Re: Cardiac cath tomorrow, and ........questions

[Guest guest]

You know, this is not a one disease fits all. It is no wonder that the researchers have such a difficult time finding a treatment and a cure. It seems that no two of us are alike. But, this group is a good place to maybe find some similarities and thus find answers. I hope that you will find answers here.

I cannot even imagine how you are coping with such enormous changes in your life so quickly. I was diagnosed 11 years ago...yes, 11 years. I was told 2-4 at biopsy, but here I am. So, sometimes the docs are wrong. Knowing that makes it hard to make decisions like the one facing you.

I have already prayed that your pressure will be down and will continue to remember you as I pray.

I think that you are the one to decide when the time is right for transplant. You live in that tent. No one, not even the doctors, know you like you do. When I went for transplant evaluation, I went with the idea that I could always say no when the time came if I was not ready. As it turned out I couldn't qualify for medical reasons. But, just remember the final decision is yours. Ask God for his guidance and follow your gut.

Please let me know how the test turned out. Gotta love those heart caths, huh. Ouch!

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 haven't been on in a while, but I continue to read your e-mails and many have been of help and inspiration to me. I have been blessed by your strength and perseverence through the uncertainty of this disease.> Tomorrow I'll be undergoing another cardiac catheterization to check the pressures in my heart to see if they've improved as they've been titrating up on this vasodilator medication to reduce the L. ventricular end diastolic pressure in my heart that my pulmonologist seemed very concerned would put me at great risk post-transplant of pulmonary edema. Please pray that the pressure has decreased and that the transplant team will be more comfortable with their decision to list me.> Can anyone offer their insight into when it's time to be listed for transplant? As I've shared before, it was such a shock to have been told several months ago when I asked to better understand the window of time when I was sick enough to need a transplant, and well enough to undergo one, and to hear my pulmonologist tell me that I was there, that I needed one now. Just having been diagnosed 11-1-07, I wasn't prepared to hear this so soon. When he told me, he said he would rate me at 40, which would put me in the top 20th percentile. > I guess it is still all so surreal, I'm having touble believing it's all true. Has anyone ever read the book, "Taking Flight..........." a collection of essays written by lung transplant survivors? It speaks of stories so varied, like people who walk into the hospital, unassisted, without oxygen, to have their transplant, to stories of people who sound very limited and oxygen dependent.> I currently may not use oxygen at rest, but may need anywhere from 1 - 4L, depending upon the extent and length of exertion. I'm 52. My father died of IPF when I was 19. He was 75. We were told that he had a year to live when we were told of his diagnosis, but 10 days after we were told, he went into the hospital, and threw and embolus and died.> Has anyone heard that you are generally considered for transplant work-up when you anticipated prognosis is one year? Or am I just imagining or hearing things?> As part of the transplant work-up, I was required to see a psychiatrist.........the one who sees all lung transplant patients. She said something affirming in that by far the hardest thing she hears from patients is the waiting and uncertainty, first to be listed, and then onces you're listed.> With my R. ventreicular ejection fraction now only 33%, when it's supposed to be 50%, caused by what my cardiologist describes as my heart trying to pump into my lungs, where normally it would be like pumpung through cardboard, but because of the fibrosis, it's like pumping into a brick wall, will this ejection fraction continue to decline without transplant, and will waiting damage my heart further, and is this reversible if I have the transplant?I sure would appreciate any and all insights and wisdom you all might offer about readiness for transplant and so on.. > Thanks for listening and for any valuable help you might offer...............Jean> > > ____________________________________________________________________________________> Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ>

[Guest guest]

Jean...I wish I could be of some specific help to you but I can only encourage you generally. I know nothing about what you are facing............I'm too old and to fluffy to consider for transplant. (I don't think I would do it anyway).

You seem brave to me, considering where you are now and where you are going and why.

How tragic your father died of this damn disease! I had no idea it could be familial until I came on this board. I worry now about my kids! Especially one daughter who has always had "respiratory" problems.

I'm sure you have been reading about Gwynnie and her incredible transplant story.

Your cardio cath is today and I'm sending prayers your way!

And a big ole MamaSher hug!

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Cardiac cath tomorrow, and ........questions

Hi everybody......

I haven't been on in a while, but I continue to read your e-mails and many have been of help and inspiration to me. I have been blessed by your strength and perseverence through the uncertainty of this disease.

Tomorrow I'll be undergoing another cardiac catheterization to check the pressures in my heart to see if they've improved as they've been titrating up on this vasodilator medication to reduce the L. ventricular end diastolic pressure in my heart that my pulmonologist seemed very concerned would put me at great risk post-transplant of pulmonary edema. Please pray that the pressure has decreased and that the transplant team will be more comfortable with their decision to list me.

Can anyone offer their insight into when it's time to be listed for transplant? As I've shared before, it was such a shock to have been told several months ago when I asked to better understand the window of time when I was sick enough to need a transplant, and well enough to undergo one, and to hear my pulmonologist tell me that I was there, that I needed one now. Just having been diagnosed 11-1-07, I wasn't prepared to hear this so soon. When he told me, he said he would rate me at 40, which would put me in the top 20th percentile.

