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)

5 1/2 Week Update

Here is the 5 1/2 week update!  Things are going really well and I can't wait for the six week mark only a few days away!

Eating hearty and healthy :)

Tonight my family and I decided to celebrate my siblings end to exams and my own progress in recovery by going out to dinner!  It was a wonderful meal, but extremely salty!  After finishing my last spoon full of ice cream which followed a delicious chicken dinner I started to wonder if maybe I should check out the diet guide I had been given at my hospital discharge...just to make sure I wasn't too far out of line.

Woah!  All these years I thought I was eating healthily for myself. However, after looking at this list I am feeling quite out of the "healthy eating" loop!  Obviously I knew the doughnuts and bacon were out, but caviar? Really?

Eating a low sodium and low cholesterol diet is very important for overall heart health and prolonging the life of the new valve.  By following the recommended guidelines on an everyday basis I will decrease my risks for complications, strokes and heart attacks and lessen any potential strain on my heart.  For those of you interested in following the diet for your own heart health, or if you wish to share it, I can point you to these helpful resources which will provide guidelines for heart healthy eating.

Websites include:

•  www.megaheart.com/sodium_all_about.html
• http://dwb.unl.edu/TeacherNSF/c11/c11links/www.heartinfo.com/nutrition/nutr_hp1297.htm
• www.saltfreelife.com

After my bit of research I can also offer a few guidelines for beginning the healthy diet.

1. Avoid adding salt. 
2. Steer away from fatty meats.  Instead, go for lean meats including sirloin steak (yes please!) pork tenderloin, skinless chicken or turkey breast and fish or seafood (not fried or breaded).
3. When eating vegetables, consume those cooked without salt and if you must go for the canned or frozen, make sure to use those low in sodium.
4. No more doughnuts (living next to a Krispe Kreme means that for me, this one will be broken every now and then :) )
5. For breakfast, go for dry cereals with low sodium like total bran flakes, fruit loops or frosted flakes.  You could also take the leap and go towards Kashi and Go-Lean, but any of these work.
6. All fruits and fruit juices are clear, just don't go after fried fruits and tons of apple pies if you can help it!
7. Choose the low sodium and low fat "fatty products" such as margarine, mayonnaise and oils.  
8. For some reason they have put ice cream and froyo on the no-go list! (Fat free froyo is clear though!) The research shows low fat cakes and fruit deserts like ices and sorbets are the best option when you eat deserts.
9. As for drinks, most are fine.  Alcohol, of course, in moderation.  The one area you must pay more attention to is milk.  This is hard for me, as I am a 2% milk-a-holic. It is advised that you limit yourself to 2 glasses of milk a day and stick to fat free and 1% to keep the ticker happy.

Tonight as I went out to eat, it became harder to follow these guidelines.  It is okay to splurge sometimes, but when you have been eating out fairly often or feel it necessary to stick to the diet, there are tips for eating at restaurants as well!

The first is to avoid soups as they are often filled with sodium. Next, choose entrees that are baked, grilled, broiled etc.  Ask for no salt to be added to your meal in order to keep it heart healthy (in my opinion, less salt makes it a bit tastier too!)  Choose cooked vegetables for sides, but again, make sure to request no added salt.  If you order a meal with gravy or dressings, request them on the side so as to control your salt and fat intake.  These tend to be higher in fats and salts.

These are the suggestions I was given to ensure I stay happy and healthy!  The above information is great advice I acquired through pamphlets passed to me from the hospital and certain sites with additional information.  This new plan will ensure my safety and I am excited to see the possibilities with my heart healthy diet options!

Sharing the story of CHD

As stated in previous posts, this blog, among other things, seeks to be a bridge between the isolated person with Congenital Heart Disease and the community of support and information for those with CHD.  As I develop it I learn more and more about this community and am able to share bits of that knowledge here.  Today my research brought me to a few hard stories that I wish to share.

While so many strides have been made in research and CHD care, there is still a long way to go, which is why advocacy and research is so important.  I am fortunate to have few defects, but through this entire ordeal have learned how different every patient is. While some have shared defects, often other complications will be a part of individuals health that make their cases unique. There are so many complicated parts that go into treating each defect and so much doctors and researchers are still learning.  For those born with extremely complex cases the treatment is not always effective and the road to recovery is a steep uphill battle.

