The Fix...Hopefully
OK, fair warning that this one might get long and a bit dry, but should be the last of the educational series. Dive in at your own risk.
The ten years since finding out my heart is jacked has been both a blessing and great source of anxiety. Knowing it needs to be fixed, but not knowing when, is tough for someone like me. I've never really been "afraid" of surgery, but the limbo is brutal. If it's broke, then lets fix it!
I now understand why that wasn't a wise option. I just went ten years without needing invasive intervention. Guess how long most bio-prosthetic heart valves last before you need another surgery? Yep...about ten years if you're lucky in your 30's. Overall, I've come to realize the wait has provided very valuable perspective and allowed me to work through the process and do what I do best...research!
I was first referred to a local surgeon by my cardiologist a little over a year ago. The purpose of the consultation was just to start the planning process. I thought I was on the three year plan. Needless to say, I was caught by surprise when the surgeon said it was time for surgery and was ready to put me on the schedule to operate in two weeks. What?! This was shocking, but even more shocking was when he told me the only responsible option would be a mechanical heart valve. Actually, his exact words were, "it would be criminal to put anything other than a mechanical valve in you". It makes total sense. A mechanical valve can last a lifetime verses a bio-prosthetic (cow/pig) valve that i'd be lucky to get 10 out of. There's just one gigantic caveat...it requires lifelong low dose anti-coagulation (blood thinner) therapy.
I'm cool with Coumadin, but NFPA 1582 isn't so cool with it. NFPA documents provide guidance for everything we do in the fire service. These documents are so very important, but a one size fits all approach is not feasible, which is why most fire departments utilize these as guides and not gospel.
Unfortunately, the occupational doctors that conduct our annual physicals tend to operate in the black and white with a CYA mentality. I've never been told specifically I would lose my job if taking Coumadin, but just can't take a chance and frankly don't want to fight that fight every year I go in for my work physical. Not to mention, I don't want to put my fire department in that difficult position of going against the occupational physician's recommendation for my benefit even if this small component of an overall very important standard is total outdated bullshit and has very little merit. Ok...that's it for that soapbox.
I'll probably talk more about the importance of my job in future posts, but that has really played heavily in to my research and this decision to seek out a solution beyond the capabilities of the local surgeons. This research is how I discovered that an aortic valve repair may be an option. Valve repair is highly technical compared to a replacement and only done by a handful of surgeons across the country. It's done regularly, and well, by a small number of those. The valve must meet specific criteria for a surgeon to take on the case.
I met with a great surgeon in the Denver area who does these repairs. He thought my valve might be a candidate. He offered a 50% chance of successful repair. If the repair didn't work, my backup option would be a cow tissue valve, which equals re-operation in 8-10 years. He would do this via full sternotomy, which means top to bottom sternum incision and full chest crack-age. They have around a 2% fatality rate, which is average. I saw this as positive news. Oh...and he wanted to put me on the schedule in two weeks, too.
I decided I needed some validation so I gathered all my medical records and sent them to the best. The Cleveland Clinic has been the top cardiac hospital in the country for 23 years. Specifically, I requested Dr. Lars Svensson review my case. He does a lot of these repairs. I heard back within a week. Dr Svensson offered a 70% chance of successful repair, would do a minimally invasive procedure which is less than half the rib-cage, and their mortality rate is about 0.6% for these procedures.
This is why we've decided to go to Cleveland for our family summer vacation! There's still a possibility I will need to have a cow valve put in, but I need to play the odds. This repair also doesn't offer a lifelong fix, but i'm hopeful that if successful it could last longer than the bio-prosthetic valve and there is always benefit to keeping your own parts.
So sorry about the length of this one. I already broke my original promise of keeping these brief. Future posts will be far less educational and really start to chronicle the experience and provide more present tense updates. They will also have more pictures!
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