I am a marathon runner with a broken heart

[Rubirosa]

I am new to this community and I would love your advice. I am in my early 50s and I have severe aortic valve regurgitation. Since 2007, I have been an avid marathon runner. In 2006, faced with a personal tragedy, I decided to change my life and started running to lose weight. A year later I was hooked to running. I love it, it changed my life. From 2007 to 2011, I ran more than 10 half marathons and 5 full marathons. In 2011 I did my first Olympic triathlon with aspirations to do a full iron-man event. During my triathlon swimming training I realized that it was quite hard for me to stay with my head under water more that two strokes at a time. Also my running pace deteriorated despite an intense training. I attributed these changes to my age and I decided to modify my training, but it was getting harder and harder and I did not have an explanation. I completed the triathlon and then changed my training and returned to running. In 2012 I registered to participate in my last marathon, the 2013 Boston Marathon. I was very enthusiastic about this marathon. I have decided Boston was going to be my last marathon because I was to exhausted after my long runs and my running pace has gone from 7:15 minutes per mile to 10 minutes per mile. I got to Boston with my wife and my 13yo daughter. The race was amazing and then less than a mile from the finish, the unfortunate terror attack happened. I did not finished and for more than an hour I had one of the most anguished moments of my life. I cannot find my wife and daughter for an hour. My wife and 13 year old daughter were at the finish line during the explosions. They were fine physically, mentally it was a different situation. My daughter recovered quickly except for her fear to travel to big cities. I didn't feel that good worried about my daughter and her state of mind. A month after the marathon I was hospitalized for what I believe was stress related heart palpitations with a possible stroke. During this hospitalization, an echo revealed I had severe aortic valve regurgitation. I was happy I did not have a stroke, but nonetheless very affected by my newly diagnosed heart condition. Now I was able to explain my progressive physical changes, my inability to swim efficiently and improve my running. I don't know what caused aortic valve regurgitation. I remember a car accident during my college years with some minor chest trauma, but also a history of relentless high blood pressure. But at the end, here I am, I have aortic valve regurgitation and I will need aortic valve surgery at some point in my life. Last year, I decided to return to Boston, run again, one last time. My cardiologist was against the idea. The cardiovascular surgeon was more cynical and told me "you wont be able to finish your heart runs a marathon everyday'. but I told them I needed to return to Boston for one last run and more important than anything I needed to return with my daughter and wife to defeat fear and put closure to the bad experience we shared with our Nation in 2013. I did it, I finished the 2014 marathon. It was my hardest marathon ever. No new record for me but the most immense happiness to see my wife and daughter tell me how glad they were there with me. Now, I ask for your advice. I will need surgery and I have been contemplating the option of a Ross procedure. Anyone has experienced with this procedure? I would love to hear your stories. Just my close family knows about my condition and now although anonymously, I am sharing my story with all of you. I think many of you would have words of support for me and invaluable experiences to share. I would continue to run with moderation but when the times comes for surgery, I hope to make the best decision with the help of my family, my doctors and likely some of you. Thanks for listening to my story and I am sorry if in any way I have offended anyone for been so officious. Thanks, Rubirosa.

 

[ski girl]

Rubi you are clearly having symptoms and it's time to get the valve fixed! My advice to you is to ask your cardiologist and surgeon what they think is best, and get this operation done.

OHS is absolutely NOT a death sentence, but your current situation is - you are fit and you will be fine and recover and be better than ever. However, stop pushing your heart *right now* as you risk causing damage (left ventricular enlargement) that may be permanent. And if your cardiologist doesn't think it's time to have the surgery, find another one. 'Symptoms' are different from one person to another, and for people like you (and me!), decreases in our athletic ability are a surefire sign that IT'S TIME.

Good luck from down under!!

 

[McCbon]

It's an amazing story Rubi, and thank you for sharing it. I totally agree with ski girl. You are in Ohio? You have close access to some of the best heart experts in the world. Get thee to a clinic! Don't wait until you deteriorate, you are in maximal shape now and it will serve you very well for your recovery. They have fixed NBA athletes and put them back on the court. Good luck and be well. Mcbon

 

[Patsman07]

However, stop pushing your heart *right now* as you risk causing damage (left ventricular enlargement) that may be permanent. QUOTE]

My cardiologist told me I can continue pushing my heart despite the fact that my left ventricle is enlarged???

