RE: (unknown)

[Guest guest]

Jim,

I really thought I was going to die...everyone said so. I also wondered how it would happen. I wanted to know exactly what to say in my living will etc. I do not know if this is the place to talk about it, so maybe you could email me or send me your email. I can tell you exactly what my pulmonologists told me. We had quiet a discussion. As you can see...I did not die right away as thought. In fact...I dont plant on dieing soon but I once thought so, so I found out everything. Write me if you want. NCtulip#cox.net

L.

(unknown)

Hello Folks,

I've just re-joined this group and first let me say, thank you for sharing.

I have a weird question......actually you may think bizarre and unbalanced are better words. I am "taking care of business"..........I've done my will and have pretty much everything lined out. Maybe the only positive thing about this disease (IPF - 2005) is having time to get this stuff done. Of course, this so-called benefit is not exclusive to IPF. I'm in the middle of completing my Durable Power of Attorney for Health Care and I need to be specific about some things. Things that I don't know about. So.....here goes.....Can someone tell me what it looks like to die from IPF? or point me in the right direction? Please don't dismiss me as being a flake, I've been thinking about this for a few months. I've been with several people that died from cancer and read a book written by 2 hospice nurses ("Final Gifts") so I have a good idea what that would be like. (Lung cancer in remission - 3 years and counting) My pulmonologist and I have discussed many end of life issues and he's always been straight forward and candid. We've agreed that there will be no time predictions. During my last visit I asked him this very question and he danced around it saying that most older men die from pneumonia instead. 2 weeks later I got a letter stating that he has quit his practice and is moving. I've yet to find a replacement. Shopping for a replacement means a 350 mile/ $400.00 flight into Anchorage. So.......I want to make informed decisions regarding my living will. If this whole line of discussion is totally out of line then please forgive me. AND....if I sound unbelievably calm and detached........chalk it up to......it's Monday? I'ts raining? I had soup for lunch? meaning what.....that at this moment I am calm and detached......check with me in an hour. I just had another thought.....perhaps this whole line of thought has no place here in this support group. I've noticed that people here are, for the most part, upbeat and positive. Hopefully, if I've stepped over some line Leanne will bleep me.

Jim Wallman IPF 2005

Got a little couch potato? Check out fun summer activities for kids.

[Guest guest]

Jim,

I really thought I was going to die...everyone said so. I also wondered how it would happen. I wanted to know exactly what to say in my living will etc. I do not know if this is the place to talk about it, so maybe you could email me or send me your email. I can tell you exactly what my pulmonologists told me. We had quiet a discussion. As you can see...I did not die right away as thought. In fact...I dont plant on dieing soon but I once thought so, so I found out everything. Write me if you want. NCtulip#cox.net

L.

(unknown)

Hello Folks,

I've just re-joined this group and first let me say, thank you for sharing.

I have a weird question......actually you may think bizarre and unbalanced are better words. I am "taking care of business"..........I've done my will and have pretty much everything lined out. Maybe the only positive thing about this disease (IPF - 2005) is having time to get this stuff done. Of course, this so-called benefit is not exclusive to IPF. I'm in the middle of completing my Durable Power of Attorney for Health Care and I need to be specific about some things. Things that I don't know about. So.....here goes.....Can someone tell me what it looks like to die from IPF? or point me in the right direction? Please don't dismiss me as being a flake, I've been thinking about this for a few months. I've been with several people that died from cancer and read a book written by 2 hospice nurses ("Final Gifts") so I have a good idea what that would be like. (Lung cancer in remission - 3 years and counting) My pulmonologist and I have discussed many end of life issues and he's always been straight forward and candid. We've agreed that there will be no time predictions. During my last visit I asked him this very question and he danced around it saying that most older men die from pneumonia instead. 2 weeks later I got a letter stating that he has quit his practice and is moving. I've yet to find a replacement. Shopping for a replacement means a 350 mile/ $400.00 flight into Anchorage. So.......I want to make informed decisions regarding my living will. If this whole line of discussion is totally out of line then please forgive me. AND....if I sound unbelievably calm and detached........chalk it up to......it's Monday? I'ts raining? I had soup for lunch? meaning what.....that at this moment I am calm and detached......check with me in an hour. I just had another thought.....perhaps this whole line of thought has no place here in this support group. I've noticed that people here are, for the most part, upbeat and positive. Hopefully, if I've stepped over some line Leanne will bleep me.

