Please pray..transplant committee decision

[Guest guest]

Hi everybody,

I completed my R. & L. angio this Tuesday. Because my BP was running low, they didn't want to sedate me at all. I was so scared, and felt like I was literally holding on to God moment to moment. But God continues to be faithful, and He enabled me to get through it. The results were generally good....no CAD, the pumping chamber of my heart looks good, my right-sided pressures aren't too eleveated, my left-sided pressures were hgiher than expected, which they hope can be helped with medicaiton. I recently learned that my right ventricular ejection fraction which should be 50%, is now down to 33%, due to the fibrosis. Has anybody else encountered this? How significant is it?

Having completed all my testing, the transplant committee meets 2.25.08, and I meet with my pulmonologist to discuss the outcome the next day. Please pray, everybody. It's so hard to know how to prepare mentally and emotionally. People keep telling me how good I look, and I'm having a hard time piecing that together with simultaneously being told I need a transplant NOW. It's like I have to justify to so many people that I trully am sick, and in a lot of ways it feels so surreal to me. It's all happened so fast, just being diagnosed 11/07.

I had a converstaion with someone at my church last night, and when I expressed disappointment at having not heard from the leadership of the church for prayer support, etc., when advising them of the need for transplant, it felt like she attacked me, saying, you have no right to expect that, and I shouldn't judge or I will be judged. I was strongly told that I had no idea what was going on the last two years at the church, (there has been a lot of woundedness), and I found myself telling her I was sorry that my illness fell at an inconvenient time, hoping she would hear the absolute inappropriateness and insensitivity of what she had just said. Sadly, she did not, and persisted to demonstrate poor listening, and an unwillingness to empathize. How frustrating it is to encounter people's narrow understanding and lack of desire to demonstrate compassion.

I'm praying, continuing to believe that God holds me and my four children in his hands, and knows what is best for us.

Praying.............

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

I've got my fingers crossed for you Jean

Love Ze xx>> Hi everybody,> > I completed my R. & L. angio this Tuesday. Because my BP was running low, they didn't want to sedate me at all. I was so scared, and felt like I was literally holding on to God moment to moment. But God continues to be faithful, and He enabled me to get through it. The results were generally good....no CAD, the pumping chamber of my heart looks good, my right-sided pressures aren't too eleveated, my left-sided pressures were hgiher than expected, which they hope can be helped with medicaiton. I recently learned that my right ventricular ejection fraction which should be 50%, is now down to 33%, due to the fibrosis. Has anybody else encountered this? How significant is it?> > Having completed all my testing, the transplant committee meets 2.25.08, and I meet with my pulmonologist to discuss the outcome the next day. Please pray, everybody. It's so hard to know how to prepare mentally and emotionally. People keep telling me how good I look, and I'm having a hard time piecing that together with simultaneously being told I need a transplant NOW. It's like I have to justify to so many people that I trully am sick, and in a lot of ways it feels so surreal to me. It's all happened so fast, just being diagnosed 11/07.> > I had a converstaion with someone at my church last night, and when I expressed disappointment at having not heard from the leadership of the church for prayer support, etc., when advising them of the need for transplant, it felt like she attacked me, saying, you have no right to expect that, and I shouldn't judge or I will be judged. I was strongly told that I had no idea what was going on the last two years at the church, (there has been a lot of woundedness), and I found myself telling her I was sorry that my illness fell at an inconvenient time, hoping she would hear the absolute inappropriateness and insensitivity of what she had just said. Sadly, she did not, and persisted to demonstrate poor listening, and an unwillingness to empathize. How frustrating it is to encounter people's narrow understanding and lack of desire to demonstrate compassion.> > I'm praying, continuing to believe that God holds me and my four children in his hands, and knows what is best for us.> > Praying.............> > > ____________________________________________________________________________________> Never miss a thing. Make Yahoo your home page. > http://www.yahoo.com/r/hs>

[Guest guest]

Of course you have my love and prayers. This is all so much for you to handle from newly diagnosed to transplant candidate in less than 6 months if of course overwhelming!

