Post Op- Alive and Well

Did I leave you hanging?
Like I have said in the past, I'm not so great with keeping everyone updated, I apologize.

Well I am so happy to report that the surgery was a success!  I went into surgery early morning Tuesday, April 30th, and around 2pm I was out of the OR and in ICU, I stayed until the following day.  The surgeon repaired not one but two holes in my atrial septum and my torn mitral valve.  Now I have the best heart I have ever had, no holes and a no leaks.  I had a morphine drip and was heavily drugged, which I was glad for because I don't think anyone wants to feel open heart surgery pain, ....I think of Indiana Jones and Temple of Doom, the guy who's heart gets ripped out of his chest alive.....  Thankfully my surgery was done by a top surgeon, and not by Mola Ram of the Temple of Doom, and a seven inch long scar later, I am fixed, I am healthy and now I am beginning to really feel great.

Just two days after open heart surgery in the step down ICU

My stay at Albany Medical Center was quite the interesting one to say the least.  The staff in the ICU were amazing, followed by the step down ICU, all very caring and helpful.  Once they took out the chest tube I felt amazing, this photo was taken after it was taken out.  However, once I transferred upstairs to the 8th floor, cardiac floor, that is where I counted down the hours till I could go home.  Just 3 days after my open heart surgery I am upstairs sharing a room with an old lady who should have been in a room by herself.  She was gross.  A thin cotton curtain does not keep the smells, sounds and germs far enough away from a germ-phobic like me.  She coughed up horrible sounding things, peed and shit the bed at least every other hour, and was the most rude roommate you could ask for.  The phone rang at all hours of the day/night, followed by some interesting visitors who used our patient bathroom.... and her voice was like a megaphone, not exaggerating, she did not know how to shut up.  And then when she slept, she snored and spoke in her sleep.... I became deliriously sleep deprived, and I kept thinking "Just give me a stick" all I wanted and needed was rest.  The hospital is no place to relax, it is filled with staff needing to take blood, x-rays, give meds all at the most inconvenient hour.  I felt like every time I went to sleep I was woken up by the lights getting flicked on at 1am to draw my blood, take my vitals... I know its important, heck I do it to my own patients, but man, sleep is how you heal, how much you need sleep after a big surgery and can't.... it just made me crazy.

However, I had wonderful friends, and family and my lovely Willow, come visit me every day, with fresh fruit, cheeses and tasty crackers and flowers.  They made my stay more tolerable.  I even asked to have my room changed, and even my surgeon requested it, but it never happened.  Saturday I went home and slept for 16 hours.  Best sleep of my life.

Each day is better than the previous one.  I wake up sore and go to bed sore, but only need a couple ibuprofen to ease the pain of my broken sternum.  There are two big challenging parts of this recovery.  First, I can't lift, push or pull (at first it was 5lbs) anything more than 10lbs, so doing house chores like washing pots and pans, carrying a laundry basket was right out of my strength.  My arms are very sore because the muscles connect to my chest muscles, which pull on my sternum which was sawed in half a few weeks ago.  After 8 weeks I should have a fully healed sternum.  At three months I can resume pretty much all physical activities, I might not ride a roller coaster till next year though.  Im walking all over the place, upstairs, hills and can do it with ease.  The second challenging part of the recovery is limiting myself.  Its hard when you feel great you wanna do more, but then the next day I take a step backwards because I over did it, and at this point it doesn't take too much to over do it.  The other day I was having muscle spasms in my chest, it hurt so badly... or when I sneezed, the jolt of your chest is just unreal.  These pains will lessen with time, and so will rolling in bed or using my arms to get up out of a chair again.  Soon I will have more mobility, and then the muscle strengthening and cardio workouts can begin.  I'm using this opportunity to get into the best shape of my life, I want to see how hard I can work with a fully oxygenated blood flow, easier to breathe lungs and overall more energy.  I want to push myself hard, climb harder, paddle faster, run longer.  I have made the joke that I now have an Ironman heart, all I really want to do is to test this awesome heart out.

I am learning to love my scar, its a part of me now, its who I am.  

