Vicky, you are in my thoughts and prayers and I hope you are better soon.CaroASTHMA 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! No virus found in this incoming message.

Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.7/1581 - Release Date: 7/30/2008 6:56 AM

[Guest guest]

Well, it is good to know that at least it may go away if I do have it now. I guess if I absolutely HAD to give myself a shot, I could learn to do it, but I sure won't like it!! I am down to 5 mg now but have started getting that hacky cough back again, so I don't know what to expect next. Still have only managed to get 3 or 4 pounds off and keep it off and have been trying for the last 3 months. Everyone told me don't even try when you are on steroids, cuz there is no way. I have heard some people who actually lost weight on prednisone, though. Wish I could have been one of those lucky people!! I agree and it irks me, too, because most of the side effects I have gotten I found out were side effects from this group. I know a doctor's time is limited when you go for a visit, but I feel like they owe it to us to tell

us what to expect or at least what could happen. Thanks again, MB!!CaroASTHMA 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!

[Guest guest]

Thanks Bruce!! Again, were it not for this group, I would be so lost!! I love you all!!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, 11:40 PM

CaroPrednisone does often lead to diabetes.>> From: Diane dtpaul00yahoo (DOT) ca>> Subject: Re: (unknown)> To:

Breathe-Support@ yahoogroups. com> Date: Tuesday, July 29, 2008, 5:15 PM>>>>>>>> I just have to say that my heart breaks for those who do not haveheath insurance. I know that NO health care system is perfect but alldoctors and hospitals are free in Canada. I know that there are otherissues but at least care is available to everyone. I wish there wassomething I could do to help.> Diane > IPF June 07> New Brunswick, Canada>>>>> (unknown)>>>> Hello All:>> If anyone remembers my brief appearance in this

forum I can't> imagine 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 landed> in 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

can> communicate 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 pulmon> ologist 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 a> lung 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 in> S.K., didn't respond) but about to start on oxygen as needed. And one> more 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 toYahoo! Answers.>>>>>>> Yahoo! Canada Toolbar : Search from anywhere on the web and bookmarkyour favourite sites. Download it now!>

[Guest guest]

Caro... I'm using the Fentanyl. Comes in generic too.

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

(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]

Irene... the name may be the same, or similar (Fentanyl) but the "patch" is not used in that way at all. In fact it's made clear that the patch is only used for people who have chronic pain and have already taken other narcotics for pain control. Not to be used for "short term" pain control or "immediate relief".

My fingers have been crossed so hard against having side effects I think they are stuck that way! So far so good.

I don't know anything about using it for surgery...

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

(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

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[Guest guest]

Sher,

You are absolutely correct in stating that what you are using, Fentanyl patch, is not the same thing that Irene is talking about. Fentanyl was originally developed back in the late 50's and various types of fentanyl (analogues) are used for everything from anesthesia to short acting potent pain meds to the long acting version that's used in the pain patch.

It always amazes me how many drugs can come from the development of one drug. Penicillin is an excellent example....literally dozens and dozens of antibiotics are "penicillin derivitives" or direct descendents of the original penicillin.

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

(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]

Right on ML...thanks for your added knowledge.

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

(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]

Hello Walt... I want to welcome you to the board and express my sadness that you found us, which means you have what we have!

This is the best place you could be though. There is always someone to answer questions and we a supportive group with each other.

Those 13 years of breathing chemicals must have been the likely cause of your IPF. Many of us don't have any idea how we got IPF.

Find another Dr to see, preferably a pulmonologist and follow up with s/he. There will be breathing tests that we all take periodically and perhaps a CAT scan. None of them painful.

If it's harder and harder to do everyday things, changes are you may need oxygen. Without enough O2 other organs are damaged as well.

None of us progress the same or in the same time graph...but a Dr will help you with your questions and you will get support and help here too.

Where do you live? (I'm in Oregon) and how old are you?

Welcome Walt, I'll watch for your posts to get to know you better.

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

(unknown)

Hello all

New and first post. So not sure what I am doing, I have read some of the postings and can say it’s nice to listen to what others have to say that “know” My family is supportive but I don’t think they truly understand. I was diagnose in 06 and had the bronchoscopy and then open biopsy They gave am a list of things that is wrong and IPF being one. The doctors want me to have a CT every 6 months to check progress. I worked in a chemical plant for 13 years and had Nemours exospheres and a few hospital trips to all kinds of chemicals, Chlorine, asbestos and Hydrochloric and sulfuric acid to name just a few. I read that these can be a cause but when I talked to the Doctors about this it’s like they don’t want to here it. I have not been back to the doctor since 06. It’s harder and harder working and to do the everyday things. I just DON”T want to go back to the doctor (dog and pony show) Is there a chart or something I could look at to see where I am at or what to expect? I want to distinguish between getting old and?

