reply to Diane

January 23, 2009

Hi Diane,

Don't give up! That's my best advice. My lung capacity is at 21%! And, there are no drugs to treat PF, only drugs to treat some of the effects of PF. I also have PH, which is secondary to PFand I take Tracleer for that. I am not on any meds for PF, other than medicine for the cough. I take Tesselon Pearles and Hydrocodone for the cough. I also have coronary artery disease and take heart medicine; one for blood thinning, one to make my heart not have to work too hard and lower blood pressure (even though I never had high blood pressure). And, I take medicine for cholesterol.

I have had several treatments of Prednisone and it certainly helps with the inflammation in the lungs when I am sicker than normal....usually pneumonia related.

I use a nebulizer to help clear my airways and it helps some.

My point is everything that I take helps one thing or another, but nothing is going to make me better, it just helps me keep going. And that is what you need....something to help you keep going.

I am currently on the lung transplant waiting list at UPMC in Pittsburgh and trying to get double listed at Cleveland Clinic. They turned me down last year because I am overweight and my body mass index has to be below 30 to qualify for their program. I am currently at about 33-35. I lost some weight and then gained it back after being on Prednisone a couple of times. But, I keep going and I keep trying because I want to be around as long as possible for my son who is only 6 yrs old. His father and I divorced in December, 2008. My husband decided he didn't want to be with me because he didn't want to deal with "terminal" illness. Of course there were many other deeper problems in the relationship, but it was his way out. In any event, I am thankful for every day I have. I am thankful my mother is close by to help me clean my house and take care of Kaleb. One of my pulmonologists told me

that he would give me a referral to Hospice whenever I was ready. But, I am not ready yet. I think each of us will know when the time is right and make that decision reluctantly because it has an unspoken meaning---the end is near. If you are not ready to give up, don't be rushed into doing it.

I just want you to know you are among friends and people who have faced the same tough decisions you are facing. I know it is hard, but live like you are going to keep on living...and, when it is time, know that it is o.k. to change your path!

God Bless,

Tina

OH, 42

IPF 04/07, PH 11/07, listed for transplant 06/08

Tina

Subject: Re: HI EVERYONETo: Breathe-Support Date: Thursday, January 22, 2009, 3:13 PM

ï»¿ Diane...Want to say hi to you. There have been a few sad posts today and I sense your fear and frustration and fatigue.

Acceptance is a hard thing to do, I work on it all the time.

I don't think Hospice is always 'morphine and death'...Vicky has been w/Hospice for quite awhile and has actually improved. She was at death's door 2-3 times. Yes, she is on morphine but each of us are different and morphine (I think) can be a good med for us. I needed and had relief from morphine but I'm allergic to it so it's been hard finding something else that works as well for my compromised lungs. Pulmodude and the pain clinic both state that morphine is one of the better drugs for "us". If it comes to that for you I hope a little encouragement that it does work well for many will be of help.

Everything is trial and error anyway. I hate this disease!

I think it's a good thing tho' that you are working on getting your affairs in order. It is suggested to ALL of us that we do that, sooner than later.

A warm hug to you Diane, keep us posted on how you are doing.

Love,

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

HI EVERYONE

Hi-sorry I haven't posted much lately. I did go to a new specialist last week at Albany Medical Center. She is the head of ICU/PULM and works with lung transplants- trained at Colombia Univ. SHe read all my reports form a few months ago and sees no reason to do any further tests. I was told back then I only had 48% of my lung capacity left-she said no way-only about 32%. Because my body is not tolerating any of the drugs and most of them paralyze my nervous system, this is about the end for me. She absoltely will not treat the pulmonary hypertension because it is a secondary cause to the lung disease. UGH I still don't understand why it won't help!!! She suggested Hospice when I am ready. I am very scared and always related Hospice with Morphine and death shortly after. I am fighting my way thru each day though getting weaker. Have much paperwork to do. Just closed business and have taxes and ledgers to do ect as well as will and bills for hubby. He

will be lost since I have done everything for 20yrs.... I cry most days now with mixed feelings wondering how I'm going to get thru the day. Recently the town I live in sent me someone once a month to help clean, vac, do laundry ect. Thank God for some people. That was supposed to be ME-continuing my giving to society and helping people. Life is unfair. Like you all say-you don't come stamped with a date of expiration- so no ones knows except God. I try to keep faith and say prayers for all of you also. Thank you for being there for me. I hope Hospice does me well for a little while longer when I do decide.Diane PF,Raynauds, PM,Sjorgrens 2006 PH 2008

January 23, 2009

Dearest Diane,

My name is Margaret and this is my third day in the group. First, let me tell you how blessed you are to have your mother and son with you.