What better way than to get a bathing suit to show it off :)

22 days post op, new bathing suit

23 days post op and feeling wonderful

The last day living with a hole in my heart

What have I been up to?
Over the past two-three weeks I have been focusing on, as my cousin Megan says "Get your life together".  I have been getting my life together by cleaning the house, eliminating some annoying bills like paying the library their 17.00 bucks because I lost my last book I took out... Anyhow, Willow has truly inspired me to get my life together, so that when I am healing its one less thing to worry about, and I know where I stand with everything.  I have been working hard on accepting this surgery, and also trying to have as much fun as possible before the big day.  My Dad bought me a sweet recliner chair for my recovery, it has a cup holder and a secret compartment to hide my painkillers and the TV remote.  Then my awesome roommate Amy and Willow, the three of us all went in on the purchase of a Playstation 3 entertainment/video game system, along with a few games.  We are setting up my "battle station" as Jarrett calls it, or my "fort", with all things I need within my reach and easily accessibility.

So how am I doing mentally?
Pretty good, actually the best since I have found out about needing my surgery from the start.  Sometimes I catch myself thinking hard about the actual surgery, and it freaks me right out.  But I have began to let that anxious worried feeling go, just try to live in that day.  I have been working in the ER, along side some wonderful and caring coworkers, who give me spontaneous back rubs, smiles and often checking in on me asking how I am feeling and snap me back to reality.  Its pretty cool to work in health care before you become a patient, all the nurses, MDs and staff want to know the details of my health, giving me input and advice in this whole process of healing.  They all are truly wonderful people, and have donated some of their PTO (paid time off) to me, so I can have extra paid sick time off, more than I had earned on my own.  It made me cry happy tears that they went so far as to let me not worry about rushing back to work too soon, and taking the time to just focus on getting better not worrying about bills.  I feel so lucky.

How are you coping with all this?
I have been white water kayaking with my brothers and Willow, also paddling our restored canoe down a meandering creek with my friends, hiking with Skinny dog at the Normanskill, having dinner and BBQs with friends, going out bar hopping this past Friday night with my best friends and a coworker... The past two days I celebrated Willow's dads 60th birthday by going rock climbing both days and having campfires, a surprise party and laughs.  Then to my parents house for a big BBQ where my brother made blueberry mojitos and my Aunts came over to spend time with me.  We thew the frisbee around, played with the dogs, it was an awesome weekend.

I had my Pre Op appointment this morning, they did another EKG, a chest xray, some blood work and I answered a bunch of health questions along with asking a bunch of questions.  First thing was first, Can I fly on an airplane within a month of this operation?... I have a wonderful vacation planned to the beach in NC with Willow and friends and I really want to go.  Yes I can fly on an airplane!  Vacation is a go! Something to look forward to after all this tough healing, a lovely week on the beach will be rejuvenating to me!  A bunch of other questions I asked about limitations and time frames, it all sounded the same as predicted.  I had lunch with my Dad then went to get a few comfy pairs of pj pants and a loose button up tops (I won't be able to put a t-shirt on for a few weeks, because of raising my arms can pull on my chest) and a new toothbrush.

I will be at Albany Medical Center at 5:30am tomorrow, surgery is at 7:30am, should take 4-5 hours to complete.  They will do another TEE like I had a few weeks ago, while I am still under anesthesia to check the work they just did to see the new and improved heart.  Sigh.... I can't believe its tomorrow, tomorrow I will go to sleep they will open my chest and human hands will hold my beating heart.  Then when I wake up I will be fixed.  Willow has been my biggest inspiration, she has this amazing way of looking at all the positive things in dark and scary times.  I have never met anyone who is as incredibly caring as her, and I am so glad that she gets to be by my side now, and the tomorrows ahead.
 
The next blog post will be made by Willow, with an update on my recovery, if possible hopefully tomorrow evening she might be able to post.  Otherwise check facebook for updates from my sister Kendra, or brothers Ryan and Jarrett, and if you have Willows phone number, a text will be sent out.  Thank you all who have called me, sent me letters, emails and left voicemails.  I may have not been able to respond to all of them, but its only because so many have contacted me.  I feel so loved.