This reality has begun to stick as I have heard of deaths of fellow zipper sisters due to complications with birth, recovery, etc.  I have also learned about the harsh truth with two special cases of young boys who have recently passed because of their inability to receive the right kind of treatment soon enough. The most recent story is of "Holden the Tin Man" who was a two year old boy born with a severe CHD.  His parents knew before he was born that it would be a struggle to get his heart healthy, but pushed through.  They decided to nick name their son the Tin Man as they found an uplifting parallel with the character's search for a heart.  The family spent two years through surgeries and treatments to try and get their son healthy. They were praying for a heart transplant this year, but due to complications the Tin Man passed away on January 6th.  Its a very tough story, but as I looked through the photos on Holden's Facebook page I was inspired by him and his family's perseverance.  While times were tough, so many pictures were uploaded of Holden having fun and smiling while stuck to all those wires.  One photo even depicted the Tin Man calling his Ambulance his own personal car. He appeared to have such a strong, positive attitude in the face of his struggle it was incredible to see. Below I have included his video story told a year or two ago.

I share this not to scare or depress, but to explain the unfair truth of this disease.   Each CHDers story is different , but it is important that the larger story of CHD is shared. I have benefited and will continue to benefit from my surgeries.  Thankfully I am able to live life to the fullest, as many with CHD are.  Still, like any disease, there are those who did not have that opportunity, like the Tin Man.  For them I wish to share our story and broaden the CHD community so that attention can be given to the much needed research that will prolong and save the lives of those struggling to beat their CHD.

Stir Crazy

One of the hardest parts of recovering at this age is being stuck at home.  For the first couple of weeks it is fine because you do not have as much lucidity and your physical ability is pretty low, but as the body gets stronger living on the couch looses its flare.  Exercise helps, but again, after time walking on a treadmill becomes routine and you crave a chance to get out of the house and do more.  The challenge is, before the six week point you cannot drive and are dependent on the family and friends around you!

So what is the solution?

On some days it is not possible to find an escape route, but with the proper steps you can ensure most days that you are up to it, you are able to leave the house.  The first preparation to make before surgery for this aspect of recovery is to purchase gift cards to favorite venues, restaurants, movie theaters, book stores etc. This gives you an excuse to get out and provides you with fun, tangible goals.  It is also of vital importance to have a few people with whom you have spoken before surgery about helping you get out and about afterwards.  For me, this was a conversation I had with my parents, friends and siblings.  While you cannot easily plan ahead, having their support and being able to call on them with a few days notice secures your momentary bids for freedom.  Finally, it is most important that you take care of your body by eating healthily and exercising reasonably each day (by walking) so to guarantee you have the most energy you possibly can for both healing and outings.

Preparing for battle: What you will need

Coming out of heart surgery things are going to work a bit differently.  As your breast bone is healing it will be difficult to move your arms certain ways and your chest may feel sore.  You will also have limited mobility (getting better every day!) but for the time when you move more slowly you will need to have a few things lined up to help with daily tasks.  Finally, you will be uncomfortable for a bit and it is important that you make sure you are as comfortable as you can be.  Before my surgery I spoke with other women who had gone through the same thing (through the ACHA Zipper Sister page on Facebook) and found their advice on what I would need very helpful.  I want to share that with you so that if you know someone who is preparing for OHS surgery, or if you are preparing for it yourself, you can be prepared and ready to come out strong and be comfortable on the road to recovery!

