Tuesday, September 16, 2014

My Heart has Wings - Going Abroad and the Heart News Here, There and Everywhere in Between!

Well, with the end of the summer and the start of a new semester, I feel it is time to update the blog with a summary of my adventures and the role my heart has played in my life recently!

This summer, after the wonderful hike in the woods with Ryan, my family and I ventured across the ocean and headed to Greece and Italy for six weeks of exploration, discovery and fun!  As part of a my father's sabbatical, we toured the two beautiful countries, absorbing food, culture, food,wine, hiking, wine, food, monuments, art, food, wine, religion, food, wine...and did I mention the food and wine?  It was an absolutely amazing time!  With my newly repaired heart I was able to do so much more than I could ever have imagined!  To quantify the progress I was making, each day I recorded the number of miles and steps I walked via a handy iPhone app. Each day we walked at least 10,000 steps (5 miles), though often more. It was mind blowing to imagine how difficult that would have been just months before. Still, throughout the trip sometimes I would have more trouble than my family members and it left me worried. Especially after our arrival and on days following nights with little sleep, exercise and stamina would be lower than I anticipated. Compared to before surgery, I was doing excellent, but exercise was still challenging when those days were combined with long, hilly hikes in the countryside.  

After returning from the amazing trip with a very happy belly and a newly acquired palette for red wine, I prepared for my follow up cardiologist appointment.  I was slightly worried that maybe my artificial Mitral Vale was no longer effective or had decreased in function and I wanted to verify all was still working properly. So, in mid July I headed to Atlanta to meet with my doctors for another Post-Op follow up and to make sure my Mitral Valve was still doing its job!  Following an Echo with a very kind Echo Technician, my doctor arrived and calmed my fears. The results of the Echo showed my Mitral Valve was still in great condition and pumping blood as effectively and efficiently as it had when it was first installed. However, My cardiologist informed me that my Tricuspid valve now had a moderate leak. This was an absolute surprise for both myself and my mother, both of us having thought I only had two problems, an ASD and a cleft in my mitral valve.  The appointment ran a little longer as my doctor explained this, new to me, situation and calmed my fears. 

So, finally, a full discription of my defect!  I was born with an ASD (a hole between the Mitral Valve and Tricuspid Valve.)  To repair this defect my original surgeon installed a patch to cover the hole and then repaired a small cleft that was left, due to the defect, in my Mitral Valve. While there was more an effect on my Mitral Valve, the ASD also negatively impacted my Tricuspid Valve. While it has been in wonderful condition for may years, only having a minor leak, it has deteriorated slightly, but not dangerously or significantly.  It will continue to function for a long time more before I need surgery to repair it as well. We anticipate that when it comes time to replace my Mitral Valve again it will also be an appropriate time to repair the Tricuspid Valve as well. In the meantime, I will probably not show symptoms for a while. When I do, they will be different from the symptoms I experienced from my Mitral Valve.  In addition to fatigue and/or possible weakness, I could potentially experience a swelling in my legs, feet and abdomen. Blood does not leak back into the lungs by this valve and so it will have little effect on my breathing ability. Still, for now this is not causing significant problems and I severely hope it continues with that trend!  

However, after all of our discussion, my doctor reassured me that I should not be feeling much, if any, additional fatigue from this leak.  The higher levels of fatigue I experienced throughout our exploration of southern Europe in comparison to my siblings and parents was primarily due to the fact that Dr. Kogan hit the reset button on my heart  only a few months ago.  My heart hasn't had time to completely rebuild its endurance in just a few short months and I'm still recovering the strength I lost during the surgery and those six weeks following. With time and continued exercise I will continue to build my endurance up, but in the meantime I must be patient with myself and realize that I am not Olympian and I have not been training for a marathon, I had Open Heart Surgery instead.  

SO! Going forward, how does my experience this summer and the new-found news of my heart health impact my daily life and how will I continue to improve my stamina each day?  Simple. Try exploring Europe some more!  This semester I am studying in the south of France, where delicious food and wine is all around and opportunities for not only 10,000 steps a day, but extra time for numbers closer to 20,000 are ample! In these next four months I will continue on the road to recovery and each day work to increase my endurance and ability by walking, exploring and enjoying the new lease on life my most recent heart surgery has provided. No, my abilities are not yet like Michael Phelps and extremely active high school-ers like my younger sisters, but they are superior to those I have had in a very long time. With each new day, and my continued daily hikes around different locations in France, my abilities will continue to evolve and open doors to physical possibilities I never could have imagined. 