Thanks for listing

Walt

"Dont be afraid of dying. Be afraid of the unlived life"

[Guest guest]

Hi Walt, Do yourself a huge favor. Find a Dr. that you can relate with. YOU NEED 02 at some point. probably now. If there is a University Teaching Hosp. near you they are very good. You didn't say where you are. We have peoplehere from all over the world. So jump in and feel at home here. We are an Air Family and WE GET IT. Our caregivers and spouses can't possibly understand what we live with but in this group we have all been or going where you are. Please see a Pulmonologist for PFT tests and see where your saturation is.  There are caring Dr's out there.Stay in touch.  Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up."

[Guest guest]

Hi Sher

Let’s see I am 51 (not very many freeway miles mostly unpaved roads). I am from Oregon My wife (separated) and three kids moved up to Oak Harbor Wa in 2001 where I live with my 15 year old son and work on the Navy base. I still have two grown kids and 4 grand kids in Portland that I try to go down and see as often as I can.

I know I need to go back to the doctor if for nothing else to see where things are at. I have had many MRI’s and breathing test just nothing since 06. Other then the Doc telling you is there any way of knowing or signs if and when you need O2? I know this might sound strange but I have/am resistant to using O2 just don’t want to admit that I might need it.

Again thanks for listing

Walt

"Dont be afraid of dying. Be afraid of the unlived life"

Subject: Re: (unknown)To: Breathe-Support Date: Thursday, July 31, 2008, 9:25 AM

Hello Walt... I want to welcome you to the board and express my sadness that you found us, which means you have what we have!

This is the best place you could be though. There is always someone to answer questions and we a supportive group with each other.

Those 13 years of breathing chemicals must have been the likely cause of your IPF. Many of us don't have any idea how we got IPF.

Find another Dr to see, preferably a pulmonologist and follow up with s/he. There will be breathing tests that we all take periodically and perhaps a CAT scan. None of them painful.

If it's harder and harder to do everyday things, changes are you may need oxygen. Without enough O2 other organs are damaged as well.

None of us progress the same or in the same time graph...but a Dr will help you with your questions and you will get support and help here too.

Where do you live? (I'm in Oregon) and how old are you?

Welcome Walt, I'll watch for your posts to get to know you better.

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

(unknown)

Hello all

New and first post. So not sure what I am doing, I have read some of the postings and can say it’s nice to listen to what others have to say that “know” My family is supportive but I don’t think they truly understand. I was diagnose in 06 and had the bronchoscopy and then open biopsy They gave am a list of things that is wrong and IPF being one. The doctors want me to have a CT every 6 months to check progress. I worked in a chemical plant for 13 years and had Nemours exospheres and a few hospital trips to all kinds of chemicals, Chlorine, asbestos and Hydrochloric and sulfuric acid to name just a few. I read that these can be a cause but when I talked to the Doctors about this it’s like they don’t want to here it. I have not been back to the doctor since 06. It’s harder and harder working and to do the everyday things. I just DON”T want to go back to the doctor (dog and pony show) Is

there a chart or something I could look at to see where I am at or what to expect? I want to distinguish between getting old and?

Thanks for listing

Walt

"Dont be afraid of dying. Be afraid of the unlived life"

[Guest guest]

Thank you Peggy

Our care should not be to have lived long as to have lived enough.

Subject: Re: (unknown)To: Breathe-Support Date: Thursday, July 31, 2008, 9:55 AM

Hi Walt, Do yourself a huge favor. Find a Dr. that you can relate with. YOU NEED 02 at some point. probably now.

If there is a University Teaching Hosp. near you they are very good. You didn't say where you are. We have people

here from all over the world. So jump in and feel at home here. We are an Air Family and WE GET IT. Our caregivers and spouses can't possibly understand what we live with but in this group we have all been or going where you are.

Please see a Pulmonologist for PFT tests and see where your saturation is. There are caring Dr's out there.

Stay in touch.

Love and Prayers, Peggy

IPF 2004, Florida

"Worry looks around,

Sorry looks back,

Faith looks up."

[Guest guest]

Walt... my gosh, where in Oregon did you live and what part of Ptld are your kids?

Sorry to read you are separated. Does your family/kids know about your dx (diagnosis)? Who do you have for support?

I think you already know you are having "signs" and do not want to face needing O2. Remember, you can do yourself MORE harm if you allow your body to not get the oxygen in your blood that it needs.

I do understand your "denial" though. I didn't want to use O2 either but finally I wanted to breathe better more than I did not want O2. I still don't use it as often as I should. I hate carrying the little black bag (and it ain't for a dinner party) with the cylinder of O2. It is getting easier tho' for the same reason. I need to breathe easier!

