Would like some insight :)

[lynn]

Hello all,

I've been lurking around and reading some of your threads and find this is quite a group with alot of expertise/experience I am feeling stuck here so let me explain my situation.

About 8 years ago I got the diagnosis that I had a bicuspid aortic valve (after years of everyone telling me I had a *click*), that Cardio told me at that time that I wouldn't have any problems until my 60's/70's. Two years ago I had an echo done and a different Cardio said "need to have one every year" and then they forgot to send me a card. Last year my husband quit his 23 yr. career and went out to do something he wanted to do with his life. We got 1 year of insurance in the deal and when we went to get insurance, I was denied because of my BAV. Well, since it was quite a stressful year and the Cardio sent me a card to get an echo this year, I did.....then the call came He tells me that my stenosis has moved from mild to moderate and I have 1-7 years before I need an AVR (by the way I'm 43). Well, that was a shocker because I thought I had a good 20 years and I thought these palpatations and shortness of breath (sometimes) were just stress.

We did get 6 more months of Cobra insurance for me and my husband asked the cardio if we should get the AVR done before my insurance runs out. He doesn't seemed concerned (the doc) and I feel like a walking timebomb. He mentioned (and it's a blur to me) that to get the operation done you have to be a 0.7? and I'm a 1.something...can anyone tell me what that means? I know I sound like I didn't get the story but we are dumbfounded and dazed and feeling a little pushed to get surgery, yet not wanting to get it done if it's not bad.

Couple other questions...who's going to insure me, YIKES? Do I get a second opinion and how do I find a good doc to go to? And, has anyone here had this procedure done in Florida, where?

Thanx so much for listening....it's a big help!

 

[Johnny Stephens]

Hi Lynn, welcome aboard.

I'm sorry to hear that you're having difficulty, but you're asking the right questions. The question of "When?" to have the surgery is common to all of us...usually there is a decision to be made in the area of balancing risk. In other words, should they operate now while you're healthier and able to recover quicker, but thereby exposing you to all the surgical risks? Or do they wait until you're symptomatic? This is something you will have to work out with your doctors...there is no right answer for everyone. For me, I acted on surgery much sooner than my cardio would have (but he didn't stop me either.) This turned out to be good because once they got inside, they found that I was much sicker than they thought.

The .7 refers to the effective area of the aortic valve when it is opened. .7 cm^2 or so is the transition into the very restricted or tight range where your heart function begins to be impaired, possibly causing irreversible changes to the heart muscle if it goes on too long.

My best wishes for a resolution you are comfortable with.

 

[Nancy]

Hi Lynn-

Welcome to your new group of cyber friends. We all get it as far as this surgery goes.

I think there is whole protocol for planning the surgery that most doctors adhere to. I also think it is a combination of the test findings and your symptoms. To operate before it is necessary would most likely put the cardiologist and the surgeon in legal trouble. So, your cardiologist is following you very closely right now, because he sees a change in the findings, but it doesn't seem quite right to operate just yet. How long it takes for each individual to get to the right time for surgery varies from patient to patient. You could always ask for another opinion and it couldn't hurt to ask for a surgical consult. Echo results can vary a little, so that is also something to think about. Maybe you could have a repeat echo.

You are in a tricky situation. There are some members here who are very astute when it comes to insurance matters. Maybe they will shed some light on your problems.

Wishing you the best.

 

[lynn]

Thank you both, your answers have been a big help in calming me down a bit

 

[LUVMyBirman]

Hi Lynn,

You will not have an issue with insurance as long as you never let it lapse. You can roll from one policy to the next with a pre-exsisting. I have been with 3 different carriers since my MVR. Twice on Cobra too. The law states that the 'next guy' (insurance carrier b,c,d, etc.) has no other choice but to cover you. As long as you can prove to them you never lapsed. An excellent document to keep with your medical records would be the certificate of insurace. You will receive this document upon request at the end of your policy term.

If your cardio is pleased with your current status. Has run the appropriate diagnostics to back up his diagnosisi. I would run with that news!

 

[hensylee]

Gina's ins information sounds like what everyone else has said in the past - so be sure to take heed on this issue.

Sorry you are going to be forced to be a member of this club, but since you must, this is a wonderful spot to be - the folks in here are all lovely people and stand by you all the way there and back. Welcome to our heart home. God bless

 

[srwieland]

Hi Lynn,

Welcome to a great bunch of heart buddies!

I would never determine treatment, especially surgery, according to my insurance situation if I didn't have to. Rather, I would first let the professionals determine (and I would definitely encourage second and even third opinions in this regard) your medical needs and when it is time for surgery, and then I would do whatever I had to do to get my insurance together to cover it accordingly. In this regard, I think Gina's advice is best, somehow or another, don't let your insurance lapse.

Now is the time to get educated about your condition, both from general sources and specific ones such as your doctors and experience shared from this website and other 'support groups'.

Pretty much everyone has gone down this same path; initial alert of condition, indication that the condition is worsening with age, and then notification that it's time to do something about it. Usually you can prolong the need for surgery with medication and some life-style changes.

But, of course, everyone's case is different, and you must get specific and multiple attention to your condition as much as you can now so that you can determine for yourself how to proceed on all fronts.

In any case, everyone here will be glad to help you however we can and, above all, empathize as only those who've already been through it can!

Good luck and God bless.