Has anybody heard of coronary interstitialf fibrosis?

[Guest guest]

Hi Everybody,

The outcome of my recent work-up for transplant is to postpone transplant for now. My PFTs are stable, and the L. ventricular end diasolic pressure that was so elevated before (it was 23, and was supposed to be 5), and the titration of the hydralazine has been effective, as it has dropped down to 6, as shown from my last cardiac cath last Thursday.

I also underwent cardiac biopsies at that time, and I was now told that I have intermittent interstitial fibrosis in my heart, and have been referred to a geneticist who works in the cardiology department at the University of Chicago for possible testing to see if perhaps I have some genetic predisposition or inherent tendency for fibrosis. Has anybody ever heard of this? I feel discouraged by learning this. For now, my pulmonologist is encouraged and wants to postpone transplant for as long as possible. Rather than a cure, he stresses how important it is to recognize that transplant is just a trade-off of one set of symptoms and problems for another.

He seemed to feel encouraged by how good I'm doing. I've had some recent weight loss, and I continue to walk 30 mins. every day. He said to just continue what I'm doing.

Somehow all of this has forced me to recognize that this disease is what it is at an even more "real" level, and that no simplisitic, idealistic approach to believing that translant would bring a great improvement to my life wa somehow crushed. It's been a tearful time since. And I don't understand anything about the fibrosis in my heart.

If anybody has any information or guidance, please share. Thanks guys.

Jean

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

[Guest guest]

Jean... Before I shut down for today I want to say my thoughts and prayers are with you! I'm glad your dr. thinks you are doing well. I don't know one thing about fibrosis in the heart but there will be someone here who does....

I'm sure there is a let down with transplant on the shelf for awhile. That's only one answer tho' Jean. God knows you and let's hope the drs/decisions are guided by Him.

One day at a time girl. One day at a time.

Do you feel ok?

Over and out for me..................

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

Has anybody heard of coronary interstitialf fibrosis?

Hi Everybody,

The outcome of my recent work-up for transplant is to postpone transplant for now. My PFTs are stable, and the L. ventricular end diasolic pressure that was so elevated before (it was 23, and was supposed to be 5), and the titration of the hydralazine has been effective, as it has dropped down to 6, as shown from my last cardiac cath last Thursday.

I also underwent cardiac biopsies at that time, and I was now told that I have intermittent interstitial fibrosis in my heart, and have been referred to a geneticist who works in the cardiology department at the University of Chicago for possible testing to see if perhaps I have some genetic predisposition or inherent tendency for fibrosis. Has anybody ever heard of this? I feel discouraged by learning this. For now, my pulmonologist is encouraged and wants to postpone transplant for as long as possible. Rather than a cure, he stresses how important it is to recognize that transplant is just a trade-off of one set of symptoms and problems for another.

He seemed to feel encouraged by how good I'm doing. I've had some recent weight loss, and I continue to walk 30 mins. every day. He said to just continue what I'm doing.

Somehow all of this has forced me to recognize that this disease is what it is at an even more "real" level, and that no simplisitic, idealistic approach to believing that translant would bring a great improvement to my life wa somehow crushed. It's been a tearful time since. And I don't understand anything about the fibrosis in my heart.

If anybody has any information or guidance, please share. Thanks guys.

Jean

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

[Guest guest]

I don't have the option of transplant, but given the choice at this point in my disease, I would jump on it. It is a chance for life. I don't think Gwynne would agree that she is just as sick as she was before transplant. I have had doctors say that to me, too. But, other doctors believe wholeheartedly in transplant.

I'm glad that you are going to have time to acclimate to the disease and hopefully come to a stabilization place. I have never heard of coronary fibrosis. Does not sound good. Good grief! Is there a treatment for that?

just let that water run out of your eyes. Tears wash the soul. This is a rough road we are walking and there are not many direction signs along the way. It is kind of like a maze. This group is a perfect example of that. Doctors do not agree on treatment and some don't treat at all. Most of the medical community know nothing about PF and the general public knows nothing. So, not much understanding out there.

