“Can Medication Treat My Heart Valve Disease?” Asks Jimmy

Adam,

Thank you for all the information and your book, I was told by my doctor that I should think about Heart Valve Surgery and that I am a candidate for the Ross procedure but I have no symptoms and never had them. I run or walk 2 mile per day I play soccer so I don’t know what to do. How would I know when is time?

Please address this issue

thank you,

Jose Ulloa
jose.ulloa@rcmt.com

Jose, as a survivor of mitral valve repair surgery (done by Dr. Richard Shemin with the da Vinci robot at UCLA) … January 2008…believe me it took me awhile to wrap my head around the idea of open heart surgery. But everywhere I looked, everything I read, everyone knowledgeable that I talked to convinced me to do the math. MEDS WILL NOT FIX A SEVERELY LEAKING VALVE. Every time your mitral valve regurgitates, blood flows back into your lungs and into your atrial chamber. This can absolutely result in heart failure and pulmonary problems. It weakens your heart. My advice is to schedule 2 or 3 appointments with top surgeons in mitral valve repair and get their opinions. Your cardiologist cannot be certain that you need a replacement – you may be able to have a repair, which is better for you, if possible…in the hands of a skilled surgeon who does this surgery all the time. I would not have a surgeon who does not perform MITRAL VALVE REPAIR or replacement surgery at least 100 times a year, and has done so for years. See if you can find someone who can do your surgery with the Da Vinci robot. It is far less invasive and recovery time is quicker. You will be surprised how quickly that you will be ready to leave the hospital (I was there 5 days) and yes, even be back up and walking around and back to work. My advice again, don’t rush yourself. It takes time to completely heal. There are many here who can talk you through this – it is not so bad. I mean it. I have been through it all, including a recent takotsubo cardiomyopathy event which got me to the hospital in an ambulance(!) and I am doing GREAT and we must empower ourselves with education and knowledge, and not let fear stand in our way. Wishing you the best
Leslie

I am scheduled for Mitral repair Wednesday (7/8). I would be leary of any doctor who is using a replace first mentality. After much research I chose Dr. Bethencourt in Long Beach CA (I live in Oregon). He is a repair first DR and most of the progressive doctors I researched also have the same attitude. As a matter of fact what I have seen and heard, a bad repair is better than a replacement. You might want to check out http://www.mitralvalverepair.org it is an informational site that is part of Mount Sinai Hospital and has some very good information. It has some great questions that you can use to evaluate doctors. I am having the surgery done using the DaVinci Robotic system. I will update when I am able.

One other thing I wanted to note is that the repairs now are very good and pretty close to permanent.  The thinking is to now do the repair sooner rather than wait for problems to develop.

Adam, I have written about Peter’s “unexplained” improvement of his bicuspid aortic valve previously. His valve went from .8 cm. to 1.2, a significant improvement we attributed to the PhiZymes I wrote you about previously. However, his potassium level soared to 5.7. There was a lot of potassium in the PhiZymes and one month after stopping taking them, his potassium is now a normal 4.5. However, there are certainly other supplements that help the heart: CoQ10/Hawthorne/Ceyanne, etc. etc. Don’t give up on the other possibilities. However, I now realize it is silly to take any supplements without monitoring. And now that we’ve stopped the Phizymes, we hope the aortic valve, (if not continuing to improve) will at least stay at 1.2 cm, avoiding valve replacement surgery. Love your site. Many thanks. Galine

Hi Jimmy,
As others have responded … look for someone to do a REPAIR! Feb. 3,09 Dr. David Adams at the Mount Sinai Mitral Valve Repair Center at Mount Sinai Hospital in NY did an “over the top”!!! difficult repair on my mitral valve. It had 100% regurgitation with calcium deposits in the leaflets & now have NO regurgitation. ! Also have NO murmur. Read as much as you can on that website. You can send your info to them & they will evaluate it for you. I did that from here in CA & went to NY for the repair. Both my cardiologist & internist here in CA were absolutely amazed that a valve in my condition could be repaired & have 100% perfect function afterwards! The surgery … just take a deep breath & go “night-night” 🙂 Mine was 8 hrs. & I don’t remember a thing. Healing has gone well. We’ll all be here to cheer you on!!