What you will need:

• For the first couple of days out of the hospital you are going to want to have pajama days all the time!  However, due to your limited arm mobility (and wanting to lessen the discomfort as much as possible) its best to have a few pairs of pajamas that are button up on hand.  While your body is figuring out its body temperature (your brain was cooled a bit while in surgery) you will get randomly hot sometimes, but also randomly cold.  I found I was happier in long sleeves and long pants, but nothing with flannel or fleece.  
• A FAN!  As mentioned above, your body is slowly adjusting to its normal temperature and for the first two weeks you are on a roller coaster of body temperatures.  I was most comfortable having a fan close by so I could manipulate my body temperature like I wanted it, as it would change on a dime!
• A recliner and a bunch of pillows is the next most important supplies. For the first two weeks its tough to get out of bed and off the couch. So many times I had to be "fork lifted" from the cracks in the sofa. Because you can't use your hands or arms to get up you need really, really, really strong abs to get through it (I don't even know if its possible then!) If you want to avoid the fork lift and getting stuck like a beached whale, use a recliner or a bunch of pillows to make sure you are at an angle when laying down.  This will enable you to get up on your own and will be much more comfortable in the long run.  
• If you are a woman like me, you will need some comfortable bras.  Loose sports bras and bras with no under wire are the best because they will not irritate the scar and will not put too much pressure on the chest in the first couple of weeks.  These keep you comfortable and make sure not to hurt the healing scar!
• One or two button up shirts are something you can consider adding to your pre-surgery shopping list.  They will be helpful if you want to go on an outing in the first two weeks after you get home.  Easy to button up and very comfortable is what you are looking in.  Flannel is really in right now and was my go-to. 
• A neck pillow was often suggested when I was going through this.  I did get one and for sleeping in a recliner and in uncomfortable places, it was wonderful.  The only negative was that mine was memory foam.  Memory foam is great if you do not feel like a menopausal woman.  However, after coming out of surgery my neck pillow was sure to heat me up in no time and make me feel miserable.  If you go for a neck pillow, do not use memory foam!
• A small pillow is perfect for riding in the car and a great friend when you have to laugh, cough or sneeze. (Do not make the mistake I did and watch any Chevy Chase movies within the first week of being home. If you do, you will make GREAT friends with the pillow!)  You can see mine in a few previous posts (I had the most darling cases designed for me by my aunt to make it more enjoyable).  This pillow really is my number one suggestion.  It didn't stretch my arms too far out to the side and made any activity WAY more comfortable.  
• Finally, if you do not already have an accurate scale and thermometer it would be good to invest.  You will need to weigh yourself and take your temperature every day after the surgery in order to ensure that you are not getting a fever over 101 degrees and are not gaining more than 2-5 pounds in a day.  We didn't have either before the surgery, but invested soon after. 

These are the supplies I found most helpful for the surgery and they made a huge difference in the comfort of the recovery.  The good news is, after a few weeks these will no longer be necessary! I hope this is helpful.  If you have had the surgery and have additional advice feel free to comment below.  If you have any questions feel free to do the same!

A Month Post Open Heart Surgery Update

Here is my one month post surgery update! I'm feeling great and so excited for the sixth week point! (A week and a half away!) 

Finding a Community of Like-Hearted People

I created this blog in order to offer support for others with congenital heart disease preparing for Open Heart Surgery.  After my diagnosis I felt alone and wished to find a resource where I could learn what it meant like to be a patient with congenital heart disease preparing for surgery.  The doctors provided tons of helpful information, but the "science-y stuff" does not always translate into "and this is how it will make you feel."  I tried to find help in the stories of people going through bypass surgeries, but their situation was not at all similar to what I was about to go through. I sought a community which could relate to what I was going through and share their experience.  Throughout the process, I wanted to know I was not alone and I wanted to see the hope that I could not feel.  

While I searched for this community, I decided to create a space where those who, like me, had not yet found the group, could find a temporary example of someone going through treatment. But then I found the Adult Congenital Heart Association and the mission changed. The Adult Congenital Heart Association (often abbreviated to ACHA) is an organization created for those born with congenital heart defects.  Not only has it created a vibrant community and support system, it has also focused on raising awareness and pushing for further research in the field of congenital heart defects.  ACHA offers a multitude of resources ranging from a list of treatment centers throughout the United States and world, to materials on different defects and even  how to apply for disability and health insurance (to find them, simply go to achaheart.org). There are so many additional services and types of information provided by the organization as well.  For me, the most important part of ACHA has been its volunteers and members.  

