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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Wednesday, May 20, 2015

Fair Warning!

There is such a fine line between expressing my feelings, saying what I feel needs to be said and hurting someone else’s feelings. Often, I say nothing out of fear or an attack of ignorance.  I am the one that comes up with the perfect intelligent response a half of an hour AFTER the conversation has ended.  I was raised on “If you cannot say something nice, do not say anything at all”,  “keep it locked up inside don't talk about it, talk about the weather” and “Better to be thought a fool than to open your mouth and remove all doubt”.

I have given up trying to figure this out! I think it would be wise for everyone to plan on my being inappropriate because I suspect I will be saying a lot more about how I feel!  FAIR WARNING!

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  "So Much to Say"  Dave Matthews Band

I am not good at communicating this kind of stuff and I do not have to do it over and over again and besides, I just plain hate doing it. So writing seems to be the easy way through it.

The past few months have been difficult. A recent series of tests have revealed both heart valves are weakening, the stent that was placed in that miraculous collateral artery that kept me alive several years ago has failed and that artery has collapsed just like the 2 other major arteries did years ago. My Ejection fraction (the amount of blood my heart can pump) has dropped to 20%, and EKG’s continue to degrade. After many tests and consultations confirming these conditions, I was offered the option of heart transplant and/or LVAD (left ventricular assist device) to prolong my life.

I have spent a good amount of time with my cardiologist these past few weeks, she is a wonderful young woman, specializing in women’s heart disease that has been taking care of me and my heart for over a year now and I like her very much. We have talked at length about recent test results and the pros and cons of my choices. I have with her blessing and agreement decided to discontinue the testing regiment that would establish cardiac viability and my placement on the transplant list. I have opted to not have a transplant. I have however elected to continue to enjoy the outrageously wonderful quality of life I now have, for as long as I can without risking an extremely dangerous surgery, organ rejection and possible damage to my already compromised kidneys from anti-rejection drugs. The waiting list is long and I am in the lowest percentage of heart recipients. Instead of compromising my extraordinary “now”, I have been recommended to have an ICD (Internal cardiac defibrillator) implanted in my chest which will automatically monitor and/or shock my heart when it needs it to prevent sudden cardiac death and give me the best opportunity to have a spectacular NOW! I am seeing an electrophysiologist (I know, what a mouthful) for more testing and to schedule that surgical procedure in the near future.

The rest of my cardiac support will be managed with medication. The new meds have already made an amazing and wonderful difference in pain management and my day to day quality of life. We will continue to manage and support symptoms and declining function as the situations arrive with new medicines.

I need each of you to understand how magnificent I truly am. I am not giving up! I am blessed with the fantastic opportunity of making intelligent well researched decisions about my own quality of life with wonderful medical support. I am in a very good and loving place spiritually and emotionally and I really do not need anything, but your happy loving thoughts! This is simply another part of the disease I have lived with for over 5 years, it is just getting a little harder now. I plan on continuing to teach when I can, create art, laugh, love and enjoy this amazing life for much longer!

3 comments:

  1. Love you, love your attitude, love your energy. You are an inspiration-and you're not afraid to kick ass!

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