My name is Ben from Minneapolis, MN. I never in my wildest dreams thought I would be writing about me and pending OHS, but here we are.
My journey with MR began in mid 1987. I had a routine physical and the doctor heard a "click" while listening to my heart. He immediately scheduled me for an Echocardiogram and I was diagnosed with Mitral Valve Prolapse. I was told this tends to be a "benign" condition and that it had to be watched. At that time it was proper protocol to have pre-medication before any dental procedure, which I did religiously until the recommendations changed and no longer required this. I pretty much forgot about this condition for several years. My next encounter occurred in early 2006 where my then (and current) internist suggested that I have another Echo. I did not review the results at that time and I was told I still had MVP with some blood leakage. He still thought it was fairly benign and I wasn't having symptoms and to check on it in a few years. My next Echo was 2 years later. I don't recall any real discussions on the results and pretty much forgot about it until my last physical 2 weeks ago.
I should also mention that shortly after my last Echo in 2008, I started doing Kettlebells, and I've been working with them very rigorously 2-3 times per week for the last 6 years. I noticed that I don't have any issues during my workouts even now. In fact, I'm in better shape than I was in College in the 70s. I've lost inches around my waste, and gained tone and muscle and look much younger than my actual age of 58.
After my last physical, my current internist noticed that the murmur has gotten a bit more noticeable andrecommended another echo. I had that done last week.
I learned from that Echo that I have "severe" M/R with a Regurgitant Fraction of 64%. (I didn't know what this was until I started doing some on line research). In fact, I had NEVER seen the actual results of my last 2 echos. I had assumed it was still fairly mild as I wasn't having any real symptoms other than mildly elevated BP. After my last echo, I signed up to see all of my Medical Records on line (They call this "My Chart" where I was able to review the actual results. I then posted them on the Med-Help.org site. I've been getting some "interesting" comments from that community. I'm getting several "concerned comments" from across the Atlantic telling me that with my numbers, I should have scheduled surgery after my echos in 08. I'm not sure I agree with that, but time will tell.
My latest echo shows significant Left Atrial enlargement, and EF of 68%, (My last echo showed an EF of 55%) and a Regurtitant Fraction of 64% which was not calculated in 2008. It showed moderate to severe enlargement back in 2008 as well. It appeared that my leakage has gotten worse. What really concerned me is that these issues were never really discussed by my doctor! Had I known what I was dealing with, I would have been getting yearly echos and follow up.
After my last echo, my current doc recommended a consult with the Heart Surgeon affiliated with the main hospital that is part of my network. He is also highly regarded, but does about 25 of these per year. He felt that I would need the surgery in a year or less depending on my symptoms. He would go for a repair, but can't guarantee that will be possible. He did work on a friend of mine that had far worse symptoms including a RF of 80% and couldn't walk 10' without taking a break. He had heart damage from childhood rheumatic fever and this guy was able to repair his Mitral valve. I'm optimistic that I'll have an even better outcome as I'm very healthy today.
So here's where I am today.
I know that I have a potentially serious issue. I do not yet have a date scheduled for surgery , but I wanted to get this posted and a date is required. I'll update that as I get more information.
I just met with another Cardiologist yesterday who looked at the results and came to the conclusion that there has been no significant changes since 2008, despite the serious enlargement of the left Atrium. According to him, (and I do trust him as he's my dad's Cardiologist as well) my heart is functioning normally despite the M/R and the Atrial enlargement. My Ventricles show up as being normal (with slight wall thickening but normal size and function), as do my other valves and my aorta. He agreed with me that the communication from my current doctor may not have been optimal, but I have not suffered permanent harm.
I'm now getting evaluated for a Mitral Valve repair. I'm currently wearing a 24 hour heart monitor that I'll be wearing for the next 2 weeks to catch any heart arrhythmias or A/F. I reported to my new Cardiologist some recent heart palpitations and he wanted to make sure nothing else was happening. He also wants me to schedule a TEE, which I am in the process of doing as I write this. I'm also getting a consult with the Minneapolis Heart Foundation, a highly regarded local Heart and Vascular center with a national reputation. I meet with them in early April. My current Cardiologist is affiliated with United Hospital in St Paul, and they have a surgeon that is highly touted on this site, so I'll probably be meeting with him soon as well. (Oye! lots happening). I'm fortunate that I have a decent job with good insurance. It looks like much of this procedure will be covered as I understand either repair or replacement is horrendously expensive otherwise.
I am also building my support network, and both my significant other (I'm not married) and my immediate family has pledged their support. (Thank god for that!)
I've been reading some of the stories of others on this site going through this. They are both inspiring and comforting at the same time. I know I'll get through this, but it's still a challenge to keep it together while holding down a challenging stressful job and trying to schedule the next steps. I would welcome anyone's feedback and support. I'll gladly do the same. Assuming all goes well, I'll gladly be an on line support and networking resource for anyone else going through this.
Thanks for reading my story. I look forward to meeting others on this site in the same boat.
Epilogue: Over 3 years have gone by since I started my journey and wrote this profile and what a long strange trip it’s been. Even with the “minor setback" of a stroke during my initial recovery, I’m happy to report that I’m pretty much good as new. Now if I can make it unscathed during the age of Covid so I can get back to my old Kettlbell routine, I will truly be good as new. To all those just starting on this journey or in the middle of it, rest assured that you have a very high probability of pulling through with flying colors. Keep the faith