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My name is Renae; I am 35 years old and a wife & mother of 2 small children. My mother was told, when I was a baby, that I had MVP. At age 4, I had Scarlet Fever, which progressed to Rheumatic Fever. Luckily for me, I had a wonderful Pediatrician who treated the Rheumatic Fever before all symptoms were present, saving my heart from any damage. Up until 10 years ago, I never gave much thought to the MVP, other than what the drs had always told me, "Live your life, you are fine. Just make sure you are medicated before any dental work." So that's what I did, which brings me to where I am now
18 February 2009
Seven months ago, I chose to change cardiologists after being incredibly unsatisfied with the office staff for the group I had been going to for about 6+ years. Again, up until this point, still thought I had MVP and had been told "Aortic Stenosis, something . . . " Stress tests were all fine, even had 2 successful pregnancies with no problems whatsoever. I changed doctors/practices and see someone new - recommended by my daughter's Pediatric Cardiology Group (she was born with a small VSD, expected to go away by age 3-4; as of her last visit, I understand now that she has a BAV). I made an appointment, saw the new doctor, he runs all of his tests - EKG, Echo, etc, and tells me that I in fact, do not have MVP, but that I have Aortic Stenosis (which I already had heard) and that it is more than moderate in severity. Well, that's new. No MVP? Now after 35 years, I don't have MVP?!!! What?! Oh, and he proceeds to tell me that I am going to need surgery - not now, but at some point - and how truly sorry he was to have to tell me this. I felt like I was being told that I had cancer. It was devastating. Still, no mention of a dilated Aorta.
So, I chose to seek a second opinion at that point. I made an appointment at the Mayo Clinic, Jacksonville, Fl - close to where we live. I saw a cardiologist, he ran his tests - EKG, Echo, Blood work, etc. He confirms that I do not have MVP, that I do have Aortic Stenosis - but in his opinion and that of another colleague (also a cardiologist at Mayo) - it is only Mild to Moderate in severity. He proceeds to tell me that the ascending Aorta above the valve is also dilated. The word "aneurysm" never left his lips, probably because it's a frightening word. He ordered an MRI of the chest to get the closest to exact measurement of the aneurysm and it measured 4.5 cm (or .45 mm?). This threw me for a loop, to say the least. I exhibit no symptoms of any kind and stay as active as I can. I work part-time; take care of the kids - run them everywhere, and exercise as often as I can. And being a woman, I can shop with the best of them. Never have to sit down to take a breath. I had another MRI six months later, and there was no change. Whew. I go back in another 6 months (August 2009) for another MRI and those results will determine if I go back again in 6 months, or annually from that point.
The doctor at Mayo said that now is not the time for surgery. Okay, that's good news, for now anyway. So, I went home, had to digest all of this for the next few weeks, and eventually became a total basket-case. I called my cardiologist back up and asked if he would let me see a surgeon and he agreed on this, only to ease my racing mind.
The time came for my appointment to see a recommended Cardiothoracic Surgeon, and he concurred with the cardiologist that now is not the time for surgery as, "the risks of surgery far outweigh the risks of waiting right now." What's wonderful about Mayo is that any doctor at Mayo can pull up your chart and see anything that Mayo has on you - notes, tests, x-rays, MRIs, etc. It's all shared - and doctors in the Rochester location of Mayo have also seen my chart - hence, this is how I find out that I have a Unicuspid Aortic Valve rather than BAV. When the time comes for surgery, the valve & the aneurysm will be replaced.
Emotionally, I am a mess - the waiting, and waiting and waiting can get the best of me, but I still keep moving because I have to - I have 2 children, and after-all, moms are superhuman. We have to be. More so, I am a Christian and I accepted Christ as My Lord and Savior at the age of 7. He is my comfort when I feel myself breaking down emotionally. I don't know how anyone can get through this life without Him. I am blessed with a few friends who pray for me and one was even so sweet to write her prayer out for me in an email, so that I could read her words to the Lord anytime I want to read it. Unless you or someone you love dearly are in a similar situation such as the one I am in, you cannot begin to imagine what prayer really means. It's priceless and irreplaceable. I believe in the power of prayer, and the midst of my midnight, I know He is already there.
Since there is no surgery for now - and I'm not so sure I would turn it down if it were a choice (but no one is making it an option right now) just to stop the waiting game - I am using this time to research. Who is the best doctor for this surgery in Jacksonville, FL? How do I know? How do I research their success rate at this procedure? I have written my "story" because I need encouragement & prayer - from anyone and all who will whisper my name to the Lord when they pray. He knows my situation and my need.
Anything in the way of information, experience, personal story and encouragement would be so appreciated. Thank you for reading.
© Copyright 2009 Renae Focht
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