Lisette's Journal

My angiogram was up next, and took place January 22, 2018. My cardiologist was so perplexed by the results, which did not appear to show the severe leaking the TEE showed, that before I was even out of the procedure room he was on the phone with Dr. Gary Grosner, who would eventually become my surgeon and save my life. I saw him for a consult on January 26, 2018, which led to yet another TEE to be sure of the imaging results. We went back in February 6, 2018 for that test. All the waiting between tests and results was SO HARD. And that tube down the throat....yuck. They had to hold my hands down several times and give extra sedation meds because I kept trying to pull it out! Unfortunately, the results were the same. Severe mitral regurgitation, at 60% backflow. Now the big decision: Surgery, or wait? Unfortunately, when your potential surgeon goes on vacation, you have to wait 2.5 WEEKS to discuss and decide. It felt like torture. Too much time to research, to find out I couldn't really do any physical activity without risk of my heart rate getting out of control (not even a little Yoga!!!), and try to learn how to rest more. God really taught me about patience, and learning to wait well, which I did better some days than others. This song helped me keep myself in check. I would listen to it when I got too anxious, on the way to Doctors appointments, etc.  https://youtu.be/qzWHWjrJDx0

I'm back over here, life (thankfully) seems like a whirlwind so much of the time, but that is good, because while I haven't felt I had the time to write on here, that means I've been out LIVING!!! Back to my story - January 10, 2018 - TEE day. We decide to take my two younger kids (8 and 10 at the time) with us, as they were homeschooled at the time, and they are very accustomed to waiting politely while I go to appointments, etc. Any other "young" patients get a million comments about being "too young to need these tests"? Yeah, me too. Let's just get this over with. Well... Right after my test, the what must have been very young cardiologist walked right into the waiting room, and started peppering my husband with questions: "Does she get dizzy? Has she had sudden weight loss? Tired?" They had discovered severe mitral regurgitation, as in 60% leakage. "She is going to need open heart surgery, she'll need her valve replaced, etc." RIGHT IN FRONT OF MY KIDS. Oye. My husband consoled them, and came right to me in recovery, asking if I had heard the news. I had, and honestly, I was ticked! I might have said, "This is stupid! I don't have time for this!" Not my most mature moment, but the shock...that feeling is hard to describe. I was just checking the box, taking care of this little thing we had to keep an eye on. I spent the rest of the evening resting and having a pity party. So many questions. So much to process. That's what I remember about that day most wondering so many things and having to wait to speak to more doctors for the next steps. It ended up being 12 days of waiting to get my next test, an angiogram to check the blood flow. It was a long 12 days of trying to rest, realizing that I was indeed having symptoms (I'm 6'2", so I never thought much of how often I would get dizzy when standing up too quickly...), thinking too much, and praying. Music really helped me maintain some peace, and I will share some of my favorites from each stage. This was one for that time, when the waiting is SO HARD. https://youtu.be/r49V9QcYheQ

Well friends, I have to admit, I have been a bit of a stalker on this site up til now. I was blindsided last year with the news that I had severe mitral regurgitation that would require open heart surgery to repair. This site has been a great source of comfort and encouragement to me as I pored over posts, gleaning as much information as I could to be prepared for the road ahead of me. My story actually starts in December of 2017. I was getting a follow up echo before going to follow up with my cardiologist, keeping an eye on a very minor septal aneurysm and bundle branch block. I called to schedule my appointment after the test, saying plainly to the nurse, "Are there any other tests I need before I come? I live an hour and a half away and I don't want to waste a trip." (I live in the sticks!) My doctor gets on the phone and says, "Well, your mitral valve looks a little leaky, why don't we get a TEE (TransEsophogeal Echo) just to get a closer look?" Hmmm. Ok... Mind you, I am very a very healthy, very active, former college basketball playing, exceptionally busy Mom of 3 awesome kids. I didn't even know I had a heart murmur till the Team Doctor found it during my physical my freshman year of college. Never needed any medication for it or anything. Never any restrictions. Ok, whatever, I think, let me check this box and get on with my life. So I schedule the test for late December, then reschedule it for January 10, 2018, because I was "too busy" to get up there during the holidays... This will have many "to be continueds", as I work on it in bits and pieces. But I need to write it as part of my healing process. Bear with me!