what would you do...?

[Karen]

Last month my husband learned on the 28th of the month that his job would be eliminated effective the 30th. He was given one month's severance pay and health benefits through July. Therefore, I bumped up my annual echo and visit with my cardio that would have happened in October. I just met with him today and got the results of the echo done 2 weeks ago.

First of all, I know echo measurements of valve openings are not exact. But if I had 2 consecutive echo measurements with an aortic valve opening of 1.6 mc2 followed by a heart cath that also showed a 1.6 cm2 measurement (last October), would I believe the latest measurement of 1.9 cm2? Does the valve opening ever increase in size?

Other things of note on the echo report -- different from the one done in September:

"thickened" bicuspid aortic valve
"mild left ventricular hypertrophy"
"borderline elevated right atrial pressure by inferior vena cava

Other "impressions" that have been included in other echo reports are:
"mild increase in left atrium size"
"mild tricuspid regurgitation with velocity suggests mild pulmonary hypertension"
"mild mitral regurgitation"
"trace aortic insufficiency"

The ejection fraction was 54%.

My cardio feels that surgery is still years away. (And he said that just yesterday he returned from Brazil where he talked with cardiologists who had done the percutaneous valve replacement procedure. He speculates that it might be "commonplace" in the US in 3-5 years. He's definitely staying abreast of that future option. But he also speculated that it would not be used in replacing valves that have already been replaced -- at least not initially).

So do I let my medical insurance lapse, do the cobra thing, or take out a catastrophic medical plan? The catastrophic coverage costs almost half as much as what our cobra payment would be, but we would have a $5,000 deductible and a limit of $150,000. Isn't it much more difficult to get insurance if you have an "interruption of coverage?" Do catastrophic insurance plans count as NOT having interruption of coverage?

I should be reassured by what I was told today. But I remember stories of forum members who were told that surgery was 10 years away only to find themselves undergoing surgery 6 months to a year later...

Any feedback would be greatly appreciated. We need to make a decision regarding our insurance in the next few days. Thanks...

Karen

 

[Liz]

If you can manage the cost, I would definitely use the COBRA option to stay on group coverage. At the beginning of April my cardio was saying that surgery for me was 2-5 years away, by the end of April my symptoms had accelerated to the point where he said it was time to 'do the valve.' In the meantime I had left my job and gone on COBRA. I sure am glad that we had full coverage - OHS is $100,000+, and all I had to pay was a $500 hospital admittance copay.

Regarding your question about 'interruption of coverage', make sure that you get a complete and full understanding of how that works. One of the things that we learned in investigating the different options available to us was that we would have the option to decrease our coverage whenever we wanted to, but to increase coverage I would have to pass medical review. I would assume that with your health history you wouldn't be able to pass medical review.

Good-luck with your decision and with your condition!
Liz

 

[RandyL]

Sorry for your misfortune. I recently had to sign up for Cobra also do to layoff. My Cobra for me and my wife is expensive. $897/month. If you don't mind telling me what yours is, it just seems high to me. Thanks

 

[Debster]

Hi Karen! I am so sorry about your husbands job...I too would do the COBRA thing if possible. I am of the opinion that even completely "healthy" people need medical coverage, we are all a wreck, illness, or something else away from having a huge hospital bill! In fact, when my mom had her valve job she was under my stepdad's COBRA plan at the time. It was super expensive, like 700 some dollars a month-but between her surgery and stepdad's leukemia, it has been beyond worth it. Good luck to you... Deb

 

[ALCapshaw2]

In my 'non-expert' capacity, I second everything Liz said.

Before you do anything, get a complete understanding of what 'interruption of coverage' means and how catastrophic insurance fits into that picture.

"Even If" catastrophic coverage qualifies, I'd be inclined to take the Cobra Coverage and hope that you can get coverage through an employer before it lapses.