Hold onto Him. He is faithful.

Prayin for you!!!

Beth

Beth in NC age 48 Fibrotic NSIP 06/06

"For as long as I shall live, I will testify to Love."

Please pray..transplant committee decision

Hi everybody,

I completed my R. & L. angio this Tuesday. Because my BP was running low, they didn't want to sedate me at all. I was so scared, and felt like I was literally holding on to God moment to moment. But God continues to be faithful, and He enabled me to get through it. The results were generally good....no CAD, the pumping chamber of my heart looks good, my right-sided pressures aren't too eleveated, my left-sided pressures were hgiher than expected, which they hope can be helped with medicaiton. I recently learned that my right ventricular ejection fraction which should be 50%, is now down to 33%, due to the fibrosis. Has anybody else encountered this? How significant is it?

Having completed all my testing, the transplant committee meets 2.25.08, and I meet with my pulmonologist to discuss the outcome the next day. Please pray, everybody. It's so hard to know how to prepare mentally and emotionally. People keep telling me how good I look, and I'm having a hard time piecing that together with simultaneously being told I need a transplant NOW. It's like I have to justify to so many people that I trully am sick, and in a lot of ways it feels so surreal to me. It's all happened so fast, just being diagnosed 11/07.

I had a converstaion with someone at my church last night, and when I expressed disappointment at having not heard from the leadership of the church for prayer support, etc., when advising them of the need for transplant, it felt like she attacked me, saying, you have no right to expect that, and I shouldn't judge or I will be judged. I was strongly told that I had no idea what was going on the last two years at the church, (there has been a lot of woundedness) , and I found myself telling her I was sorry that my illness fell at an inconvenient time, hoping she would hear the absolute inappropriateness and insensitivity of what she had just said. Sadly, she did not, and persisted to demonstrate poor listening, and an unwillingness to empathize. How frustrating it is to encounter people's narrow understanding and lack of desire to demonstrate compassion.

I'm praying, continuing to believe that God holds me and my four children in his hands, and knows what is best for us.

Praying..... ........

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

My heart is breaking for you. My Church is so important to me. I have such good support and so many prayers. I am sharing them with you. I will put you in my prayer box and have our Church praying also.God knows exactly what we are going through. When in the middle of the night the pure devil comes to tell me I don't have long on this earth I honestly begin to think of heaven and how wonderful it will be. I call on the name of Jesus to give me sleep and strength to endure. I go to sleep and have been getting some good sleep for quite a while.Hold on. I do want you to have your hearts desire of a transplant. God knows just what you need and he is always on time.God Bless You. Love and Prayers, PeggyFlorida, ipf 6/04Worry looks around.Sorry looks back,Faith looks up. Hi everybody, I completed my R. & L. angio this Tuesday.  Because my BP was running low, they didn't want to sedate me at all.  I was so scared, and felt like I was literally holding on to God moment to moment.  But God continues to be faithful, and He enabled me to get through it.  The results were generally good....no CAD, the pumping chamber of my heart looks good, my right-sided pressures aren't too eleveated, my left-sided pressures were hgiher than expected, which they hope can be helped with medicaiton.  I recently learned that my right ventricular ejection fraction which should be 50%, is now down to 33%, due to the fibrosis.  Has anybody else encountered this?  How significant is it? Having completed all my testing, the transplant committee meets 2.25.08, and I meet with my pulmonologist to discuss the outcome the next day.  Please pray, everybody.  It's so hard to know how to prepare mentally and emotionally.  People keep telling me how good I look, and I'm having a hard time piecing that together with simultaneously being told I need a transplant NOW.  It's like I have to justify to so many people that I trully am sick, and in a lot of ways it feels so surreal to me.  It's all happened so fast, just being diagnosed 11/07. I had a converstaion with someone at my church last night, and when I expressed disappointment at having not heard from the leadership of the church for prayer support, etc., when advising them of the need for transplant, it felt like she attacked me, saying, you have no right to expect that, and I shouldn't judge or I will be judged.  I was strongly told that I had no idea what was going on the last two years at the church, (there has been a lot of woundedness), and I found myself telling her I was sorry that my illness fell at an inconvenient time, hoping she would hear the absolute inappropriateness and insensitivity of what she had just said.  Sadly, she did not, and persisted to demonstrate poor listening, and an unwillingness to empathize.  How frustrating it is to encounter people's narrow understanding and lack of desire to demonstrate compassion. I'm praying, continuing to believe that God holds me and my four children in his hands, and knows what is best for us. Praying.............Jean Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Lots and lots of prayers for you. I understand the whole transplant

