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Leaking aortic valve with severe regurgitation

  • 1.  Leaking aortic valve with severe regurgitation

    Posted 07-29-2019 21:17
    I am a widowed 70 year old American male with 2 adult children (and families) and no family history of heart disease whatsoever. I walk 3/4-1 mile 7 days a week with my wiener dogs. I go to the gym 3 days each week: 30 minutes on a LifeCycle at medium difficulty; 45 minutes on various weight stack machines. The other 4 days I do stretching and calisthenics at home for 30 minutes. I am 148% asymptomatic yet have been diagnosed with a leaking aortic valve and severe regurgitation and told I need to "get on the table so we can crack your chest" to replace my aortic valve. WTF! For all I and my cardiologist know I have had this condition since birth and could live another 25-30 years without any resulting complication. I have read endless horror stories on the web about post-sternotomy suffering and major life-altering consequences from the surgery. Do any of you know of a medical provider who does a mini-sternotomy procedure to replace the aortic valve. Otherwise for me a median sternotomy is a real deal breaker. Any advice?

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    Melvin
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  • 2.  RE: Leaking aortic valve with severe regurgitation

    Posted 07-30-2019 10:07
    Melvin
    At Health Park Hospital in Fort Myers, there are a couple surgeons doing minimally invasive aortic valve replacement thru the right upper chest. No Sternotomy !
    If you meet the requirements, they are also doing the TAVR.Transcatheter aortic valve replacement- usually through the femoral artery. But they can also go thru thru the forearm artery, the carotid artery, etc.
    The four surgeons have been rated in the top 1% in the country.




  • 3.  RE: Leaking aortic valve with severe regurgitation

    Posted 07-30-2019 11:22
    Joe, I live in San Diego, but your information about Health Park Hospital is most helpful. I still have a couple other potential options locally, but will not know about them for another 2 weeks. Mayo in Scottsdale may also be another closer option. Thanks so much for responding. Melvin





  • 4.  RE: Leaking aortic valve with severe regurgitation

    Posted 07-30-2019 15:52
    Melvin,
    Welcome to the group. I would highly recommend finding a facility that does the TAVR procedure. It was also recommended in another reply. It's really akin to a catheterization, so its minimally invasive and recovery time quick. It's worth it to investigate it.
    Good luck.

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    annette smith
    saxonburg PA
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  • 5.  RE: Leaking aortic valve with severe regurgitation

    Posted 07-30-2019 19:58
    Thank you Annette.  I could only wish that TAVR would be an acceptable alternative. Unfortunately, TAVR works for the underlying problem of stenosis (like Mick Jagger) but doesn't work for leaking aortic valves. 





  • 6.  RE: Leaking aortic valve with severe regurgitation

    Posted 07-30-2019 21:06
    If it's any consolation, I have 4 leaky valves. I am pretty much asymptotic. Get yourself to a really good cardiologist and then get a second opinion after that. Good luck to you. Keep us posted. 

    Sent from my iPhone





  • 7.  RE: Leaking aortic valve with severe regurgitation

    Posted 07-30-2019 21:48
    Thanks Annette. One leaking valve is too much, 4 I don't know what to tell you. I already have a second opinion and a stress echo, without complications. I just cannot accept the rehab I would be facing after a median sternotomy, assuming I get off the table (Bill Paxtgon and others didn't). For me it's a mini sternotomy or nothing. That's my own decision and I am at peace with it. If it ain't broke, don't fix it. Melvin 





  • 8.  RE: Leaking aortic valve with severe regurgitation

    Posted 07-30-2019 22:53
    No one knows your body better than you. Go with your instincts, they rarely let you down. Good luck to you. 

