Waiting game....

I turned the big 2-8 on April 27th and all that I could wish for was my new ticker.  I knew that I was going to my appointment to get higher up on the transplant list on April 29th and after that it was just a big waiting game.  To receive a heart transplant there are a lot of stipulations and Dr's appointments to go to and be cleared by.  The month of April was FULL of appointments.  I had to be cleared by:
-Dentist
-OBGYN
-Pulmonologist
-Psychologist (thought I would fail that one)
-Radiologist after reading my chest xray, echocardiogram and some other tests
-Primary Care Physician
-And of course the millions of tubes of blood

I found out that I was cleared by everyone and on April 29th I was bumped from a 7 to a 1A status on the heart transplant list.  You can only have the 1A status for 30 days then you are moved down to a 1B.  At my appointment, some of my support system was with me and we listened to the pre-transplant nurse discuss everything in great detail.  She explained that once I get the call it could be 12-24 hours before I start surgery because surgeon flies to get my new heart and has to get everything ready and perfect for me but I need to get to the hospital immediately.  I am currently 23 days into my 30 days at the 1A status.  My nurse also looked me in the face and said she's only had to ask 1 other girl if she was READY because she thought that girl would get her heart within a few days and she had to ask me the same.  She looked me in the eyes and asked if I was ready because I am in a really good state to get my heart within the first week.  It about made me cry because it all felt so real then, of course I answered that I was as ready as I will ever be.  I know that my Dad was with me that day, and it's as if he answered for me.  He knows I will be okay.  My Dad is my angel through all of this and I fight every single day for him. 

I know that God has this all planned out for me.  He is waiting for the perfect heart and for the perfect time.  He has to find someone with a body type similar to mine and blood type B or O and with no antibodies.  My Dad won't let me get anything less than a perfect heart.  I have been blessed to feel as good as I feel right now, the best I have felt in 7 months, but I'm ready.  I am loving being back at work right now and really enjoying life with my friends and family more than ever before, but I'm ready.  I'm ready for this next step and my new chance at life.  My LVAD will only last so long. 

It's all getting real!

Fast forward six months...a lot of showers that take 2 hours...sitting with my mom for a long time figuring out my numerous meds...daily dressing changes...no booze...great family...great friends...and here we are!!!

I had my 6 month follow up this morning which is usually just a couple hour meeting with an LVAD coordinator and talk to a cardiologist for about 20 minutes.  Today was different.  Today I didn't meet with my LVAD nurses, I met with a pre transplant nurse.  Every month they check out my LVAD, tell me that's it's looking good and when I'm 6 months post surgery we will start discussing the transplant.  Little did I realize that at 6 months it all changed.   I was so comfortable with my old nurses and loved all 3 of them for different reasons.  They are the go-to girls for patients with severe heart problems and I can call and ask them a simple question at 2am with no judgement.

My new pre-transplant nurse, Pat, was full of information today that I have been waiting 6 months for.  She scheduled me for an echocardiogram tomorrow morning at 9:30am.  They will be discussing my case in detail next Tuesday morning (extra prayers that day please) then they will be calling me Tuesday afternoon to let me know the plan.  There is a very long transplant list.  I am currently listed as a 7.  You can be a 1a, 1b, 2, etc.  There's a good chance that within the next month I will go from a 7 to a 1b.  If everything goes as planned, I could easily have a new heart by August.  They take A LOT of things into consideration and considering my weight, blood type and antibodies, I'm doing well on the list.  So for right now I just need prayers that this next month or 2 will go our way.  We have had a lot of change lately and we will have a lot more in the next couple of weeks.  

God is trying to give us more than we can handle but luckily Kyle and I were both blessed with such great families that it's not possible.  Transplant is getting closer...I'm excited...I'm nervous...it's getting real.

Blue October





Enjoying sun with my physical therapist, Megan

The entire month of October was blue.  The Kansas City Royals were in the world series and every time that I opened my eyes, everything was blue.  My very talked about blanket was blue and we also had a cute Royals pumpkin.   Between my health issues and the Royals headed to the world series, I thought my husband was going to end up in a hospital bed next to mine.  Kyle and my Mom never left my side in the hospital so he had to watch it all in the room and I may or may not have had to ask him to step out of the room from time to time. 

He was sad, my Mom was sad, his family was hurt and so was mine.  We all had the blues.  Kyle is one of the biggest KC Royals fans I have met and he gets absolutely CRAZY about them.  I wanted to be excited and watch the games with him but I had the blues and just wanted to sleep.  I was in the hospital the entire month of October and had what seemed to be the longest month of my life, little did I know that once I got home it wouldn't be much easier.  During October I had my lab work drawn 3 times a day and had tubes coming out of every limb on my body followed by chest xrays and echos.  I had an LVAD coordinator in my room daily to give us lessons on how to use my new heart and how to change the batteries and what to do if the machine beeps uncontrollably (pray that never happens), I had a dietician in my room to tell me all about my new low sodium life style, an occupational therapist to teach me how to shower with my new heart device since it's all electronic and nothing can get wet, a chaplain to pray with me and sing to me, a volunteer coming by for a 5 minute hand massage (HEAVENLLYYY!) and last but certainly not least, my wonderful physical therapist.  Mind you this does not include any of the numerous Dr visits I had each day or my nurses that were in every hour or so. 

My physical therapist, Megan, is the reason I am walking today.  When she first started working with me after my surgeries I couldn't even sit up.  She taught me how to sit up again, she taught me how to stand up, how to take 3 steps, walk half of the lap around the halls, walk around the entire lap and eventually conquer the stairs.  She was my favorite and not just anyone could get my ass out of that bed.  I would even pretend to sleep when half of the people entered my room and Megan didn't care.  She would shake me and make me get up when I was even at my sickest point and when I had the blues.  Her personality was just what I needed and I pray to have her after my transplant.  She would make me keep walking even if I was crying.  She saw me at my best a few months ago and also at my worst when I would cry because I had to do 2 stairs. 

Towards the end of October they started talking about letting me go home soon but not before one more surgery.  UGH!  How much more surgery could I have?!  I already had a very intense open heart surgery when they placed my LVAD, a few days later had another open heart surgery when they removed the built up fluid from around my heart, dialysis, etc.  Enough was enough.  The Dr's insisted that I have a "minor" procedure to have an ICD, defibrillator, placed above my chest to shock my heart if it had irregular rhythms.  It would shock me just like the scary pads at the hospital would just to make things better if something happens, hopefully help me enough to make it to the hospital.  They were talking about dates for this surgery for the next couple of days when I realized that October 29th was the next day.  There was no way I was going into surgery on the day that my Dad passed away during surgery so October 30th it was.  My final surgery to get me home.  Let me tell you- Megan was in my room the very next morning to get me walking again so I could heal.  As much as I wanted to kick her for it, it was so good for me.

When I got home I knew I had a lot of recovering left to do and I couldn't do it without all of the support we had.  I missed my boys and it seemed like every single time Grandma and Grandpa (damn-ma and damn-pa) were going to bring them to see me I would end up sick that day.  So when it was time to go home I had a million mixed emotions.  I was relying on the machines to tell me when my heart was acting up and the nurses to get my 15 different medications for me each day and now it was just us.  My Mom became my medicine nurse and Kyle became my Cardiologist.  I didn't realize what it would really be like when we returned home.  I couldn't be the Mother that I was before to my kids, I couldn't be the wife I should have been for Kyle and I could barely move.  I will never forget my first shower at home- who knew it could be so difficult?  It took us probably 30 minutes to get me wrapped up so nothing would get wet and as soon as I sat in my shower chair I just started shaking and crying- I couldn't do it.  I wasn't ready.  So my Aunt would come over and shave my legs, my sister in law and mother in law would wash my hair for me and I would just sponge bathe my body.  Thankfully that only lasted a few weeks and I just had to take plenty of Xanax, have my home health nurse help me and get back in!  Wrapping Christmas presents was another difficult one for me.  I didn't realize that in life I took every little thing for granted.  When I went to wrap gifts for everyone this year it took me at least an hour to wrap 4 gifts and they still looked like crap.  It hurts to hold my arms up long enough to wrap them, it hurt to squat down to wrap them but I knew I needed to do it.   No more blues! Try harder!  Royals lost and I'm going to win!  Sorry babe!

WHY??

This is a picture from my first day outside while I was at St Luke's.  It was on October 16th and it was a beautiful day.  Kyle was just as excited as I was to get my wheel chair outside.  It only lasted about 5 minutes but I just needed some of that sunshine on my face and to see the sky. 

This day I was finally awake and felt good but started to wonder, WHY?  Why did this happen to me?  Not asking WHY ME but what happened?  What got me into this situation?  Did I eat/drink something bad?  Did the flu attack my organs?  Was it hereditary?  What was it?   That's the question that will never be answered so I just need to stop asking.  They said my flu test was positive but then that flu test was a false positive so I didn't have the flu.  They said it was absolutely not hereditary and I did not have what my Dad did.  They say now that I had some type of an autoimmune disease that attacked my heart and that's what I'm sticking with.  Just have to keep looking at the sunshine and not the rain.   Worry about getting healthy and not what made me sick. 