I also have O2 at night, hooked up to my CPAP machine. I do sleep so much better that I'm glad to have it.

You may not know CPAP...I have sleep apnea and the machine keeps me from holding my breath during sleep and/or just not taking a breath. Works great, I sleep better with that too.

Walt, go see a Dr. You can imagine far worse things than the Dr may tell you. At any rate, you need to know how to care for yourself.

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

(unknown)

Hello all

New and first post. So not sure what I am doing, I have read some of the postings and can say it’s nice to listen to what others have to say that “know” My family is supportive but I don’t think they truly understand. I was diagnose in 06 and had the bronchoscopy and then open biopsy They gave am a list of things that is wrong and IPF being one. The doctors want me to have a CT every 6 months to check progress. I worked in a chemical plant for 13 years and had Nemours exospheres and a few hospital trips to all kinds of chemicals, Chlorine, asbestos and Hydrochloric and sulfuric acid to name just a few. I read that these can be a cause but when I talked to the Doctors about this it’s like they don’t want to here it. I have not been back to the doctor since 06. It’s harder and harder working and to do the everyday things. I just DON”T want to go back to the doctor (dog and pony show) Is there a chart or something I could look at to see where I am at or what to expect? I want to distinguish between getting old and?

Thanks for listing

Walt

"Dont be afraid of dying. Be afraid of the unlived life"

[Guest guest]

Sher

I grew up in Oregon and live all over Medford, The Dalles , Oregon city and last Milwaukie I have a daughter 52nd and Harold and one at 145th off Holgate.

Yes all the Family knows about the initial DX but not where I am at now health wise. I do have a friend that is in the health area and gives me advice as much as I will listen

I have my 15 year old son with me now. I am working full time but not sure how much longer I can. The Mayo clinic among others web site list the chemicals I was exposed to as a “likely” cause if in fact this is the cause then I would be able to stop working and not worry about how I am going to take care of the family.

Take care

Walt

Our care should not be to have lived long as to have lived enough.

From: Sher Bauman <bofuswbcable (DOT) net>Subject: Re: (unknown)To: Breathe-Support@ yahoogroups. comDate: Thursday, July 31, 2008, 9:25 AM

Hello Walt... I want to welcome you to the board and express my sadness that you found us, which means you have what we have!

This is the best place you could be though. There is always someone to answer questions and we a supportive group with each other.

Those 13 years of breathing chemicals must have been the likely cause of your IPF. Many of us don't have any idea how we got IPF.

Find another Dr to see, preferably a pulmonologist and follow up with s/he. There will be breathing tests that we all take periodically and perhaps a CAT scan. None of them painful.

If it's harder and harder to do everyday things, changes are you may need oxygen. Without enough O2 other organs are damaged as well.

None of us progress the same or in the same time graph...but a Dr will help you with your questions and you will get support and help here too.

Where do you live? (I'm in Oregon) and how old are you?

Welcome Walt, I'll watch for your posts to get to know you better.

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

(unknown)

Hello all

New and first post. So not sure what I am doing, I have read some of the postings and can say it’s nice to listen to what others have to say that “know” My family is supportive but I don’t think they truly understand. I was diagnose in 06 and had the bronchoscopy and then open biopsy They gave am a list of things that is wrong and IPF being one. The doctors want me to have a CT every 6 months to check progress. I worked in a chemical plant for 13 years and had Nemours exospheres and a few hospital trips to all kinds of chemicals, Chlorine, asbestos and Hydrochloric and sulfuric acid to name just a few. I read that these can be a cause but when I talked to the Doctors about this it’s like they don’t want to here it. I have not been back to the doctor since 06. It’s harder and harder working and to do the everyday things. I just DON”T want to go back to the doctor (dog and pony show) Is

there a chart or something I could look at to see where I am at or what to expect? I want to distinguish between getting old and?

Thanks for listing

Walt

"Dont be afraid of dying. Be afraid of the unlived life"

[Guest guest]

Walt,

Just wanted to take a moment to welcome you to the board! I do understand the feeling that my loved ones as much as they care for me don't in any way "get it". That's why this board has become so important to me. Here everyone "gets it" and can empathize and walk that mile in your shoes because we are doing it.

I would encourage you to check in with a pulmonologist. I know it's a pain but with proper care you can make your life longer and more enjoyable.

We're glad you're here with us and I hope that you can find the support and friendship here that I have.