process, maybe better than some because of being evaluated at two

centers, and being one heck of a complicated case. As others will

tell you, having faith, whatever your religion or beliefs, sure does

help. I know that God has helped me overcome my doubts and fears,

and I am finally going to be listed. So, keep praying, keep

believing and I will do the same for you.

God Bless,

Tina

IPF 04/07 PH 11/07 Ohio

> >

> > Hi everybody,

> >

> > I completed my R. & L. angio this Tuesday. Because my BP was

running

> low, they didn't want to sedate me at all. I was so scared, and felt

> like I was literally holding on to God moment to moment. But God

> continues to be faithful, and He enabled me to get through it. The

> results were generally good....no CAD, the pumping chamber of my

heart

> looks good, my right-sided pressures aren't too eleveated, my left-

sided

> pressures were hgiher than expected, which they hope can be helped

with

> medicaiton. I recently learned that my right ventricular ejection

> fraction which should be 50%, is now down to 33%, due to the

fibrosis.

> Has anybody else encountered this? How significant is it?

> >

> > Having completed all my testing, the transplant committee meets

> 2.25.08, and I meet with my pulmonologist to discuss the outcome the

> next day. Please pray, everybody. It's so hard to know how to

prepare

> mentally and emotionally. People keep telling me how good I look,

and

> I'm having a hard time piecing that together with simultaneously

being

> told I need a transplant NOW. It's like I have to justify to so many

> people that I trully am sick, and in a lot of ways it feels so

surreal

> to me. It's all happened so fast, just being diagnosed 11/07.

> >

> > I had a converstaion with someone at my church last night, and

when I

> expressed disappointment at having not heard from the leadership of

the

> church for prayer support, etc., when advising them of the need for

> transplant, it felt like she attacked me, saying, you have no right

to

> expect that, and I shouldn't judge or I will be judged. I was

strongly

> told that I had no idea what was going on the last two years at the

> church, (there has been a lot of woundedness), and I found myself

> telling her I was sorry that my illness fell at an inconvenient

time,

> hoping she would hear the absolute inappropriateness and

insensitivity

> of what she had just said. Sadly, she did not, and persisted to

> demonstrate poor listening, and an unwillingness to empathize. How

> frustrating it is to encounter people's narrow understanding and

lack of

> desire to demonstrate compassion.

> >

> > I'm praying, continuing to believe that God holds me and my four

> children in his hands, and knows what is best for us.

> >

> > Praying.............Jean

> >

> >

> >

>

______________________________________________________________________

__\

> ____________

> > Never miss a thing. Make Yahoo your home page.

> > http://www.yahoo.com/r/hs

> >

>

[Guest guest]

Wow!!! I have been in your shoes. Usually this attitude shows up in someone who does not have a clue about chronic illness, let alone terminal illness. But, rest assured thier day will come. None of us get out of this world alive.

We also have to be careful that we mistake these people for Christians. They may be church goers, but they are not Christians. Don't let one rude, unsympathetic person tear down your faith. You are right to hold to God in the time of devastating illness.

Friends may let you down, your church leaders may let you down, family may let you down....but God is faithful.