After I reached out to ACHA they reached back and matched me with an Ambassador- a mentor to help me through the first few months of dealing with my diagnosis and preparing for surgery.  She has been an incredible help, sharing her experience and offering an open ear whenever I didn't feel like anyone else would be able to properly listen.  If that were not enough, I was then connected to one of the ACHA Facebook groups for women with congenital heart defects.  Here I was, and am still, able to meet other women going through exactly what I was and to learn everything about their fight with congenital heart disease.  

I was no longer alone, and that was when I decided to change the mission of my blog.  After being shown the incredible resource of the Adult Congenital Heart Association I decided I wanted to create a space that shared my story and connected those I know, and those I do not, with the community of the Adult Congenital Heart Association.  My new goal was not just to share my story, but to educate those around me in my community and in cyber-space of what ACHA is and how they can be involved, whether for personal support or information on this disease.  

As I continue to share my story as I a Zipper Sister in the coming weeks and months, I will also seek to spread the knowledge and experience I have gained from being a part of this incredible community.  As a woman with a congenital heart disease in this place and age my community of like-hearted people has quickly become vital and I wish to share that importance with the cyber world!

Marching my heart back on track!

After completing the mile walk on Monday I decided it was time to double my progress.  I finished feeling strong and ready to go further, yet knew my body didn't need to be pushed so hard right away. 

A fuzzy selfie as I headed into the second mile

As I awoke this morning I felt it was time for a second try at the treadmill! I was proud of the goals accomplished on Monday, but ready to set new records for myself.  I started on the treadmill and the first mile was done without interruption, although I felt tired by the end.  However, after a fifteen minute break I decided to come back and try for an additional half mile.  Once I got going it seemed so much more feasible and before I knew it, I was at .6 miles (which adding to the mile from before the break, meant I only had .4 miles before the 2 mile marker!) As I approached the half way mark I also began to increase my speed to 4 miles per hour (a strong power walk) and was able to sustain it for a good part of the walk.  

During the exercise my breathing, while increased a bit, was no where close to the level of panting I had before the surgery after just one mile!  Furthermore, I finally felt the effect of endorphins!  After finishing the second mile I knew I could go even further if I wished and felt energized and prepared for the day.  Another new experience was not feeling sick after the work out.  While it is true, my fitness level is not anywhere close to where it was before the surgery, the feeling of tiredness and nausea I had before hand did not show itself!

It is a relief to experience the change in my every day life from before the surgery to now.  I cannot emphasize enough how excited I am to notice the difference. While I am not fully healed, I can still tell that living my everyday life in the coming months and years is going to be SO much easier physically than before the surgery.  It is incredible to look back and realize how blind I was to the exhaustion and tiredness before.  I thought I was being melodramatic when climbing the stairs made me tired, but after climbing them in these past few weeks I have realized how un-normal those feelings really were. 

This is my update for the day!  I hope it is helpful to read my testimony on the incredible difference this surgery has made just by this four week point!  This surgery was a huge blessing and I am grateful to be blogging today to testify to the new lease on life I have received through this mitral valve fix. 

Three and a half weeks Recovery Update

Hi Everybody!  Here is the latest recovery update!  Enjoy :)

A Review of my week in the Hospital

Hi everyone!  As mentioned before, I wanted to include a review of my entire week in the hospital!  Here it is!  A bit detailed, but should include most of the hurdles required to get through the OHS (Open Heart Surgery) experience!

Waking Up

Day of the Surgery:

So! After the doctors did all of their amazing hard work, it was up to me to recover.  Waking up was not the most fun process, but the grogginess from the medicine helps a lot with the memories so its not as traumatizing as it could be.

 Dad and I a few minutes before the surgery 

This photo was taken the day of the surgery in ICU

The first thing I remember is waking up the afternoon of my surgery.  It is a very fuzzy memory, partly because of the medicine and also due to the fact that my eyes were so swollen.  The first memory of waking up did involve the breathing tube and it was not pleasant.  However, the strongest part of the memory was hearing the doctor tell me “Its going to be okay.” It was very calming and her words underlined the rest of my stay.  Every nurse and doctor did whatever they could to make me as comfortable as possible and to ensure my recovery was right on track.

