ACA and CHD

As a woman with congenital heart disease, and likely multiple open heart surgeries ahead, health insurance and all the rules and regulations that go with it is going to be an important part of my future.  This past surgery cost over $100,000 and the bills are not even all the way in yet.  Thank goodness my family's has health insurance or we would be paying that amount.  Needless to say, having good insurance that covers my CHD expenses as well as other issues that arise is very important for me.  Its not just me either, but the entire community of CHD patients that this worry falls to, although every case and situation is different. With the new Affordable Care Act (ACA) things have begun to shift and the coverage and rights granted to us CHDers have been expanded.  However, with all of the back and forth on the politics side of the law many of these new regulations have become misrepresented, clouded and confusing.  I found myself overwhelmed when learning about the new ACA and wishing I could better understand what this law meant for MY future. After doing a little research I have a better idea of how my health care rights, and the rights of others, have been expanded and would like to share them here.

I'd like to share that this post is not intended to analyze the entire effect of the new health insurance plan on the broader United States, but rather to lay out the benefits and changes which effect men, women and children with congenital heart disease.  Each person is different and the best insurance option for some CHD patients is not the same for others.  I will not attempt to analyze the different packages, but rather focus on the rights which have been expanded. The Affordable Care Act ushered in some important changes which have created different rights and rules that help those of us with this pre-existing condition.

So what has changed?

Pre Existing Conditions
The biggie for CHD is the change in policy for people with pre-existing conditions.  Before the act those with CHD could be denied coverage or have much higher premiums.  However, now this practice has been outlawed.  Now you cannot be denied coverage because of any disease as long as you are not under an insurance plan in which you were grandfathered in (a non job related plan bought before March 2010).  If you have a child with CHD (or another pre-existing condition) the insurance company (as long as not grandfathered) cannot drop them from the plan either.  Under the Affordable Care Act everyone has a right to insurance!

Now, if you are an adult with a  pre-existing condition previously without insurance and are now looking on the Government Insurance Marketplace, you can sign up for a short term health insurance plan as you review the market place options. For more information visit: https://pcip.gov/

If you would like a more in depth look at how this system is projected to work check out this website:  http://kff.org/health-reform/perspective/the-numbers-behind-young-invincibles-and-the-affordable-care-act/ It is filled with a multitude of statistics, analysis and projections which can provide a window into this aspect of the ACA.

Up to age 26 you can stay on your parents plan

For those of us who are under the age of 26 and without health insurance of our own, we cannot be removed by the insurance company from the health insurance plan for any reason, no matter if we are a part of a grandfathered plan or not.  For more information: http://www.hhs.gov/healthcare/rights/youngadults/index.html


Summaries of the plan

If you are like me, reading any type of insurance document is extremely difficult.  While it is possible to apprehend the full meaning of the document, it can be tricky and important information can be missed or misunderstood. The new health care law attempts to lessen those items we miss or don't understand by requiring a list of terms used in the insurance form to be provided.  It will also ensure a summary of the plan in plain language is given to the prospective buyer.

Lifetime limits

This is an important aspect of the law for those of us with CHD, especially those with multiple surgeries and more complicated cases.  Under the ACA no limits can be placed on essential treatments as long as the health insurance plan was purchased or renewed after September 2010.  Additionally, annual dollar limits can not be placed on the insured as well. You have a right to be treated for the essential problems. More info: http://www.hhs.gov/healthcare/rights/limits/index.html

Preventative measures

This is an important section of the law for those of us with CHD.  There are often many complications which can arise with pregnancy, flu, pneumonia, illness, etc. and it is important that steps be taken to prevent these potential problems.  Although my poor little arm hates it, this means I, like many others, do not have to pay a copay or deductible for certain "preventative care" treatments.  As you can imagine, there are many different types of preventive care.  For a full list follow this link: http://www.hhs.gov/healthcare/facts/factsheets/2010/07/preventive-services-list.html