Jim Wallman IPF 2005

Got a little couch potato? Check out fun summer activities for kids.

[Guest guest]

Hi Jim, First of all I doubt that any of us would think your request to be "weird." When I was first diagnosed ( 3 months after my 50th birthday) all I could think of was "how long did I have" and "how would I die?" I too could never get a straight answer from my doctor but I think it's because they honestly don't know. The disease affects each of us so differently I'm sure the best they can give us is a "questimate." That said. . .I was so consumed with dying- I forgot to live until a wonderful friend said to take care of the legal stuff and then forget about it. What a difference those words have made! I have had the absolute best year of my life and have been on permanent vacation. I see my kids, grandkids, and friends as much as possible, immerse myself in God's word and beautiful world, keep a Far Side calendar next to my bills, treat myself to sunsets and nature walks and laugh often. And you're

right, for the most part we are a positive group full of fighters and being connected has helped me tons! On the legal side I recommend a booklet called "The 5 Wishes." It very simply and clearly helps you to plan your death and is considered a "Living Will." I liked it better than the other forms because you can just circle your choices concerning life support, hospice, medication, etc. I filled it out, filed it away and haven't looked at it since. You can request a copy ( or copies-I got an extra for my insurance co) from 1-888-5-WISHES. May God bless and keep you- Sarcoid/PF 3/2006james wallman wrote: Hello Folks, I've just re-joined this group and first let me say, thank you for sharing. I have a weird question......actually you may think bizarre and unbalanced are better words. I am "taking care of business"..........I've done my will and have pretty much everything lined out. Maybe the only positive thing about this disease (IPF - 2005) is having time to get this stuff done. Of course, this so-called benefit is not exclusive to IPF. I'm in the middle of completing my Durable Power of Attorney for Health Care and I need to be specific about some things. Things that I don't know about. So.....here goes.....Can someone tell me what it looks like to die from IPF? or point me in the right

direction? Please don't dismiss me as being a flake, I've been thinking about this for a few months. I've been with several people that died from cancer and read a book written by 2 hospice nurses ("Final Gifts") so I have a good idea what that would be like. (Lung cancer in remission - 3 years and counting) My pulmonologist and I have discussed many end of life issues and he's always been straight forward and candid. We've agreed that there will be no time predictions. During my last visit I asked him this very question and he danced around it saying that most older men die from pneumonia instead. 2 weeks later I got a letter stating that he has quit his practice and is moving. I've yet to find a replacement. Shopping for a replacement means a 350 mile/ $400.00 flight into Anchorage. So.......I want to make informed decisions regarding my living will. If this whole line of discussion is totally out of line then please forgive me. AND....if I sound unbelievably

calm and detached........chalk it up to......it's Monday? I'ts raining? I had soup for lunch? meaning what.....that at this moment I am calm and detached......check with me in an hour. I just had another thought.....perhaps this whole line of thought has no place here in this support group. I've noticed that people here are, for the most part, upbeat and positive. Hopefully, if I've stepped over some line Leanne will bleep me. Jim Wallman IPF 2005 Got a little couch potato? Check out fun summer activities for kids.

Shape Yahoo! in your own image. Join our Network Research Panel today!

[Guest guest]

Hi Jim, First of all I doubt that any of us would think your request to be "weird." When I was first diagnosed ( 3 months after my 50th birthday) all I could think of was "how long did I have" and "how would I die?" I too could never get a straight answer from my doctor but I think it's because they honestly don't know. The disease affects each of us so differently I'm sure the best they can give us is a "questimate." That said. . .I was so consumed with dying- I forgot to live until a wonderful friend said to take care of the legal stuff and then forget about it. What a difference those words have made! I have had the absolute best year of my life and have been on permanent vacation. I see my kids, grandkids, and friends as much as possible, immerse myself in God's word and beautiful world, keep a Far Side calendar next to my bills, treat myself to sunsets and nature walks and laugh often. And you're

