I was born with Mitral valve regurgitation. Being a premature baby in the 70s was so different than what it is today. However, that issue was repaired in 1988 and it really hasn't changed much since (yay). However, as a result, quite often a new issue will develop in the same area in time. In 2001, I was told I had developed a new "hurdle" called Sub-aortic stenosic or sub-aortic membrane. It didn't really bother me too much until 2007. Suddenly things changed and progressed quickly. I wasn't able to walk very far or lift things without being exhausted. My "little" problem had dramatically become a big issue in the span of weeks. After being scheduled and a week from surgery in November 2007, it was postponed until February 2008. If you know me, you know that I'm a high energy person. I like to be busy and active! This issue was literally sucking away all of my spunk and energy. Afterward, I was finally on the way to recovery in April 2008 and told the problem could re-appear anywhere from 5-10 years later. Little did I suspect that time would pass so quickly.
I lived life relatively symptom free since 2008 including running an average of 15-30 miles a week. Not a big deal unless you're a cardiology lifer. ;-) In October of 2013, I was working out regularly, including some time with a trainer. Following sessions I would be just exhausted. When I say exhausted, I mean I couldn't really formulate a sentence afterward or get into my car. I just assumed it was due to the rigorous workouts, nothing more. Then when I was at work and doing what I normally do, I nearly passed out. I couldn't communicate, felt very nauseated and was scared. Daryl ended up taking me to the ER for the first time that day. Then started the tests and Doctor visits. Between October 2013 and today, I've spent 15 days in the hospital (3 stays), had at least 12 ER visits, plus too many doctor appointments and tests to count! My sub-aortic membrane had decided to reappear after exactly 5 years. I didn't count on it happening so soon again. It was a shock.
After the grueling, 8 month process of finding a surgeon who dealt with congenital heart problems in an adult (a big black hole in the modern medical field), we found one who agreed. His name is Dr. Borkon. He informed us what he wanted to do, which was much more than expected. He wants this to be my last surgery for a very long time. Obviously, we were COMPLETELY on board with that idea. Instead of just removing the offending membrane, he wants to also replace my repaired mitral valve with a mechanical one. The third item would be to remove my old wires that are causing some serious chest pain. The first available day for a single, complicated case was August 19th. We booked it. Finally, the end of the tunnel was near.
Then, on July 20th I had the worst pain ever and ended up in the ER AGAIN! This time it was kidney stones! We could NOT believe that I was having a DIFFERENT issue to deal with!? Surgery to remove them was scheduled for July 22nd. We were assured it would not affect my scheduled open heart date. In recovery I was informed that they could NOT get to the kidney stone and inserted a stint in my ureter. This leads to pain every time I "go". I can handle the pain...even though it is certainly annoying.
Today I had my follow up with the Urologist. Little did I know that today everything would change. He asked that I check with the heart surgeon to see when I could get the stint removed; AFTER heart surgery of course. Once I returned home I called my surgeon office like a good patient. The alarm in the PA's voice was not a good sign. She requested the surgical report be sent. She warned me that Dr. Borkon may want to postpone. I prayed and hoped that would not be the case. Once she received the report from urology, she called me back. Dr. Borkon was on vacation, but had called to discuss our next steps. He wasn't willing to risk any complications with my heart surgery. Since the stint placement was considered invase, he wanted 6 weeks between. So, now we will be scheduled for heart surgery the week of Labor Day.
At this present moment I am overwhelmed with frustration and emotion. I can't even explain. If you have the ability to support us, we would appreciate any gift. This has been a very difficult year and getting medical bills that are "denied coverage" from insurance has eaten up all we have saved. Thank you for sharing in our story. Thank you for taking the time to empathize and understand the life of a soul constrained by chronic health issues. I do not let it define me. It only makes me stronger.
All My Love,
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