PRETTY LADY CHRONICLES: My 10-Year LVAD Celebration!
Looking back to where I’ve come from, I would’ve never imagined my LVAD journey would extend as long as it has. As each year passed, I reached a greater milestone. I would’ve never imagined ten years later my native heart would still be ticking along with the assistance of my LVAD.
LVAD implantation initially took a lot of discussions and persuasion, which I rejected repeatedly. There was so much fear and anxiety about the unknown. However, the very thing that frightened me has protected me time and time again.
Where it started
My heart failure diagnosis was one of shock and dismay. I developed pregnancy-related postpartum cardiomyopathy (PPCM) following the birth of my second son. My condition was managed and stable for nearly ten years before I first heard of an LVAD.
I remember being told it was a pump attached to my heart. I’m sure they explained that the LVAD would help provide blood flow as a healthy heart would. Initially, I was for it. I already had an implantable cardioverter-defibrillator (ICD), so what was another device that would help my heart?
One morning my physician at the time along with his assistant came into my room to have a more detailed discussion about the LVAD. I was puzzled when the P.A. (physician assistant) pulled out the pump, with cords attached. What’s that, I asked? This is when I was informed that the LVAD components weren’t 100% implantable.
They explained that the pump’s driveline would exit my abdomen and be connected to a controller and portable batteries. The batteries are rechargeable, and I was to receive a portable charging base. A home wall unit would also be provided. The wall unit plugs into an electrical outlet, and I would then connect my driveline for power to sustain life.
Fear and anxiety
Immediately, I was like 'no'. I mean, it was a hard NO! I’m 36, single, and I've never been married. Who’s going to want to date me with that? Nah, I’m not getting it! I was firm. I would go home with a PICC line that would push medication directly to my heart.
During my transplant evaluation, a mass in my lungs turned out to be stage one lung cancer which meant I couldn’t be listed for a heart transplant for five years. I was so scared of the unknown. From what I was told, LVAD in this form was a new technology that would sustain my life.
Ten years ago, I didn’t know of anyone with an LVAD. Especially anyone who looked like me. This was foreign. All I could think was you want me to walk around with a tube coming out of my side attached to all of these portable moving parts?
At 36, I was still a young single mother with two sons. Heart failure had already shifted our lives. Now the only option I’m being presented with was sure to bring it to a halt. I had no idea how wrong I was!
After six months with my PICC line, I called my cardiologist and said I’m ready. At that point, I knew I wouldn’t survive without it. Unbeknownst to any of us, my ejection fraction had dropped to 5%, well below the normal range of 55-65%.
I can remember the night before surgery like yesterday. One of my aunts asked what I wanted for dinner. I went all out, steak, declawed crab legs, loaded baked potato, and cheddar biscuits. Yes, Red Lobster did right by me! Lol.
Hey if I’m being transparent, for all I knew it could be my last meal. My eyebrows were done, I threw on a set of individual lashes, and my cousin came to give me some cornrows straight back. At least I looked the part!
Two days later I had not awakened and was still on a ventilator. I would feel someone rubbing my face extremely hard. I heard a towel being rung out, and bam it was over my right eye. Eyes closed, and ventilator still down my throat I reached out grabbing an arm and pulling it away from my face. I slowly opened my eyes and could see my mother and cousins. Everyone scrambled wondering what was wrong. I gestured for something to write on.
Of course, my cognitive skills weren't back so I nearly filled up the first page with chicken scratch. Then finally I got the words out. I handed the notebook to my family, and all I heard was REALLY? The notebook said, “False eyelashes, do not remove.”
I shared that story as a reminder to cherish the little things and moments. My family and I still laugh about that today. Oh, and I still have that notebook.
This journey has definitely thrown me some curveballs, but I wouldn’t trade it for anything. After all, I survived a heart rate of 392bpm thanks to God and my LVAD. I could go on forever sharing the multiple ways my LVAD has saved my life and helped me find part of my purpose.
Today I’ve learned there’s purpose in pain. I use mine as a patient advocate from spreading awareness of PPCM and Maternal Health to supporting others considering LVAD implantation while connecting with LVAD and heart patients worldwide.
Don’t get me wrong it’s not always easy, in fact, I have three leaky valves as I’m writing this. God has definitely brought me a mighty long way. To survive ten years with a mechanical pump attached to my heart - I can’t take that lightly and I don’t. I’m Beyond Blessed!
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