I am praying for you and your family.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 >> Hi everybody,> > I completed my R. & L. angio this Tuesday. Because my BP was running low, they didn't want to sedate me at all. I was so scared, and felt like I was literally holding on to God moment to moment. But God continues to be faithful, and He enabled me to get through it. The results were generally good....no CAD, the pumping chamber of my heart looks good, my right-sided pressures aren't too eleveated, my left-sided pressures were hgiher than expected, which they hope can be helped with medicaiton. I recently learned that my right ventricular ejection fraction which should be 50%, is now down to 33%, due to the fibrosis. Has anybody else encountered this? How significant is it?> > Having completed all my testing, the transplant committee meets 2.25.08, and I meet with my pulmonologist to discuss the outcome the next day. Please pray, everybody. It's so hard to know how to prepare mentally and emotionally. People keep telling me how good I look, and I'm having a hard time piecing that together with simultaneously being told I need a transplant NOW. It's like I have to justify to so many people that I trully am sick, and in a lot of ways it feels so surreal to me. It's all happened so fast, just being diagnosed 11/07.> > I had a converstaion with someone at my church last night, and when I expressed disappointment at having not heard from the leadership of the church for prayer support, etc., when advising them of the need for transplant, it felt like she attacked me, saying, you have no right to expect that, and I shouldn't judge or I will be judged. I was strongly told that I had no idea what was going on the last two years at the church, (there has been a lot of woundedness), and I found myself telling her I was sorry that my illness fell at an inconvenient time, hoping she would hear the absolute inappropriateness and insensitivity of what she had just said. Sadly, she did not, and persisted to demonstrate poor listening, and an unwillingness to empathize. How frustrating it is to encounter people's narrow understanding and lack of desire to demonstrate compassion.> > I'm praying, continuing to believe that God holds me and my four children in his hands, and knows what is best for us.> > Praying.............> > > ____________________________________________________________________________________> Never miss a thing. Make Yahoo your home page. > http://www.yahoo.com/r/hs>

[Guest guest]

you have the strength of this board on your side. We will pray

for you and lift you up.

I sometimes think we should all wear t-shirts that state " I have a

terminal illness called PF. My lungs don't work properly. Cut me some

slack " . Or something to that effect.

A woman once screamed at me in the parking lot of a grocery store that

I had no right to be in the handicapped space and that she hoped that

God would one day make me handicapped. SAY WHAT? So, I chased her to

her car where she cowered in her front seat and lowered the back

window about 2 inches. (Ok, I didn't exactly chase her, but I walked

pretty darn fast considering I have no lungs). I informed her that I

was terminally ill and just because I didn't LOOK sick didn't mean

that I wasn't sick. My daughter yelled some choice words at her (my

h, my fierce protector) and the lady apologized profusely.

So, no, we don't " look " sick and I think that most people just assume

we're doing ok. It has even happened in my own family.

I'm sorry that your Church is not being understanding or giving you

the spiritual guidance that you're seeking. You will find friends

here, and I think the best sort because we all know what you're

enduring and living through.

You are in my prayers!

Hugs and hugs!

Babs in Texas Age 47

DX with PF due to Lupus/Scleroderma/Rheumatoid Arthritis 11/99

Also have Raynauds, Sjogrens and a few other items....

>

> Hi everybody,

>

> I completed my R. & L. angio this Tuesday. Because my BP was

running low, they didn't want to sedate me at all. I was so scared,

and felt like I was literally holding on to God moment to moment. But

God continues to be faithful, and He enabled me to get through it.

The results were generally good....no CAD, the pumping chamber of my

heart looks good, my right-sided pressures aren't too eleveated, my

left-sided pressures were hgiher than expected, which they hope can be

helped with medicaiton. I recently learned that my right ventricular

ejection fraction which should be 50%, is now down to 33%, due to the

fibrosis. Has anybody else encountered this? How significant is it?

>

> Having completed all my testing, the transplant committee meets

2.25.08, and I meet with my pulmonologist to discuss the outcome the

next day. Please pray, everybody. It's so hard to know how to

prepare mentally and emotionally. People keep telling me how good I

look, and I'm having a hard time piecing that together with

simultaneously being told I need a transplant NOW. It's like I have

to justify to so many people that I trully am sick, and in a lot of

ways it feels so surreal to me. It's all happened so fast, just being

diagnosed 11/07.

