Cheerleader of My Own Life

So.. It's been forever since I've written in here.
Reason #1: I was in the hospital for a month.
Reason #2: It's been hard to get through some days of recovery for a number of reasons. Reality kicked in hardcore.

I officially have had my heart cut open.. both literally and emotionally. I have the scar to prove it. And a few more to prove open heart surgery was not rainbows and sunshine. To put it simply, my month in the hospital was a month from HELL.

I was constantly sleeping, nauseous, or in pain.

I should first explain what I had corrected.. which to tell you the truth, I kind of wish I had asked if I could have had the surgery recorded... would have been an out of body experience to watch that but, I think it would have been nicer to have every detail of what was going on, explained.

My reality check of living through what I did

What I had corrected:
Double Chambered Right Ventricle Repair
VSD closure (murmur)
Division of Vascular Ring
Left SVC to Right Atrium Conduit

In previous posts, I called Double Chambered Right Ventricle, Double Outlet. My New Jersey cardiologist, and I find, older doctors, seem to overlap the terms without much differentiation. From my understanding, it's a bundle of muscle fibers and to correct it, at least with the additional muscle from my Hypertorpic Cardiomyopathy, they took off a good amount of muscle.  Apparently this procedure could not even be done twenty years ago. Thank God for the technology advancements and Dr. Bacha. I think he is a miracle worker with how he can imagine the heart prior to surgery and whom has amazingly skilled hands to perform such intense surgeries.

The VSD murmur is a lot easier to correct by closing the murmur and no longer allowing back-flow of blood.  From what I understand, the Vascular Ring correction was a simple snip. If you've ever seen it, the top of the heart, the aorta, has extra tissue and developed a ring around the esophagus. This also caused my aorta to be towards the right and so, that was corrected as well.

The last thing, the Left SVC to Right Atrium Conduit, I didn't even know I had until the day of pre-op. They had me do a bubble echocardiogram and stuck me three times before finally finding a vein (that would be the first of many needles I'd be stuck with in me over the next month). From what the doctor told me, any time something was injected into my left arm, instead of it going to the right artery through the lungs, it went straight to my heart, and potentially, straight to my brain. Who knew?!

Going in was.. well nerve wrecking. I was lucky enough to not only have my parents and sister come, but one of my best friends, Sam, come as well. Let me put it this way, in times of crisis and life or death situations, you really do find out who your true friends are (Cliche I know). All I can say is, for the most part, I chose my friends pretty damn well. Some people didn't bother and to which I say, you couldn't handle it and I really became my own hero. The people I thought would have been there for me, weren't. I might have been abandoned by those people, but I truly was lucky for all those wonderful friends and family who made me feel loved and not alone during my time of need. I have been blessed with some amazing people in my life, that's for sure.

Sam and me

After a week in the hospital, I was discharged. Unknown to me, when I was released, my pancreas was acting up. My doctor even came in to ask if I wanted to stay, didn't give a reason, but I was like "Get me The HELL OUTTA HERE." If only that was the worst of it. The day after I was released, I noticed my stomach was pretty distended on my left side. My left side has my only kidney. Back to the hospital I went.

I was admitted the following day for pancreatitis. The day after, I was discharged along with being starved. A few days later, I had to go back to the hospital because I was having an echo done to see if the water went down in my heart. At the time, I was already feeling like I was short of breath and not nearly as much energy as I had when I did leave the hospital the first time.

My doctor was convinced I could have a syringe method of literally sucking the liquid out of my heart. This is called pericardiocentesis. I was literally in the cath lab all prepped to go, but as always, my health is never that simple. They did an ultrasound. The ultrasound showed that I had water around the heart, but not in an area in which the surgeon could reach it. If he attempted, I could have gone into shock. Kind of ridiculous that I was moments away from possibly having that happen. I was admitted and my doctor decided, that water still needed to come out. I had the window procedure done instead.

It took four days to actually get into surgery but, I had a surgeon who had performed surgery on President Clinton. Pretty damn cool. I was starved each day waiting, hoping, I would get in. But I was not able to and the day before my possible surgery.. I finally cracked.

