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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Music is loading really slow lately...sorry...

Thursday, March 25, 2010

Wrong Answers

Waiting and whining and the answer is no. I left a hospital with the knowledge this was bad, and most probably would not have a happy ending, and as goofy as it sounds, I was ok with that. Maybe the reality had not sunk in, or maybe it was before hope took hold.

Hope took hold. It was like a little light at the end of a long tunnel, all I had to do was be strong, keep working and keep hoping. As it turns out hope is like a rainbow, it is pretty but as soon as you get close to it, it vanishes.

This is the last no. I have wasted the last 6 months of my life chasing a rainbow and avoiding the shadows. The shadows had all of the answers that I knew in my heart, but would not look at.

I am not sure what happens next, I have been excluded from stem cell research, and declined for surgery. It is time for the roller coaster to stop. The hope has to stop, so acceptance and living can go on.

Monday, March 22, 2010

Thinking to myself... visually Out Loud!

VOG exercise was to create a "doll" (this one is out of clay)this is kind of interesting, even to me. What I am unable to talk about seems to be slipping through my fingers with clay. I know I am supose to be grateful that this wonderful technology is available and you know what.........I am afraid with a high risk heart surgeon back in the picture that LVAD is being put back on the table. I am so afraid...

Left Ventricular Assist Device a pump implanted in the chest, run by external power.

Big Girl Panties in the Wash

Almost 1 week later...No call-no news...Sent an email on Friday, and the reply was, "I should have heard something by now" They will look into it. I am exhausted, physically and emotionally and almost at the point where it just does not matter any more...whine-whine-whine! Big Girl Pantines must be in the wash today.

Tuesday, March 16, 2010

Roller Coaster Ride!

And it goes on…..spending days, weeks waiting to get going with the stem cell research, finally the phone call I have been waiting for comes from the Shands Cardio-pulmonary office, but NOT with the info to start the stem cell research that I have been waiting for.
Another ride is starting. The thoracic surgeons reviewed the film and now I am waiting for a surgeon to call. When I looked him up on the internet, he is a high-risk cardiac surgeon that participates in a lot of clinical trials and research. Not sure where I am headed, another clinical trial, surgical or just a high-risk surgical procedure. Either way it feels like a brand new ride and I waiting on another phone call.

I never really thought much about how much control each of us has over our own lives, I always felt like I was in charge. I am learning that I was wrong.

Sunday, March 14, 2010

Gratitude

It is so very easy to get caught up in all of the things I do not have anymore, than to focus on the goodies that are still here. Be grateful…another platitude declared by those that really do not have a clue!
Like most important things in life, gratitude is easier said than done. So I am still learning.
But, I will not lie, I would love nothing more than to have it all back! and I am angry from time to time. Most often here!

Saturday, March 13, 2010

No News... is Good News???

That is what they say....So who the hell is "they"?

Although on the outside my friends and family constantly comment on how well I am "doing" on the inside I am screaming at the top of my lungs. Screaming for all I am worth. Half of me dying to be heard, the other half scared I will be heard.

I finally screwed up the courage to email Shands to check on my status in the stem cell research. They replied quickly but, there was no information in the answer. "The surgeons are still looking at the films, no official report yet, I expect it sometime this week" That was on Monday today is Saturday, the films they are referring to were made 21 days ago.

Don't they understand that this is my life? Don't they understand this is important?