Now, this part of the health care law does have a few places where the right isn't always provided, depending on your insurance. Like the above mentioned rights, this measure only applies to those who have job related insurance or individual health plans purchased or renewed after September 2010. If you have a "grandfathered plan" (mentioned above) you may not be included in these benefits. There are a few catches with network providers and depending on how services are billed.  For more information on these restrictions see the following website: http://www.hhs.gov/healthcare/rights/preventive-care/index.html

and Finally, doctor choice and ER visits

Under the new law, you have the choice of your primary care doctor from a larger list of doctors in the area.  You can also be covered for Emergency Room visits to emergency rooms not on the list of hospital list for your area.  There are, like all of the above rights, cases were you will not be covered.  If you are grandfathered in or have not renewed your health insurance since September of 2010 you could run into trouble with this new rule.  For more information: http://www.hhs.gov/healthcare/rights/drchoice/index.html

This is an overview of the new rights insured by the Affordable Care Act.  Many of these will come in handy with different potential problems which could arise and will help ensure you are not overly burdened with the financial aspect of having congenital heart disease. Isn't going through the surgeries and stress enough?   My overview does not go into the extreme depth of the law and so I have included links below to different resources on the services provided, the mechanics of the new law and the actual law itself!  Again, this blog post is not intended for a political argument, but rather to provide insight into the rights now available to all US citizens participating in the ACA.


Helpful resources:

• http://kff.org/private-insurance/
• http://www.hhs.gov/healthcare/rights/law/index.html
• http://housedocs.house.gov/energycommerce/ppacacon.pdf (the law)
• http://www.cms.gov/CCIIO/Programs-and-Initiatives/Health-Insurance-Market-Reforms/Patients-Bill-of-Rights.html

Getting back to the new and better normal

Well I missed a post last night due to the snow apocalypse that hit the Southeast!  Yesterday I began preparing for my return to class and studies by coming back to Wofford for a few different meetings, etc.  I thought the snow warnings were just local media giving us southerners false hope and so headed to Wofford with little worry in my mind.  However, by the end of my time on campus I realized the snow was on its way and I was likely to get stuck in ice if I chose to head back.  A small part of me was just excited for the excuse to be back in the dorm with my roomie and besties for the night!

While I was away from my blog and stranded with very few "sleepover" necessities  (why I brought home all of my clothes, I am at a loss!) I spent the night going all around campus seeing friends, cooking meals, playing intense card games and winning the most epic series of catch phrase!  A few times I became tired, but easily bounced back and was able to hang out with everyone until we disbanded our festivities at 2AM!  I was amazed at how well I was able to keep up.  Walking around campus did not put me out of breath and stairs were not a problem any longer! I even ran a quarter of a mile around the track (in snow I might add), something I was not able to do before.  It is true attending class was not factored into the test trial of being back to Wofford, but after my day yesterday I feel very confident this semester will be a successful one and being able to keep up with classmates and friends will not be like the challenge of last semester!

Today I remain "stuck" at Wofford. Because my breastbone has not completely healed I am trying to avoid any potential accident or fender bender.  An airbag to the chest would not feel very comfy right now and I do not want anything standing between me and being back to my new and better normal.  The little snow day get away has turned into a heart test drive and I am pleased to say I feel I passed the test! This girl is ready for the next few months of crazy adventures and intellectual pursuits with her new and improved heart!

Six and a half weeks update!

Hi everyone! Just a quick update on my newfound freedom six weeks post OHS.

Climbing to New Heights

As I prepared for the surgery I frantically asked my fellow Zipper Sisters (on the Facebook Zipper Sister page through ACHA) about what I should expect after the surgery and attempted to research every single little possible side effect that could come up.  Preparing for surgery is a nerve wracking thing because you have no idea what condition you will come out in on the other side.  Even tons and tons of research verifying that you will be OKAY does not necessarily sink in until after all the stitches are in and you wake up in recovery.

Before surgery one of my worries was elevation and pressure change.  I am huge fan of hiking and the mountains and my family often travels up the road to a nice cabin where we adventure around the area.  We also had tentative plans (now postponed) to hike the Himalayas this summer. So naturally, the idea of elevation effecting my heart function and personal health worried me.  I read stories of women feeling discomfort and having increased palpitations etc. at increased elevation and was nervous the same would go for me after the valve replacement.  

