My Story

[Nupur]

Welcome to VR, Terri!! I am so very sorry that you lost the baby.

Your valve may have deteriorated quickly after enduring the first pregnancy. I never had a murmur until after I gave birth. Now I am told that I have a cleft in the mitral valve and the increased blood volume during pregnancy may have triggered the regurgitation and it very quickly became severe, within 5 years. All that while, I never thought I had any issues. I thought I was just tired and out of shape : )

You should get it fixed soon, you need to have energy to keep up with your 2 year old...best of luck with everything and glad you found us here.

 

[Marcia58]

Welcome, Terri!

I haven't been around much lately--just popping in and out--but my one year anniversary will be on the 26th 9f this month. I was diagnosed with mitral valve prolapse in my early 20s, and stayed pretty much asymptomatic through four pregnancies and past my 50th birthday. Another reason you can give your family is: "If the cardiologist says it's time, that's because he/she knows that heart valve issues can suddenly head south at a moment's notice." In three days' time, i went from feeling fine and being able to run half a block with no problem, to feeling fatigued and short of breath, with swelling in my hands and feet. THREE DAYS!! Like my cardio said. "There comes a time when benefits outweigh risks."

Six weeks post-op, I walked five blocks with my 2yo granddaughter on my shoulders--and I'm only 5'4", 115 lbs!

 

[Jeanie]

In today's local newspaper I saw a report of a new Mitral clip that can be implanted through an artery. It is in use in Europe but not yet available here, but here is some info on it:
http://news.yahoo.com/s/ap/20100314/ap_on_he_me/us_med_heart_valves
and another with more technical detail:
http://www.managedcaremag.com/archives/1002/1002.biotech.html

 

[ALCapshaw2]

Ok it does seem that being asymptomatic is not uncommon. Trying to explain to loved ones that you shouldn't wait untill you are before having surgery seems to be my new issue.

To my mind, Symptoms are a sign that DAMAGE has been done to your heart.
At some point, that Damage can become irreversible.
Surgeons like to FIX the problem before there is any permanent Damage,
and your recovery tends to go better the less damage your heart has to contend with.

One last thought. Damaged Valves don't get Better over time.
They get replaced. The Sooner, the Better.

'AL Capshaw'

 

[Philip B]

Listen

Listen

Terri,

Listen to Al...get the problem fixed before it has a significant, negative impact on your life. Don't wait for symptoms.

Waiting for symptoms to appear is not all that uncommon. When I contacted my insurance company about needing AVR surgery and an aortic graft, a company representative responded initially by telling me I wouldn't be covered because the surgery was voluntary. The representative felt I should wait until I had symptoms related to an enlarged heart or rupture of the aorta. After conversations with my surgeon and cardiologist the insurance representative realized how stupid the company response was..."Duh, he should wait until his aorta ruptures and he has about three minutes to live before he has surgery..." How does one say, "Stupid, stupid, stupid?"

There are a number of people like me here who managed to either get lucky or were blessed enough to escape major damage despite being slow on the trigger to get things fixed. Either through denial or simple ignorance problems didn't get addressed in a timely manner. Needless to say, I'd do things differently if I could time travel.

-Philip

 

[gerrys]

Terri:
Welcome!

We watched my murmur from the time I was a young kid. At 55 the cardio said "no issue, surgery is in your future but no time soon". At 59 - and leading a very active life - all of a sudden, one day I couldn't climb a ladder twice without having to take a time-out, sitting to catch my breath. A quick trip to the cardio, followed by the cath and interview with the surgeon - long story short, I was past due and in urgent need for an AVR.

The advice you are getting is good. Track your condition but don't put it off too long, as I almost did. The symptoms can creep up on you and may go unnoticed as the mind and the heart try to compensate.

Wishing you well!
Gerry

 

[Terri44]

Thanks guys I'm going to have my loved ones..aka ..Mom and Dad ..take a look at all the repsonses. Hopefuly this will sink in. I have my appointment todat at 3:15pm with Dr Murphy at St Joseph's in Atlanta to see if i'm a candidate for the Robotic procedure. This will be my second opinion so I plan to schedule surgery after.

Nupur I believe the 1st pregnancy is the reason I'm where I'm out now. my cardiologist believes I had Rheumatic fever as a child so my situation was inevitable and the process just got sped up.

Terri

 

[Mileena46]

If you are going to have someone look at the responses I would like to tell you how I ended up in surgery. I knew I needed it, but felt fine. (I thought), even stopped seeing my cardio because everytime I went to have my yearly echo I was still considered MILD. (I had Mitral Stenosis from Rheumatic Fever). I went 18 months thinking I would be fine the last time.....one evening I was sitting on my couch watching tv and my heart kicked out of rhythm. It had done this before but it never lasted more than a few hours.....so I waited. After about a week of that, I began to be short winded. Anytime I walked across the room I had to bend over to catch my breath! You would think that I would have gone to the cardio, but no I waited thinking my heart would right itself. ha!

After two weeks and I was getting worse rather than better, I went in to see my doctor. While doing the EKG everyone freaked out. I had a HR of 262 and was in A-Fib. After doing a cath they found a blood clot in my heart. I had surgery a week later to replace the valve and now am dealing with an enlarged left atrium that makes my heart want to STAY out of rhythm. I am taking a very bad drug (Amiodarone) to keep stable and it has horrilbe side effects. If your doctor says you need this surgery, I can't stress to you enough how important it is to listen. This is not about your family, it is about YOU and how many years of good health you might have with your 2 yr old daughter!!

Mileena

 

[karen14]

Hi Terri! Welcome! Good luck in your testing and all! ~karen14

 

[Terri44]

Met with Dr Murphy yesterday, it’s so overwhelming. The next step is a CT scan then surgery will be scheduled. He said he is hoping for a repair but may have to replace the valve. Until he gets in he will not know. Both procedures can be done by robotics. Yeah!! He also said depending on if my A-fib was from having Rheumatic five (I was never diagnosed) or the result of being degenerative he could correct it. Over all my husband and I were pleased with the consultation.

The kicker a co-worker who is also a friend returned to work today after being out a week. Her husband age 47 died of cancer last week after being sick for 2 years. Well when I went to her cube she had her head down. Gasping for breath, sweating and her jaw hurt. I called 911 and we just got a call she had a heart attack and in surgery.

Terri

 

[Jeanie]

I am glad you've got progess in your situation, Terri, but so sorry about your coworker. It is a good thing you happened to check on her just then!

 

[karen14]

Hi Terri and welcome! SO sorry about your loss! And you are in my prayers for you heart condition! ~Karen14

 

[halleyg]

So sorry about your friend, that is scary... Dr. Murphy is a great doctor, he did robotic MV on a family friend last year and he did a fantastic job. I used Dr. Kauten from that same practice, had two MV's (repair then replace) not robotic, and it is amazing the difference in recovery - in everything really. I had symptoms and it took almost a year to get diagnosed for surgery. Believe me, you do not want to wait for symptoms! My brother had a MV repair, had no symptoms except couldn't increase his running time. He is doing great. Also sorry about your loss, that is tough. Lots going on but you will be just fine! If I had to recommend surgeons in Atlanta Dr. Murphy would be at the top of my list.

 

[Terri44]

Got my surgery date..April 21th..Thanks everyone for the advice and sharing of your experiences. The countdown begins.

 

[Ross]

Now you can begin posting in presurgery.