Take some time, read up on the information that you have gotten so far. Things have been coming at you way too fast. My prayers are with you.

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,> The outcome of my recent work-up for transplant is to postpone transplant for now. My PFTs are stable, and the L. ventricular end diasolic pressure that was so elevated before (it was 23, and was supposed to be 5), and the titration of the hydralazine has been effective, as it has dropped down to 6, as shown from my last cardiac cath last Thursday.> I also underwent cardiac biopsies at that time, and I was now told that I have intermittent interstitial fibrosis in my heart, and have been referred to a geneticist who works in the cardiology department at the University of Chicago for possible testing to see if perhaps I have some genetic predisposition or inherent tendency for fibrosis. Has anybody ever heard of this? I feel discouraged by learning this. For now, my pulmonologist is encouraged and wants to postpone transplant for as long as possible. Rather than a cure, he stresses how important it is to recognize that transplant is just a trade-off of one set of symptoms and problems for another.> He seemed to feel encouraged by how good I'm doing. I've had some recent weight loss, and I continue to walk 30 mins. every day. He said to just continue what I'm doing. > Somehow all of this has forced me to recognize that this disease is what it is at an even more "real" level, and that no simplisitic, idealistic approach to believing that translant would bring a great improvement to my life wa somehow crushed. It's been a tearful time since. And I don't understand anything about the fibrosis in my heart. > If anybody has any information or guidance, please share. Thanks guys.> 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....would you mind putting your info on the database? No one has access but the family. thanks.

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

Re: Has anybody heard of coronary interstitialf fibrosis?

I don't have the option of transplant, but given the choice at this point in my disease, I would jump on it. It is a chance for life. I don't think Gwynne would agree that she is just as sick as she was before transplant. I have had doctors say that to me, too. But, other doctors believe wholeheartedly in transplant.

I'm glad that you are going to have time to acclimate to the disease and hopefully come to a stabilization place. I have never heard of coronary fibrosis. Does not sound good. Good grief! Is there a treatment for that?

just let that water run out of your eyes. Tears wash the soul. This is a rough road we are walking and there are not many direction signs along the way. It is kind of like a maze. This group is a perfect example of that. Doctors do not agree on treatment and some don't treat at all. Most of the medical community know nothing about PF and the general public knows nothing. So, not much understanding out there.

Take some time, read up on the information that you have gotten so far. Things have been coming at you way too fast. My prayers are with you.

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,> The outcome of my recent work-up for transplant is to postpone transplant for now. My PFTs are stable, and the L. ventricular end diasolic pressure that was so elevated before (it was 23, and was supposed to be 5), and the titration of the hydralazine has been effective, as it has dropped down to 6, as shown from my last cardiac cath last Thursday.> I also underwent cardiac biopsies at that time, and I was now told that I have intermittent interstitial fibrosis in my heart, and have been referred to a geneticist who works in the cardiology department at the University of Chicago for possible testing to see if perhaps I have some genetic predisposition or inherent tendency for fibrosis. Has anybody ever heard of this? I feel discouraged by learning this. For now, my pulmonologist is encouraged and wants to postpone transplant for as long as possible. Rather than a cure, he stresses how important it is to recognize that transplant is just a trade-off of one set of symptoms and problems for another.> He seemed to feel encouraged by how good I'm doing. I've had some recent weight loss, and I continue to walk 30 mins. every day. He said to just continue what I'm doing. > Somehow all of this has forced me to recognize that this disease is what it is at an even more "real" level, and that no simplisitic, idealistic approach to believing that translant would bring a great improvement to my life wa somehow crushed. It's been a tearful time since. And I don't understand anything about the fibrosis in my heart. > If anybody has any information or guidance, please share. Thanks guys.> Jean> > > ____________________________________________________________________________________> Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ>