Yo where you at dawgs -
I'm back on the GBITG, if only temporarily.
First and foremost, I want to thank everyone from the very bottom of my heart and soul for all the kind words, thoughts, prayers and every thing else over the past 30 some days. There aren't the words to describe how special and important that all is to me.
Here is the story: I am currently what is called 1A on the heart transplant donor list in the US. As of two days ago I was 1 of 4 people in the nation waiting at 1A for my body size and blood type. As of right now I'm at home (got home a few hours ago) because there is only one surgeon at U of M who can do my transplant. This is because of the complexity of my current situation with my existing heart. I have what is called a baffle in my heart which takes blood traveling to the wrong ventricle and re-routes it to the correct ventricle like a slide. This is called a Mustard procedure or transposition of the great arteries. It's very complex and basically out of date in 2009. I origianlly had this surgery in 1976 at age 1. It's a pediatric procedure. Anyways...this one doctor who can do this is going to Korea for a week. Not sure why but obviously it's important. So long story short, even if a heart did show up this week there is no one to do the transplant on me. So they sent me home on this medication called Milrinone.
Milrinone is a med for patients with acute heart failure that can occur in a matter of minutes or hours. Basically, without it I'm dead. Before they put me on this I basically was...
I went into a local hospital on the 24th of April with severe breathing problems, constant coughing and weakness overall. Basically the same shit that's been feuding with me off and on for four years. After 4 days this fucking doctor released me after doing nothing for me but draining some fluid from my lungs and around my heart with Lasix, something I was already taking anyways. Then he totally changed my meds that U of M has had me on for 4 years and Saturday night the 25th I almost died I think...I had every severe reaction you could have to this new medicine they gave me...my stomach ballooned up like a 9 month pregnant woman...I had a fever, vomiting every 25 minutes or so and all kinds of stomach issues...dizziness so bad I actually fell and hit the floor trying to make it to the bathroom. Could breath if I layed on any side of my body and would basically go in and out of consciousness. The only reason I didn't go back to the ER is because these dick heads put me on that shit. So after suffering all day and night Sunday (and watching the draft) I finally went to my parents house on Monday morning and called Uof M. They said I was in severe heart failure and ordered me to the hospital in Ann Arbor (about 1 and a half hours away) ASAP.
My first 10 days there are a blur basically. I was out. Slept all day and night (as I hadn't slept in about 12 days before I went in there because of my symptoms). They had me on a steady dose of Morphine and handled draining the excess fluids from my body very well beginning as soon as I got there. They eventually decided I needed a pacemaker and defibrillator. One of my main 2 heart doctors came into the room and told me. For the first time in years I cried. I think it was because at that second it felt like all this shit I've been going through over 4 years was finally about to change for the better. I took 10 minutes to let my emotions take over and then I got strong. The next morning I asked for a Priest to visit me in the hospital and we prayed and again, I cried, but it was because of relief and happiness. I wasn't scared. Since then I've been 110% strong, ready and wanting to do this. No worries at all. Totally cool.
They put the pacemaker and defibrillator in by cutting an incision into the top of my left peck. This was supposed to get to the transplant. Well, I came out of the surgery with a heart working at 3%. The exact words the doctor used was "We can't figure out how you were surviving." So that's when they put me on this Milrinone stuff and moved me fast as hell to the transplant list. They then moved me to ICU. The Milrinone restored everything...my liver, kidney's, appetite...everything. It helps my heart pump blood to my body basically. So I'm me, just need a new heart. Otheriwise I feel a lot better.
So I'm getting this sooner than later. I'm ready. I want it. I have no questions or concerns. My body is strong and my mind is positive.
I'll probably go back to the hospital in a week. I have a nurse coming out every day to see me and change this medicine (which goes through a pick in my bicep, snakes through this huge vein there and into my heart) and basically check on me. If I respond real well at home they may keep me here but as of now I am still 1A. I cannot wait for this. I need this and want this and can't wait to live a life with a 100% heart after living with one at 30% capacity for 34 years.
So that's the deal.
Thanks again to everyone who cares and sends their best wishes. Sooner that later I will be back full time better than ever.
Love you all.
Swarm
(if you haven’t already)