The next memory I have is of the night after the surgery.  From this point I am able to remember most everything. The first night was definitely the hardest pain wise, but again the medicine really helps with the pain and the memory so it does not seem as bad in retrospect. 

ICU (2 days, 2 nights)

The "Christmas Tree" of wires and IVs in ICU

Recovery in ICU went by quickly and with every day I got significantly stronger and better.  The recovery program is made up of sets of goals and these help move things along and build the strength back in the body.  My first goal was to lie on my side.  This was accomplished within the first two days.  After lying on my side, I progressed to moving from my bed to the chair. I was able to do this by my last day in ICU. 

After moving out of the bed and having fairly stable vitals, I was unhooked from a bunch of machines (and IVs) and moved down to a lower level of the cardiovascular unit.  Because of the medicine, the removal of IVs and the pokes did not really bother me.  I remember feeling leaps and bounds better on my last day in ICU and excited to be one step closer to leaving the hospital.

Main Floor of Cardiovascular Unit (4 days)

First day main floor

Once on the main floor my goals became more ambitious.  I pushed myself to walk all the way to the bathroom the day I moved down (same day I got out of bed for the first time)  It was a huge accomplishment and was followed by a lot more walking!  In addition to movement, the staff began pushing more food on me.  I was moved to a solid food (heart healthy!) diet and was able to eat half of a chicken sandwich my first night on the main floor.  Within the next few days my appetite decreased, although that was mainly because my taste buds were not a fan of badly cooked hospital food.  As the days passed, my parents figured the key to making me eat was to bring me real food, and they began to sneak in pasta, chicken and delicious veggies.  I even got a few popsicles J

The first day on the main floor I also began breathing exercises. I was given a contraption with which to practice inhaling.  The nurses pushed me to do it ten times every hour and I regret that I did not follow through with that all the time. It was very hard to inhale as my lungs were regaining function and I got a little bit frustrated with the lack of process.  However, as time passed I got better at using the contraption and was able to increase my breaths. 

One of the great things about the hospital was the nursing staff.  I had the best nurses around.  Pauline was my first nurse.  She was from Jamaica and had two little girls.  While staying on the unit, I got to be adopted as another little one under her care.  She made sure to stop by just to say hey and she would occasionally lecture me on how I needed to be kind to my little siblings.  She was fun and I really enjoyed having her upbeat presence as I went through my first few days on the main floor.  My second nurse Sara was a hoot! She was so spontaneous and had the funniest comments to help me push through.  Under her care we decided I was entitled to a “Heart Card” which I could pull at my fancy for any number of things.  As the days past and new milestones were reached I had years added onto the heart card.  As of now, I’ve got ten years to use it however I wish. J  She was a great nurse and I miss her constantly uplifting care.

The first meal and night on the main floor

Second day main floor

My second day on the main floor I began walking!  After staying in the recliner for quite a while, I was helped by the nurses to walk down the hall.  They had a handy walker that was made for OHS patients and didn’t put any strain on the chest.  It helped me keep my balance as I meandered down the hall.  I came back from the walk tired, but excited that I had made some progress.  That night, I walked again, doubling the distance I had covered earlier in the day.  For the remainder of the evening, I continued to rest and practice breathing. 

As my medicines decreased in the hospital, my lucidity increased and so the nurses’ interruptions in the night became more noticeable.  During my stay on the lower floor my vitals were taken every four hours and I was weighed twice a day.  I was put on diuretics to help with the water weight and so my weight was constantly going down.  By the end of my visit I had lost twenty pounds of water weight!  It was crazy!

On my second day on the main floor, the pain in my chest became more noticeable.  Part of this was due to the medicine changes and partly due to the amount of time my chest drainage tubes had been in.

Third day main Floor

I spent most of the third day in my bed, except for when I was walking.  While the pain was managed well, my nausea was not!  This is not normal, most don’t have any problem, my body just seemed to really hate the pain medicine the nurses gave me that day.  Sadly, the medicine lasted for 6 hours and so did my nausea.  However, it was a great chance to learn how to advocate for myself, because I refused to accept the medication after my six hours of misery was up and was put on the other brand of medicine.