Jimmy, I went from moderate mitral regurgitation to severe in about 4 years with the help of an ACE inhibitor and a beta blocker. Once you reach the severe stage, it’s time to find a surgeon. My lungs were so filled with fluid that I couldn’t walk 50 feet without huffing, puffing and gasping for breath. Sleep was impossible and I’d startle awake as if I was drowning. Seems to me that Steve’s advice above is spot on. Many surgeons are offering elective surgery to patients who are in mild and moderate stages. The thinking is that the longer we delay, the higher the chance that the heart’s LV and EF functions will deteriorate. My tricuspid valve started to leak as well and there is the possibility that as my heart started to enlarge slightly, that’s what caused the tricuspid valve to leak. Keep in mind that your heart tries to compensate for the regurgitation by working harder than it needs to every time it pumps. That’s not a good situation to be in for long as it could cause cardiac enlargement, decreased left ventricular function and a lower ejection fraction to name a few. Dr. David Adams at Mt. Sinai performed my double valve repairs exactly one year ago tomorrow. Keep learning all you can, get a second opinion and keep asking questions. But know this: you’re being offered a new lease on life. I’m 53 and four years ago I couldn’t walk a golf course easily or play basketball with my son very long. Today, I ride my bike 40 miles with no issues (unless I get a flat) and by the time I reach the back nine, I may be sweating, but I always feel like I can play another round. We all faced what you’re facing right now and we’re here cheering you on. That should tell you everything you need to know.

Mine was a congenital prolapsed mitral valve with moderate to severe regurgitation repaired by Dr. David Adams at Mt. Sinai in NYC – simply the best. I do not remember a thing as far as the 7 hours of surgery. It seemed like 1 minute I was chatting with doctors in pre-op & the next I was waking up with my nurse and family in ICU. The staff really cared for me for those 8 days in the hospital.
I think I learned that while it is largely in the numbers with stuff like Ejection Fraction being important, you need a trans-esophageal echocardiogram done. The resultant videotape goes to the repair surgeon for their evaluation along with your medical history. The point of all this is to fix the valve before the compensating heart so damages itself that you’d have a tough time recovering from the surgery; balance that against the good news that they are getting better at this procedure on a seemingly month to month basis. I was only having symptoms rarely when my cardiologist told me it was time to fix it. I was still OK for the next eight months, often working six days a week but then I could only work 5 days and by 11 months later there were times when I was breathing between words and could not make my legs run up stairs. The meds are to help the over-working heart but nothing is going to fix the structural problems of the valve except a surgeon. Once it is decided that you need it fixed, do your research and get it done by the best you can find. That PMV of yours is making your ventricle do a lot of extra work and as a muscle it will get thicker and that is not good. Also, that atrium is not happy either & neither are your lungs. My valve had been like a sword of Damacles hanging over me and it has been so worth it to get it fixed. I can breathe & run & I wake-up every morning feeling awake instead of confused like before the repair. My heart no longer shakes me with its beating like before. Oxygen is a great thing! You are embarking on the adventure of a lifetime and will emerge transformed. Read Adam’s book and this blog. We are all here to help get you through.

Dear Adam,

My family & I are v.v. cofused and nervouse after my husband(65 yrs old) is diagnosed with Acute Aortic Stenosis. His doctors have said it’s aging of the heart. He has been advised to undergo Aortic Valve replacement on the 30th. of June 2009.

He has been v. adamant and refused to discuss this surgery. However my son & I have convinced him to get conditioned to the idea that this is the only way forward. We started our leg work on this by approaching the British Heart Foundation and freinds who have had heart surgeries. My husband’s dr.s, all the info we’ve collected from the BHF, surfing the net & other sources, made us to think that we’ve time to find doctors/all options & the hospital specilising in this specific surgery.

Yesterday, my husband’s sister has scared the living day light out of us. She has talked to her cardiologist friend. This cardiologist has given the verdict – even without checking the reports ( we live in different countries) – that my husband may die of a heart attack if the surgery is not implemented immediately.

I think that this cannot be true yet I would like very much to know how urgent this surgery can be, do we not have time to prepare/search for the doctors & hospitals, to organise leave for my children to be there at the time of the surgery? I’m scared of rushing him into a surgery, also I know he’ll be more confident if our children are with us at the time of the surgery.

I realy will be v.v. grateful for any advice from you and all the comments from other patients.

Thanks
Sunita Mody

Sunita,

Thanks for writing and sharing your story with me.