Good Luck and Best Wishes,

'AL Capshaw'

p.s. Your Cardiologist's prognosis sounds reasonable to me. A 1.6 sq cm opening is a long way from needing surgery. All those mild to moderate conditions just need to be monitored with regular checkups. If things start to change, increase the frequency of the checkups until you hit one of the 'triggers'. I recommend putting your echo results on a Spread Sheet for easy tracking and comparison.

 

[Georgia]

You need to take the COBRA - to qualify for "no interruption of coverage" qualification (to negate pre-existing condition requirements) it needs to be a group plan. And COBRA qualifies. Catastrophic plan generally don't.

Now - I don't know what the law is in your state - it could be much more consumer-friendly than the Federal law. But before you let go of your chance at COBRA (I believe you have 30 or 31 days to sign up after your coverage stops), get the skinny from someone who knows this stuff inside out - like a lawyer.

Incidentally, you do have that little bit of wiggle room - the one month thing - so if you think you'll get covered by another program soon, you can wait a little bit - if you get sick or something, just sign up for the COBRA and as long as it's within that 31 day period they'll backdate it to the day your coverage lapsed.

 

[Arlyss]

Look at the Aorta along with the Bicuspid Valve

Look at the Aorta along with the Bicuspid Valve

Hi Karen,

I am so sorry that about your husband's job loss and your health insurance issues. I do hope new doors will open for both of you. As others have mentioned I would encourage you to maintain health insurance.

I noticed that you have previously had a coarctation repair and also have a bicuspid aortic valve. In order to avoid any surprises from your aorta, you will want the entire aorta imaged. There are references in the literature that mention that a coarctation repair should be followed. In addition, you will want to know what is going on with your ascending aorta - do you have an enlargement/aneurysm there?

I am assuming you had the typical transthoracic echo. It will not see the coarctation repair site. Sometimes the tech will get at least part of the ascending aorta, but quite often the focus is on the valve and heart chambers only. Either a CT or MRI scans with contrast will look at the entire aorta.

The challenge for those with a bicuspid aortic valve is that usually the valve gets all the attention - but the aorta needs to be looked at too. The aorta is external to the heart, so perhaps that is why it often is so neglected.

Best wishes,
Arlyss

 

[Lisa in Katy]

The attached link has a great deal of info about insurance in Utah. It sounds like you have 60 days to decide if you want COBRA. There's also info about a high risk pool that might apply to you. http://http://www.healthinsuranceinfo.net/ut03.html

 

[Karen]

Thank-you so much for your replies...

Randy, I'm not sure the exact cost of our insurance, but it's under $800 -- about $750, I believe. We have 3 college students and our 17-year-old on our insurance, so your COBRA payment does seem a little high to me. But isn't the cost the same that your company had contracted for before you went to COBRA?

I don't see the likelihood that we will be getting insurance with a new employer. My husband is doing some business stuff with his brother -- it's just the two of them. A little risky financially, but I think that, especially because this situation is anything but secure financially, we need to maintain our health coverage as long as we possibly can. Liz, your comments are exactly my greatest fear. If I reduce my benefits for any reason, it's going to be very difficult to pass a "medical review" or whatever is required to get adequate coverage reinstated.

Arlyss, thanks for your comments. I read your posts and the articles you make reference to on the Bicuspid Valve Foundation site with great interest. A year ago my cardio agreed that a CT scan or MRI is the best tool in checking for aneurysms in the ascending aorta. But when we did a 2-sided heart cath in October, he looked carefully for any sign of an aneurysm and is satisfied that I don't have anything to worry about there. If I still have insurance next year, I'll ask him when it would be appropriate to look for any problems again. Please answer this question: How often SHOULD patients with these issues be screened for ascending aortic aneurysms? I did have an abdominal ultrasound in recent weeks and was told that the abdominal aorta looked good -- no bulges.

Thanks to all of you for your help. There's not another source of info and support that I would rather turn to.