    Sent from my iPhone





  • 9.  RE: Leaking aortic valve with severe regurgitation

    Posted 08-02-2019 17:13

    Melvin,

    I believe you said you could not get a TAVR because your AV was "leaking."  When doing my volunteer gig today at Health Park I checked this with one of the TAVR medical staff. Depending on the stenosis of the valve, the Edwards valve may not work but the Medtronic valve most likely would work. So in your area, the Dallas Medical might work for you and one of the two doctors doing the work would be Dr Dewey.

    Good luck and keep me posted, please. And Keep Asking and Keep digging.

    Regards,

    Joe J. Ft Myers






  • 10.  RE: Leaking aortic valve with severe regurgitation

    Posted 08-03-2019 19:27
    Thank you for sticking with me, Joe. The unanimous medical opinion in the San Diego area is that a TAVR procedure will not work for a leaking AV and no one will try it. However, I have found one (maybe two) cardiothoracic surgeons that can, have, and will do a mini-sternotomy to replace a leaking AV. I am following up on this and will hope for the best. I remain 148% asymptomatic and am in no hurry to "get on the table." Before I found Mended Hearts, I found endless horror stories on the internet from post-op patients (some quite young) about the excruciating pain, depression, sleeplessness, etc., lasting for months, if not years (or lifetimes). Having found Mended Hearts, I have discovered that these horror stories continue. At some point we each have to honestly acknowledge our real life priorities.  Thanks again. I will keep you in the loop. Melvin    





  • 11.  RE: Leaking aortic valve with severe regurgitation

    Posted 08-04-2019 14:03
    Hi Melvin-
    I'm 70 years old and have had (and been treated for) prostate cancer since 2007. One of the known side effects of "androgen deprivation therapy," which is the standard of care after radiation and/or surgery, is adverse cardiac effects resulting from disturbance of blood chemistry. I was a competitive rower in high school and college and, until recently, in masters competition. In 2011, I discovered my heart valve problem when, about 1 km. short of the end of a 4.5 k race, I started going "lights out." I finished the race, rowing intermittently with my other 7 crew mates doing their best to make up the difference. The diagnosis was regurgitation through my aortic valve, caused by the "leaflets" failing to seal tightly. Paradoxically, with this condition, once you pass a certain threshold and the body requires still more blood flow, the heart becomes less efficient as it tries to meet the demand by pumping faster. I have a (previously unknown) congenital valve defect: mine has 2 leaflets instead of 3. The cardiologist speculates that my changed blood chemistry has caused deposits to build up on the leaflets, making them less flexible and causing a poor seal. Anyway, his recommendation in 2011 was just to monitor the situation and watch for enlargement of the heart (a bad thing).  I could continue rowing but backing off the effort when I felt myself approaching that critical threshold, which is what I did. I took statins and saw my cardiologist every 6 months. Beginning spring 2018, I was beginning to feel weaker and quit rowing. Last fall, my cardiologist said my heart was beginning to enlarge and referred me to a team at GW University Hospital here in Washington that does TAVR. So, I went through a series of tests and interviews. TAVR apparently is FDA approved for stenosis-where the valve opening was constricted by calcium deposits. There was some concern that, in my case, the calcium deposits were inadequate to properly anchor the replacement valve. In my case, the valve is quite large-apparently requiring the largest diameter replacement valve that is made. An angiogram (part of the standard preliminary for TAVR) showed an 80% blocked circumflex coronary artery, so that was addressed with a stent immediately. Because of the state of my cancer (stage 4), I think there was some reluctance to go forward although I was never told that, and my oncologist supported having the procedure done. Ultimately, as a final test, the TAVR team decided at the last minute to put me on a treadmill. Depending on your point of view, I either passed or failed-my output was too good. So, no TAVR for me. I will say that the stent has markedly increased my capacity; I feel better and stronger than last fall.
    So, my suggestion is (1) find a cardiologist who is willing to monitor you every 6 months without jumping to surgery of some kind and (2) don't consider surgery until your normal daily activities are interfered with. When doing aerobic exercise,your body will definitely tell you when it's time to ease up. As for me, I take daily walks and can cover 1.8 miles in 30 minutes routinely without breathing hard. That's not where I was last fall.  Regarding TAVR for regurgitation, there is a team at GW University hospital in Washington, DC who will do the procedure.This hospital is well-known for its cardiac unit. I believe former VP Cheney gets treated there.
    Good Luck!
    Bruce