right, for the most part we are a positive group full of fighters and being connected has helped me tons! On the legal side I recommend a booklet called "The 5 Wishes." It very simply and clearly helps you to plan your death and is considered a "Living Will." I liked it better than the other forms because you can just circle your choices concerning life support, hospice, medication, etc. I filled it out, filed it away and haven't looked at it since. You can request a copy ( or copies-I got an extra for my insurance co) from 1-888-5-WISHES. May God bless and keep you- Sarcoid/PF 3/2006james wallman wrote: Hello Folks, I've just re-joined this group and first let me say, thank you for sharing. I have a weird question......actually you may think bizarre and unbalanced are better words. I am "taking care of business"..........I've done my will and have pretty much everything lined out. Maybe the only positive thing about this disease (IPF - 2005) is having time to get this stuff done. Of course, this so-called benefit is not exclusive to IPF. I'm in the middle of completing my Durable Power of Attorney for Health Care and I need to be specific about some things. Things that I don't know about. So.....here goes.....Can someone tell me what it looks like to die from IPF? or point me in the right

direction? Please don't dismiss me as being a flake, I've been thinking about this for a few months. I've been with several people that died from cancer and read a book written by 2 hospice nurses ("Final Gifts") so I have a good idea what that would be like. (Lung cancer in remission - 3 years and counting) My pulmonologist and I have discussed many end of life issues and he's always been straight forward and candid. We've agreed that there will be no time predictions. During my last visit I asked him this very question and he danced around it saying that most older men die from pneumonia instead. 2 weeks later I got a letter stating that he has quit his practice and is moving. I've yet to find a replacement. Shopping for a replacement means a 350 mile/ $400.00 flight into Anchorage. So.......I want to make informed decisions regarding my living will. If this whole line of discussion is totally out of line then please forgive me. AND....if I sound unbelievably

calm and detached........chalk it up to......it's Monday? I'ts raining? I had soup for lunch? meaning what.....that at this moment I am calm and detached......check with me in an hour. I just had another thought.....perhaps this whole line of thought has no place here in this support group. I've noticed that people here are, for the most part, upbeat and positive. Hopefully, if I've stepped over some line Leanne will bleep me. Jim Wallman IPF 2005 Got a little couch potato? Check out fun summer activities for kids.

Shape Yahoo! in your own image. Join our Network Research Panel today!

[Guest guest]

,

Please send an email to my home email address:

cbayjpw@... and let me know what you found

out about dieing from IPF.

Thanks.

judy IPF 11/06 Transplant List 8/07

>

> Jim,

> I really thought I was going to die...everyone said so. I also

wondered how it would happen. I wanted to know exactly what to say

in my living will etc. I do not know if this is the place to talk

about it, so maybe you could email me or send me your email. I can

tell you exactly what my pulmonologists told me. We had quiet a

discussion. As you can see...I did not die right away as thought.

In fact...I dont plant on dieing soon but I once thought so, so I

found out everything. Write me if you want. NCtulip#cox.net

> L.

> (unknown)

>

>

>

> Hello Folks,

>

> I've just re-joined this group and first let me say, thank you

for sharing.

>

> I have a weird question......actually you may think bizarre and

unbalanced are better words. I am " taking care of

business " ..........I've done my will and have pretty much everything

lined out. Maybe the only positive thing about this disease (IPF -

2005) is having time to get this stuff done. Of course, this so-

called benefit is not exclusive to IPF. I'm in the middle of

completing my Durable Power of Attorney for Health Care and I need

to be specific about some things. Things that I don't know about.

So.....here goes.....Can someone tell me what it looks like to die

from IPF? or point me in the right direction? Please don't dismiss

me as being a flake, I've been thinking about this for a few months.

I've been with several people that died from cancer and read a book

written by 2 hospice nurses ( " Final Gifts " ) so I have a good idea

what that would be like. (Lung cancer in remission - 3 years and

counting) My pulmonologist and I have discussed many end of life

issues and he's always been straight forward and candid. We've

agreed that there will be no time predictions. During my last visit

I asked him this very question and he danced around it saying that

most older men die from pneumonia instead. 2 weeks later I got a

letter stating that he has quit his practice and is moving. I've yet

to find a replacement. Shopping for a replacement means a 350 mile/

$400.00 flight into Anchorage. So.......I want to make informed

decisions regarding my living will. If this whole line of discussion

is totally out of line then please forgive me. AND....if I sound

unbelievably calm and detached........chalk it up to......it's

Monday? I'ts raining? I had soup for lunch? meaning what.....that at

this moment I am calm and detached......check with me in an hour. I

just had another thought.....perhaps this whole line of thought has

no place here in this support group. I've noticed that people here

are, for the most part, upbeat and positive. Hopefully, if I've

stepped over some line Leanne will bleep me.