Sick, Sicker, Sickest

I was at North Kansas City Hospital for approximately 5 hours total before they realized that I wasn't in the best hands possible.  They did the 2 procedures and transferred me to St. Luke's Mid America Heart Institute in Kansas City.  This is the part of the journey that I have absolutely no recollection of but glad I don't.  There's no way in hell I'd want to be awake for these next few days.  I recently met the charge nurse who got me from the stretcher from North KC Hospital and to the CVICU at St Lukes.  She's a beast and she looked me in the eye about a 2 months ago and said when she saw me that night, she knew I wouldn't make it until morning.  She knew I was a Mother of 2 and that September 29th is the night I would go on to Heaven.  She also said, that night she fought with a great group of nurses and Dr's to keep me alive and fought harder than they have had to in a while.  When I met her again a couple of months ago she showed me videos of her BOXING like a total badass with Mike Tysons' trainer.  That's another moment that I knew I was in the right place and I wanted people like her on my side. 

Back to when I was sickest-  from what I have heard, all of my organs started shutting down.  Now keep in mind that this is just my version from the bits and pieces of what I have heard from anyone because honestly I don't remember a lick of anything from the first month.  As my organs were shutting down, I remember getting dialysis for my kidneys, I remember seeing Dr's and nurses and rooms of people I love every single time I opened my eyes.  I also remember not seeing my kids every single time I opened my eyes.  I remember seeing one of my best friends, Adam, who lives in New York magically next to me at the hospital.  He is one of those people that you see him and you know everything is going to be OK.  My family, my husband, my Mom, my Aunt, my brother, my sister, everyone described to me their fear in what was happening to me and how sick I was until they met my surgeon on October 2nd.  

October 2nd was the day I had my life-saving Left Ventricular Assist Device placed by my God of a doctor, Dr Borkon.  My Mom described to me her fear of everything until she met him and she said he was such a blessing and it's like he could walk on water.  He was so confident and my family KNEW I would be OK once I was in his hands.  Kind of how I felt when I woke up and saw Adam, he has always taken care of business for me.  Whether it's buying me a round of shots or fighting for my life, he has always been there.  I have very few friends like him and I treasure each of them so much.  I recovered from the LVAD surgery slowly and finally got out of the ICU up to a normal room with the funniest and best nurses just in time to get kicked out and go back down to the ICU because there was fluid around my heart now.  After another open heart surgery to get rid of that, I was moved back up to the good floor.  5 South was where I wanted to be. 

Because all of my organs shut down, I had not gone to the bathroom in WEEKS which was a very talked about subject for me once I was awake.  **do not read if you're a pansy**  When I finally did get to pee, it was BLACK/GREEN!   I remember the nurses telling me no, there's no way you can pee because your organs are not working at all.  I said YES- I HAVE TO!  They put in a lovely catheter and here came a big black bag of urine.  So what do I do?   Immediately ask someone to take a selfie of me and my bag of pee!!  (still have the pic, available upon request)

This all doesn't sound too bad when I'm typing it but this was all during a VERY LONG touch and go 6 weeks of hell.  I was not well and celebrated every little thing that I could.  Black pee- YAY!  No more dialysis- YAY!  I get to see all of my friends and family- YAY!  I'm not sure if I'm going to make it out of this hospital and how did I get here- SHIT!  I have gained 50 pounds of fluid weight in 2 weeks- SHIT!  All we could do at this point was pray that I was going to make it.  I was very very sick.  When I was finally awake I had such messed up mixed emotions and pain.  While I was there towards the end I just started to wonder, WHY?!?

The end of September

September is a good month for our family considering it's Kyle's birth month but this past September was one of a kind.  We celebrated Dada's birthday then I was off on a trip to see my cousin get married with no kiddos and no hubby.  I was working like crazy per usual and couldn't wait for my long weekend with some of my favorite people.  My crazy cousins Kate and Meg came to pick me up on their way from STL to MN and all I could think was HELL YES!!  Megan and I drove through the night laughing like I was 20 years old and my old free spirit self just sending/flicking pictures to different countries and having a blast.

When we arrived in Minnesota we all took a quick, MUCH NEEDED nap then met with our family that we don't get to see nearly as often as we should for a lunch adventure.  I could barely get one cocktail down and as we all know, that's not like me...my goal for the weekend was drinksondrinksondrinks.  We walked back over to our hotel before our wedding weekend got started and I wasn't feeling well at all.  I thought I would just sit outside and enjoy the perfect weather by myself for a few minutes until my (scary-jk) Uncle Lex decided to pay me a visit and feel my head because he said I looked a little pale and said he thought I had quite a fever.  After that, I probably took 25 Ibuprofen that weekend just to get me through it and took about 3 showers a day because I felt like garbage.  I didn't want to be the party pooper so I still attended my cousins lovely wedding and about 30 minutes of her reception.  I stayed at the reception long enough to try to get down just a few drinks, 2 in and I couldn't do it any longer.  I went back to the hotel room and went to bed.  We woke up the next morning and I got in the car with my 2 wonderfully hung over BCE's that are such blessings and got on the road!!  I drove for about 3 hours and couldn't do it any longer, all I could think was "MAN this flu bug has really got me down!  No getting sick, just feel like JUNK!"   3 fast food places later for my bce's and hours later and I'm finally home!!

I got home on a Sunday late afternoon and told my sis she has got to get me to an Urgent Care.  We went to 3 (FELT LIKE TEN) and they were all closed until we finally found Urgent Care in Tiffany Springs.  At this point I was throwing up so when I saw the Dr, he quickly said "Well it looks like you have the flu that everyone has right now, sorry!" and sent me on my way.   Thanks for nothing, buddy! 

Monday, September 29, 2014, Kyle had to go to work and decided to leave Owen home with my to help me get Sprite in case I didn't want to get up.  I got up from bed, had some Sprite, laid down on my couch and just laid around with my Owie all day long.  It was about 4pm and my Mom was arriving home from Minnesota, my sister was in the living room with us and Kyle was headed home from work when everything went from the flu bug to my new life. 

I was laying on the couch and when I went to sit up....I went deaf...the room was spinning...I couldn't breathe.  When I laid back, I was OK again.  Tried to do it again and the same scary feelings.  I told my Mom I needed to get to the ER but refused to sit up- they had to get me there in her car but I couldn't move and they can't sit me up.  Just as she and my sisters' boyfriend, Shaun, were getting ready to pick me up I knew that I shouldn't do that.  I told my Mom to call 9-1-1 so they could use a stretcher and I wouldn't have to move at all. 

I was in the ambulance with an EMT and he said that my heart rate was elevated, I explained to him that I have severe anxiety and he didn't say much more.  We got into the ER at North Kansas City Hospital, they hooked me up to the EKG leads, then called for more leads to be stuck on me, then some more.  My male nurse, I will never forget his face when he was watching my heart patterns on the VERY large screen TV in my room.  The ER Dr immediately came in and introduced himself and put those big scary looking (aed) shock pads on my chest and stomach.  I specifically remember asking him if they were about to shock me and he said as long as I keep talking to him, he will not shock me.  I remember watching the nurses face going from inviting to thinking he was about to watch me die.  I asked him if I was about to die and he didn't answer.  They moved me from my little ER room to down the hall so the ER Dr "could see me better and it's right by him just in case".  YEAH RIGHT- THIS IS GETTING SERIOUS!!   The new room looked like an OR, not a room to just be waiting in and consulting with a Dr.  My poor Mom was the only one there watching me go through this and asking me if she should call Kyle, at this point, yes. GET DAYCARE AND GET MY HUSBAND HERE NOW!!  They said they are prepping me for surgery to place a balloon pump in my heart and a pace maker.  I got to tell my Mom and Kyle that I loved them, prayed to my Dad and that's the last I remember for a while.   I just knew that as bad as my anxiety was, I was at peace, knowing that there was NO WAY my Dad or God would let me Mom or anyone in my family go through more grief. 

A bit about me

The picture on the left is my family, including my Dad that I lost in 1998 to heart disease.  He was the best Dad you could ask for and the picture on the right shows my husband, who is the best Dad for my kids.  Having the perfect Dad is hard to come by these days.  My Dad always knew that family comes first and Kyle is the exact same way.  My Dad had his open heart surgery so he could live a longer life with his wife and family, not to cut it short.  But that's what's funny about your heart.  Without your heart you are dead, when you are alive you will put your heart into every single thing you can.  I have always had an ignorant hatred to all cardiovascular surgeons because they couldn't keep my Dad alive to watch us all grow up. 

Knowing what I do now, from personal experience, it's not in their hands.  It's all in HIS hands.  I don't know how my Mother has done it for the last almost 17 years but one day I will be as strong as she is.  Through my own struggles in the last 6 months, I have grown as a person, Mother, daughter, patient, worker, wife, friend and not taken a thing for granted.  I AM going to be given that second chance at life that my Dad was cut short on. 
My little life story:
I was born in Fairview Heights, IL (suburb of STL) and lived there until 8th grade.  We moved in 8th grade to Naperville, IL (suburb of Chicago) and I met some friends I'll have for a lifetime.  We moved yet again while I was a Sophomore in High School to Independence, MO (suburb of Kansas City) to be with my Aunt and her beautiful kids when she had an awful house fire.  My Aunt, my Moms sister, lost her house, her husband, her son and her heart.  She was just pregnant with her now handsome 12 year old and also had her baby girl Sophia that I was so in love with.  Little did I know at that point, my Aunt would become such a huge part of my life. 

I moved out on my own when I was 18, made great friends, had a lot of drinks, lived the life.  I had sweet Owen when I was 22, and little bitty Crawford when I was 25.  I FINALLY married the love of my life on April 5, 2014.