Well this weekend I put my fears to the test!  My family and I traveled up to our cabin for a weekend get away (praying for warmer weather which never came) and I prepared myself to test out my new heart again.  The car ride up caused no issue for me and when we arrived the pressure had no effect on m heart at rest.  As the temperatures rose to a toasty 30 degrees my sister and I ventured out to check my heart in higher elevation while active.  I worried it may be harder to breathe with hills and was unreasonably nervous a problem would occur. However, after spending over an hour climbing up steep hills, running around and exploring the area I put my fears to rest for me and my cow valve had no trouble for the remainder of the weekend. 

My experience ended the fears of elevation change's effects on my heart.  While the height was not as tall as the Himalayas and the pressure not the likes of an airplane, it is clear that the effects on my heart will not be excessively troublesome for me and my valve.  I look forward to the future adventures and am excited to continue to push the limits and explore what my mended heart will let me do!

Back in the Drivers Seat of Life

The first thing I did this morning after shoving down a quick breakfast and taking my daily aspirin regimen was jump in the car and head off to my celebratory hair appointment.  No, I did not take my usual seat on the passengers side, I finally jumped in the drivers seat and grabbed hold of the wheel, speeding off in the direction of my lovely hairdresser. It felt wonderful to have full control of my day and know that I was responsible for where I went and when I arrived. While there was very slight discomfort at first, the soreness in my chest as I moved the steering wheel disappeared as I got closer to my destination and by the end of the day driving felt completely normal again!

Don't worry, I was not breaking any rules.  Today marks six weeks since the day of my surgery and coincidentally is the day all of my restrictions are lifted!  This girl can now do whatever her body will let her do...well besides extreme sports, I don't think the Olympics are calling my name.  At my last appointment with the surgeon and cardiologist I pestered them about what I needed to watch out for activity wise and what my limitations are.  For these next six months I am not allowed to lift over 40 lbs (sorry folks, I can't move in your new furniture) but otherwise I am free! This means that tomorrow I will get up and try to get my upper body back in shape.  I will be going to a work out class to start restoring my muscles (don't worry, I will take it slow).  Then, I will head to the mountains to work on walking in elevation and attempt to improve my endurance.

Beyond working my body back to health and taking back full control of my life, six weeks marks the time when I can start to address my scar.  I am very proud of the new scars I have, but will be trying to fade the purple hue around each over the next few months so they can complement my outfits quite nicely. While I will always wear my zipper proudly, I'd like it to look like a flattering battle scar rather than grape jelly smears.

Before the surgery I talked with other women who had gone through OHS and worked to improve the color of the scars.  Per their recommendation I will be using a treatment "Scar Away" (you can purchase at CVS for $20) for my larger Zipper and Vitamin E cream for the smaller drainage tube scars. Tonight I will start my treatment regimen and will be updating this page occasional on how well the product works.

Today has been a wonderful day. I finally feel free and am no longer scared of harming my breast bone.  After the great news from the doctors last week, and this new found freedom my mood could not be better! What incredible opportunities I have in store now that I have my life back. My period of dependence is up and today I happily took on a new load of responsibilities and new opportunities! Watch out world, I am back in the drivers seat of life!

Back on the Track!

Back on the Track Victory Pose!

Today I hit up the gym again to work my endurance and muscle mass back up to where it was before the surgery.  This is something I have been working on for the past few weeks (you can see my previous posts for more in depth summaries).  Now that my energy level has shot up it is becoming easier and easier to sustain longer work outs and work on increasing endurance.  Each time I start the session I set personal goals for myself (running this far, making this many laps or walking for this or that amount of time) and I try not only to reach those goals, but to surpass them.

However Building up strength can be frustrating because feeling in shape
does take a bit of time.  For the first few workouts I was surprised by how out of shape I was. Who would have thought not doing anything for approximately four weeks would make you a tad bit on the slow side?  As I exercised during week four and five I felt limited and was worried that I was not going to feel better after the recovery was deemed over. But today things changed!

