Thursday, January 9, 2014

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!

Wednesday, January 8, 2014

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. 

Tuesday, January 7, 2014

Monday, January 6, 2014

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! 





Monday, December 30, 2013

Two and a half weeks Post Op: Resting and on the Mend!

Hi everybody! Here is my two and a half week status update! I'm feeling leaps and bounds better while still on the road to recovery.  Enjoy the video!  I will have the Week in the Hospital update soon! It seems to be a little longer than I thought it would, but is full of tons of information. Until next time!

Friday, December 20, 2013

One week post op!

Hey everyone! I'm back! It's one week post op.  and I'm feeling really great! There are lots of new things I'm adjusting to so my body is a bit out of wack, but overall I'm feeling pretty good. I've included a video with an update on how I'm feeling now and will work in the coming weeks on a post explaining the entire week following surgery since it was filled with exponential change in my activity and lots of unexpected turns.  In the mean-time enjoy this video!


Tuesday, December 17, 2013

Day 1 of Recovery

December 13, 2013


Today Katherine looked a little less puffy, was in good spirits and wanted Mom to begin Harry Potter - Book 1 soon after we settled in.  So the day was spent alternating reading, trading spots with grandparents and Aunt Margaret, and allowing the nurse to tend to Katherine's medical needs. At this point Katherine had a port in her neck and one in each arm.  She was receiving saline, fluids, norepinephrine, magnesium, potassium, pain medications and probably a few other things.  We nicknamed the IV tree her "Christmas Tree" as it had so many branches. She also had a catheter and had 3 drainage tubes in her chest.  Forgot to mention that yesterday in ICU they had given her FFP (fresh frozen plasma) due to her blood disorder (Factor V deficiency) causing her to continue bleeding. We found out that the key to moving from ICU to a room was to get her blood pressure regulated without norepinephrine and to get her drains to slow down in their production.  Since this wasn't happening today Katherine spent another night in ICU.  We were kicked out at 8 pm, but Katherine was much more awake by the end of the day then she had been.  We even watched "The Grinch Who Stole Christmas"!