>

> I had a converstaion with someone at my church last night, and when

I expressed disappointment at having not heard from the leadership of

the church for prayer support, etc., when advising them of the need

for transplant, it felt like she attacked me, saying, you have no

right to expect that, and I shouldn't judge or I will be judged. I

was strongly told that I had no idea what was going on the last two

years at the church, (there has been a lot of woundedness), and I

found myself telling her I was sorry that my illness fell at an

inconvenient time, hoping she would hear the absolute

inappropriateness and insensitivity of what she had just said. Sadly,

she did not, and persisted to demonstrate poor listening, and an

unwillingness to empathize. How frustrating it is to encounter

people's narrow understanding and lack of desire to demonstrate

compassion.

>

> I'm praying, continuing to believe that God holds me and my four

children in his hands, and knows what is best for us.

>

> Praying.............Jean

>

>

>

________________________________________________________________________________\

____

> Never miss a thing. Make Yahoo your home page.

> http://www.yahoo.com/r/hs

>

[Guest guest]

Jean....I'm sorry too about the insensitivity of some of your church members.Surely that is not a general attitude toward you.

If you've been there a long while don't throw the baby out with the bath water.

People, places and things will let you down but God....never! You know that already.

Hugs.

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

Re: Please pray..transplant committee decision

Wow!!! I have been in your shoes. Usually this attitude shows up in someone who does not have a clue about chronic illness, let alone terminal illness. But, rest assured thier day will come. None of us get out of this world alive.

We also have to be careful that we mistake these people for Christians. They may be church goers, but they are not Christians. Don't let one rude, unsympathetic person tear down your faith. You are right to hold to God in the time of devastating illness.

Friends may let you down, your church leaders may let you down, family may let you down....but God is faithful.

I am praying for you and your family.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 >> Hi everybody,> > I completed my R. & L. angio this Tuesday. Because my BP was running low, they didn't want to sedate me at all. I was so scared, and felt like I was literally holding on to God moment to moment. But God continues to be faithful, and He enabled me to get through it. The results were generally good....no CAD, the pumping chamber of my heart looks good, my right-sided pressures aren't too eleveated, my left-sided pressures were hgiher than expected, which they hope can be helped with medicaiton. I recently learned that my right ventricular ejection fraction which should be 50%, is now down to 33%, due to the fibrosis. Has anybody else encountered this? How significant is it?> > Having completed all my testing, the transplant committee meets 2.25.08, and I meet with my pulmonologist to discuss the outcome the next day. Please pray, everybody. It's so hard to know how to prepare mentally and emotionally. People keep telling me how good I look, and I'm having a hard time piecing that together with simultaneously being told I need a transplant NOW. It's like I have to justify to so many people that I trully am sick, and in a lot of ways it feels so surreal to me. It's all happened so fast, just being diagnosed 11/07.> > I had a converstaion with someone at my church last night, and when I expressed disappointment at having not heard from the leadership of the church for prayer support, etc., when advising them of the need for transplant, it felt like she attacked me, saying, you have no right to expect that, and I shouldn't judge or I will be judged. I was strongly told that I had no idea what was going on the last two years at the church, (there has been a lot of woundedness), and I found myself telling her I was sorry that my illness fell at an inconvenient time, hoping she would hear the absolute inappropriateness and insensitivity of what she had just said. Sadly, she did not, and persisted to demonstrate poor listening, and an unwillingness to empathize. How frustrating it is to encounter people's narrow understanding and lack of desire to demonstrate compassion.> > I'm praying, continuing to believe that God holds me and my four children in his hands, and knows what is best for us.> > Praying.............> > > ____________________________________________________________________________________> Never miss a thing. Make Yahoo your home page. > http://www.yahoo.com/r/hs>

[Guest guest]

Just remember, God know you and your situation, when churches or people let us down, God will always be there for us. Hang in there my sister in Christ, you are loved and give it all over to God. You will be in my prayers.

Love,

Vicky81856 MI IPH/PF COPD Hammond Rich Syndrome Cor Pulmonale 4/06 Create a Home Theater Like the Pros. Watch the video on AOL Home.