A's Heart Valve Journal

Joined July 14, 2017

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My Story

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    I am from: Saint Albans, WV
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    My surgery date is: September 13, 2017
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    I was diagnosed with: Mitral Regurgitation
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    My surgery was: Mitral Valve Repair
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    My surgeon is: Dr. Stephanie Mick
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    My hospital is: Cleveland Clinic

In my own words:

I am 64yrs. of age, a wife, mother, grandmother, chef, pianist, and practiced nursing for 40 yrs. i also love dancing! I was diagnosed with a MVP when I was 23yrs.old in 1976 when I was pregnant with my son. I was having tachycardia. While working in the hospital I asked a cardiologist to listen to my heart and he said "oh yes, you have a click...you have a MVP". He said to see him after the delivery. I was put on Nadolol, a beta-blocker and took this for years. In the meantime, I also had him listen to my mother and grandmother. He said that they both had this as well. (They both lived to almost 93yrs!). He said it is common and not to worry about it. In my late 30's, I was dragging. Low BP runs in my family and the Nadolol certainly contributed to this. So my GP at the time weaned me off of it. In many ways I felt better, but at the time I was teaching childbirth classes and noticed being short of breath when I was talking. I also had times when I felt like I couldn't get a complete breath. But I ignored this. Then I developed pneumonia and was hospitalized. 10 years later, I was diagnosed with MAC , a non-infectious tuberculosis and bronchiectasis . I took lots of antibiotics and continued with breathing difficulties and coughing but mostly when I laid down at night.
I have always been a believer in preventive medicine and taking care of myself, eating healthily, etc. But I've also seen myself as being healthy and active and not let the illnesses that I have had define who I am. Maybe it is because as a child my mother ignored my complaints. (She worked 3p-9p and I was more a caregiver to her-long story). I learned to adapt and survive.
So the chest pain that I had as a child when running, fainting frequently, and other ailments were tossed aside as my imagination.
So here I am now. I'm on my 4th PCP in 40yrs. My cardiologist retired and the PCPs said I didn't need to see one. I had never had an echocardiogram. I asked each one to do one. All of them said it wasn't necessary. In the last 2 yrs. my heart has "fluttered' so much, but I was told that it was probably my thyroid being out of whack or the plugs that I get in my lungs from my bronchiectasis that was causing it. After 3 visits (months) of insisting w/ my PCP to get me in w/ a cardiologist (thinking that I might need one in 20 more years and not wanting to get assigned to one in the ER), I went for an ECHOcardiogram on a Friday.(BTW, I still haven't "seen" a cardiologist). I wasn't expecting to hear anything. On Monday I rc'd. a call from the office saying that they needed to do a TEE on me ASAP. I said "really?, why?". She said that I had severe mitral regurgitation. So that Wednesday the cardiologist did the TEE without even coming to my bedside to say who he was. He was running late and in a big hurry. He didn't see me afterwards, but told my daughter that I needed to go to Cleveland Clinic for mitral valve repair for severe mitral valve regurgitation. This was on July 10, 2017, my granddaughter's 4th birthday.
I ordered and read Adam Pick's book which was so helpful. I also called, emailed, and chatted with the Cleveland Clinic nurses. I have to admit I have been very anxious. There is a process. The cardiologist here sends the referral to the Referring Physicians Dept. I rc'd a call from them on 8/1. The cardiology office here in WV referred me to see a doctor that isn't even in their system. So in the meantime, I had researched all of the cardiologists and cardio-thoracic surgeons that are listed on the CC website. I had them narrowed down to 4 going by their customer satisfaction, experience, etc. I then was able to see the publications that the physician had written. I read their published articles. At this point, I decided on Dr. Griffin. I am now confident to proceed although am still nervous I admit.
Long story "not" short will continue. But I am convinced that the "best is yet to come". I have to imagine that I will do a better job of taking care of myself and in the long run have more energy and feel better. My appt. w/ Dr. Griffin is Thursday, Sept.5, 2017. It is early in the morning. Those of you who know me, know that this isn't my favorite time of day. LOL. But I will do it!
I appreciate any good thoughts and prayers. I'm keeping this journal so I can remember my thoughts and to share with you, my friends and family. I hope that you don't have to face something like this, but I trust in God's timing. Perhaps if the severity of my valve had been discovered sooner, they wouldn't have made the advances that they have made in recent years and surgery would have been more difficult.
I will keep you all posted and hopefully the posts won't be as lengthy! LOL
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