I have an ex husband that I divorced because he only made my life harder by not helping and causing me more unnecessary stress than I wanted or needed to deal with. We are still friends even though with all of my health needs, he still gets more from me than he gives. He still messes up my home and leaves it for me to clean up after him. He is of little use taking me to the doctor, hospital or shopping. I still love him but I know he is not capable of taking care of my final arrangements or of even managing my house if I left it to him. I really feel alone because I am estranged from my only child and grand children because of him. She was an adult when I married him in 2002. I was an only child so I have no family to turn to because they are all gone. The friends I have are all over the US. There is no one in Anchorage to help me.

My home has been a mess for a very long time...years because of a flood in my crawl space where the contents had to be put in the garage and over flowed into the house. My paths are blocked, cabinets are barricaded and he scrambled everything so that I can't access it to cook, listen to my music, get to my plants to water them or reach my media or books. The stress is worse on me than my physical conditions. The doctor wrote a letter two years ago stating that I needed household help but medicare or medicaid will not cover it. I want nothing more than being able to hold my daughter and grandchildren and tell them how much I love them and give them some happy memories before I get to scary for the little ones. I worked over forty years to own my home and I would like to enjoy it and my things while I can.

Give your mom and son as much love and appreciation as you can for as long as you can and take every bit that they give to you. I wish I had had more time with mine and given them so much more and they and I are still here. All I can do is have hope. I will pray for a transplant for you and many more years to love and be loved.

Margaret

To: Breathe-Support Sent: Friday, January 23, 2009 3:34:24 AMSubject: reply to Diane

Hi Diane,

Don't give up! That's my best advice. My lung capacity is at 21%! And, there are no drugs to treat PF, only drugs to treat some of the effects of PF. I also have PH, which is secondary to PFand I take Tracleer for that. I am not on any meds for PF, other than medicine for the cough. I take Tesselon Pearles and Hydrocodone for the cough. I also have coronary artery disease and take heart medicine; one for blood thinning, one to make my heart not have to work too hard and lower blood pressure (even though I never had high blood pressure). And, I take medicine for cholesterol.

I have had several treatments of Prednisone and it certainly helps with the inflammation in the lungs when I am sicker than normal....usually pneumonia related.

I use a nebulizer to help clear my airways and it helps some.

My point is everything that I take helps one thing or another, but nothing is going to make me better, it just helps me keep going. And that is what you need....something to help you keep going.

I am currently on the lung transplant waiting list at UPMC in Pittsburgh and trying to get double listed at Cleveland Clinic. They turned me down last year because I am overweight and my body mass index has to be below 30 to qualify for their program. I am currently at about 33-35. I lost some weight and then gained it back after being on Prednisone a couple of times. But, I keep going and I keep trying because I want to be around as long as possible for my son who is only 6 yrs old. His father and I divorced in December, 2008. My husband decided he didn't want to be with me because he didn't want to deal with "terminal" illness. Of course there were many other deeper problems in the relationship, but it was his way out. In any event, I am thankful for every day I have. I am thankful my mother is close by to help me clean my house and take care of Kaleb. One of my pulmonologists told me

that he would give me a referral to Hospice whenever I was ready. But, I am not ready yet. I think each of us will know when the time is right and make that decision reluctantly because it has an unspoken meaning---the end is near. If you are not ready to give up, don't be rushed into doing it.

I just want you to know you are among friends and people who have faced the same tough decisions you are facing. I know it is hard, but live like you are going to keep on living...and, when it is time, know that it is o.k. to change your path!

