May 9
Fiorengina
Fiorengina , Posted on SUPPORT NETWORK Blog

Gina's heart valve journey

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I was diagnosed in 2012 with Mitral Valve Prolapse- with mild regurgitation. The Dr. said it was likely to be 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 "a tire 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 he awkwardly added, "but I think you would do very well... and at least you aren't in heart failure." Huh? 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 "no" because surgery was not imminent. Next I called American Heart Association and asked for info, and thankfully found a helpful testimonial on their website from a person who had Mitral Valve surgery. Honestly, I was afraid to seek more answers to my questions but really wanted to find more testimonials and success stories.


Next I stumbled upon a myriad of heart valve video interviews on YouTube by fellow patient, Adam Pick that helped to educate me a little more.  It was then that I learned that many 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 regurgitation in my heart had progressed too much during the 5 year waiting period~ leaving me with only a replacement option.) Even though this ended up not being true, this new belief brought much sadness and grief, severe anxiety and then depression. I felt traumatized for weeks.

As time passed, one day I woke up and suddenly 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 my immediate Insurance 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 further 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. But she warned me, "no promises though... as mitral valves are tricky". Soon after, I met with the recommended surgeon. The videos I had been watching online strongly suggested asking for actual published outcomes, but when I requested this information from the surgeon, these statistics were 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 my heart valve, 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 the research, 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, and also on the Trusted Surgeon locator site at www.heartvalvesurgery.com. 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. We went ahead and paid out-of-pocket for a consultation with Dr. Castro, and he took over an hour with me, my husband (and little dog 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 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 by all the major insurance companies, 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 "small incision" lower sternotomy.   I decided not to wait and went ahead and scheduled the surgery for early March. Soon after, a fellow heart patient 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 fears, 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.  As I write this, it has been almost nine weeks since my surgery, and I am doing well.

Even though this experience was something I never anticipated in my life, I am ecstatic to report that the process of being able to prepare for this life event really helped to shape my perspective and to expect a good outcome.  For those of you who may be facing surgery one day, I want to share a message of hope and encouragement. It amazes me how resilient the body is, and how high the success rates are with surgeons who specialize in Mitral Valve Repair.  As my husband was driving me home from the hospital, I kept thinking that if I didn't know I had just heart valve surgery, I would have guessed that the discomfort was actually from an achy flu virus.  During my stay at the hospital, pain control was well-managed by the cardiac team, and after about a week or so I was only taking Tylenol to manage the discomfort.

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3 Comments
  • AmbassadorC
    AmbassadorC,

    Thank you for sharing your story❣️ I, like you, am a mitral valve repair patient. By sharing your journey, you help others see that life does not have to be limited by valve disease.  One of the many things I learned during my journey is that you have to be your own Advocate. Great to heart that your surgery went well and your recovery is too. Keep on fighting with heart❣️

  • Fiorengina
    Fiorengina,

    Hi Yarn007,

    The guided imagery/meditation CD is, "Prepare for Surgery, Heal Faster" by Peggy Huddleston.  It came highly recommended to me by another heart valve patient a few weeks before my surgery.  The CD/DVD has a wonderful companion book (by the same title) that takes you through her simple 5 step process.  I found it to be the tool that helped me the most, in fact- I used it after surgery to continue my healing, and use it now for general relaxation and to cope with life stressors.  On her website there are video testimonials of how people use her process at www.healfaster.com. I can't say enough good things about her process. It shifted me completely out of fear and into a calm, healing state that really aided me during my hospital recovery!

  • yarn007
    yarn007,

    Wow, I am just amazed by your story.   Think it is so wonderful how you advocated for the best treatment for you and your situation.   What an amazing journey.   What courage to face all those obstacles.  By any chance was the meditation cd you used done by Belleruth Naparstek?   I used one of her CDs when recovering from my heart attack and it was so darn helpful.

    Just thrilled to hear you are doing well.  Thank you so much for sharing your journey with us.   

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