Im ready for the next big step in healing.  See you all soon <3

The Countdown

After lots of thinking and researching, I decided to make life easier for both me and my support network of family and friends, to have this surgery in Albany.  Dr Devejian's surgery report card was outstanding and very comparable to the surgeons at Boston Children's and Columbia.  I'm glad to say that I have scheduled my date for April 30th, in just a few weeks.  Then it will be behind me, and I can just focus on healing and becoming strong again.

It feels good to have a date now, it was hard telling work that I was unsure of when, and for Willow to take time off her job, a notice is nice to give.  My last day of work will be Friday April 26th at the ER, then Ill take the weekend to spend quality time with Willow and family.  Monday the 29th will be my long 4 hour pre-op appointment with my primary physician, followed by my fasting and most likely no sleep.  The following morning I will have my surgery, its going to take about 4-5 hours, I will wake up in ICU, then once I'm stable, Ill go to another floor.  I will be in the hospital about 4 to 5 days, Willow will update my blog to let you know where you can find me.  Now I have a small mountain of disability forms to fill out, my job unfortunately won't give me paid medical leave because I haven't been employed at Memorial for an entire year yet.  I do get some assistance through NYS, so I can still pay my bills while I am out.  In the meantime I will get this all done and completed, I have one more appointment with the Cardiologist, and on Monday, Dr Devejian will let me know if he wants me to have another Echo done.

So now I can put it back in the box and not really let myself dwell on a heart surgery, as best I can.  Its been a pretty tough thing to accept, I still find myself thinking maybe I don't need to have it... then I come back to reality.  The truth is my heart needs fixing, if I put it off I can put my whole life at risk.  I will be better then new when I get out of this thing, and that is a pretty extraordinary feeling I can't wait to feel.  What does 100% feel like? Before my 30th birthday on June 7th, I will have the best heart I have ever had, and the coolest thing is, I get to love the hardest love along with it :)

My first surgical consultation

Yesterday I had a big day, my first consult with a pediatric cardiac surgeon, Dr. Neil Devejian at Albany Medical Center.  My parents and Willow met me in a brightly painted yellow waiting room with stencils of rainbows and happy little animals on the walls, after all I am meeting with a pediatric surgeon.  I was the oldest "kid" in the waiting room, and felt a bit uneasy.  However after we were ushered to the exam room, in walked Dr Devejian and his nurse, with a warm smile he asked "Ok who is who?".  There were four of us, plus the Doc and Nurse in a tight bright yellow room, so we quickly made introductions and began to discuss my history and heart issues.

Dr Devejian is the leading man at Albany Medical for Congenital Heart Surgery, he has done over 1,000 operations to fix congenital heart issues on both peds and adults.  He is in year 13 of his career, at  47 years old, he isn't brand new nor he isn't a shaky old fart.  He spoke with confidence and ease, his hands were clean... you know, I tried to pay attention to details.  He took out a cartoon drawing of a heart that looked familiar, most anyone who went to school had seen this cartoon drawing of the heart.  He explained how the heart functions, and how mine functions.  He drew patches and sutures where he plans to fix the holes and tears... I felt good about him.  We all expressed our questions, we learned that I will be cut down the front of my chest, he said he would make the incision as small as he could in length so my scar won't show if I wear shirt with one button un-done on the top.  I liked to hear that.  

The best news is that within 3 months I will begin to start getting my true strength back.  After 4-6 weeks of healing, I will be able to drive my car again, and run on a treadmill.  He said I could start climbing as soon as I felt strong enough,  so I am planning to make that my goal, climb by September.

So now what?  

We left off shaking hands and that he would contact us next Monday, after he reviewed my Echo in detail.  Now, my little research team of Jarrett, Willow, Dad and I will research to compare a couple of surgeon names that my cardiologist will be referring to us in Boston and NY for the second opinion.  Dr Devejian said once we make our choice in picking a surgeon, it will be just 2 weeks before the scheduled surgery date.  Thats nice to know that I won't have to wait months on end for a surgeon with an amazing track record.  Both my parents and Willow really liked him and felt like he would be a terrific pick for my surgery.  Sigh.... :-) 

Now I have to put emotions all back in a little box, research the next possible surgeons and decide if I want to meet in person or if there report card shows the same if not better than Dr Devejian.  I am lucky to have this possible answer so close to home.  It makes healing and being supported by my family and friends that much more easier.  

