Jose Karlo's Journal

Susan Lynn  Karlo - Welcome! You've come to the right place. I suspect many people on this site have had the exact same experience. I also didn't feel prepared to schedule my TEE after I failed a cardiac stress test. The cardiologist's office called me, in a few days, and I booked it. I was nervous, but it was a piece of cake - it's a short procedure and you're out like a light. I did find out after it that I wouldn't need a replacement - although more than 90% of mitral valves are repaired by experienced surgeons, it did bring me some comfort.
We mitral valve people usually aren't considered emergencies, but you'll want to have it done before your ventricle enlarges from being overworked. The million dollar question is when to have a mitral valve fixed - most surgeons will say sooner rather than later. As a patient, all I knew was that my valve was never going to get better on its own, so I got busy interviewing surgeons and made the choice to put it behind me, quickly. You'll make the choice that's right for you when you're ready, too. One other thing most of us will tell you, waiting for the big day is actually worse than any part of the procedure. If you decide to wait, don't let your imagination get the best of you. These surgeons and their teams have these approaches perfected! Take your time. Be your own best advocate! Good luck!

Rose Madura  Karlo, I understand how you feel. I knew most of my life that I would need surgery sometime but when the time came, I was still in disbelief.  I did get a second opinion and then changed cardiologists to one I liked and trusted.  Remember, you are the one in control. It's your decision. However, that being said, it is something you will have to deal with sooner or later.  Do some research and then find the right time for you. Just don't ignore itm. My two cents. 💰

Robert Miller  It sounds like both doctors think it's not urgent so I would say go and enjoy your vacation. Don't push it out too much, though. In my case things did go south pretty quickly.

A TEE is easy. I told the people I have bad gag reflexes (I do) and they knocked me out pretty good. Have someone pick you up after it. 

The bigger issue is after the TEE. If they determine you need OHS then you have some research to do. The procedure itself is easy and safe. Recovery is a different story but with the right preparation it is manageable. That is what this forum is about. Check out the FAQ, too. Good luck.

Richard Munson  When mine went from moderate to severe in less than a year, it got my undivided attention. I would not cancel my vacation either but know it will not get better on its own. Does a leak in your kitchen faucet get better as time goes by or is a plumber the only answer. Plus the earlier you take steps there is a better chance to repair your valve not replace. Its what finally convinced me to get this done. Mitral regurgitation is the most common condition in the valve world so i would not wait till symptoms start to appear. That mitral valve leak can also lead to a fib issues and can also affect the heart chambers which try and compensate for the leak. No one wants to have open heart surgery , who would, but the success stories here are many. Plus, the wait times for the best doctors can be daunting. The surgeon that can fit you in next week might not be your best choice. 

Russ Fairchild  Hi Jose,





I returned home yesterday, 9/13, from my mitral valve repair surgery that
took place on Friday, 9/8, so I have been down the road you are on starting
on.  It began May 9, 2023 with a routine annual by my PCP.  Using the
ubiquitous stethoscope, he detected what he described as a heart murmur. 
This is where it begins.


 


My PCP suggested I make an appointment with a cardiologist, which I
did.  He recommended an echocardiogram, which is an outpatient procedure
that is non-invasive and takes about 40 minutes.  The technician discussed
the results with my Cardiologist and the conclusion was that I had severe
mitral valve regurgitation.  Don't hold me to this but for me that meant
the back flow (which the mitral valve is meant to prevent) was greater than
50%.  This causes the left atrium to work harder to re-pump that blood
back into my left ventricle.  Left in this condition the Left Atrium will
enlarge and eventually create back pressure into the lungs from which it gets
the blood causing initially shortness of breath and then many other bad things.


 


Let me step back here and look at the overall picture of trust, which I
think you are having an issue with.  The first level of trust is that with
my PCP.  I have been going to him for at least 25 years if not
longer.  Over all those years he never mentioned any issue with my EKG or
any heart murmur.  With that in mind, I trusted him enough to take the
next step by setting up an appointment with a Cardiologist he
recommended.  That starts the next level of trust that I needed to develop
and that is with this new Cardiologist.  So, I clearly had enough trust to
go ahead with the Cardiologist, because my PCP knew and trusted him.  But
I did check him out and found his reputation as sterling.  I think on my
first visit with him, I got the shock you did when he suggested heart surgery
most likely would be needed and probably within the next two years.  You
could clearly see that he was apprehensive when he told me this because not
knowing me, he did not know how I would react.  I think my exact words
were, "Jesus Christ, does this mean open heart surgery?"  He
demurred on exactly what type of procedure may be necessary, but he clearly did
not try to sugar-coat the issue. 


 


The next major steps were to schedule a stress test (which really just
sees if you have any issues that may have developed to possibly indicate early
onset of loss of breath) and a transesophageal echocardiogram (TEE). 
Note that at the time I was making these appointments I was totally
asymptomatic, weightlifting four days a week and weighed about 190 which
I intentionally have gotten down to 180
now.  Bottom line I was arguably in the best shape of my life.


 


So, the order of things turned out that I got the TEE first and the
stress test a few weeks later.


The TEE is meant to get a better video of the mitral valve given that the
orientation of the heart puts the mitral valve closer to the esophagus than to
the chest.  While the TEE is further diagnostic it would eventually be
used by the thoracic surgeon (read:  Heart Surgeon), to determine exactly
what needs to be repaired and the best procedure to do it.