A few photos from my European adventures past and present: 

Saturday, May 31, 2014

Hiking Up the Hill of Recovery

I'm not sure if I have shared my CHD discovery story on this blog yet, but this past week it has become relevant and so I will share here.  As a child, I was told I had two defects, Atrial Septal Defect and a cleft in my Mitral Valve. Both were repaired by Open Heart Surgery when I was 18 months old and the impression my parents received after the surgery was that I was cured. While I would need yearly (later turning into every three year) appointments, my family and I had come to believe I would not need surgery again in my youth, and if I did need surgery again, it would be 40 or 50 years into my life. Living under this idea I experienced life to the fullest, playing church basketball, mountain biking, dancing, singing... you name it, I tried it (although normally with very little skill). Still, I loved being active.  Under this mindset I agreed to go hiking six miles with a sorority sister last summer, the summer between my freshmen and sophomore year of college.  It had been ages since I had gone on a hike and the opportunity seemed like a great chance to get to know my friend better and enjoy the beautiful summer nature.  We started the hike together and everything was normal, but by the end of the walk I could barely make it 100 feet before I had to stop, rest and try to catch my breath.  I felt like I couldn't breathe and worried I was having a serious asthma attack.  When we finally made it back to our cars I gave my mom a frantic phone call and we decided to try two doctors: the allergist and the cardiologist.  While worried about the episode, I felt certain it was more related to being outdoors during heavy allergy season in combination with exercise induced asthma and not using an inhaler before the trek. However, after the allergy appointment proved I had very few allergies it became a bit more nerve-racking and at the fateful cardiology appointment the seemingly unlikely truth was realized: my heart was no longer working as it should.  That appointment was a catalyst to many subsequent ones and finally led to my surgery in December.

Since then, as you've read, I have been on the road to recovery.  Each day, week and month offering new abilities and opportunities, blessings and gifts.  This past week, with school behind me and my lovely boyfriend in town, it seemed like the perfect opportunity to continue further up the trail, and take my first hike since my diagnosis and the surgery. For me, it marked an important occasion.  I was finally going to try the thing which I had most obviously been unable to do before the surgery. It was one further test to prove my newly fixed heart was up to the life I wanted to live.  Alert with the giddiness of adventure, my boyfriend Ryan and I set off to hike through Paris Mountain.  We started on a simple, very flat, lake trail.  By the end, both of us were yearning for more adventure and so we proceeded to the next trail, the Turtle trail.  Then, realizing we were craving just a few more hills (probably more honestly, we yearned for more time to chat in such a beautiful setting) we continued onto the Sulphur Springs Loop.  In all, we hiked approximately 4 miles.  Here and there I would call for us to stop and take some breaks, but compared to my hike last summer,my energy levels and breathing were incredible.  I never made it to a point where I felt I could not go on, quite the contrary!  As we continued onto Sulphur Springs Loop an amazing amount of energy surged through my body, something I had not experienced before the surgery.  Every step was energizing and I couldn't help but continue on my energy kick.  The only thing that forced us to leave the trails (well... our feet were aching a bit) was our stomachs begging for food as it was nearing 2:00PM.  By the end of our adventure, smiles were plastered on both of our faces. Between the hobbling from blistered feet, we celebrated the incredible day and I was overcome with joy that through the surgery this activity was now possible.  My heart had passed the test. I could now do something not previously possible, as proven by the hike with my sorority sister last summer.  To me, this adventure proved my heart, at least for now, is prepared to pump me through my goals and dreams ahead.

While this surgery is not a permanent fix, it has given me a new lease on this incredible life finally evidenced by my hike with Ryan. I am alive and filled with new-found energy that has allowed me to complete all these ventures over the past few months, including my most recent undertaking.  I've been blessed with absolutely amazing friends who are willing to participate in my CHD recovery journey. To share on such an important venture with Ryan was an absolute gift.  I was able to combine the new energy from my heart, and the developed friendships I've experienced through this surgery ordeal.  Hiking up the hills in Paris Mountain I have reached a new height in my recovery.  With only 11 days left until my sixth month's OHS anniversary, I am hiking to a new level of potential possibilities.  I can now confidently attest that I am ready for the new and improved trail ahead!
Ryan and I during our hike at Paris Mountain

