life, love,art. heart failure and assorted ramblings

life, love,art. heart failure and assorted ramblings

Don't Talk Like That...

I write to find out what my heart thinks....
I write to expose and work through the ugly parts of this disease, open heart surgery that was less than successful and more recently an S-ICD (internal cardiac defibrillator) implanted in my chest that will hopefully restore my heart beat in case of sudden cardiac death. I am here to celebrate my life, to uncover my fears, to hold on to love, to learn how to live a full life with heart failure, to honor my creativity, and to explore all of my emotions out loud ...before anyone can say
"Don't talk like that!"


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Thursday, February 25, 2010

Waiting....Waiting....Waiting.....Waiting....

No word from Shands- Do they understand?

Struggling with focusing on positive... Understanding that there is positive out there, it needs my patience (patience that I had precious little of, before all of this started). In the mean time, I keep myself busy with Artist Way Weekend! My favorite weekend of the entire year. Better than Christmas!

Monday, February 22, 2010

“The heart has reasons that reason (or doctors) cannot know.”

Am not certain if writing about this experience is helpful or hurtful, it carries both emotions. The fact is, that if I this was exciting, wonderful and happy news I would be screaming from every street corner, face book, email etc. not posting clinical results on an obscure blog.

I had really been excited and was looking forward to the second visit to Shands Hospital (University of Florida, Gainesville) and the tests scheduled last week. I have been feeling so much better recently and was certain that significant healing was well under way. I am thinking that much of this feeling is due to my awesome family and a phenomenal group of artists that get together every Friday night to share the book "Veins of Gold” journey to the creative heart. Oh yea, there is a little wine and chocolate, too!

The first visit to Shands was to confirm me as a possible candidate for the stem cell research. Questions about the original diagnosis opened up the possibility that there might still be a chance for by-pass surgery. The doctors felt that until all chances of by-pass were completely explored and ruled out I could not participate in the stem cell study and they scheduled the exploratory heart catheter to make that determination. I saw all of this new testing as the possibility that there had been significant healing.


The best way to determine if there had been any change was to do another heart catheter and compare the new results with first results done in October. They would be looking to see if the heart damage was old and unrecoverable heart damage or new damage caused by the heart attack that and possibly mitigated by the stint that was put in. A heart catheter, is a way of looking at the inside of the heart by running a tube from the artery in the groin up into the heart. They inject dye and take pictures. The procedure does not take that long, but they keep you around for the rest of the day just to monitor place where they went into the artery. Quite frankly, it is a bit unnerving to have so many people paying this much attention to my crotch....**$#@*()


I believed strongly that there was significant healing, so I was really looking forward to getting some good news. It was difficult and incredibly disappointing to hear “no change". Dr. Anderson (the Shands cardiologist) said the occluded Left Anterior Descending artery is not restorable and the gross left ventricle damage would not improve with revascularization (big word for restoring blood to the damaged part of the heart, I’m beginning to pick up the lingo). The occluded Right Coronary Artery could possibly be by passed, but there would not be enough restoration to justify the risk.


Dr. Anderson will be submitting the heart catheter report and his opinion to the Shands cardiac surgical team, apparently they are the ones that pass the final and the official diagnosis. We were told to assume the surgeons will agree with his assessment and I will officially be diagnosed with irreversible and terminal heart failure. With this diagnosis I will most likely be accepted into cardiac stem cell research program. I am grateful that the stem cell study remains a possibility and will focus on the positive outcomes that the study can offer.

I remind myself and all that love me, that the best, strongest most amazing part of who I am- cannot be measured with rulers or medical tests. I am on this path for a reason.

Monday, February 1, 2010

Cardiac Stem Cell Clinical Trial

Cardiac Stem cell research is a new study to see if adult stem cells from bone marrow can help and a heart regenerate damaged muscle tissue I have explored alternative treatments for my situation and have agressively applied to participate in cardiac stem cell trials all over the country. I really like that it is my body that would be healing my body! I had been accepted at John Hopkins in MD, but at the last minute they opted out thinking the travel back and forth may be too difficult. I have also been turned down by a lot of other stem cell studies, unable to meet study criteria for one reason or another.

A few weeks ago I was tickled that Shands (University of Florida) responded to my application to be included in their stem cell study. I drove up last Friday(1-29-10) to Gainesville with my best long time friend Terry and met with some really wonderful nurses and doctors for the initial stages of the clinical trial. Based on the films from my previous heart catheter, the Shands doctors are thinking there is a chance I might now be a candidate for surgery. I cannot be a part of this study unless there are absolutely no other viable options.

I am now working on scheduling another heart catheter to assess the actual make up of the damage (maybe I have some cool heart healing on my own) and then we will go from there! It will either be on with the stem cell clinical trial or another shot at heart surgery.

Will let you know, what I know, when I know it