God Bless,

Tina

OH, 42

IPF 04/07, PH 11/07, listed for transplant 06/08

Tina

From: Sher Bauman <bofus (AT) wbcable (DOT) net>Subject: Re: HI EVERYONETo: Breathe-Support@ yahoogroups.. comDate: Thursday, January 22, 2009, 3:13 PM

ï»¿ Diane...Want to say hi to you. There have been a few sad posts today and I sense your fear and frustration and fatigue.

Acceptance is a hard thing to do, I work on it all the time.

I don't think Hospice is always 'morphine and death'...Vicky has been w/Hospice for quite awhile and has actually improved. She was at death's door 2-3 times. Yes, she is on morphine but each of us are different and morphine (I think) can be a good med for us. I needed and had relief from morphine but I'm allergic to it so it's been hard finding something else that works as well for my compromised lungs. Pulmodude and the pain clinic both state that morphine is one of the better drugs for "us". If it comes to that for you I hope a little encouragement that it does work well for many will be of help.

Everything is trial and error anyway. I hate this disease!

I think it's a good thing tho' that you are working on getting your affairs in order. It is suggested to ALL of us that we do that, sooner than later.

A warm hug to you Diane, keep us posted on how you are doing.

Love,

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

HI EVERYONE

Hi-sorry I haven't posted much lately. I did go to a new specialist last week at Albany Medical Center. She is the head of ICU/PULM and works with lung transplants- trained at Colombia Univ. SHe read all my reports form a few months ago and sees no reason to do any further tests. I was told back then I only had 48% of my lung capacity left-she said no way-only about 32%. Because my body is not tolerating any of the drugs and most of them paralyze my nervous system, this is about the end for me. She absoltely will not treat the pulmonary hypertension because it is a secondary cause to the lung disease. UGH I still don't understand why it won't help!!! She suggested Hospice when I am ready. I am very scared and always related Hospice with Morphine and death shortly after. I am fighting my way thru each day though getting weaker. Have much paperwork to do. Just closed business and have taxes and ledgers to do ect as well as will and bills for hubby. He

will be lost since I have done everything for 20yrs.... I cry most days now with mixed feelings wondering how I'm going to get thru the day. Recently the town I live in sent me someone once a month to help clean, vac, do laundry ect. Thank God for some people. That was supposed to be ME-continuing my giving to society and helping people. Life is unfair. Like you all say-you don't come stamped with a date of expiration- so no ones knows except God. I try to keep faith and say prayers for all of you also. Thank you for being there for me. I hope Hospice does me well for a little while longer when I do decide.Diane PF,Raynauds, PM,Sjorgrens 2006 PH 2008

January 23, 2009

Dearest Diane,

My name is Margaret and this is my third day in the group. First, let me tell you how blessed you are to have your mother and son with you.

I have an ex husband that I divorced because he only made my life harder by not helping and causing me more unnecessary stress than I wanted or needed to deal with. We are still friends even though with all of my health needs, he still gets more from me than he gives. He still messes up my home and leaves it for me to clean up after him. He is of little use taking me to the doctor, hospital or shopping. I still love him but I know he is not capable of taking care of my final arrangements or of even managing my house if I left it to him. I really feel alone because I am estranged from my only child and grand children because of him. She was an adult when I married him in 2002. I was an only child so I have no family to turn to because they are all gone. The friends I have are all over the US. There is no one in Anchorage to help me.

My home has been a mess for a very long time...years because of a flood in my crawl space where the contents had to be put in the garage and over flowed into the house. My paths are blocked, cabinets are barricaded and he scrambled everything so that I can't access it to cook, listen to my music, get to my plants to water them or reach my media or books. The stress is worse on me than my physical conditions. The doctor wrote a letter two years ago stating that I needed household help but medicare or medicaid will not cover it. I want nothing more than being able to hold my daughter and grandchildren and tell them how much I love them and give them some happy memories before I get to scary for the little ones. I worked over forty years to own my home and I would like to enjoy it and my things while I can.

Give your mom and son as much love and appreciation as you can for as long as you can and take every bit that they give to you. I wish I had had more time with mine and given them so much more and they and I are still here. All I can do is have hope. I will pray for a transplant for you and many more years to love and be loved.

Margaret

To: Breathe-Support Sent: Friday, January 23, 2009 3:34:24 AMSubject: reply to Diane

Hi Diane,

Don't give up! That's my best advice. My lung capacity is at 21%! And, there are no drugs to treat PF, only drugs to treat some of the effects of PF. I also have PH, which is secondary to PFand I take Tracleer for that. I am not on any meds for PF, other than medicine for the cough. I take Tesselon Pearles and Hydrocodone for the cough. I also have coronary artery disease and take heart medicine; one for blood thinning, one to make my heart not have to work too hard and lower blood pressure (even though I never had high blood pressure). And, I take medicine for cholesterol.

I have had several treatments of Prednisone and it certainly helps with the inflammation in the lungs when I am sicker than normal....usually pneumonia related.

I use a nebulizer to help clear my airways and it helps some.

My point is everything that I take helps one thing or another, but nothing is going to make me better, it just helps me keep going. And that is what you need....something to help you keep going.

I am currently on the lung transplant waiting list at UPMC in Pittsburgh and trying to get double listed at Cleveland Clinic. They turned me down last year because I am overweight and my body mass index has to be below 30 to qualify for their program. I am currently at about 33-35. I lost some weight and then gained it back after being on Prednisone a couple of times. But, I keep going and I keep trying because I want to be around as long as possible for my son who is only 6 yrs old. His father and I divorced in December, 2008. My husband decided he didn't want to be with me because he didn't want to deal with "terminal" illness. Of course there were many other deeper problems in the relationship, but it was his way out. In any event, I am thankful for every day I have. I am thankful my mother is close by to help me clean my house and take care of Kaleb. One of my pulmonologists told me

that he would give me a referral to Hospice whenever I was ready. But, I am not ready yet. I think each of us will know when the time is right and make that decision reluctantly because it has an unspoken meaning---the end is near. If you are not ready to give up, don't be rushed into doing it.

I just want you to know you are among friends and people who have faced the same tough decisions you are facing. I know it is hard, but live like you are going to keep on living...and, when it is time, know that it is o.k. to change your path!

God Bless,

Tina

OH, 42

IPF 04/07, PH 11/07, listed for transplant 06/08

Tina

From: Sher Bauman <bofus (AT) wbcable (DOT) net>Subject: Re: HI EVERYONETo: Breathe-Support@ yahoogroups.. comDate: Thursday, January 22, 2009, 3:13 PM

ï»¿ Diane...Want to say hi to you. There have been a few sad posts today and I sense your fear and frustration and fatigue.

Acceptance is a hard thing to do, I work on it all the time.

I don't think Hospice is always 'morphine and death'...Vicky has been w/Hospice for quite awhile and has actually improved. She was at death's door 2-3 times. Yes, she is on morphine but each of us are different and morphine (I think) can be a good med for us. I needed and had relief from morphine but I'm allergic to it so it's been hard finding something else that works as well for my compromised lungs. Pulmodude and the pain clinic both state that morphine is one of the better drugs for "us". If it comes to that for you I hope a little encouragement that it does work well for many will be of help.

Everything is trial and error anyway. I hate this disease!

I think it's a good thing tho' that you are working on getting your affairs in order. It is suggested to ALL of us that we do that, sooner than later.

A warm hug to you Diane, keep us posted on how you are doing.

Love,

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

HI EVERYONE

Hi-sorry I haven't posted much lately. I did go to a new specialist last week at Albany Medical Center. She is the head of ICU/PULM and works with lung transplants- trained at Colombia Univ. SHe read all my reports form a few months ago and sees no reason to do any further tests. I was told back then I only had 48% of my lung capacity left-she said no way-only about 32%. Because my body is not tolerating any of the drugs and most of them paralyze my nervous system, this is about the end for me. She absoltely will not treat the pulmonary hypertension because it is a secondary cause to the lung disease. UGH I still don't understand why it won't help!!! She suggested Hospice when I am ready. I am very scared and always related Hospice with Morphine and death shortly after. I am fighting my way thru each day though getting weaker. Have much paperwork to do. Just closed business and have taxes and ledgers to do ect as well as will and bills for hubby. He

will be lost since I have done everything for 20yrs.... I cry most days now with mixed feelings wondering how I'm going to get thru the day. Recently the town I live in sent me someone once a month to help clean, vac, do laundry ect. Thank God for some people. That was supposed to be ME-continuing my giving to society and helping people. Life is unfair. Like you all say-you don't come stamped with a date of expiration- so no ones knows except God. I try to keep faith and say prayers for all of you also. Thank you for being there for me. I hope Hospice does me well for a little while longer when I do decide.Diane PF,Raynauds, PM,Sjorgrens 2006 PH 2008

January 23, 2009

Dearest Diane,

My name is Margaret and this is my third day in the group. First, let me tell you how blessed you are to have your mother and son with you.

I have an ex husband that I divorced because he only made my life harder by not helping and causing me more unnecessary stress than I wanted or needed to deal with. We are still friends even though with all of my health needs, he still gets more from me than he gives. He still messes up my home and leaves it for me to clean up after him. He is of little use taking me to the doctor, hospital or shopping. I still love him but I know he is not capable of taking care of my final arrangements or of even managing my house if I left it to him. I really feel alone because I am estranged from my only child and grand children because of him. She was an adult when I married him in 2002. I was an only child so I have no family to turn to because they are all gone. The friends I have are all over the US. There is no one in Anchorage to help me.

My home has been a mess for a very long time...years because of a flood in my crawl space where the contents had to be put in the garage and over flowed into the house. My paths are blocked, cabinets are barricaded and he scrambled everything so that I can't access it to cook, listen to my music, get to my plants to water them or reach my media or books. The stress is worse on me than my physical conditions. The doctor wrote a letter two years ago stating that I needed household help but medicare or medicaid will not cover it. I want nothing more than being able to hold my daughter and grandchildren and tell them how much I love them and give them some happy memories before I get to scary for the little ones. I worked over forty years to own my home and I would like to enjoy it and my things while I can.

Give your mom and son as much love and appreciation as you can for as long as you can and take every bit that they give to you. I wish I had had more time with mine and given them so much more and they and I are still here. All I can do is have hope. I will pray for a transplant for you and many more years to love and be loved.

Margaret

To: Breathe-Support Sent: Friday, January 23, 2009 3:34:24 AMSubject: reply to Diane

Hi Diane,

Don't give up! That's my best advice. My lung capacity is at 21%! And, there are no drugs to treat PF, only drugs to treat some of the effects of PF. I also have PH, which is secondary to PFand I take Tracleer for that. I am not on any meds for PF, other than medicine for the cough. I take Tesselon Pearles and Hydrocodone for the cough. I also have coronary artery disease and take heart medicine; one for blood thinning, one to make my heart not have to work too hard and lower blood pressure (even though I never had high blood pressure). And, I take medicine for cholesterol.

I have had several treatments of Prednisone and it certainly helps with the inflammation in the lungs when I am sicker than normal....usually pneumonia related.

I use a nebulizer to help clear my airways and it helps some.

My point is everything that I take helps one thing or another, but nothing is going to make me better, it just helps me keep going. And that is what you need....something to help you keep going.

I am currently on the lung transplant waiting list at UPMC in Pittsburgh and trying to get double listed at Cleveland Clinic. They turned me down last year because I am overweight and my body mass index has to be below 30 to qualify for their program. I am currently at about 33-35. I lost some weight and then gained it back after being on Prednisone a couple of times. But, I keep going and I keep trying because I want to be around as long as possible for my son who is only 6 yrs old. His father and I divorced in December, 2008. My husband decided he didn't want to be with me because he didn't want to deal with "terminal" illness. Of course there were many other deeper problems in the relationship, but it was his way out. In any event, I am thankful for every day I have. I am thankful my mother is close by to help me clean my house and take care of Kaleb. One of my pulmonologists told me

that he would give me a referral to Hospice whenever I was ready. But, I am not ready yet. I think each of us will know when the time is right and make that decision reluctantly because it has an unspoken meaning---the end is near. If you are not ready to give up, don't be rushed into doing it.