Rubirosa, I'm 30 years of age. Currently on a waiting list for my surgery and im also seriously considering the Ross. The idea of warfarin for life doesn't appeal to me, particularly because I play gaelic football,a reasonably rough sport. However you will find plenty of people on the forums here who have gone for a mechanical valve and do plenty of sports with no problems.

From the bit of research I've done there does seem to be a negative side to the ross, in that you are more likley to need a re-do than with a mechanical valve. However my surgeon told me that most of the data collected was done prior to new techniques, such as wrapping the ascending aorta etc. He told me that in his experience he has done around 100 Ross procedures and only had to re-do 1. It must be said that a lot of his patients were children/babies for whom the ross is the only viable option and the re-do rates are lower with children for some reason.

My surgeon also said that if a re-do was needed the risks of a re-op are not much higher than the original op.

 

[knotguilty]

I don't know anything about a Ross, but I was 56 when I had my AVR with a tissue valve. I wonder with regurgitation, you may be able to have your valve repaired. See your cardiologist and get all the tests done soon so they can offer you some advice. I can tell you how much better you will feel and be back to running pretty quickly after surgery. I was amazed and I think you will be too. At the end of my physical therapy, i was running on a treadmill. I am no marathon runner but enjoy a good jog. I will be running a 5K this Saturday for the fun of it and because I can. Good luck to you Rubirosa.

 

[RunMartin]

As has already been said - get the valve fixed and continue racing afterwards. I had a mechanical valve fitted four and a half years ago. I am a little slower now (and older) but I race every week - sometimes two or more a week. I am now more keen on running/racing than I was pre AVR. I have not heard much about the Ross procedure as most people here seem to go for either tissue or mechanical. I was not eligible for a Ross so I did not do much research into it. There was someone called Chilihead who had a Ross around 2004. He did visit again in 2012 saying everything was still going OK. It may be worth checking his posts as they are still here:-

http://www.valvereplacement.org/forums/search.php?searchid=1010287

All the best
Martin

 

[joanpieroni]

Don't wait! Get it fixed and you will be running in no time!!!! There are great places in Ohio, I am near Buffalo and we are so lucky to have the Gates Vascular Institute it is the best place around! I am 49 and had my Aortic Valve replaced 11 weeks ago, I am riding by bike every day and feel great. Soon I will be going back to work. I can't say I had any pain during it all. Be strong- Good luck

 

[mcsf]

I had a ross procedure when I was 23 (40 now) and it was a great success and lasted me 17 years. I had another avr in February and went mechanical. When talking with my surgeon prior to surgery she mentioned that the ross has really fallen out of favor and is not done as often as it was 15-20 years ago. Typically surgeons like to use the ross for younger patients. The new generation of tissue valves are great. With a ross you more than likely will need an additional surgery in the future. I have a mechanical valve now and I will continue to do all the activities I love and the list includes to many things doctors caution you about. Pick what fits you and your lifestyle best. If you do go with a ross be sure to use a surgeon that has a lot of experience with the procedure. Running with a tissue, mechanical or ross -- no problem. You'll be back at it sooner than you think. Go get it fixed!

I had my ross before it came common to wrap the ascending aorta.

 

[Rubirosa]

i am elated with all the comments and suggestions. Finding all of you is a blessing and hearing your stories gives me so much hope and relief. Thanks. I am at work right now and tonight I will have more time to talk. Thanks immensely, Rubi

 

[enkaynj]

Rubi,
If it ain't broke, don't fix it; By the same token, if it IS Broke, Hell Yeah, get it fixed !!!

 

[Nupur]

You're lucky to be diagnosed. Otherwise you'd be pushing yourself more and more and that could be dangerous. When I was diagnosed, I was trying to exercise harder and thought that my poor performance was due to being 40 and lethargic, it was a shock to hear something was seriously wrong with my heart! Now I exercise only in moderation, mostly brisk walking, and never take a risk ( I am missing out on some wonderful hikes that were my favorites after feeling very bad walking uphill). I understand that running is a big part of your life and hopefully you will not have to give that up at all.