Beth

Moderator Breathe-Support

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

(unknown)

Hello all

New and first post. So not sure what I am doing, I have read some of the postings and can say it’s nice to listen to what others have to say that “know” My family is supportive but I don’t think they truly understand. I was diagnose in 06 and had the bronchoscopy and then open biopsy They gave am a list of things that is wrong and IPF being one. The doctors want me to have a CT every 6 months to check progress. I worked in a chemical plant for 13 years and had Nemours exospheres and a few hospital trips to all kinds of chemicals, Chlorine, asbestos and Hydrochloric and sulfuric acid to name just a few. I read that these can be a cause but when I talked to the Doctors about this it’s like they don’t want to here it. I have not been back to the doctor since 06. It’s harder and harder working and to do the everyday things. I just DON”T want to go back to the doctor (dog and pony show) Is

there a chart or something I could look at to see where I am at or what to expect? I want to distinguish between getting old and?

Thanks for listing

Walt

"Dont be afraid of dying. Be afraid of the unlived life"

[Guest guest]

COPE/04-PF/07

Hi I too struggle with pain some has to do with the work my lungs have to do and

the other constant leg pain- I havent a clue after a year on 800mg motrin every 2 hours during the last few months i was put on tornadol injections and 500 mg of napercyn but it seems I am

becoming immune to that too although the pain is less it is still there-

let me know how you do! Oh and the pain in the butt? it started at the hip or pelvis joint

for me but since the tornadol injections that area seems to be okie doke!

"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: island_walt@...Date: Fri, 1 Aug 2008 10:13:30 -0700Subject: (unknown)

Hello all I hope you ALL have a wonderful day I have a question, I see from many posts people talking about pain, What kind of pain is associated with this? I have been in pain and not sure if it¢s age or just wore out body from working. The Doctor seemed surprised when I told him my chest and ? ache has told me to back off on the Advil I was taking 800 every 4 to 6 hours

Our care should not be to have lived long as to have lived enough. Use video conversation to talk face-to-face with Windows Live Messenger. Get started.

[Guest guest]

Walt, I have been Dx for over four years and do not know about the pain some suffer from. The Transplant Dr. did explain to me the lungs don't have nerves so the pain is from the tissue around the lungs. I have chest pain whenI over do or don't have my 02 up high enough. But it is all my fault for not using enough 02--always thinking Oh I can just go get a glass of water.. NOT. I loose my air now that is painful. But it is not enough that I would take painmeds for it. I HAVE to keep my saturation 92 and above. We all react to things so differently with this monster. Take Care. God Bless. Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up."

[Guest guest]

Walt... sounds like you really need to be seeing a Dr. From the things you mention here on the board, you need medical attention.

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

(unknown)

Hello all I hope you ALL have a wonderful day I have a question, I see from many posts people talking about pain, What kind of pain is associated with this? I have been in pain and not sure if it¢s age or just wore out body from working. The Doctor seemed surprised when I told him my chest and ? ache has told me to back off on the Advil I was taking 800 every 4 to 6 hours

Our care should not be to have lived long as to have lived enough.

[Guest guest]

Walt... Rich and I did the Grand Canyon thing a few years back. Sure am glad we did, I'm not sure I would go now.

We usually traveled in Sept. Cooler and kids are back in school...

Hey, send us a picture with your "shades" off so we can tell who we're talkin' too!

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

(unknown)

I posted a couple of pic¢s of my Grand Canyon vacation that my son and I went on this June. What an Awesome place Hot 112 that day but inspiring

Walt, Whidbey Island Wa

IPF, NSIP, UIP, DIP 10/06

Life may not be the party we hoped for, but while we are here we might as well dance

[Guest guest]

It was a incredible trip I had a ball and loved going there with my son he is 15 we stayed in Vegas and had a ball took me three weeks to recover but am planning another one soon

Walt, Whidbey Island Wa

IPF, NSIP, UIP, DIP 10/06

Life may not be the party we hoped for, but while we are here we might as well dance

Subject: Re: (unknown)To: Breathe-Support Date: Friday, August 8, 2008, 12:16 PM

Walt... Rich and I did the Grand Canyon thing a few years back. Sure am glad we did, I'm not sure I would go now.

We usually traveled in Sept. Cooler and kids are back in school...

Hey, send us a picture with your "shades" off so we can tell who we're talkin' too!

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

(unknown)

I posted a couple of pic¢s of my Grand Canyon vacation that my son and I went on this June. What an Awesome place Hot 112 that day but inspiring

Walt, Whidbey Island Wa

IPF, NSIP, UIP, DIP 10/06

Life may not be the party we hoped for, but while we are here we might as well dance

[Guest guest]

Walt, what a tremendous show. Thank you for sharing.

Jack79/IPF - UIP/dx06/05 Maine

(unknown)

Hope you enjoy this

Walt, Whidbey Island Wa

IPF, NSIP, UIP, DIP 10/06

Life may not be the party we hoped for, but while we are here we might as well dance