Re: (unknown)

[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]

n,

This is a bit of a ramble, so please forgive that in advance...

I was diagnosed with IPF in early 2006.

Based on everything I have learned, I would not spend my money on a lung biopsy

if I was you, unless there is a specific reason that information would help.

For example: A lung biopsy MIGHT enable the doctors to distinguish between two

subtypes of PF: a type with more fibrosis called IPF or UIP (Usual Interstitial

Pneumonitis), and a type with more inflammation and less fibrosis called NSIP

(nonspecific interstitial pneumonitis). BUT, a) it is not guaranteed they will

be able to give a 100% certain diagnosis between those, and would having that

information help?

NSIP is much more likely than IPF to respond to the " standard " combination

therapy of Prednisone, Immuran, NAC and Bactrim. Some people have said that the

best way to find out if a person has NSIP or IPF is to try the combination

therapy. If the therapy works (and stops the progression of the disease) the

person has NSIP. If it doesn't, the person has IPF.

So it might be more direct just to try the combination therapy, without having

the biopsy.

On the other hand, prednisone and immuran can have severe side effects. For me,

the prednisone caused fluid retention in my lungs (yuk).

So if you don't want to try those drugs unless you have the best chance of them

working, the biopsy could provide useful information. (Do you have pronounced

clubbing of your fingernails? Lots of clubbing is more consistent with IPF and

not NSIP: little or no clubbing is more consistent with NSIP).

What I did was wait until my FVC and Diffusion rates fell below 50% predicted

and then I tried the combination therapy. It didn't help me. The Prednisone

caused fluid build-up in my lungs.

Just to recap: even if a biopsy were to tell you that you have IPF and don't

have NSIP, when your lungs get down to a certain point, you may want to try the

combination therapy anyway, if it is the only hope. If so, would having the

biopsy information have helped?

I am doing as much pulmonary physiotherapy as I can, to keep my lungs as high

functioning as possible, in the hope that Pirfenidone will pass its drug trials

and be approved for use in early 2009.

I am also tying to get Special Access Approval to use Pirfenidone before it is

approved for general use.

I want to avoid a lung transplant for as long as possible.

Cameron

>

> Subject: (unknown)

> To: Breathe-Support

> Date: Wednesday, July 30, 2008, 1:52 AM

> 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)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 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

[Guest guest]

Caro, Yes..Prednisone can cause your blood

sugar to soar. Yes Diabetes is one of the many rotten side effects.

So far, I've been Ok. I get monthly blood work.

Check out the many pages here on prednisone side effects..the data base

connected to this group tells all.

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

Carolyn Wade wrote:

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!!

Caro

Caro

ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,

RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08

Mississippi

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

-----

Original Message ----

From: Fay <wjfayyahoo (DOT) com>

To: Breathe-Support@ yahoogroups. com

Sent: Tuesday, July 29, 2008 7:05:26 PM

Subject: Re: (unknown)

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

-----

Original Message ----

From: marionhgriffin <marionhgriffin@ yahoo.com>

To: Breathe-Support@ yahoogroups. com

Sent: Tuesday, July 29, 2008 3:52:05 PM

Subject: (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

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