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"!

Let the Waiting Begin

Then next entry or two will be from Katherine's parents:

December 11, 2013

Tonight Katherine, her parents and grandparents went out for nice dinner in the neighborhood.  She fit in between treating herself to 2 wipe downs with antibiotic wipes to all areas to be touched by surgery.  She felt itchy after each one and thus a little irritable.  Anxiety was at an all time high, something she only later realized would be the only time she would feel it during the surgery and recovery.  Truly, the dread and anxiety leading up to the actual event was harder to bear than the actual experience.

December 12, 2013

We awoke at 4:45 am in order to get to the hospital by 5:30 am more or less dressed and ready.
Katherine was very calm through out everything - prayer works!  She wore her Team Katherine jacket her Aunt Becky and monogrammed for her to help her feel motivated!

We only waited 10 minutes before we were called back to begin the getting ready routine.  We learned that we would be able to see her to her "curtain-icle" for a few minutes and then ushered out while that shaved the critical parts and put an IV in.

While she was being tended to the surgeon spoke to her parents advising them the surgery was to begin at 8:30 am and should be just fine.  He is one of those rare types of surgeons who has wonderful bedside manner in addition to knife skills.

When we returned to Katherine's side, we all tried to comment on the obvious while we waited.  Katherine was still very calm - so much so we thought she had already been given the Versed, when in fact that was not the case! One of the anesthetists came to talk to us about the sedation process - versed, followed by the general anesthetic.  She assured Katherine she wouldn't feel or remember a thing.  As 7:30 am drew closer we noticed a little more anxiety but Katherine held up very well, shedding only a few tears as she rolled out with her nice anesthetists.

At 11:14 am they called from the operating room to say things were going well and that the surgery had actually begun at 9:15 am (so we wouldn't worry unnecessarily if it seemed to run long).  They said the surgeon had not had to use a femoral artery to hook her to the heart lung machine and that currently the valve was being sewn into place at that time. 

At 12:45 pm they notified us that Katherine was off the heart lung machine and the assistants were sewing her up.

About 1:15 pm or so the surgeon came out to tell us the specifics of the surgery.  He said he tried really hard to repair the existing valve so that it would close properly but it just wasn't a satisfactory fix so he ended up cutting it out and replacing it with the bio-prosthetic one we had agreed upon in the case of a replacement. He said she did very well even though he had to keep her on the heart lung machine longer than he wanted. He said she would probably be ready for us to see her in ICU about 3:00 pm.  We told the giant crowd of wonderful friends and family the news and prepared to get lunch and move to the ICU waiting room.

At 3:00 pm or so we were allowed a quick peak at Katherine.  As has been the case in the past it was shocking to see her being controlled by the respirator like a life sized doll but we still recognized her determination and stroked her hands and told her we'd be back in as soon as we could but they needed to get the respirator out.  She had 2 male nurses who were easy on the eyes and personable to boot which eased our minds and souls.  
About 5:00 pm or so we went back in and things were much calmer. She event managed a little smile.  We sat with her until 8 pm (when they kicked us out) and then left for dinner and a few hours sleep.  All in all a VERY successful day!!

Wednesday, December 11, 2013

Quick catch up and its time to go!

Hey Everyone! So its the night before and I'm going to play a little catch up! This blog post will include my symptoms a week before surgery, what to expect from pre-op and all of the wonderful blessings I have received!

Here is my symptom update from a week before the surgery:

-Out of breath easily from walking and running
-Tiredness after days of exertion
-Heart Palpitations
-General exhaustion
-Extreme anxiety mixed with some calmness

I made sure to do as much as I could during the week and a half before!  Being outgoing and wishing to defy my leaking valve I did all of my exams, sang in two concerts and continued to go to class and stay involved as much as I could.  Of course, my body decided to laugh at me by making me sick, but I made it through with the help of many wonderful friends, professors and family.  As the weekend before approached I had a chance to begin the relaxation process and enjoy the Christmas cheer.

 Since my surgery has been set for tomorrow (Thursday) I spent the entire first part of the week enjoying myself.  On Monday a very kind and anonymous member of Team Katherine provided me the opportunity to have a full body massage (which was WONDERFUL). It was a great chance to de-stress before the big day.  Then for Tuesday lots of fun was in store.  My dad and I went shopping for a diamond necklace to show off my scar after this entire ordeal is done.  After finding nothing in our meager price range we decided to just get a pair of cute pajamas instead and go out to eat with the rest of the family that night in order to celebrate our last meal together before pre-op. Little did I know what surprise was lurking! As dessert was brought out, my creme brulee turned into a Tiffany Box!!!  My parents had secretly purchased a necklace of the highest brand in order to show off my scar.  It was such a surprise and quite a waterworks show, but a very special night.