>

> Jim Wallman IPF 2005

>

>

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

-----------

> Got a little couch potato?

> Check out fun summer activities for kids.

>

[Guest guest]

,

Please send an email to my home email address:

cbayjpw@... and let me know what you found

out about dieing from IPF.

Thanks.

judy IPF 11/06 Transplant List 8/07

>

> Jim,

> I really thought I was going to die...everyone said so. I also

wondered how it would happen. I wanted to know exactly what to say

in my living will etc. I do not know if this is the place to talk

about it, so maybe you could email me or send me your email. I can

tell you exactly what my pulmonologists told me. We had quiet a

discussion. As you can see...I did not die right away as thought.

In fact...I dont plant on dieing soon but I once thought so, so I

found out everything. Write me if you want. NCtulip#cox.net

> L.

> (unknown)

>

>

>

> Hello Folks,

>

> I've just re-joined this group and first let me say, thank you

for sharing.

>

> I have a weird question......actually you may think bizarre and

unbalanced are better words. I am " taking care of

business " ..........I've done my will and have pretty much everything

lined out. Maybe the only positive thing about this disease (IPF -

2005) is having time to get this stuff done. Of course, this so-

called benefit is not exclusive to IPF. I'm in the middle of

completing my Durable Power of Attorney for Health Care and I need

to be specific about some things. Things that I don't know about.

So.....here goes.....Can someone tell me what it looks like to die

from IPF? or point me in the right direction? Please don't dismiss

me as being a flake, I've been thinking about this for a few months.

I've been with several people that died from cancer and read a book

written by 2 hospice nurses ( " Final Gifts " ) so I have a good idea

what that would be like. (Lung cancer in remission - 3 years and

counting) My pulmonologist and I have discussed many end of life

issues and he's always been straight forward and candid. We've

agreed that there will be no time predictions. During my last visit

I asked him this very question and he danced around it saying that

most older men die from pneumonia instead. 2 weeks later I got a

letter stating that he has quit his practice and is moving. I've yet

to find a replacement. Shopping for a replacement means a 350 mile/

$400.00 flight into Anchorage. So.......I want to make informed

decisions regarding my living will. If this whole line of discussion

is totally out of line then please forgive me. AND....if I sound

unbelievably calm and detached........chalk it up to......it's

Monday? I'ts raining? I had soup for lunch? meaning what.....that at

this moment I am calm and detached......check with me in an hour. I

just had another thought.....perhaps this whole line of thought has

no place here in this support group. I've noticed that people here

are, for the most part, upbeat and positive. Hopefully, if I've

stepped over some line Leanne will bleep me.

>

> Jim Wallman IPF 2005

>

>

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

-----------

> Got a little couch potato?

> Check out fun summer activities for kids.

>

[Guest guest]

,

Please send an email to my home email address:

cbayjpw@... and let me know what you found

out about dieing from IPF.

Thanks.

judy IPF 11/06 Transplant List 8/07

>

> Jim,

> I really thought I was going to die...everyone said so. I also

wondered how it would happen. I wanted to know exactly what to say

in my living will etc. I do not know if this is the place to talk

about it, so maybe you could email me or send me your email. I can

tell you exactly what my pulmonologists told me. We had quiet a

discussion. As you can see...I did not die right away as thought.

In fact...I dont plant on dieing soon but I once thought so, so I

found out everything. Write me if you want. NCtulip#cox.net

> L.

> (unknown)

>

>

>

> Hello Folks,

>

> I've just re-joined this group and first let me say, thank you

for sharing.

