New to all this.

[Blair]

Hello everyone. Not sure what to say here. This all seems so strange. Diagnosed six years ago with a leaky mitral valve. Last week my regular doctor said he thought it was time to think about surgery. Scheduled an echo for March 24. On March 31 I will consult with the cardiologist in person for the first time. Asymptomatic, so this was a total surprise. A real emotional rollercoaster all week. Hard to stay focused mentally.

I don't know anyone that's had valve replacement, and felt very alone until finding this site. Lots of information here, and personal experiences helped calm me down. 55 year old guy, and have been blessed with good health. I thought I could put this off for a long long time.

 

[Glen Swan]

Welcome!

Well, I think you came to the right place for information and support. Many members have been through the same or similar thing that you have or about to take on.

I faced a similar issue with everything being new to me in relation to my new born son. At only 11 days old, he was being rushed to surgery in order to have his narrowed aorta repaired. It felt like a ton of bricks hit me right in the face because he was so young and had so much more to experience.

Thankfully, we have loads of proven technology and best practices working for us. So, don't worry. Just continue taking the same steps you have been taking and many years from now you will thank yourself for taking them. I know I am because today, my son is doing amazingly fine. Surgery was just a short pause in his life in order to get back to the norm.

 

[pellicle]

Hi Blair and "Welcome"

I guess that the only thing I'd advise is to not get too worried, trust your medical team, and only learn about things for the sake of understanding. Personally I never felt I knew more than my surgeon did.

Trust that you're in good hands and relax as much as you can. In essence its a simple mechanism (even if it is a tissue one) and the treatment for the problem is well defined with good outcomes. So good in fact I understood that valve surgery was among the most successful medical intervention.

 

[Midpack]

Welcomed Blair!

There is something i dont understand. If your regular doctor just scheduled an echo, i assume you dont have a recent one. So based on what did he tell you that surgery may be soon?
On the other hand, you must follow this with a cardiologist. GP have, of course, a general knowledge about heart problems, but ONLY a cardiologist (or a cardiac surgeon) can tell you if surgery is needed or not.

Relax. You will be fine.

 

[epstns]

Hi Blair, and welcome to The Waiting Room - the virtual room where many folks await their own turns at valve surgery. I spent over 9 years waiting, and I think I know a lot about that roller coaster.

From where I now sit, just over 3 years post-op, the ride on that coaster looks a lot like the model developed by psychologist Elizabeth Kubler-Ross when she was describing what we go through in grief or mourning. She described 5 stages of grief:
1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

The sooner you can process it all and get to Acceptance, the sooner you can feel in control and able to get on with your life. If the roller coaster really bothers you, I suggest that you research Kubler-Ross' model to get the full description of each stage. I didn't look into this until after my surgery (my daughter works in the mental health field; she mentioned it in another context and I went on to research a bit), but in hindsight it is spot-on.

My usual advice to folks in The Waiting Room is that they do their research and make all of their decisions as soon as possible. That includes picking their care teams (cardio, surgeon, etc.), their hospital, their first-choice valve type, timing, etc. This information forms your game plan for heart surgery. Once all of the decisions are made to your satisfaction, all you have to do is to "work the plan." Just make up a calendar and do whatever is scheduled for the day. If there is nothing heart-related to do today, then you don't even have to think about it. You can "just" live your life until time for the next test, task or procedure. It may not work for every patient, but for control freaks like me, it worked just fine.

My valve issue was different than yours (I had aortic stenosis), but the decision and planning processes are the same. The goal of all the planning is to be able to maintain some semblance of sanity until it is time to report to the hospital to "get it done."

You've come to the right place. Make yourself comfortable in The Waiting Room, and ask all the questions you can think of. The folks here are like family, only better. We do not judge, and we have a lot of first-hand experience that we are very willing to share in order to help others get through the process and get back to their lives.

 

[Elgato]

Blair,
I am in a similar situation.
59, pretty good health.
Started feeling what could be symptoms just a little too often. Primary care doc detected the
murmur and referred me to a cardiologist. Found the BAV that no one had ever mentioned before.
"You will need surgery"

Total shock!

Performed
TCE
TEE
Angiogram
Carotid Ultrasound (Yesterday)
And soon a CT Scan

Basically need to move forward with surgery. The sooner the better.

I think the five phases of mourning really do apply here.

For me all the research on Doctors, hospitals, valves and procedures helped.

I am gathering all my tests and records for a second opinion. Not sure I really need it but it helps with
peace of mind.

A good book on the topic is Coping With Heart Surgery. Carol Cohan.

The people here have been great, and patient.

Good luck and keep us updated.

 

[river-wear]

I'm with midpack: how can your GP know it's time for surgery without an echo? Even with an echo they can be wrong. Don't panic yet.

Either way, the kind folks here will help answer your questions and offer support.

 

[big_L]

Your story was mine one year ago. Walked out of the cardio office in total shock. We'd been monitoring the valve for years and all of a sudden "it's time!". No symptoms, felt great, 54 years old. Wow. It's a tough time. This site really helped me, so you're on the right track.

This is such a bid deal for each of us, but routine for the surgeons and their teams. Hang in there, you'll be fine. We've all made it through.

 

[neil]

agree with steve on this one, you will do fine blair

 

[MrsBray]

There's a lot of really good information here, and a ton of support from people in the same boat. It's overwhelming, to say the least! Look around at the different topics, read a little each day. I joined a journaling website that I shared with my friends and family, but kept these forms to myself. This was my safe place, where I can ask questions that might upset people close to me.

Everything will be OK in the end!

 

[Blair]

Thanks all for the responses. It’s reassuring to hear from people who’ve been there and understand.

Midpack is right. It's too soon to know anything for certain. GP has been working with the cardiologist since he first detected the prolapse with a physical and echo. We do this every year now, although I've never met the cardio myself. That’s what scared me. GP said it was time, then cardio’s office called with appointments for echo (tomorrow) and consult on 31 st. I don’t know what GP based this on, as I was too stunned to ask questions. I remember him saying, ”Your heart is working hard. It’s time. I’m sorry.” Funny, it was the “I’m sorry” that hit the hardest. I don’t remember walking out of his office.

Steve, the 5 stages are on the mark so far. I just passed #2. Waiting for answers is hard. At first all I wanted to do was drive around. Looked for any excuse to drive to town, Home Depot, etc. That and reading on this site here was all I wanted to do. And I notice writing this response feels pretty good now. Someone said blogging would be helpful, but I don’t know how yet. Heck, I can’t even access the blogs here. I get, "To use this product the plugin system must be enabled." Tried 5 different computers in different locations with the same result. The webmaster doesn’t understand it either.

I like MrsBray’s journaling idea. It helps to write down what you’re feeling and going through.

Thank you all for responding to my post. Has been very reassuring.