I have been pushing myself each day to beat my goals, but what made today different was my goal was higher than what I was able to do before the surgery.  If you take a look at November's blog post "So what are the symptoms?" you will see that I was only able to go a mile with very little running.  Throughout the entire walk/run I was completely out of breath and by the end felt extremely tired.  Today, I set a goal to jog at least .2 miles (more than I was doing in that video) and today I beat that goal!  I jogged for over half a mile and walked the rest with very little heavy breathing!  It was AWESOME!

To me, the most wonderful thing about this surgery is I have learned what used to be "I can't" is now "I can! "There is nothing but my personal ability to get in the way of my new goals.  No more intense out of breath breaks due to blood leakage in my lungs.  No more excessive pumping for something that should take half as many beats. My heart is functioning CORRECTLY! Can you tell that I am excited?  Today I finally understood what this treatment means for my future.  I am back on track (literally) and now fully equipped to be the totally healthy person I am.

The Heart of the Matter

As I mentioned in my last video post, the appointment with my cardiologist on Friday went very well. The news was great and I was told that my heart was in perfect condition.  This all took place after I had an echo to see the progress my heart has made.

 If you have not had an echo before, I will fill you in on a secret, they take some time and if you are like me, the best way to kill time is by chatting it up.  My echo technician and I had a great conversation about my valve and after discussing my blog with her, she pointed me in the direction of some reference materials to learn more about it!  Our conversation revealed that prosthetic valves, bio-prosthetic valves in particular, are quite complex and there are many options out there.

The entire conversation was sparked when she pointed out that my new mitral valve had three leaflets instead of the two in normal mitral valves.  I did not expect there to be such a difference in the valves.  As we continued discussing the new addition to my heart I realized the complexities that go into creating a bio-prosthetic mitral valve and into the decision process as there are many different types to choose from.

Since our discussion I have followed her advice and looked a bit deeper into the world of prosthetic heart valves and while it did take the use of a scientific dictionary, I learned lots that I will share here!

Firstly, there are many different models of bio-prosthetic valves each varying in size, material, leaflet number, etc.  These factors play into the varying sizes of their hosts and their hosts hearts, as well as blood flow (if you decide to research yourself, this is a simplified definition of hemodynamics) age, ability to use coumadin and the list goes on.    One diagram I found intriguing and helpful with relation to the types of valves shows different models of valves and the materials that go into them.  It is provided by the American Heart Association's website: http://circ.ahajournals.org/content/119/7/1034/F1.expansion.html and inserted below:

As per the website above: 

"A, Bileaflet mechanical valve (St Jude); B, monoleaflet mechanical valve (Medtronic Hall); C, caged ball valve (Starr-Edwards); D, stented porcine bioprosthesis (Medtronic Mosaic); E, stented pericardial bioprosthesis (Carpentier-Edwards Magna); F, stentless porcine bioprosthesis (Medtronic Freestyle); G, percutaneous bioprosthesis expanded over a balloon (Edwards Sapien); H, self-expandable percutaneous bioprosthesis (CoreValve)."

My valve is made from the cows heart (it is a bovine valve).  Interestingly, it is made from tissue of the cows heart, but not its actual valve, unlike the porcine valve which comes from a pigs aortic valve. The companies that create these prosthesis use the biological materials and enhance them with man made features including stents and special coatings which ensure the longevity and strong function of the valves.

The surgeon and his team analyze the options for each patient, increasing the chances for a successful replacement. Thrombogenicty (blood clots caused by the new valve) and PPM (prosthesis patient mismatch) are two of the main concerns when choosing a valve, and the person must fit well with the choice in order to decrease these risks.  Because of our amazing doctors and the incredible advances in technology, this is something managed very well today and should not be a major worry.

If you are interested in learning more about bio-prosthetic heart valves, I recommend the following websites which were able to provide helpful information to me as I researched this topic:

• http://emedicine.medscape.com/article/1971075-overview#aw2aab6b3  (A general overview, with different  bioprosthetic valve production companies referenced)
• http://circ.ahajournals.org/content/119/7/1034.full#sec-1 (An overview of the different types of prosthetic heart valves)
• http://circ.ahajournals.org/content/119/7/1034/F1.expansion.html (A helpful chart included above)