>

> I have a weird question......actually you may think bizarre and

unbalanced are better words. I am " taking care of

business " ..........I've done my will and have pretty much everything

lined out. Maybe the only positive thing about this disease (IPF -

2005) is having time to get this stuff done. Of course, this so-

called benefit is not exclusive to IPF. I'm in the middle of

completing my Durable Power of Attorney for Health Care and I need

to be specific about some things. Things that I don't know about.

So.....here goes.....Can someone tell me what it looks like to die

from IPF? or point me in the right direction? Please don't dismiss

me as being a flake, I've been thinking about this for a few months.

I've been with several people that died from cancer and read a book

written by 2 hospice nurses ( " Final Gifts " ) so I have a good idea

what that would be like. (Lung cancer in remission - 3 years and

counting) My pulmonologist and I have discussed many end of life

issues and he's always been straight forward and candid. We've

agreed that there will be no time predictions. During my last visit

I asked him this very question and he danced around it saying that

most older men die from pneumonia instead. 2 weeks later I got a

letter stating that he has quit his practice and is moving. I've yet

to find a replacement. Shopping for a replacement means a 350 mile/

$400.00 flight into Anchorage. So.......I want to make informed

decisions regarding my living will. If this whole line of discussion

is totally out of line then please forgive me. AND....if I sound

unbelievably calm and detached........chalk it up to......it's

Monday? I'ts raining? I had soup for lunch? meaning what.....that at

this moment I am calm and detached......check with me in an hour. I

just had another thought.....perhaps this whole line of thought has

no place here in this support group. I've noticed that people here

are, for the most part, upbeat and positive. Hopefully, if I've

stepped over some line Leanne will bleep me.

>

> Jim Wallman IPF 2005

>

>

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

-----------

> Got a little couch potato?

> Check out fun summer activities for kids.

>

[Guest guest]

Hey ,

I agree. Jim, I think it is a very good question, and one that I would like to know as well. I think it would give all of us a better idea how to write our Durable Power as well as making living will decisions. So Jim, I actually want to thank you for being brave enough to ask such a question.

Take care

T

PF/Hermansky Pudlak Syndrome 2002

NC

www.myspace.com/karenshpskorner

_________________________________________________ Tillman Regional Coordinator Mid Atlantic USAHermansky-Pudlak Syndrome Network IncMy NC phone: or NY home office 1. / fax * HPS is a genetic disorder that is characterized by albinism, visual impairment, and a bleeding problem.Some genetic mutations can include colitis and pulmonary fibrosis.* http://www.hpsnetwork.org One South Road Oyster Bay, NY 11771

(unknown)

Hello Folks,

I've just re-joined this group and first let me say, thank you for sharing.

I have a weird question......actually you may think bizarre and unbalanced are better words. I am "taking care of business"..........I've done my will and have pretty much everything lined out. Maybe the only positive thing about this disease (IPF - 2005) is having time to get this stuff done. Of course, this so-called benefit is not exclusive to IPF. I'm in the middle of completing my Durable Power of Attorney for Health Care and I need to be specific about some things. Things that I don't know about. So.....here goes.....Can someone tell me what it looks like to die from IPF? or point me in the right direction? Please don't dismiss me as being a flake, I've been thinking about this for a few months. I've been with several people that died from cancer and read a book written by 2 hospice nurses ("Final Gifts") so I have a good idea what that would be like. (Lung cancer in remission - 3 years and counting) My pulmonologist and I have discussed many end of life issues and he's always been straight forward and candid. We've agreed that there will be no time predictions. During my last visit I asked him this very question and he danced around it saying that most older men die from pneumonia instead. 2 weeks later I got a letter stating that he has quit his practice and is moving. I've yet to find a replacement. Shopping for a replacement means a 350 mile/ $400.00 flight into Anchorage. So.......I want to make informed decisions regarding my living will. If this whole line of discussion is totally out of line then please forgive me. AND....if I sound unbelievably calm and detached........chalk it up to......it's Monday? I'ts raining? I had soup for lunch? meaning what.....that at this moment I am calm and detached......check with me in an hour. I just had another thought.....perhaps this whole line of thought has no place here in this support group. I've noticed that people here are, for the most part, upbeat and positive. Hopefully, if I've stepped over some line Leanne will bleep me.