Soooo... the Pre-Op

We arrived in Atlanta at 10:00 and began the Pre-op process.  I had a wonderful nurse who laughed with me the entire way through.  We got there, checked in and met with the anesthesiologist PA.  She explained what kind of medicine we were using and how the whole process would go.  Then the surgeon PA came and explained their process.  A nurse later came in to do an EKG for the Surgeon and the anesthesiologist.  After the EKG they drew some blood and asked for a urine sample.  Finally it was time for the chest x-ray and we ended with any last questions.  They gave me some wipes to bring back to our hotel to prep for surgery and also instructed that I use the mouthwash and nose ointment still (I have been using those for three days).

So now its 10:35 and my heart surgery is scheduled for 8:30.  I'm scared as anything, but ready to get this show on the road! Tomorrow my mom and dad will be posting updates on the surgery through this blog! What a great Team Katherine I have behind me!

See y'all on the other side!

Saturday, November 30, 2013

Team Katherine

At this point in the process I have decided its time to pull together the dream team!

As you read the title to this post, you may be wondering: What does Team Katherine mean exactly?

Team Katherine is all of my friends, family, doctors, supporters, and relators in this process.  My team is the group of people I know I can count on to help pull me through, up to the point of surgery and beyond.  They have already showered me with advice, love, prayers, gifts, thoughts and kindness.  Like any sports team, this crew of people is strong and united, ready to give me the support I need to make it through this process.

I have come to realize that heart surgery isn't something that I am going through alone.  I'm the one receiving the healing, but I am not the only one who is going through this.  My whole team is.  They are by my side, praying and caring.  They will be the ones who hear of my surgery as it occurs, who tell me what to expect, who prepare me with supplies and love, and who sit by me as I recover with a smile and a coloring book, or helping hand.  I am having OHS, but I'm not the only one experiencing this burden. My team is on hand, picking up a piece of my fear and holding on to it for me, lightening my own load.

While this Thanksgiving break has not been completely perfect, my family (some of my strongest team members) has helped me realize the presence of my team.  How did they accomplish this you may ask?  Through a music video!

The night before Thanksgiving my entire family pitched in to create a new (even better) version of the Call Me Maybe music video.  While the lyrics do not all match up, I began to realize the meaning of that song to me. My family showed me they were willing to be called upon whenever and for whatever  in order to help me through this process.  My grandmother found her way to tell me through crazy dancing and my cousins explained it in goofy love scenes littered throughout the masterpiece.  They weren't just dancing and mouthing the words to the song, they were demonstrating to me that they were a part of Team Katherine.  They showed me that through all of this, they have my back, and that they are carrying some of this heavy load for me.

I have included the video for your enjoyment.

If you are on Team Katherine or if you are assembling your own team, I hope you take this post to heart (no pun intended)

Having a Team is such a blessing and is of vital importance when making it through the Open Heart Surgery experience. I'd argue it is one of the most important parts of the preparation and the journey.

If you are on my team, Thank you! Your love and support and willingness to carry some of my burden makes a huge difference in the way I see this upcoming adventure.  If you have congenital heart disease or are preparing for Open Heart Surgery, Assemble your Team!  Realize what a blessing those who are beside you are in this process and rely on the knowledge of their love and kindness for support through this challenging time.

Monday, November 18, 2013

And the Countdown Begins!

As of 11/16/2013 I have decided I am ready for OHS!

I wish it were tomorrow just so I could get it over with, but sadly it is not!

This revelation and frustration has lead to a new coping strategy: the Countdown!  Not only is my new countdown a daily motivation, it also helps me realize how close I am to getting better!  With each day I find new ways to reward myself and the thought of one more day behind is such a relief.

I thought I would share my countdown with you so that you might join with me in my excitement.  If you are anticipating surgery as well, and feel as I do, it is a wonderful tool you can use to physically see the change that is ahead.  Not only do you have a date, but you have a way of measuring what comes between you and that date.  It provides you a time table and shows you what all you can put in your time between now in then.

For me, this countdown has been a tremendous help to my studies.  Getting bogged down in the upcoming surgery I was becoming easily distracted, but after using the countdown I have been able to use it as a motivation to get stuff done.  "If I finish this, I am one step closer to that surgery and that much more ready for the anesthesiologist to put me under!"  Is my new motivational strategy.  It works too!  Half a book read, 3 papers done, not to mention a whole week of Spanish homework finished and all in one weekend!   Don't worry, Its not all studying and exams for me. In the extra days before the surgery I plan to fill my time with incredible Christmas concerts, solo performances, jewelry shopping (for my new heart necklace :) ) special dinners with the family and fun Christmas movies.

So this is the countdown.  A way to quantify what stands between you and your surgery and how you can best spend your time to get there!

