Just came across your journal. I see some really special people have already written to you. There are so many of us out here waiting for surgery or have already had it, so we all know how you feel and know what a scary time it is for you. Hope you have read Adam's book. He has so much good info and the section on finding a surgeon will be helpful for you. I live in SW FL and traveled to the the Cleveland Clinic (#1 heart hospital for 15 years) and do not regret having done so. Now that you know what your situation is, getting all the rest done will work out and pretty soon you will be writing to others to encourage them as I am. By the way, my surgery was March 18th and have a new mitral valve (tissue) and a repaired tricuspid. Keep in touch.
From reading your story and journal entries I see that you've gotten hit with a lot of medical concerns all at once. Believe me, I know how shocking, scary and overwhelming that can be, as you try to sort it all out and deal with it.
First, I should let you know that I had a mitral valve replacement 3 months ago, and I'm doing just fine now.
A year ago I had no clue that my mitral valve prolapse had become severe (4+)and my atrium had become enlarged as a result of the regurgitation. I was starting to feel some shortness of breath when I went from a lying down position to sitting up. My energy and endurance was starting to go downhill, but I chalked that up to being 59 yrs. old and not exercising enough. I finally had an episode of chest pain that landed me in the ER in Sept. 2009. They admitted me to the hospital and did an echocardiogram and cardiac catheterization and some other tests. The verdict was that I needed open heart surgery to repair my extremely leaky mitral valve and that I should have it operated on pretty soon (within the next 12 months).
So I had the surgery in January of this year and am feeling really good now.
Just wanted to let you know that I really feel for you as you face all of this stuff. Having gone through some of what you're up against, my words of advice would be: Don't ever hesitate to ask questions of the medical people you're dealing with, to get the answers you need. Also, find out who is the best cardiovascular/thoracic surgeon in your area, get an appointment and take it from there.
I wish you the very best, Jason, as you start this journey. The HVJ site is a terrific way to get support and valuable information as you go through this.
Anymore good news or is that about it for today? There is a silver lining here and that's the fact the doctors are finding out what they're up against quickly. You have no choice but to put your faith in their ability to fix what's wrong before anything happens so thank goodness you have been given testing which has now put up the alerts.
An older friend of ours had this same thing and he went through surgery easily. You read if it erupts 50% die, well the other 50 live and did that site say whether this particular study was done on people who knew in advance or were these people it just happened to and no one knew? You have to keep positive thoughts going as hard as that may sound. If you can't keep positive, keep busy - keep your mind occupied as much as humanly possible so you don't have too much time to think. Stay out of the dark places if you can.
You have an appointment next week and the doctors are on it. Hang in there and take one step at a time.
I too had the same problem. I was dx'd in my teens with MVP but never had any problems with it. Then after two kids and a stressfull Paramedic job, within one year it went from mild to mod to severe. I had shortness of breath, chest pain, palpitations and fatigue. Met with my cardiologist, did all the testing, yes I needed a repair. I saw the surgeon and had my Minimally Invasive repair done April 8th, yes last Thursday! I was home two days early and doing great! Try to focus on the good things that will come of this! I already feel a difference. Know that the Lord will be there with you and so will all of us.
Welcome to HVJ central where you'll meet lots of people who are now or have gone through the same thing as you are. I had my mitral valve repaired in Oct/09. Read as many journals as you can and hopefully you'll find lots of helpful information. It doesn't matter what type of valve is being repaired because the symptoms and recovery process just seems to be the same so don't limit yourself to just mitral valve patients. Good luck with your appointment tomorrow.