Jim Wallman IPF 2005

Got a little couch potato? Check out fun summer activities for kids.

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.1/965 - Release Date: 8/21/2007 4:02 PM

[Guest guest]

Hey ,

I agree. Jim, I think it is a very good question, and one that I would like to know as well. I think it would give all of us a better idea how to write our Durable Power as well as making living will decisions. So Jim, I actually want to thank you for being brave enough to ask such a question.

Take care

T

PF/Hermansky Pudlak Syndrome 2002

NC

www.myspace.com/karenshpskorner

_________________________________________________ Tillman Regional Coordinator Mid Atlantic USAHermansky-Pudlak Syndrome Network IncMy NC phone: or NY home office 1. / fax * HPS is a genetic disorder that is characterized by albinism, visual impairment, and a bleeding problem.Some genetic mutations can include colitis and pulmonary fibrosis.* http://www.hpsnetwork.org One South Road Oyster Bay, NY 11771

(unknown)

Hello Folks,

I've just re-joined this group and first let me say, thank you for sharing.

I have a weird question......actually you may think bizarre and unbalanced are better words. I am "taking care of business"..........I've done my will and have pretty much everything lined out. Maybe the only positive thing about this disease (IPF - 2005) is having time to get this stuff done. Of course, this so-called benefit is not exclusive to IPF. I'm in the middle of completing my Durable Power of Attorney for Health Care and I need to be specific about some things. Things that I don't know about. So.....here goes.....Can someone tell me what it looks like to die from IPF? or point me in the right direction? Please don't dismiss me as being a flake, I've been thinking about this for a few months. I've been with several people that died from cancer and read a book written by 2 hospice nurses ("Final Gifts") so I have a good idea what that would be like. (Lung cancer in remission - 3 years and counting) My pulmonologist and I have discussed many end of life issues and he's always been straight forward and candid. We've agreed that there will be no time predictions. During my last visit I asked him this very question and he danced around it saying that most older men die from pneumonia instead. 2 weeks later I got a letter stating that he has quit his practice and is moving. I've yet to find a replacement. Shopping for a replacement means a 350 mile/ $400.00 flight into Anchorage. So.......I want to make informed decisions regarding my living will. If this whole line of discussion is totally out of line then please forgive me. AND....if I sound unbelievably calm and detached........chalk it up to......it's Monday? I'ts raining? I had soup for lunch? meaning what.....that at this moment I am calm and detached......check with me in an hour. I just had another thought.....perhaps this whole line of thought has no place here in this support group. I've noticed that people here are, for the most part, upbeat and positive. Hopefully, if I've stepped over some line Leanne will bleep me.

Jim Wallman IPF 2005

Got a little couch potato? Check out fun summer activities for kids.

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.1/965 - Release Date: 8/21/2007 4:02 PM

[Guest guest]

Hey ,

I agree. Jim, I think it is a very good question, and one that I would like to know as well. I think it would give all of us a better idea how to write our Durable Power as well as making living will decisions. So Jim, I actually want to thank you for being brave enough to ask such a question.

Take care

T

PF/Hermansky Pudlak Syndrome 2002

NC

www.myspace.com/karenshpskorner

_________________________________________________ Tillman Regional Coordinator Mid Atlantic USAHermansky-Pudlak Syndrome Network IncMy NC phone: or NY home office 1. / fax * HPS is a genetic disorder that is characterized by albinism, visual impairment, and a bleeding problem.Some genetic mutations can include colitis and pulmonary fibrosis.* http://www.hpsnetwork.org One South Road Oyster Bay, NY 11771

(unknown)

Hello Folks,

I've just re-joined this group and first let me say, thank you for sharing.