The Countdown:

Thursday, November 14, 2013

Ways to Deal with the Pre-Surgery Stress

I would like to make use of this update in order to inform you of the ways to prepare for surgery and to alleviate some of the intense stress looming OHS causes.  Nothing is a total fix for the psychological symptoms you experience.  Open Heart Surgery is scary and dealing with that fear is extremely hard.  Still, there are ways that you can distract yourself and give yourself moments of peace.

I have had difficulty with the idea of "after the surgery."  Since everyone is different, every recovery is different and not knowing how I will feel 1 day, 1 week, 1 month, 2 months, 6 months out is frustrating.  For those going through the process you want to know as much as possible and you can know everything (or try to) about the surgery and about your condition, but you cannot know the future and how your body is going to respond.  Even among those who have had the surgery multiple times, each surgery has a different recovery time and feel.

 I am personally scared of the boredom and the pain.  I want to have fun during the Christmas season and not be sad, drugged up and in misery the entire time.  This has become the primary stress so I have created a specific solution to address it. This solution does not always take away the anxiety, but it gives me hope and something for which to look forward.

 My creation:  a wall in my room with sticky notes devoted to activities and gifts I am going to give myself before and after the surgery. They are ways to reward me for what I am about to go through and what I will go through.  Even though this surgery is going to hurt like a monster, I don't have to be filled with dread, but can also be filled with excitement because I have fun activities to which I can look forward.

 Being the 19 year old young woman I am, these include:

  • Getting a gorgeous diamond necklace to show off my scar (surgery, Christmas and birthday present)
  •  going to see Christmas lights in my car
  •  listening to Christmas music CONSTANTLY
  • Spa days!!!
  •  having my mom read the entire Harry Potter series to me from when I wake up in ICU until we come to the last page (yes I'm a bit of a nerd).
  • Crowning myself Queen of Christmas Land (our house) and making sure the Christmas spirit is Merry and Bright in the Buchanan household
  • Going to church on Christmas Eve, even if I have to sit in a wheel chair in the back row.  If I can't make it, I'll have Eucharist brought to my home
  • Going to see the new Narnia movie if its out
  • Watching "Christmas Vacation" (before the surgery so the laughs will not kill my chest)
  • Walk or ride down our road every day that I feel able
  • On the one month anniversary, walk around the neighborhood 
  • "High" coloring with my best friend in the hospital (these will be beautiful expressive pictures of which I will have no memory)
  • Going to the mall (wheelchair, and probably wearing a mask) just to appreciate the fun hustle and bustle everyone else is experiencing
There are more, but I will not bored you with those.  This is one of my many coping mechanisms which focuses on the recovery fears.

As for my anxiety about the surgery and long term worries, I have found INCREDIBLE resources that have helped me work through some of the stress and continue to be a comfort to me.  
  • The first is the American Congenital Heart Association.  I became a member and through my membership received packages of information about my defect, the services available, where doctors and clinics were located etc....  If you are not already a member, BECOME ONE! Here is the website:
  • My Ambassador.  This is a program offered by the American Congenital Heart Association for patients who are preparing for surgery or just receiving a diagnosis.  My ambassador is there for me in whatever way I need.  She and I email and Facebook all the time and she constantly provides support for me. Whenever I have a question or worry she is able to share her own experience or use her expertise to calm the stress.  She is not a doctor and will never provide medical advice, but has given me all the information I need to be the best patient I can possible be.  Here is the link to learn more about Ambassadors and to get your own (if you are going through this experience like I am):
  • Finally, the Facebook communities I have found have been such a tremendous help.  These groups allow patients (and in some, family members) to talk about the issues they face, ask advice and questions of other CHDers. .  I love these groups because I am able to find out so much more about all the diverse disorders and symptoms and to feel the support of others going through the exact same thing that I am.  These groups include:
Another mechanism for coping is to see a counselor.  I have one on campus who has been such a tremendous blessing.  She is able to help give ideas for coping and dealing with the stress and is always ready to offer a sympathetic ear.  Without her I have no idea where I would be in this whole process.  She has been one of the most influential voices throughout this process.  

My final piece of advice is to embrace your community of friends and family and let them support you.  Also, distract yourself with hobbies, books, movies, shows etc.  Let the community lift you up in love and save time to appreciate yourself.  You are going through a lot and you need the support of your friends and the slower, relaxed pace for yourself.  Take this surgery prep as a time to get in tune with your person and to recognize and support yourself as an individual.  

Now that I have written a dissertation sized blog post, I will leave you with a quote to give you strength for your day.

No, I think I'll just go down and have some pudding and wait for it all to turn up.... It always does in the end. - Luna Lovegood, Harry Potter and the Order of the Pheonix

(You guessed it, Harry Potter!)
While out of context, remember to enjoy life right now, and just let go of the worry of the upcoming surgery.  I still am still anxious, but like Luna, I know things will turn out great in the end :)

Sunday, November 10, 2013

So What are the Symptoms?