I just want you to know you are among friends and people who have faced the same tough decisions you are facing. I know it is hard, but live like you are going to keep on living...and, when it is time, know that it is o.k. to change your path!

God Bless,

Tina

OH, 42

IPF 04/07, PH 11/07, listed for transplant 06/08

Tina

From: Sher Bauman <bofus (AT) wbcable (DOT) net>Subject: Re: HI EVERYONETo: Breathe-Support@ yahoogroups.. comDate: Thursday, January 22, 2009, 3:13 PM

ï»¿ Diane...Want to say hi to you. There have been a few sad posts today and I sense your fear and frustration and fatigue.

Acceptance is a hard thing to do, I work on it all the time.

I don't think Hospice is always 'morphine and death'...Vicky has been w/Hospice for quite awhile and has actually improved. She was at death's door 2-3 times. Yes, she is on morphine but each of us are different and morphine (I think) can be a good med for us. I needed and had relief from morphine but I'm allergic to it so it's been hard finding something else that works as well for my compromised lungs. Pulmodude and the pain clinic both state that morphine is one of the better drugs for "us". If it comes to that for you I hope a little encouragement that it does work well for many will be of help.

Everything is trial and error anyway. I hate this disease!

I think it's a good thing tho' that you are working on getting your affairs in order. It is suggested to ALL of us that we do that, sooner than later.

A warm hug to you Diane, keep us posted on how you are doing.

Love,

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

HI EVERYONE

Hi-sorry I haven't posted much lately. I did go to a new specialist last week at Albany Medical Center. She is the head of ICU/PULM and works with lung transplants- trained at Colombia Univ. SHe read all my reports form a few months ago and sees no reason to do any further tests. I was told back then I only had 48% of my lung capacity left-she said no way-only about 32%. Because my body is not tolerating any of the drugs and most of them paralyze my nervous system, this is about the end for me. She absoltely will not treat the pulmonary hypertension because it is a secondary cause to the lung disease. UGH I still don't understand why it won't help!!! She suggested Hospice when I am ready. I am very scared and always related Hospice with Morphine and death shortly after. I am fighting my way thru each day though getting weaker. Have much paperwork to do. Just closed business and have taxes and ledgers to do ect as well as will and bills for hubby. He

will be lost since I have done everything for 20yrs.... I cry most days now with mixed feelings wondering how I'm going to get thru the day. Recently the town I live in sent me someone once a month to help clean, vac, do laundry ect. Thank God for some people. That was supposed to be ME-continuing my giving to society and helping people. Life is unfair. Like you all say-you don't come stamped with a date of expiration- so no ones knows except God. I try to keep faith and say prayers for all of you also. Thank you for being there for me. I hope Hospice does me well for a little while longer when I do decide.Diane PF,Raynauds, PM,Sjorgrens 2006 PH 2008

January 24, 2009

Hi Tina-Thanks for filling me in on your scoop. Seems hard to hear the little

lung capacity we have-how the heck do we all do it???? I also have arrythmias to

which I am on Atenolol to reduce the oxygen needed by the heart. The doctors

around here STILL will not treat the pulm. hypertension with anything and all

they say is they would be afraid I would pass out-or it's not right to treat

something secondary. IDK anymore. I have sensitivity to steroids and normal

saline also so hard for me to use neb as well. What is Tesselon Pearles? Do you

need a prescription and what do they do for you? Never heard of them. I was told

with the oxygen stay away from vicks-ben gay,and menthol things otherwise it may

burn the lungs and the nose. Something about oxygen and petroleum don't mix-

(Bruce- um have you heard this before??????????)

I use a ventolin inhaler 4xd for quicker recovery when I need it. Lately I feel

I need it more. Sorry about your husband-mine also almost left a few months

ago-some people just can't deal with things like disease in their life.

I will try not to give up/or give in unless I am ready. My body just gives in

though so at some point like you said I will know when I'm ready.Good luck to

you also and thanks for the post! Have a good weekend-Chilly here in NY 22 here

in Altamont!!

Diane PF,Raynauds,PM,Sjorgrens 2006 PH 2008

January 24, 2009