I guess it is still all so surreal, I'm having touble believing it's all true. Has anyone ever read the book, "Taking Flight..........." a collection of essays written by lung transplant survivors? It speaks of stories so varied, like people who walk into the hospital, unassisted, without oxygen, to have their transplant, to stories of people who sound very limited and oxygen dependent.

I currently may not use oxygen at rest, but may need anywhere from 1 - 4L, depending upon the extent and length of exertion. I'm 52. My father died of IPF when I was 19. He was 75. We were told that he had a year to live when we were told of his diagnosis, but 10 days after we were told, he went into the hospital, and threw and embolus and died.

Has anyone heard that you are generally considered for transplant work-up when you anticipated prognosis is one year? Or am I just imagining or hearing things?

As part of the transplant work-up, I was required to see a psychiatrist.........the one who sees all lung transplant patients. She said something affirming in that by far the hardest thing she hears from patients is the waiting and uncertainty, first to be listed, and then onces you're listed.

With my R. ventreicular ejection fraction now only 33%, when it's supposed to be 50%, caused by what my cardiologist describes as my heart trying to pump into my lungs, where normally it would be like pumpung through cardboard, but because of the fibrosis, it's like pumping into a brick wall, will this ejection fraction continue to decline without transplant, and will waiting damage my heart further, and is this reversible if I have the transplant?I sure would appreciate any and all insights and wisdom you all might offer about readiness for transplant and so on.

Thanks for listening and for any valuable help you might offer..............Jean

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

[Guest guest]

Hi

I too don't know of how much help I can be, but you are in my thoughts and prayers and I hope all goes well for you.CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

Subject: Re: Cardiac cath tomorrow, and ........questionsTo: Breathe-Support Date: Thursday, May 1, 2008, 10:34 AM

Jean...I wish I could be of some specific help to you but I can only encourage you generally. I know nothing about what you are facing...... ......I'm too old and to fluffy to consider for transplant. (I don't think I would do it anyway).

You seem brave to me, considering where you are now and where you are going and why.

How tragic your father died of this damn disease! I had no idea it could be familial until I came on this board. I worry now about my kids! Especially one daughter who has always had "respiratory" problems.

I'm sure you have been reading about Gwynnie and her incredible transplant story.

Your cardio cath is today and I'm sending prayers your way!

And a big ole MamaSher hug!

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Cardiac cath tomorrow, and ........questions

Hi everybody... ...

I haven't been on in a while, but I continue to read your e-mails and many have been of help and inspiration to me. I have been blessed by your strength and perseverence through the uncertainty of this disease.

Tomorrow I'll be undergoing another cardiac catheterization to check the pressures in my heart to see if they've improved as they've been titrating up on this vasodilator medication to reduce the L. ventricular end diastolic pressure in my heart that my pulmonologist seemed very concerned would put me at great risk post-transplant of pulmonary edema. Please pray that the pressure has decreased and that the transplant team will be more comfortable with their decision to list me.

Can anyone offer their insight into when it's time to be listed for transplant? As I've shared before, it was such a shock to have been told several months ago when I asked to better understand the window of time when I was sick enough to need a transplant, and well enough to undergo one, and to hear my pulmonologist tell me that I was there, that I needed one now. Just having been diagnosed 11-1-07, I wasn't prepared to hear this so soon. When he told me, he said he would rate me at 40, which would put me in the top 20th percentile.

I guess it is still all so surreal, I'm having touble believing it's all true. Has anyone ever read the book, "Taking Flight...... ....." a collection of essays written by lung transplant survivors? It speaks of stories so varied, like people who walk into the hospital, unassisted, without oxygen, to have their transplant, to stories of people who sound very limited and oxygen dependent.

I currently may not use oxygen at rest, but may need anywhere from 1 - 4L, depending upon the extent and length of exertion. I'm 52. My father died of IPF when I was 19. He was 75. We were told that he had a year to live when we were told of his diagnosis, but 10 days after we were told, he went into the hospital, and threw and embolus and died.

Has anyone heard that you are generally considered for transplant work-up when you anticipated prognosis is one year? Or am I just imagining or hearing things?

As part of the transplant work-up, I was required to see a psychiatrist. ........the one who sees all lung transplant patients. She said something affirming in that by far the hardest thing she hears from patients is the waiting and uncertainty, first to be listed, and then onces you're listed.

With my R. ventreicular ejection fraction now only 33%, when it's supposed to be 50%, caused by what my cardiologist describes as my heart trying to pump into my lungs, where normally it would be like pumpung through cardboard, but because of the fibrosis, it's like pumping into a brick wall, will this ejection fraction continue to decline without transplant, and will waiting damage my heart further, and is this reversible if I have the transplant?I sure would appreciate any and all insights and wisdom you all might offer about readiness for transplant and so on.

Thanks for listening and for any valuable help you might offer....... .......Jean

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

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