I was diagnosed in 2012 with Mitral Valve Prolapse- with mild regurgatation. The Dr. said it was likely a congenital birth defect. At the time, I was in my mid-40's, had always been active, and otherwise very healthy. He told me not to worry, that it is quite common and unlikely to worsen. Dr. then suggested I wait a few years, then have a second ECHO to see if it had progressed.
Within two years, I transitioned to a new insurance plan and my new Dr. recommended I wait a little longer to schedule the next Echo-- at the 5 year mark. I didn't want to wait that long, but followed her recommendation.
I requested the ECHO in summer 2017. Much to my surprise- the new report suggested that it had indeed progressed to "at least moderate in its severity". Yikes! The news was delivered casually by a newly-assigned, young cardiologist during my 15 minute appointment slot. He said my mitral valve was like "tires on a car wearing out, and that nothing could be done to stop it". He told me to wait until I felt symptoms, and then hold off until I couldn't stand it, and then the valve would be replaced through surgery." My bewildered and shocked reaction must have shown on my face. Then he added "Oh, and likely multiple surgeries as the valves only last from 5-15 years in younger folks. Then awkwardly added, "but I think you would do very well... and at least you aren't in heart failure." Heart failure? Healthy me?
After our visit was over, I suddenly found myself alone in the hallway feeling very lost and confused. I later emailed the Dr. and asked for a support group - but none was offered. Then I requested to talk personally with a surgeon within the system for second opinion, but was told not until surgery was "imminent". Next I called American Heart Association and asked for info, and thankfully found one testimonial from a person who had Mitral Valve surgery. I was afraid to find more answers to my questions but really wanted to find more testimonials and success stories.
I discovered through Adam's Pick's video interviews that valve surgeons these days "usually recommend repair over replacement". (Using my best thinking, I figured that the cardiologist I saw didn't offer repair as an option because the regurgatation had progressed too much during the 5 year waiting period~ leaving me with only a replacement option.) This new belief brought much sadness and grief, severe anxiety and then depression set in. I felt traumatized for weeks.
As time passed I thought to myself, "Maybe there is a surgeon somewhere in the world that could repair my valve". In that moment, I felt a strong internal sensation that YES maybe this could be, so I pulled myself together and pushed to go outside immediate network for some 2nd and 3rd opinions.
I went back to my Dr. and asked for permission via referral to visit another medical facility south of where I live. She granted my request, and about 6 weeks later I was able to meet with a new cardiologist who took the time to explain my heart valve condition. When I asked about the possibility for repair, she said there might be one surgeon in their group who could repair the valve. She warned me, "no promises though... mitral valves are tricky". Soon after, I met with the recommended surgeon. Again, (per Adam's videos), it recommended asking for published outcomes, but was told this information was not available.) I even asked the surgeon if it surprised him that "valve repair" was not even discussed as an option by the first cardiologist I saw a few months back, and he said "Yes". Still, I left the appointment not feeling his confidence in repair, so I decided to trust my intuition and kept researching on my own.
More research left me very surprised to read that valve replacement was still commonly recommended to patients by hospitals when the surgeon's skill level for valve repair was not reflected in successful outcomes. Hmmm... well I did not want to take this chance (unless it was the only option), so I continued to investigate.
When I scrolled through "You Tube" videos, I kept coming across a local heart valve specialist named Dr. Luis Castro. He was featured in a mitral valve video at Sequoia Hospital, presented a webinar for valve patient advocacy with Adam Pick, and also on his "Trusted Surgeon site". There I found over 100 great reviews on Dr. Castro's website, and rave reviews of Sequoia Hospital, in Redwood City. Later I discovered he is also the West Coast affiliate for Cleveland Clinic. Bingo. I paid out of pocket for a consultation with Dr. Castro, and he took over an hour with me, Mike (and Rocco too) to explain what he thought was possible from viewing my most recent Echo and patiently answered all of our questions.
Afterwards, we both felt much more confident that I was in very good hands.
After a bumpy ride learning about the different California health insurance plans, I took the leap of faith. Initially I was denied health coverage with the MVP, but thanks to Obamacare via "Covered California" I was able to get coverage and select this trusted surgeon through a new PPO plan.
Next, I had a TEE procedure and CT Scan (to get clearer images of whats going on). I was nervous but both procedures went smoothly. TEE suggested severe regurgitation, but only one protruding posterior leaflet in a location- thought to be easily repaired. Scored "0" on CT scan which made me a candidate for a minimally invasive, lower sternotomy.
I decided not to wait, and went ahead and scheduled the surgery for early March. Soon after, a member of my heart valve community suggested a book / meditation CD she had used to help her get ready for surgery, appropriately titled, "Prepare for Surgery, Heal Faster". Not only did this gem of a book calm my anxiety and fear, but it transformed my experience of the whole healing process.
I'm very happy to report that my valve repair surgery with Dr. Castro and his team at Sequoia Hospital went very well, and after a five day stay at the hospital, I returned home to continue the healing of my newly mended heart.