Saturday, April 19, 2014

Re-understanding My Life with CHD

This past week I had a follow up appointment with my CHD Cardiologist in Atlanta.  The appointment was scheduled to reexamine my heart and the palpitations I've been having. These are considered fairly normal after surgery, but they just wanted to make sure it was due to the recovery and not atrial fibrillation (results to come later this week or next).  The appointment was not meant to be a difficult one, but as we talked more about my heart, its state now (absolutely FANTASTIC) and its well-being down the road,  I was forced to confront the truth of my heart defect once again.  As I am feeling so wonderful and full of life right now, its hard to realize that come many years from now, my valve will again decline in function. I'm hopeful this will be closer to the age of 30, 35 or 40, and not sooner, but as we discussed its future decline in function I realized how much I want to pack into my life between now and then and how as a person with CHD, I will need to prioritize and organize my time so that my heart wouldn't get in the way of my dreams.  At the same time, I was forced to recognize that while I want to be married to so many dreams, I can't let planning get in the way of living my life to the fullest.  Thankfully my dad came with me to the appointment, because the overwhelming sense of what it will mean to once again prepare for surgery down the road just flooded over me.  At first, it clouded my ability to the recognize the current opportunities and future abilities I have because of my most recent surgery.  However, after talking with my dad about the realization I started to work through the anxiety and get back to the truth of my life with Congenital Heart Disease.

He reminded me of how I felt before the surgery, and the complete and utter transformation I experienced almost immediately coming out of it.  While physically it was tough at first, emotionally I was in a completely new and better place.  Then, as soon as the six weeks were up, my stamina began to shoot through the roof.  While lacking in the ability level, energy wise I felt like an Olympian!  I reviewed my blog posts and reexamined all that had happened since the surgery.  I saw and relived the transformation I had experienced over these past few months.

As my dad and I discussed the changes from before and after the surgery, and how much had gotten better for me just in the past few months, we came to the conclusion that no matter when this next surgery is, and what struggle I have to go through to make it back to the healthy side, I will get there.  This whole heart surgery thing stinks, but its my life. Its my normal.  Some people may see it as a roadblock, and coming back from this doctors appointment I saw it that way as well, but I've come to realize its not a roadblock, its my life.  Because of my experience and my condition, I will have the incredible opportunity to truly recognize the value of the experiences of my life, finishing school, traveling the world, driving my career, being a part of a family, growing older, etc. as I am living them.  I've lived this way unconsciously since the surgery, but thanks to this appointment and the conversation with my father, I now see this truth in my life.  Congenital Heart Disease, while in some ways a big hassle and limiter of my life, is also an incredible gift.  No matter how long my life is, and what all is stuffed inside of it, I am and will always be grateful for it.  I can see the true value of my experiences and realize what an immense blessing they are.

So, after coming to this conclusion, I looked back on the week I had before the appointment (it was Spring Break and a big milestone in my recovery process).  I got the opportunity to travel 8 hours away from home, separating myself from the comfort of knowing if there were an emergency my parents would be right there. I was forced to let go of any hidden fear of a recurring problem and just embrace life.  I spent the entire week with friends, soaking up sun at the beach and showing off my hot, new scar (with Zinc Oxide SPF 50 of course!).  Over the trip I got the chance to walk multiple miles up and down the beach, soak up the sun with friends, jump in the EXTREMELY cold ocean (its a miracle I didn't get a self induced heart attack!), kayak 6 1/2 miles, hang out with a wonderful and incredible boyfriend, throw the football around, go on crazy adventures with my girlfriends and much much more. These experiences were a huge blessing.  Just three months ago they wouldn't have been possible, and before the surgery the energy required would have been immense and stressful.  But not now.  I have been blessed with the ability to recognize and celebrate my life to the fullest.  Despite my condition and the future ahead, I will always have this feeling of gratefulness for my experiences and no matter what ends up fitting into this one and crazy life of mine, it is a wonderful, incredible gift and I will do my best to enjoy every minute of it.

Some photos from my adventures these past few weeks:

Monday, March 31, 2014

Living Life to the Fullest in March

I thought I was busy last month, coming back to a bunch of snow and having fun, exciting birthday adventures, but things have gotten even CRAZIER!  I would not have thought it possible!

So I will take this post to give a big update with how things are going now that I am 3 months and 19 days post op! (WOOT WOOT!)