Dad said, "Im rooting for this guy."  

I think my heart might be rooting for him too. 

Riding the Emotional Roller Coaster

Its been about a week since I wrote my last entry, I figured I should update.  I have been working a bunch lately, trying to make as much money as I can before I'm off work for a long time.  My new schedule has been pretty great, the shorter work days lets me enjoy a bit more time with Willow when I get home.  Let me brag about Willow for a minute.  This woman is the most amazing hard working, caring and giving person I have ever met.  She bends over backwards to help any friend or family member in need, and will go great lengths to give them comfort.  I am so glad for Willow's companionship.  Much love to her.

I have been having an especially hard time emotionally this week.  One day I wake up and I am ready for the day, excited to work and help people, and come home go for long walks with the dog and Willow, make a yummy healthy dinner... the next day I wake up sad, scared about the pain I will be feeling post surgery, wondering how I am going to feel days in the hospital but as a patient this time.  I think of what I will not be able to do, physically for a long while and it depresses me deeply.  I was looking forward to mine and Willow's first summer in the same state together, the climbing we have dreamed about, and we spent the winter refurbishing an old canoe of her fathers to make it our own, planning camping trips, beach trips, biking through the city.... knowing that it isn't gonna happen for much of the nicer weather saddens me.  She is doing a great job of occupying my mind with hope and helping me focus on today, one day at a time.  She is giving me such strength that I need, and with that I am trying to stay focused on daily tasks, and spending time outside together.

My friends, family and coworkers have just been all an amazing support too.  I have never felt so much love before, it fills me with so much hope.  All your emails and phone calls, texts, cards, you all are incredible people and how privileged I am to call you all my friends.  Thank you all.  I'm trying to make each day a good day, as best as I can.  I have spent movie nights and games with my bestie, laughs with coworkers, dinner with my family, hikes with Willow, and today I went white water kayaking with my brother Ryan.  I hope that soon I can just accept it so I can sleep better at night and continue to be positive and humble throughout my journey.  All I know is that by August I should feel pretty good, and I am determined to still have a great summer, even if I am physically limited.

I am thankful that I can be fixed, and I am so thankful for the chance to have the best heart my body could imagine.  I can do this, we can do this, and I am so glad I do not feel alone.  The sun shined both yesterday and today.  I am most grateful for today.

The Waiting Game

I woke up this morning at 5:30AM ready to take on a busy day of work at the ER and when I got in, my supervisor said "Happy Easter Kelsey, go home and spend with your family today".  Wow, what a nice thing, a holiday I planned to be apart from my family because of work to an unexpected day together.  I need money though, I'm going to be off work for a long time, gotta make what I can now. 

Yesterday was my first day back to work since this whole long week of tests and doctor appointments, and I was ready for it.  Ready for some sort of normalcy to occupy my mind, time to focus on my patients instead of myself.  I need to be humble.  Work was pretty good yesterday, it was sort of funny in the fact that when I called my supervisor to inform her of my news of needing surgery, she told the nurse that does the scheduling, and she took me off the schedule completely!  So when I showed up yesterday morning at 7AM they were surprised.  But we quickly fixed the error, however my coworkers gobbled up my hours, so the nurse and I recreated a schedule where I don't work 12 hour shifts, instead 8 hour shifts from 7a-3p... that's a nice change.  

Since my job is so physical, taking care of patients, lifting, holding them down, holding them up, CPR... I'm going to have restrictions and limitations during my recovery when I finally go back.  I have to do more desk work, so the director asked me if I wanted the position of the nurse and doctor secretary, that another PCT 2 (my job name) does.  I'd work M-F 7a-3p no weekends.  Nice hours for someone working in a hospital, I can't do much else with all the restrictions, so I gotta take it.  I began learning the job yesterday and was picking it up quite well.  