The Lovely BFFL coming to visit

On the bright side, day three was filled with special visits.  My best friend from Columbia drove all the way to Atlanta to say hello and chill with me for a while.  She gave me a Disney coloring book (which has been a great companion through the recovery) and we gossiped a bit.  I am slightly worried of all the gossip I shared “under the influence” but we had a good time and I was so thankful she was able to come and be with me.  In the afternoon, an old family friend with whom we had lost touch ran into my parents in the cafeteria.  She relocated to Atlanta a few years ago and is now a nurse at Emory! It was such a wonderful chance encounter and we were so grateful to have the chance to see her.  She had been with my mom through the delivery of my sister and had been there through previous surgeries.

With all of the guests my good mood was strong and I had a good night of walking.  That night there were also fewer disturbances from nurses and I was able to get a bit more sleep.

Walking on the third day

Fourth Day Main Floor

Dr. Kogan and I

I slept well through the night from the third day on the main floor to the fourth, but by the fourth morning my pain had increased a bunch.  This was primarily due to the pesky drainage tubes in my chest.  Thankfully, after a good looking x-ray my surgeon determined it was safe to remove the tubes (Alleluia!!!)  With the help of some pain medication and the great care of my nurse Sara and surgeon Dr. Kogan the tubes were out in no time! About an hour after the removal my pain level decreased significantly.  My nurse Sara joked before the tube removal that after the procedure was done, I would feel like I could run down the hall.  I didn’t believe her at that point, but by the afternoon of my fourth day I realized she was right.  Thank goodness I had a great team of nurses and strong parents to stop me. J

For the remainder of the day I rested.  I did take a few walks down the hall and made it pretty far.  It was a good day after the tubes were removed.

Fifth Day on Main Floor

By the fifth day it was time to go home!  After a great looking X-ray which showed much of the drainage by my lungs and in my chest cavity gone, I was given the OK to head back to South Carolina!  Departure did take a little while.  We were given permission around 12:00 and didn’t get to leave until 5:00. However, the time passed quickly and before we knew it, we were out the door! 

Most of the day was uneventful.  We were given bunches of information on how to proceed with the next few days and weeks.  Lots of diet information as well as a few prescriptions. 

 Wheels Up!!

Since my release from the hospital, my recovery has continued to be steady with no bumps in the road (knock on wood!).  Each day is better! While some days are “bad” and others “good” each one marks progress down the road to a healthy me!

There are a few things I wish I had known before the surgery.

I wish I had also known about the pain.  There is a website, http://www.simplehand.org/heart-surgery/recovering-from-open-heart-surgery.html which I read through before my surgery.  It had me so worried about the pain and my mobility.  While everyone experiences pain differently I will say, I do not feel this response is completely accurate for someone of my age and health.  The pain is not sharp, but rather dull and primarily on my back.  It feels very much like a crick.  While frustrating, it is not unbearable and often I do forget about it.  While it is worse in the hospital and the first week at home, the pain medicine makes it manageable.  I even found myself going hours at a time without pain medicine once home and feeling completely fine. 

As a woman with congenital heart disease, the worst part of this surgery was the anxiety and preparation beforehand. Unlike those who have emergency surgeries, the “blowing things out of proportion” tendency was, for me, the worst part of this entire ordeal! I hope this opinion and information is helpful.

Finally, I wish I had known how much better I would feel afterwards.  This blog is an attempt to get at just that!  Before the surgery, as seen in some videos I was constantly out breath.  I was very tired after walking around my college campus and really did have to budget my time so that I could rest often.  Three weeks out I am tired, but it is completely different. You can feel the difference in the tiredness.  It is not as oppressive as it was before the surgery.  According to the doctors (and you will find updates on the blog) this tiredness will steadily decrease as I get further away from the surgery.  By six weeks the tiredness is supposed to dramatically change, and I can’t wait!

I hope this dissertation sized post has been helpful.  While each experience is different, the general format of care is similar.  There will be different leaps and hurdles for each patient.  Different aspects of recovery will be more prominent for some than others.  Still, I intend for this outline to provide a general idea of what to expect from OHS recovery as a young, healthy person and to help lessen the anxiety experienced by any preparing for an upcoming open heart surgery!