The TEE is a breeze as you are under general anesthesia and remember
nothing of it.  You go to sleep and then wake up and out the door you go
(you will need someone to drive you to and from and not Uber).


 


So now the next level of trust begins and that is
identifying the likely Heart Surgeon.  My Cardiologist gave me the name of
the likely surgeon, because again, the Cardiologist has developed over the
years a trust with heart surgeons.  And in fact, the Heart Surgeon he
named had done bypass surgery on his father.  But again, I checked out the
surgeon and again a sterling reputation.  Not only was he the head of
Cardiac surgery at Morristown Medical Center (Gagnon), but several members of
my church or relatives of theirs had been treated by him!  They had
nothing but good things to say about him (his name is also listed in
heartvalvesurgery.com).


 


So having done the stress test (no issues) and the TEE that
next step was to meet with the surgeon in his office at the hospital.  He
wasn't touchy, feely, but he was straight forward and natural.  I asked
about how many heart surgeries he had done, and he said he does over 100 a
year.  I also mentioned getting a second opinion from Langone (tops in the
country) and he said sure, "but Russ, we will take good care of you
here."


 


So now we are still on the two tracks of trust and
procedure type.  The trust track needs to be resolved first, and then the
best procedure is determined by the Heart Surgeon.  Their intent is to provide the best possible
outcome.  Their reputation depends on
it.  And the TEE is not the last step in
determining that.  Before my scheduled
surgery date of Friday, I was brought into the hospital for a Cardiac Catheterization.  This involves sending a small tube into your
arm or groin and up into your coronary arteries (that provide blood to the
heart muscle itself).  This is usually
called for with a patient that has experienced other vascular issues such as
high blood pressure, high cholesterol, calcium deposits (detected in my case by
an EBCT years ago that resulted in me starting on statins).  The reason is the Heart Surgery wants to go
into your thoracic cavity a minimal number of times over your lifetime, for
obvious reasons.  So, the results of that
procedure may determine whether the procedure calls for “open-heart” surgery or
a minimally invasive procedure.  Despite
my history with the issues above, the result of the procedure was negative, and
I was admitted to the hospital for a minimally invasive procedure for the next
morning (i.e., I stayed overnight).


 


But of course, we need to stop here and deal with the scary
phrase, “open heart surgery.”


Admittedly, this scared me too, of course.  But what this really refers to is entering
the thoracic cavity through the sternum. 
And let’s be honest nobody really wants that.  But it is not like yester year.  There have been decades of experience with this
and hundreds of thousands of these types of procedures.  So though not preferable in our minds it also
should not eventually lead to a high level of fear you initially have.  With minimally invasive surgery you will
still get scarring also, just in a different location and not quite as visible
(mine is under my right breast).


 


So, one day out of the hospital, I feel fantastic, and my
recovery is just the healing of the incisions. 
No lifting heavy weights or driving for a couple of weeks for optimal
healing.


 


Now that we have dealt with the trust issue and hence what procedure
is used, the matter of timing arises. 
And this is individually dependent. 
In my case, the cardiologist and the heart surgeon said I should have it
done in the next two years (again dependent on the timeline of your condition
progression).  While my consideration was
not about a vacation, but about a job offer, the result is the same.  I held off for a couple of weeks or so to
resolve my situation.  Once it was, I
called the Heart Surgeon’s office and told them to put me into the lineup.  It took a day or two to line up the cardiac catheterization
surgeon’s schedule with the heart surgeon’s schedule and then I was given an
appointment for three weeks out.  This
timeline will vary of course.


 


I read your post only once, but my impression is that you
are skeptical and feeling rushed.


I believe healthy skepticism is warranted and you should not
feel rushed.  So do your due-diligence
investigation.  I scoured the web and
watched dozens of YouTube videos and videos here on this site.  Once you do, I feel you will be confident that
mitral valve regurgitation is a real issue that will not fix itself and will
only cause further cascading issues down the road.  So, I took the attitude of sooner rather than
later to avoid any symptoms developing. 
Your heart is a magnificent piece of equipment.  But even a BMW (pick your brand) engine is subject
to a cracked piston ring or yes, a damaged valve.  It may continue to run but its performance
will just get worse and worse until you find yourself stranded on the highway someday.


 


Not sure when your vacation is but hope you get to enjoy it
with no anxiety.  Develop that circle of
trust (nod to Meet the Parents). 
Understand your timeline and then get this thing behind you as soon as
you feel comfortable.


 


Feel free to contact me by phone or email if you wish.


 


Best


 


Russ


 

Rita Savelis  I'm sorry that you have to go through this. But having tests done is not rushing into surgery. It's getting information so that doctors can be prepared if they need to be. This does not mean you will be having surgery soon. Scheduling tests can take a long time. Those doctors were doing their job to make sure yours could be scheduled. Of course you can wait until you find doctors you trust. Take your time if you need to. Doctors are not rushing you, they are taking steps to deal with your valve problem. I realise this is hard news to wrap your mind around. I've been there. And I was followed for 6 yrs before surgery (8 years ago at age 53). It all felt unreal. Take care.

Delise Becker  Excellent summary of your experiences, Russ, followed by good advice for living your life and doing your research. Karlo, if your situation were urgently life-threatening, your doctors would say so. As Russ mentions here, left unchecked for a long period of time, mitral regurgitation can cause other severe problems. You don't have to rush into anything, but you do want to educate yourself and ask questions in order to make an informed decision when the time is right for you. Best of luck to you!