In the meantime its a waiting game.  The first surgeon has contacted me, we have a consultation with Dr. Devejian the only congenital heart defect pediatric cardiac surgeon in Albany (what a title), on April 10th at 2:30.  Still waiting, to hear from other contacts at Columbia and Boston hospitals.  The hardest thing now is taking this huge thing, a heart surgery that I have to have, and "put it in a little box" and put it away until April 10th.  My Dad has given me the best advice during my lifetime, the way he phrases things just click and make sense to me.  But how do you put the biggest thing you have ever had to go through at the age of 29 and put it in a box?  It needs to be a big box for sure.  Trust me I want more than anything to not have to think about this all the time, but I can't.  I'm trying to be distracted, maybe I should do the opposite and try to accept.  Meditate.  Something.  

Any suggestions to put a mind at ease out there?  Losing lots of sleep the past few weeks, and I would really like to just turn my brain off when I need to rest.  Just stay humble Kelsey.

The Final Word, Acceptance

I would have posted this yesterday, but I was having martinis at The Cheesecake Factory with my family for too many hours ....

Yesterday was my appointment with the Cardiologist, Dr Sosa Suarez.   Dad and Mom picked up Willow and I from home and the four of us went to find out the results together.  We all were feeling a bit anxious and nervous, however my Mom and Dad can play cool so well.  Perhaps since they have been through it before with Jarrett, twice, I guess parents are just good like that.

The Dr shared with us that my heart septal wall has a hole in it, and that because of this and my torn mitral valve, my blood doesn't get fully oxygenated.  Some of the blood just cycles through my heart over and over again.  This has caused my right side of the heart to become enlarged, and we don't want an enlarged heart.

He said I can be fixed.  This is great news!

I will have a surgery, most likely he said they will cut me down the front of the chest and into my heart, patch up my hole in the septum and stitch up my mitral valve.  I can go on to live a full life, continue to climb and enjoy the sports I have always loved.  Most likely spend 5 days in the hospital then the healing time is about 6-8 weeks as an estimate, I have to learn to use my lungs at full capacity, heal my cracked sternum, and heart.  Its going to be hard and difficult for me and the recovery sucks, but its worth it for a full lifetime.  Yes please, give me the surgery, I want to live to 100.  I have to find the positive behind all this negative stuff.  Its hard to wear a happy face, processing it probably is the hardest part of all.  Im trying to wrap my head around the way I feel and the way I can feel.  I currently am feeling just short of breath, having heart palpitations but feeling overall good.  Knowing Im going to be feeling a lot of pain to get to that amazing feeling of healthy is hard to accept.  Almost like anticipating a sore throat, knowing you are going to get one after someone sick coughs in your face.  Having to be tough, but feeling helpless.

So the doc shared with us that now, our next step in the journey to a healing heart is finding the right surgeon.  My case isn't usual with adults, most the time this surgery is done on the pediatric patients, because of this we are looking for an expert pediatric-cardio surgeon specializing in repairing atrial septal defects.  The city of Albany does not offer more than one surgeon that Dr Sosa Suarez would refer for my surgery, so we are looking at his contacts in Boston, Mt Siani in NYC and Columbia Hospitals.  We are to set up consultations with each surgeon and talk about the way they plan to do my surgery and find the one with the best statistics and low morbidity rate.... the goal is to shop for the best heart surgeon and that is where I will have my surgery.  The time frame of this all will be quick we hope, as soon as we find the right doctor to plan it within a week or so.  The sooner I get through this, the sooner my mind can just focus on healing instead of being anxious about when and how soon and where, if we were to put it off for a few months.  My surgery is not an emergency surgery, however he wants it done within the next several months, sooner its done, sooner I can have for the first time a fully functioning heart, with more oxygenated blood than I have ever had, and Ill feel stronger than I ever had.  Sounds pretty sweet, especially the thought of becoming a better rock climber because of this.

Im still somewhat in shock over this all.  Willow has been wonderful though this whole thing, so sure that Im going to be okay, its reassuring me that Ill be okay.  Now I have to train my mind into dealing with actually having the surgery, instead of still trying to find a way around it.