Wishing you all the best.

 

[jhc1]

Rubirosa-that was quite a compelling story. I'll add my two cents….having gone through AVR one year ago, it's not as bad as its cracked up to be. No doubt it's serious stuff, but you will be running again within a couple of months. I'm now training for a two day, 180 mile bike ride, and there are others here that do triathlons and long distance running. If you are feeling symptoms, and your cardio recommends it, get it fixed. As far as the Ross, I had a tissue valve implanted-the surgeon put eyeballs on my valve, and decided repair was not an option. Give the surgeon your desires, but trust to their professional judgement and experience. Good luck
Joe

 

[Paul Schur]

I don't know much about this procedure, but i have a quick running story to share. My cousin ran the 56 mile Comrades marathon in South Africa two weeks ago with a man who had open heart surgery just two years ago. I don't know his exact procedure, but it was very serious. The day after the race when my cousin got the news of my having to have my bicuspid aortic valve replaced ASAP because of severe regurgitation, they contacted me from Durbin to recommend his running friend's surgeon to me at Hopkins, where I am going next week for surgery. Running will be a part of your future.

 

[Rubirosa]

All your comments bring me to tears. Good tears because it is good to hear from people that gives me so so much hope. i am presently followed up at the Cleveland Clinic cardiology. I am only symptomatic (shortness of breath and cough) when I run intensely so even when I feel like running faster I force myself to go slower. I don't swim anymore. I realize that when I swim I just feel panic. Any surgeon recommendation in the Cleveland Clinic?. I am thinking about traveling to New York Mount Sinai because I have been considering the Ross procedure. Thanks for all your comments. Rubi

 

[Heart2.0]

Oh do get a repair. Don't be like me and find out in oct 2013 that I have a -birth defect-(!!!! Say it isnt
Anxious middle age lady syndrome , doctor?? JERKS) and then have
It suddenly get so bad I got both a new tissue valve and an ascending stem repair on 12/13 !That is not a quick recovery.
But everyone says I will be swimming laps and skipping again. ( yes public skipping and that silly looking race walk are my favorites!) all the hugs to your family! You will do great! Go go go!

 

[TheGymGuy]

Hey Rubi,
Get your heart fixed and you will have many competitions ahead of you. I did and I am still competing my hear out - literally.

 

[johnp]

I am not back here too often. Just saw this. My opinion, you'll need to get the valve repaired, and there is a chance you could be doing damage to your heart if you continue to push this out. That was my experience with MV Repair. All that said, you can have a future in running post surgery. I had a MV Repair in 2010 and I'm back to triahlons. Yes, I am not as fast as I used to be, and like you was clocking miles in the 7s. I am now in the 10s unless I really push myself. But I can't sweat it. I was fast, but I was not in the 5'sor 6's so I wasn't going to win any events anyway. I also bike and swim. For some strange reason, my swimming actually got better. Somehow my breathing became more measured. I just did a 5K swim, I never had that in me in my best running years. So I guess sometimes you have to take what life throws at you. When you get the surgery, just give yourself time to recover. A brisk walk will be tough at first, but it gets better.

 

[river-wear]

I'm not sure if Rubirosa comes back here - last post was two months ago - but seeing that she (he?) is in Ohio, I would highly recommend going to the Cleveland Clinic whether a Ross Procedure or repair is chosen. (A replacement is less tricky.) They are in the best position to provide an excellent outcome in that area.

Do they really do Ross Procedures in people past their early 30s? I remember they stopped doing them altogether for awhile - at CCF anyway.

 

[Rubirosa]

I am alive

 

[Rubirosa]

i had my aortic valve repaired in the Cleveland Clinic. The pain was nothing compared to my sadness. I don't talk to anyone about it but to all of you. I feel I have a heart connection with you. It's like a secret. I just tell everyone I am doing great. And yes, my heart is much better but this sadness, this lack of energy, my memory not the same. My hope is things will get better, I am alive, and that is a good feeling. Thanks to all of you for your opinions and well wishes. Rubi