My energy level has continued to shoot up.  I've noticed a considerable increase in my abilities, even since my last post.  Even on 6 hours of sleep I am able to go through my day considerably functional (something that was not possible without a cup of coffee last semester). With the increase in my energy level I have been able to do more tasks.  Biking around campus is continually easier.  In my P.E. class I have been able to improve the number of push-ups and sit ups I can do! I am getting my body back in shape!

There is still a bit of "pain" in my chest. Its more like soreness and I think most of it comes from my morning fitness class.  Some of the activities require me to stretch my arms straight behind my back with weight. While push-ups do not bother me, these exercises do and cause a bit of soreness the next day. (No worries, I have discontinued the exercise, but thought important to share here).

In regards to campus activities I have begun to get more involved physically as well. With my fellow classmates I cheered my Wofford Terrier Basketball team on in Asheville as they beat WCU in the SoCon Championship (jumping up and down so much I got out of breath and lost my voice!) I then joined in the cheers as we put up a great fight against Michigan in the first round of the NCAA tournament.  Then, a few weeks ago I competed with my sorority in a Panhellenic "Lip Sync competition" (We won of course! :D)  While I was not on stage very long, I spent the entire rest of the 6 minute routine jumping and screaming on the sidelines with my sisters (quite the cardio if you ask me) and was completely able to keep up.  I also participated in the "fountain challenge."  This is a challenge going around college campuses which requires those tagged in the viral Facebook post to jump into a freezing cold fountain within 24 hours of being tagged. Of course I had to get in on the fun and jumped in when I got the chance!  No hypothermia or infection, but such a blast!

Academically and extra curricular wise I have gotten back in my old groove.  Continuing off of my work last semester, I have continued to evolve a professional development program for collegiate women on my campus. Last semester I created a society, the Purple Scarf Society, and much of this semester has been devoted to pushing it through to success.  Last week I got the chance to compete against five contestants before a panel of highly successful business women and men in their perspective fields as well as 150 members of an audience and pitch my organization to the entire room. In addition to making great connections and spreading the word about this project, I got second place in the competition which included $1,000 for my project and an office in downtown Spartanburg!

Emotionally things are ten times better than last semester as well.
I took time this weekend to look over my old posts and get a feel for how things have changed.  Before the surgery the daunting fear of what could go wrong, of the pain, of the closeness with mortality, of you name it, drove me into a really tough place. That is part of the surgery preparation for most people with CHD on their way to having OHS.  It is tough to anticipate something so big and so life altering without feeling incredibly stressed and hopeless. Add to that the feeling of being handicapped and bound to nap time and you begin to feel as if you are trapped in a pit of unrelenting hopelessness.  Feelings of desperation, abandonment and utter sadness defined much of my last semester. While I tried to mask them and put on a happy face, they came out in the quiet of my room or in my conversations with family.  I was very excited to be treated for my condition, but the nerves and anxiety often tried to cloud that optimism.  In case you didn't notice when you looked through my blog, these feelings changed immediately.  As soon as I woke up from surgery a new excitement took over (quieted a bit by the grogginess caused by all those drugs, but still there).  Some days of recovery were still tough as I was still pretty weak compared to my friends and also bound to a couch, but for the most part I could see the opportunities the future held and no longer worried about impending doom with my surgery. It was DONE! Now, with even more distance this sadness has completely disappeared.  Sure, some days I may be grumpy, mad or sad about a test, an argument with a friend, etc. but these are ordinary, not life altering bumps in the road.  The huge weight has gone and in its place a multitude of new experiences and opportunities!

The difference between last semester and this semester is HUGE.  I am so thankful to the wonderful friends in my life who were there for me throughout the entire process and who continue to celebrate this new lease on life with me this year.  Next week is Spring Break (praise the LORD!) and I will be going to the beach with friends to tan (Adding a bit of Zinc Oxide to my scar so there will be no burning that new skin!).  Its going to be a great time to be a normal, ordinary college student enjoying showing off her brand new scar! I look forward to making great new memories and adding adventurous tales to the larger one of my surgery! Look out world!