I'm not really ashamed of it, but my goodness, when the surgeons came in to tell me what was going to happen and the fact that I was by myself, I kind of just lost it. I wanted to know why, always, why my body could not just do things simply and I would be done with all my health problems. Nothing has ever been simple though. My doctor, who I should say, was there with me practically every day I was in the hospital, was amazing. He came in to talk to me about what the surgeons had said and just as he was leaving, I guess I must have had a look on my face, he turned around and came back.

I hadn't cried at all, for any of what was going on in my life in the past month. That night, I just let go and cried to him. He sat next to me, put his arm around me and just listened. I could not believe that I had fallen apart in front of this man, who had been there through every step of the way, but barely knew me outside of being a patient, and simply acted as a friend. He did that throughout my stay, but this time, I can honestly say, he was more than just a doctor to me. These are the kinds of doctors everyone needs, and I was lucky enough to have Dr. Ginns as mine.

For someone who had only really known me for that month, he said something to me that I'll never forget,"You've been this cheerleader of your own life and strong for everyone else." I think he was surprised that I didn't fall apart with everything that was going on. Looking back on it now, I kind of am too. I might have been miserable, but I tried to put on a smile for those who watched me suffer. Though life was hell, I didn't want anyone to think I couldn't make it through this.

The last surgery was probably the most painful experience I've ever had to endure physically. The window procedure was a simple surgery; you deflate the left lung, cut two holes into the sac of the heart to allow the heart to be decompressed from the fluid, and insert a tube that wraps around the lung to an the area of drainage. The tube however, is very painful because any foreign object in the body, the body rejects. When I was woken up from the surgery, one of the assistant surgeons came in to check up on me.

He asked, "How are you feeling?"
I said, "Surprisingly pretty good"

Well.. he walked over to my drainage box that is connected to my tube. The tube, unbeknownst to me, had a blood clot in it. The fluid was being backed up. Well. IT WAS A TWIST AND RUN!

He literally walked over to my tube, saw the clot, didn't say a word to me, and twisted it to allow the clot to go down. I was in extreme pain. I don't think I've ever felt that kind of pain in my life. I was crying and screaming, and the doctor said it will go away, while he walks away. My sister, who is crying because I'm crying, runs out to get the nurse. They inject with some nice pain killers/knock me out cold.

Tube that was inside of me from window procedure

The following days, I was in pain and nauseous, more so than I had been during the previous weeks. Man. That was the hardest thing I had to endure. Open heart surgery seemed like cake compared to that.

Thankfully, after a few days I was released and had the tube removed. A whole month in the hospital between the two surgeries and I was home! No more finger sticks, blood tests, iv's, xrays, ultrasounds, echos, a burning hot ct, and finally over my nausea to eat.  

Its now been about two and half months from my first surgery, and a month and half since I've finally been home. I'm still recovering and working on bringing my strength back, but the pain isn't nearly as bad as it once was. The twenty pound weight that I thought I was wearing when I got out of the first surgery, is no longer there. I can turn on my side and sleep comfortably for the most part now (the scars of the second surgery make it uncomfortable at times). I can walk with ease and have even started walking on the treadmill again. I can't lift over ten pounds, but I'm okay with that (not exactly trying to become a body builder any time soon).

I've come back to all the people who love and care about me, and that is perhaps, the biggest thing that has given me hope over the last few months. People who didn't have to stick around, did. I can't say it enough, I really have been blessed with the friends and family I have in my life.

My older sister Jenn, who I wouldn't have been able to live through what I did without her.

Bio Buddy Bestie Annie :) Love this girl

Family who stick together

Jeanine and me - A true friend through it all

Here's a drink, or two.. or three ;) A drink to Life and Living it to the Fullest. Never taking for granted the people you love and care about. A drink to the people who stuck with me, no matter how hard life got and to the everlasting memories I have of those who made my days a little easier. 

Here's to moving forward and ending this one unforgettable chapter in my life.

To the new adventures I'm about to embark on!

No matter the disease, don't ever let it bring you down.

I'm living my life with a healing & continually growing enlarged heart.

Dear Life,

Bring. It. On!

<3 

Jess