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!

Waking up after it's all over

On one of many late night drives back to Wofford last year my dad and I turned on the radio and were greeted by the song "Wake me Up" by Avicii and Aloe Blacc.  It was after a long doctors appointment at Emory and the upcoming Open Heart Surgery was heavily weighing on both of our minds. Stuck deep in the pit of depressive and anxious thoughts I listened to the lyrics and began thinking out loud, "I just wish I could wake up when this is all over."  I realized, like the character in the song, I was desperately longing to skip the anxiety, skip the pain, skip the worries, the fears, the depression,  the growth, the growing emotional strength, all of it. I wanted to skip the long, arduous journey and just get to the end where I was happy and healthy again. My dad, hearing this about to be major breakdown, quickly jumped in to remind me to listen to the parts of the song I had tuned out "...I tried carrying the weight of the world, but I only have two hands, hope I get the chance to travel the world, but I don't have any plans... life's a game made for everyone and love is the prize."  Stopping me before the hysterics ensued, he continued to remind me that after I woke up I DID have plans to see the world. We, as a family, were going to go to Greece and Italy and then later, I was going to be living in the South of France.  He went on to remind me that love is the prize and I had that prize, and that prize was given to me everyday in the form of the love and support from friends, family, neighbors, and supporters. Yes, times were hard, but I was not without love, I would not be without plans and in the end, I was going to wake up from that surgery and I was going to get up and I was going to walk again and I was going to get better and go live my life enriched by the love, friends and travel that would accompany me along the way. While his talk did hold the hysteria at bay, the fog of worry blocked this true vision from my sight. I knew his words were true, but I could not feel it in my soul, it was too deeply clouded by fear.

Since that night, the long journey, the surgery and the recovery, that cloud in my soul has evaporated. I have been caught up in the glory and beauty of life around me.  With a new sense of purpose and a clearer view of the road ahead, not to mention a much better functioning body, I have been gifted with the chance to run with this new lease on life and take advantage of so many new blessings and opportunities that surround me. 

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. 

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!

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.