Thursday, February 27, 2014

Jump Rope for Heart

Growing up in the public school system meant every February my elementary school would hold a Jump Rope for Heart marathon for the American Heart Association.  Each time we held the event, all grade levels would get a chance to visit the school gym, grab a jump rope and hop around for the benefit of those with heart disease.  As a kid with a fabulous heart surgery scar down my front, I loved this time of year!  I was raised knowing I was fixed, but by hopping I felt I could empower others who had not yet had that good fortune.  When it was my turn to jump to my hearts desire, I pushed myself to get a bajillion jumps in (often falling short) to make an impact on the organization and to show myself and others what it looked like to be fixed.
I was reminded of my Jump Rope for Heart days this past week in my fitness class. For our cardio portion of the workout we jump rope for varying amounts of time. As I hopped around in class Thursday, feeling like a little kid again, I reminisced on these old fundraisers.  I realized how much had changed, and how much had stayed the same.  As mentioned in my previous posts, this past year has shattered the belief I was fixed, but it has not destroyed the spirit of the crazy, little jump rope girl from my elementary school days.  Jumping rope in fitness class this February has re-instilled the crazy, spunky attitude towards heart disease I had as a kid.  Now I know more about the disease and how it pertains to me.  While I am not jumping for a fundraiser, I've realized I am jumping for awareness.  As this February comes to a close and the American Heart Month finishes I celebrate the gift I have been given, and jump for those who have yet to be healthy enough to jump alongside me. 

Saturday, February 15, 2014

Dancing, Sledding and Working to a New Beat!

Well, it has been a while since I have uploaded a post!  Now that I am back in action at Wofford there does not seem to be enough time in the day to accomplish school, work, projects, homework, blog, fun and rest. Still, I am loving every minute of being back! The difference in my health from last semester to this semester is insane! Now that I have returned my Wofford routine I finally see the immense improvement. Unlike before, I can now sustain my energy and upbeat attitude through the entire day without long breaks for naps or rest.  I've already run a mile on the treadmill, something I was not able to accomplish before surgery, and am back to working out twice a week in my personal fitness class. For the most part, I can keep up with my fellow classmates! Its crazy!  

These past two weeks have been awesome.  As stated above, I am back into my routine and finally back with all my friends!  Now that I'm able to keep up, we have had some pretty exciting adventures.  In case you are not aware, there is never a dull moment at Wofford College.  The school has an energetic atmosphere and the spring semester is packed with fun events almost every other weekend.  If its not a school sponsored event or sorority outing, my friends and I will plan a fun adventure and seize any spare moment not taken up with school or extra curricular work.

So this week was JAM PACKED with fun. Tuesday was my birthday and my incredible friends decided to throw the most amazing surprise party. I knew something was going to happen, but none of my guesses came even close to the fun night we had.  For the back story, I love Zumba.  No, I cannot dance (I did not inherit coordination from either parent) but I absolutely love pretending I am jamming like a cool kid to the hip music blaring around the work out room.  My Wofford Family knew this and so organized a surprise Zumba party for night of my birthday.  I was decked out in neon as were my friends (superman even made a surprise visit!) and marched over to the work out facility to get my groove on!  What an awesome time we had!  I've included pictures below that show just a slice of the excitement of the night.

Then, my little gift from the Almighty was two full days of snow!  The ground was covered as were the hills and I took the opportunity to go out on the slopes of Gibbs football Stadium.  Its Wofford tradition to flock to the football field with the slightest dusting of snow on the ground.  While there were many injuries (sledding towards a fence is bound to be dangerous), everyone had a great time!  I was able to sled like everyone else, although I did avoid sledding on my chest (thought that might hurt just a bit!)  My sternum was in great condition after we left the slopes and I felt like anyone else out on the field: wet, tired, cold but extremely happy to be embracing the Snowpocalypse of 2014!

Finally, the week ended with a wonderful Valentines Day. I went out for dinner, but then my date and I headed to Wofford's annual "Black and Gold Ball" where we danced the night away.  Unlike before the surgery, this girl didn't get tired and needed very few breaks between dances! I was able to enjoy one of my favorite pass times with a great guy, Shagging and Swing Dancing, with no issue whatsoever.

This week is proof to the Katherine of last semester that the heart surgery was necessary and for the best. Looking back, I wish I could tell the old me how wonderful I was going to feel.  I wish she had known it would be okay and the reward would far out weigh the risk and the hurt.  Thankfully, I know that now.  I'm back in love with my life and filled with thanks for my surgeon, my family and my friends for standing with me beforehand, during and now.  It worked!  I'm living to a new beat now and couldn't be happier!

Thursday, January 30, 2014


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