How long in the waiting room?

[pamela]

I'd just like to interject that cardiologists are disease managers and heart healers. The only way your heart will get better is to have a valve replacement by the best qualified cardio-thoracic surgeon you can find. I'd be questioning my cardiologist who counsels against a surgical consult as to what they hope to accomplish by prolonging the wait for replacement.

You've heard it said often enough that when it starts to go bad it goes bad fast. Giving you a false optimism isn't doing you any favours, go shopping for your second opinion now while your situation isn't emergent.

Take Heart, no one's ever said it was bad to simply talk with the doctor who will, literally, hold your heart in hand,
Pamela.

 

[emc07]

Hi Nupur,
I worked until the day before surgery. I was bumped from surgery a couple times due to lack of beds, and I went back home and back to work for the 2 day break. I found that working kept my mind on something else. It was a great comfort to me to be able to do something other than think about the surgery.

I was sleeping well before surgery and thankfully I had no anxiety attacks and I chalk it up to having a great support system. I had accepted the idea that there is no choice in this. I had to get my valve replaced. After I accepted that the surgery was inevitable, I felt better. Talking to the surgeon helps too. This forum was a great tool and comfort for me before and after I had surgery, I hope it will be for you. We will be thinking of you, and in the meantime, enjoy life.

 

[Bonzo Dog]

How long in the waiting room? A bit fluid here. Diagnosed as a six year old, probably adult enough to fully understand a decade later, first VR op age 38 with an eight month lapse from 'It's now time for surgery' to actual surgery.

My son just started Kindergarten, and I keep telling myself that I HAVE to be around for his high school graduation

You will be. Valve replacement will give a positive improvement in your life expectancy. Think positive You are making things better with OHS not worse.

 

[debster913]

From the time my valve was diagnosed as severe to surgery: two months and five days.

I was generally asymptomatic until April 11, 2006, and that day everything seemed to signal that it was time: I had a horrible "attack" of dyspnea, chest pain, and weakness. I was rushed to the hospital from work (the ER doctor assumed I was having a heart attack, and when that wasn't so, thought I'd had an anxiety attack and sent me home. He wasn't very kind, and he thought that my "simple mitral valve prolapse" wouldn't be causing such a thing), put on mandatory medical leave by my boss, and saw my cardiologist a week later for an echo. He knew right then that it was time, and he immediately got the surgery process started.

Total time in the "waiting room"-- 30 years, nine months, and three days. I was diagnosed with myxomatous mitral valve prolapse at birth.

If you're as symptomatic as you are, and many of your symptoms sound like mine in the two months before my surgery, you need to consult with a surgeon now. Don't wait!

Hoping that valve of yours gets worked on soon and you can feel like new!!!

Best,
Debi (debster913)

 

[MikeHeim]

Everyone's different. I was only in the waiting room a few months, and actually was glad to be working as it forced me to focus on something else. My advice is just to push forward and get it done ASAP so the whole thing is in your rearview mirror and you can get on with your life.

 

[skeptic49]

I'd be questioning my cardiologist who counsels against a surgical consult as to what they hope to accomplish by prolonging the wait for replacement.

Good post, Pamela. I am proceeding with a surgical consultation even though my cardio did not even suggest it. He left me with "If you develop severe symptoms, then get attention." Seems silly to me to wait until I'm severe to at least start getting the surgical ducks in a row by at least meeting with a surgeon. Why not? It gives you the opportiunity to interview a surgeon, and get a surgical perspective on your condition.

Jim

 

[Nupur]

To consult with surgeon or not

To consult with surgeon or not

Thanks everyone for the suggestion that I need to be proactive about consulting a surgeon. Makes sense to me. To be fair to my cardiologist, she has said that I CAN if I really want to, but she would be surprised if any surgeon would recommend operating right now. From everything that I have read, there is a dilemma in the medical community about what to do with moderate/severe asymptomatic patients. I think the recommendation was to do surgery if there is a >90% chance of repair. I would like to start contacting a few surgeons who are likely to repair anterior leaflet prolapse, especially since the local surgeon I know about (Miller at Stanford) is a aortic valve specialist. I will probably look at consulting with Vaughn Starnes at USC some time in the coming months. Jim, you are courageous to do the surgeon consult pro actively!

Here is a link to an interesting article called "Asymptomatic Valvular Heart Disease : What are you waiting for?"

http://www.medscape.com/viewarticle/579047_2

Thanks.

 

[susieq14]

Hello Nupur,
My computer has been misbehaving so I've been off-line for the last 2 weeks. I'm sorry that you have received this diagnosis and cerainly understand how you are feeling about it all.

I too have mitral regurgitation which was diagnosed quite accidently in August 2004. Originally I was told it was moderate to severe and that really threw me into a tailspin. My husband and I had a cruise scheduled for 2005 and we cancelled it because I was deathly afraid of being on a ship in the middle of nowhere and having something happen. I then changed cardios and he told me it was only moderate and that I did not need to worry for a long time about surgery. Surprsingly this didn't allay any of my fears but instead makes me worry more - how can there be such a discrepancy in opinion or interpretation or test results? I've gone back and forth in my opinion of my cardio - sometimes I feel I trust him completely and other times I feel the total opposite. I belong to an HMO so I need to get a referral from my GP in order to see a specialist. Last winter I asked my GP if I could see another cardio for another opinion and his first answer was "no it was not necessary" He said that the second cardio would wonder why he sent me there. At the tail end of the appointment as he was walking out the door, he did say that if I really wanted to he would consider it but he wanted me to think about it. I guess you can tell from this rambling post that this silly waiting game is driving me crazy. I certainly would recommend that you start the surgeon consult search. It may give you the peace of mind that you need.
All the best,
Susie

 

[pamela]

Nupur, You don't sound as if you're asymptomatic. Dizziness, tachycardia, anxiety and breathing difficulties are all signs and symptoms that your heart is working (maybe) a little too hard to keep your bits and parts supplied with the O2 we need to live. Please, you don't NEED your cardiologist's permission to get a second opinion and/or a surgical consult.

I'm of the thought that my PCP was one opinion that I needed treatment, my cardio was a second and when I saw the surgeon and he agreed it was best to have the AVR, that was three. Please, don't deny your illness too long, that is what kills people with valve disease.

Take Heart, the surgery is easier than making the decision to have it is.