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    R Bruce Beckner
    Arlington VA
    rbbeckner@gmail.com
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  • 12.  RE: Leaking aortic valve with severe regurgitation

    Posted 08-04-2019 17:02
    Thank you for your input, Bruce. I too passed the stress-echo with flying colors and I have a similar exercise regimen, although I am also in the gym and do stretching and calisthenics at home. My doctors are monitoring my asymptomatic condition and I will get nowhere near the "table" unless and until there is a serious decline in my physical health. Even then a median sternotomy is a deal breaker for me, not for you or anyone else. This is a decision only I can make. Also I do not have an unlimited federal lifetime healthcare plan. So like the vast majority of people, I do have my own financial limitations, which, obviously, is a weighty, valid factor. Melvin





  • 13.  RE: Leaking aortic valve with severe regurgitation

    Posted 08-07-2019 17:49
    Melvin,
    I live in Orlando and AdventHealth (formerly FL Hospital) started doing TAVR in 2012. AdventHealth has a couple of surgeons who specialize in TAVR
    Since then they have done over 1300.
    I don't know the answers to your question about "when it's appropriate to use TAVR but if you contact Beverly Mansker 407-303-8886 in the AdventHealth cardiac dept she will help you.

    Bill MH visitor chapter 296 Orlando
    ps I had open heart aortic vale replaced with cow tissue valve and 1xCABG in Dec 2015 at age 60 after having 2 cardiac arrests while in the ER for a ruptured gastroduodenal artery. I had "0" pain after surgery and never had any pain issue with my chest. 







  • 14.  RE: Leaking aortic valve with severe regurgitation

    Posted 08-07-2019 23:13
    Bill, thanks for the contact info. I will try to call Beverly tomorrow morning. I just found out hours ago of an Advances in Heart Failure Treatment seminar tomorrow night being presented by one of our prominent San Diego healthcare providers, which I will attend. Melvin





  • 15.  RE: Leaking aortic valve with severe regurgitation

    Posted 07-30-2019 18:40

    Dear Melvin:

    I have had (3) separate valve replacements done . Two in 1988 and a third in 2010. I'm now 72 years old, never have had a Sternum problem. If you are worried, have you checked into a "TAVR" it's done through your groin, or in certain cases through your wrist. My first (2) surgeries were done 12 days apart my aortic valve was replaced and then I needed emergency surgery to replace my Mitral. 2010 the doctors had to replace my aortic valve again. Thank God in both hospitals first in Michigan and the 3rd replacement in Arizona I had fantastic doctor's, I still work 40+ hour a week, work out in Cardio - - rehab 3 days a week. Get it taken care of a live your life !!!!!

     

    Tom Seiter

    Mended Hearts 126

    Scottsdale, AZ.






  • 16.  RE: Leaking aortic valve with severe regurgitation

    Posted 08-04-2019 10:42
    Tom, all of my doctors have told me, and what I have learned on the internet is, that TAVR is only appropriate for AV stenosis, not leaking, although once the original AV has been replaced but fails, TAVR can be used to replace the replacement AV. I am living my asymptomatic life without change...wait, after all of this started I have begun going to the gym 3x per week, in addition to my daily walks, stretching and calisthenics. I will stop living my life My Way when the good Lord calls me home. BTW, I live in San Diego so Mayo Scottsdale may be an option, but a median sternotomy is not. Melvin

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    Melvin
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  • 17.  RE: Leaking aortic valve with severe regurgitation

    This message was posted by a user wishing to remain anonymous
    Posted 08-11-2019 03:05
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