Karen

 

[Karen]

The attached link has a great deal of info about insurance in Utah. It sounds like you have 60 days to decide if you want COBRA. There's also info about a high risk pool that might apply to you. http://http://www.healthinsuranceinfo.net/ut03.html

Lisa, thanks for posting this link, but I get a "This page cannot be displayed" message when I try to direct link to it. I'll play around with it later. I'm leaving EARLY in the morning to go help take care of a new grandson in Florida. Actually, I'm going to help his mama chase his cute 3-year-old brother since he was born via C-section a week ago... Today is a busy one getting ready to be gone for 10 days. But I WILL check into it. Thanks.

 

[RandyL]

Karen,
My cost while employed was $400/month for the family. Now it is $897/month for just me and the wife. If I would of elected full family coverage it would have been $1197. I had to just insure me and my wife at that price. I sure wish I knew how to check and see if I am getting the raw end of a deal or not.Seems crazy that it would be 3 times the amount with the same insurance company.

 

[Karen]

Karen,
My cost while employed was $400/month for the family. Now it is $897/month for just me and the wife. If I would of elected full family coverage it would have been $1197. I had to just insure me and my wife at that price. I sure wish I knew how to check and see if I am getting the raw end of a deal or not.Seems crazy that it would be 3 times the amount with the same insurance company.

Randy, I'm not sure how it works, but my understanding is that the employer usually pays half of the insurance (or some predetermined portion). So your cost WOULD be at least twice as much without the employer's participation. But it doesn't seem right that family coverage should go from $400 to $1197... It's so hard. 'Can't afford insurance, and can't afford to NOT have insurance!

 

[susieq14]

Karen,
I'm so sorry about your husband's job loss. unfortunately I've been thru a layoff and it is not fun. I have to echo what everyone else says. Please try to swing the Cobra coverage if at all possible. Being without health insurance today is very risky. Besides the obvious heart issues, one never knows what lies around the corner healthwise. Been there done that unfortunately! Within the last 2 years, besides finding out about my mitral valve problem, a few too manyother issues have surfaced. I would think worrying about not having insurance would add to your stress.

Good luck!
Susie

 

[twinmaker]

Karen, I'm so sorry to hear about your husband's job situation. I too, vote for the COBRA. I know it's expensive. When our last two children hit 22 years old (twins) and still had a couple of classes left to graduate from college, we had to put them on our COBRA plan because they were part-time students. I know it's expensive, but you can't afford not to have it. Even when you are healthy, things happen. And the catastrophic coverage with a limit of $150,000 isn't nearly enough for people like us with our medical situations. I've been in the hospital for what I thought were little things and because of our histories, I learned that there are no little things. Please try to swing the COBRA. I will be keeping you and your husband in my thoughts and prayers during this time. Keep us posted. LINDA

 

[Marguerite53]

Ditto every bit of advice given here. I just wanted to chime in and respond to your recent echo values. If it is any comfort, I was in the 1.9 to 1.5 range for at least 10 years, as that's as far back an echo as I could round up once I learned I had AS. That being said, it is not statistically factual, but it does seem that "once they start to go, they go faster". So if your "thickened valve" is not truly AS (aortic stenosis) yet, and all other values are in normal range (your EF sounds low, but don't quote me), it honestly does sound like you could have quite a bit of time. I obviously am not a doctor or even remotely qualified to guage your condition, but I am someone who had some mild thickening hang in there for a long time before it went downhill.

When I hit 1.0 (after years and years of 1.5) my cardiologist said at that point I had 1-3 years. I did make it to 3 almost exactly. (but frankly, I was so anxious to have the surgery over and done with, I think I may have willed it upon myself sooner!! ) And, toward the "end" when it hit .9 (that's .9 not 1.9) it deteriorated within 6 months to .4.

Sounds like you have breathing room, if there is nothing happening but the thickening. Isn't that a precursor to the stenosis (which is the disease) ?

Good luck. Breathe! Keep us posted.

Marguerite