I have a weird question......actually you may think bizarre and unbalanced are better words. I am "taking care of business"..........I've done my will and have pretty much everything lined out. Maybe the only positive thing about this disease (IPF - 2005) is having time to get this stuff done. Of course, this so-called benefit is not exclusive to IPF. I'm in the middle of completing my Durable Power of Attorney for Health Care and I need to be specific about some things. Things that I don't know about. So.....here goes.....Can someone tell me what it looks like to die from IPF? or point me in the right direction? Please don't dismiss me as being a flake, I've been thinking about this for a few months. I've been with several people that died from cancer and read a book written by 2 hospice nurses ("Final Gifts") so I have a good idea what that would be like. (Lung cancer in remission - 3 years and counting) My pulmonologist and I have discussed many end of life issues and he's always been straight forward and candid. We've agreed that there will be no time predictions. During my last visit I asked him this very question and he danced around it saying that most older men die from pneumonia instead. 2 weeks later I got a letter stating that he has quit his practice and is moving. I've yet to find a replacement. Shopping for a replacement means a 350 mile/ $400.00 flight into Anchorage. So.......I want to make informed decisions regarding my living will. If this whole line of discussion is totally out of line then please forgive me. AND....if I sound unbelievably calm and detached........chalk it up to......it's Monday? I'ts raining? I had soup for lunch? meaning what.....that at this moment I am calm and detached......check with me in an hour. I just had another thought.....perhaps this whole line of thought has no place here in this support group. I've noticed that people here are, for the most part, upbeat and positive. Hopefully, if I've stepped over some line Leanne will bleep me.

Jim Wallman IPF 2005

Got a little couch potato? Check out fun summer activities for kids.

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.1/965 - Release Date: 8/21/2007 4:02 PM

[Guest guest]

That’s very

interesting Joy – did he explain why this was so!

By the way the

prospect of weight gain is NOT my main reason for being reluctant to use Pred.

My questions around weight gain are more from the perspective of trying to be

prepared & do all I can to avoid the gain if I can!

in Oz

IPF 2007

From:

Breathe-Support [mailto:Breathe-Support ] On Behalf Of Joy

Sent: Friday, 7 September 2007

11:26 AM

To:

Breathe-Support

Subject:

(unknown)

My doctor told me that diuretics do nothing for wt gained by using

Pred.

Joy

Visit:

thehandcraftedjewelrymall.com/joykiefner/

[Guest guest]

That’s very

interesting Joy – did he explain why this was so!

By the way the

prospect of weight gain is NOT my main reason for being reluctant to use Pred.

My questions around weight gain are more from the perspective of trying to be

prepared & do all I can to avoid the gain if I can!

in Oz

IPF 2007

From:

Breathe-Support [mailto:Breathe-Support ] On Behalf Of Joy

Sent: Friday, 7 September 2007

11:26 AM

To:

Breathe-Support

Subject:

(unknown)

My doctor told me that diuretics do nothing for wt gained by using

Pred.

Joy

Visit:

thehandcraftedjewelrymall.com/joykiefner/

[Guest guest]

That’s very

interesting Joy – did he explain why this was so!

By the way the

prospect of weight gain is NOT my main reason for being reluctant to use Pred.

My questions around weight gain are more from the perspective of trying to be

prepared & do all I can to avoid the gain if I can!

in Oz

IPF 2007

From:

Breathe-Support [mailto:Breathe-Support ] On Behalf Of Joy

Sent: Friday, 7 September 2007

11:26 AM

To:

Breathe-Support

Subject:

(unknown)

My doctor told me that diuretics do nothing for wt gained by using

Pred.

Joy

Visit:

thehandcraftedjewelrymall.com/joykiefner/

[Guest guest]

Joy,That's my understanding too but I was on the Lasix and continue on it even though I'm off the pred. The doctor is concerned about supporting my heart which suffered some damage before my nsip was brought under control. It's a small dose, only 20mg.

Beth in NY Fibrotic NSIP 06/06

"At the evening of life we shall be judged on our love."

St of the Cross

(unknown)

My doctor told me that diuretics do nothing for wt gained by using Pred.

Joy

Visit:

thehandcraftedjewel rymall.com/ joykiefner/

[Guest guest]

Joy,That's my understanding too but I was on the Lasix and continue on it even though I'm off the pred. The doctor is concerned about supporting my heart which suffered some damage before my nsip was brought under control. It's a small dose, only 20mg.

Beth in NY Fibrotic NSIP 06/06

"At the evening of life we shall be judged on our love."

St of the Cross

(unknown)

My doctor told me that diuretics do nothing for wt gained by using Pred.