After covering the emotional side of preparation, I thought I would focus on the symptoms of a leaking Mitral valve.  I have included a video demonstrating what exercise is like for me.  Please, do NOT attempt exercise without consulting with your doctor about what you can and cannot do.

My Current Symptoms:
-Fatigue after exertion
-Occasional heart palpitations (increased with stress)
-Exhaustion for no real reason
-Heavy breathing with fast walking, running, uphill biking, uphill walking and climbing stairs

Additional Symptoms many experience:
-Severe palpitations
-the Swelling of ankles
-increased urination at night
-difficulty breathing when lying flat

For a further list of symptoms you can consult the Mayo Clinic:

One of the hard parts about experiencing symptoms with the leak is keeping up with those whose heart is functioning healthily.  So here is how I deal with it:

I handle the difference in energy levels and physical abilities by seeking balance.  I make sure to keep in tune with myself and my personal needs.  When I'm having a busier day, I reserve time to rest. If I wake up feeling more tired than normal, I take that into account and add additional rest time in the day.  I may also take the day at a slower pace.  However, I do not turn into a hobbit or let myself act out of self pitty.  After taking time for rest, I go hang out with everybody else.

One specific area I have trouble bridging the gap between healthy hearts and my heart is walking pace! While walking with others, I often begin to feel tired and my breathing rate goes up.  Sometimes, if its a short distance, you just power through and count it as a work out. But, when it does get to be too much, I simply ask others to slow down a little bit.  Still, walking slow is not always the best solution, especially when you are in a hurry!  Since I am on a small college campus, I have brought a bike to school in order to solve the problem.  While it still tires me out going uphill, the bike allows me to keep up with the busy pace everyone else is running on and maximize the distance I can cover for the same amount of exertion I would experience walking a shorter distance.

So these are my symptoms and this is how I deal.  Only one month and three days until all this changes! WooHoo! :D

If you are preparing for surgery and are experiencing these symptoms (or know of someone who is), my advice is to remember the surgery is going to make this BETTER!  Your life is going to be changed after going through this whole ordeal. You just need to get a tune up on your body's engine!

Well, until next time!

Saturday, November 9, 2013

1 Month and three Days to go and Coping

1 Month and Three Days until I walk into the hospital, put on my gown and go into surgery (oh, and I will get some good drugs at some point in there too!).  To say I'm freaking out might be a bit of an understatement.  As the time has come closer, my thoughts and worries have increased.  No matter how much I learn about my heart, the surgery, the recovery, and the long term effects, I feel like I still am missing important information.  If I was the premiere CHD Surgeon in the world, I believe I would feel the same way.  Its stressful to know that the surgery is coming, but in the meantime there is absolutely nothing I can do to prepare (besides buying the C-shaped pillow, button down shirts, zip up bras and boy short panties ;) ).  Being the type A personality that I am, I wish there were something I could work on in order to hurry the process along, but alas there isn't.

I am also constantly sizing myself up.  I find myself thinking "is this what normal people do when they find out about CHD", "What are my friends, colleagues and professors thinking about this constant downer mood I'm in", "Do most people get frustrated this much, cry this much [insert a multitude of negative emotions and expressions here] this much!"  "Is it okay for me to feel upset right now?"  "Is this the normal response, is that the normal response."

 Finally, I have had enough.  I recognize these feelings of sadness, fear and anxiety are not going to stop until this surgery is over, but I have decided that I must acknowledge them and accept them as my unique expression of grief.  This term normal is a lie.  This need I feel to express my grief in a "normal" way is absurd. There is no normal in this situation. Grief is never normal, it is unique.  I have finally given myself permission to work through this in my own way.  To recognize when I need to acknowledge my sadness and fear, and to recognize when I need to push it away and just go have fun ,or go study and get back to my regular routine.

For those preparing for surgery, recovering from surgery, reading for a friend or loved one, or reading for me, these are the thoughts that have bothered me most. After speaking with others, I know these anxious feelings affect many facing the surgery.  My best advice on coping, is to accept that you have to cope in your own way, and that is absolutely and totally okay!  This process of preparation for surgery gives you a chance to learn about yourself in the toughest of ways.  This preparation has forced me to accept that normal doesn't exist. The best thing I can do to both prepare for my surgery and to prepare for my life is to feel in in the ways that are best for me, and not the ways I think others expect me to.

So this is coping with 1 month and three days left.  It is filled with lots of retail therapy, a good many cries and talks with the counselor, lots of laughs and love with the huge number of friends here to support me and finally with a thankfulness for the future I get to have after this entire ordeal is over!

Monday, October 28, 2013

What to Expect: Starting the Journey

Hi everyone! Welcome to my new blog! I'm really excited about sharing my experience and personal research here with you guys! I've included a video with a little bit more information about the purpose of the blog and what to expect from my posts! Enjoy!