It sounds like you and your family are going through a very difficult and emotional time. Trust me, you are not alone in this experience. Many caregivers and patients have had similar feelings due to the stress of heart valve disease.

That being said, I would encourage you take this step-by-step.

Your husband received a primary diagnosis from a cardiologist. It is my belief that if your husband was close to heart failure, the cardiologist would have scheduled him for an immediate surgery. That did not occur.

Also, given what you tell me, the cardiologist has much more experience than your sister-in-law, who is not a cardiologist and did not review your husband’s medical records, echocardiogram, etc.

As you may know, I advise patients to get a second opinion to confirm the initial diagnosis (if there is time) prior to surgery. It does not sound like your sister-in-law is qualified to validate or negate the primary diagnosis.

Is it possible that your husband could have a heart attack and die? Yes, it is. Is it possible that your cardiologist is completely incompetent? Yes, it is.

My point… Anything is possible.

That said, I would encourage to take this step-by-step.

I am not a heart doctor, nor would I ever represent that I know what will happen to your husband in the days prior to his scheduled surgery. But again, I think the cardiologist would have taken the appropriate steps if his heart was about to fail.

Keep trying to get a second opinion for comfort and consensus around your husband’s condition.

My thoughts and prayers are with you.

Keep on tickin!

Adam

Hi Adam
I was born with a bicuspid aortic valve which was discovered when I was 50 years old. At that time my aortic opening was 1.55 square centimeters which is about 50% of the desired 3.0 square cm.

It remained unchanged until Oct 2008 when they detected it had narrowed to 1.03 square cm. Eight months llaer, in June 2009, they discovered it has narrowed to 0.75 square cm.

I now have only 25% pumping capacity in the aortic valve. They tell me this is now considered severe and requires surgery soon. I have been classified as having severe aortic stenosis. They have no idea why things are deteriorating so rapidly. I have few symptoms. If I climb stairs or walk quickly up a hill I have shortness of breathe.

If I golf ( I use a cart) I sometimes experience mild , little stabbing pains in my chest near my heart that evening. If I bend over and then stand up quickly I sometimes feel dizzy. I have seen a cardiologist who says I need to be followed closely but he is not anxious to recommend surgery until my symptoms are more severe.such as frequent passing out, and more severe shortness of breathe. My family doctor has gone ahead an arranged for me to see a heart surgeon in August for a consultation.

I inherited this condition from my father, even though I am female and it is not as common to do so. My father died of a massive heart attack at 74, 25 years ago when they were not able to detect aortic valve disease accurately. I am soon to turn 60.

I realize they have to time this surgery correctly and not proceed too soon, but I am very worried that i am a walking time bomb. I live a 4 hour drive from a heart treatment centre. I have been told that symptoms and events are brought on by excessive exertion, but none the less it is a great concern to be sitting and waiting for symptoms to get worse, given the severe limitations of my aortic valve!

Any thoughts on this waiting?

A company called Bell’s has a heart valve medication sold at health food stores that claims to reduce heart valve blockage. Is this just nonesense? I am terrified of the required angiogram that has to be done before the surgery due to stroke risk? Also, I am Canadian and have not been able to get your book anywhere. When will it be available in retail stores? I In Canada?

Thanks Adam,
Cathy

Hi there,

I am 23 and from India and right now in US for my Master’s of Science. I have been having Bicuspid Aortic Stenosis (BAS) right from birth and never had any issues like short of breath, dizziness, weakness or other symptoms of BAS till the last xmas eve. I scored a C in one of classes this semester and was all down on the floor with anxiety, short of breath, heavy heart and cramps all over my body mostly on the left part.

I never had a surgery before but I know I will be needed to get one done. After all the ugly scene my unlucky heart showed up on the X’mas eve I am kind of in a dilemma whether to go for the surgery right away or to hold on till summers and take extra care till then.

I am back to normal and will avoid any unnecessary stress.
I have these following set of questions:
1. As I described earlier the anxiety i felt a couple of days ago, should I runaway for the surgery? (this will delay my semester and definitely suffer some monetary issues).
2. After the stroke should I stay back till summers and then go back and have the surgery done?
3. If at all I go for a surgery. How long need I take bed rest? or when can I get back to normal routine?

Thanks & Best Regards,

Sagar

Still Ticking!
:):