Joy

Visit:

thehandcraftedjewel rymall.com/ joykiefner/

[Guest guest]

Joy,That's my understanding too but I was on the Lasix and continue on it even though I'm off the pred. The doctor is concerned about supporting my heart which suffered some damage before my nsip was brought under control. It's a small dose, only 20mg.

Beth in NY Fibrotic NSIP 06/06

"At the evening of life we shall be judged on our love."

St of the Cross

(unknown)

My doctor told me that diuretics do nothing for wt gained by using Pred.

Joy

Visit:

thehandcraftedjewel rymall.com/ joykiefner/

[Guest guest]

Joy are you referring to the @ ? That means at.

Love and Prayers, Peggy

ipf 6/04 Florida

" Worry looks around,

Sorry looks back,

Faith looks up. "

Does anyone know what the funny little A is at beginning and end of

email? Joy

visit: www.thehandcraftedjewelrymall.com/joykiefner/

[Guest guest]

Joy are you referring to the @ ? That means at.

Love and Prayers, Peggy

ipf 6/04 Florida

" Worry looks around,

Sorry looks back,

Faith looks up. "

Does anyone know what the funny little A is at beginning and end of

email? Joy

visit: www.thehandcraftedjewelrymall.com/joykiefner/

[Guest guest]

Sher A boarding school outside of Canyonville, south of Roseburg. jim IPF 05 alaskaSher Bauman wrote: Hey Jim...did you reply as to where you went to school in Oregon? Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there! __________________________________________________

[Guest guest]

Sher A boarding school outside of Canyonville, south of Roseburg. jim IPF 05 alaskaSher Bauman wrote: Hey Jim...did you reply as to where you went to school in Oregon? Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there! __________________________________________________

[Guest guest]

Jim...ok, now my curiosity is satisfied. Yes, I know where Canyonville is.

Thanks.

Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there!

[Guest guest]

Jim...ok, now my curiosity is satisfied. Yes, I know where Canyonville is.

Thanks.

Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there!

[Guest guest]

This is the news we like to get, another 6 months positive life to fulfill! have a great 6 months and don't worry about the next test

(unknown)

Hi Everyone!!After waiting over an hour and a half at uro's office yesterday; we got the good news!!!PSA was 0.000 Yippeeeeeeeeeeeeeeeee!!!!!!! Another one in six months.Have a good day.Hugs and prayersDebbie and hubby

[Guest guest]

Debbie so glad to hear the great news. My prayers are with you and your hubby. Survivor is not just a TV show.

Big

[Guest guest]

Very good, sound advice .

 

Lee: You definitely need to really research and get second opinion. Consider all

the pros and cons of each treatment.

My husband had prostetectomy and we have no doubts it was the best TREATMENT FOR

HIM. He was 64 and cancer was also caught very early. There are many factors to

consider when making this decision. It was one of the most difficult times of

our life.

Each PCa patient must make his own decision and then don't look back.

You will never know how another treatment would have turned out.

 

Best of luck to you. Feel free to email me if you have any questions you'd like

to ask about our experience.

 

hugs

 

Debbie

Subject: (unknown)

To: ProstateCancerSupport

Date: Tuesday, January 27, 2009, 12:01 PM

Hi Lee, Definitely step back and get another opinion.  I am 63, had mine done at

age 60, DaVinci/Robotic Prostatectomy, and still have PSAs of 0,  but everyone

is different, and need to make a decision for yourself, based on lots of info,

input.  I'd suggest seeing all practitioners, including radiation folks.  At 37,

I think radiation seems like a poor choice, without knowing all the numbers,

etc.  It is more problematic that he is so young, his testosterone levels are

higher, he has more years for it to recur, etc.  I am a nurse anesthetist, so

having surgery was not a problem(well mostly not, lol), but I just wanted it

out.  Nerve sparing procedure did not work for me, have now had an implant,

which I love, but erectile function is more likely to return with good rehab

program post op for a young man.  Second opinion, multiple disciplines having

input, absolutely, in the end it is his choice, but choose someone who is

experienced.  Make sure

you understand all the components of treating with radiation, Lupron for a year

or two?  No small hit there for some. 

WRite if you wish, or call, I'd be happy to talk on the phone,

Life's journey is not to go to the grave in a perfectly preserved body, but to

slide in sideways, totally worn out yelling. Good God What A Ride!!