2016 Time for a new chapter and a 2nd chance!

Late night, I had some time to write tonight so I am writing.  It's time that I start talking about what brought me to this point of heart transplant!  Here I share with you some of my journal entries about my thoughts, my fears of this year!  This picture above is my co-worker and I on the night of April 4th doing the Zip-line!  Could not resist sharing!  FUN takes away the craziness!

April 4, 2016

On my way to Vegas for a work trip.  Feeling so many crazy emotions right now and I can't get a real grip.  I have a new boss and he seems super nice and wants to learn and know everything.  He is willing to listen and possibly change the way things are done.  I'm excited, but almost apprehensive about change.   Time will tell how this will go, but I'm going to stick with it and see how it all works out.   My conflict is that old boss was my friend and I feel like by changing things that he started would be hurting him in some way.  I have known for some time he was going to leave and hasn't been happy, so it's not a surprise.  Anyway,  I have the good angel and the bad angel in a little conflict.  At the end of the day, I think it's a good thing old boss is back where his family is and he is where he loves. Wishing him the best of luck!  Just want him to find his happy place.  New chapters this year.

Last week, I went to my heart doc.  The nurse practitioner had me meet with a doctor I had not met before at the clinic.  I think she saw or it seemed like I wasn't doing well. Unfortunately my blood work didn't make them all think it was all good.  My liver is full of fluid too.  This means my heart is not pumping out fluid as fast as it should.  So, I've stopped my huge water intake, I've re-started the treadmill since I have to take a VO2 test April 21st.  At that minute, I thought, what a punk the first time I met him!  Who asks someone with heart failure if they know what eventually happens to patients with my condition!!!  For the love of God!! (I thought in my head) I said they either get a heart transplant or they die. DUH!  But did he need me to tell him that?!? I am freaking almost 45 years old!  I liked my retired doctor!  He would say "We want you to keep this heart till your 80!!"  Yes!  That's what I freaking want!!  NO, I don't want someone to die so I can live with their freaking heart!! NO, I don't want my son, husband and mom to have to deal with this shit!! No, I don't want to take all sorts of drugs so I don't reject his new heart!  I'm happy with modern technology as an option, yes, but I don't want to make my loved ones have to go through any of this!! Ugh!!  I can't even be mad and ask God why I was made this way, because I already know he has a plan for everything!  I know he made me perfect for the job he has for me here on this earth!  All I can do is have faith that he is going to give the people around me the strength and endurance to trust his plan!  I know he will give it to me and I know I shouldn't be afraid! I sure as hell don't want my 12 year old boy to have to live through something like this nor do I want him not to have his mom.

Wednesday and I'm on my flight back home.  So many great things learned, but so overwhelmed with so much to do!!  I care about the well being of my people at work. and I know new home sales is what I'm great at and I know leading this team is an awesome opportunity to change lives, but, the question is if my time with my family is impacted by any news on the 21st, I want to spend my time while I'm healthy and strong making a difference in my son's life.  

I pray this new doctor over-reacted.  I am doing my best to get ready for this stinking test. I just know that at this point, God is truly in control.  Unfortunately, I am a control freak and I want to be in control of everything.  But I also know that some things you just have to let go and let God do his thang!

4.23.2016

It looks like it's time.  My heart is bigger than ever, it's now starting to affect my liver so that's not a good thing.  I had VFib/tack the bad "V" on January 30, 2016 at 3:23am.  Wow!  God is good!!  I was in Yellowstone on snowmobiles!!  If God had not worked his magic, that would have been THE END.  Obviously, God has a plan and I am going to give up all control and let him take over. It's also obvious to me that he has a job for me here that I have not accomplished yet.  He keeps bringing me back to life time after time after time.  So, the challenge for me is to open myself up and let him work through me to make sure I do what he wants me to do.  It's interesting when I finally gave up the control thing, there's a bit more calm about this whole thing.  Now my fear is to qualify to get on the list!  Now I want to make sure I at least can get on the list.  I just have to pray and pray that everything will go according to Gods plan!  The fact that I've been alive for 16 years with my heart with ARVD seems to be quite the miracle.  I'm grateful for the doctors, and more importantly for God for allowing me to be here and enjoy life and have the most amazing son and husband.  I've been very blessed with two incredible human beings that I get to call my family.  After our conversation with the Heart Failure/Heart transplant team and listening to them tell us my condition, we agreed it was time for me to do all the tests to get on the list.  This was the day we had our "small group".  We had a few friends from church at our house and we were talking about people who stay strong through tough situations.  My "ROCK" tonight, spoke up and said "i am just overwhelmed at how strong Claire is and how she keeps her positive outlook on life even though she has been dealing with her heart situation for so long".  He never says things like that, so I know meeting with the doctor that day made him realize that it is a miracle that I am still here and still as active as I am.

I start this day, and this journey with a grateful heart.  I'm grateful that God has a purpose for me and he loves and cares for me enough to work through me.  I'm grateful that I was patient and waited for the man God wanted to be my husband.  My "ROCK" may not be the perfect man, but he is the perfect man for me.  I'm not perfect either.  We are two human beings doing the best we can.  I'm so grateful that God blessed us with the most amazing Miracle.  I could not be more grateful for the opportunity to be his mom.  I'm blessed that God created humans in his image and they are able to create new drugs, technology and keep people alive.  I'm grateful that he will always provide!

4.24.2016

Today starts my day as a good patient.  I have weighed myself and bought a blood pressure machine to I can also take blood pressure every day.  Going forward, my goal is to weigh myself and take blood pleasure every morning and every night.  I am bound and determined to stay healthy & be a good patient until that time comes.

4/27/2016

So I sit here waiting for the rhythm doc and I notice my heart rate is so high and my blood pressure is so low and even though I'm taking all this lasix, my weight is really not going down which is frustrating.  I am now scheduled for next week on Friday to do most of the testing. The heart biopsy, the liver ultra sound meet with nutritionist, meet with social worker etc etc.  I guess I am committed to get going on this journey.  I can't deny I'm a little apprehensive and nervous but this is also the time I put all my faith and trust in the lord!!  He is the only one that knows what's to come ahead and I am confident he will get me through this.  I just want to vent and tell someone how tough it is to go to sneak to the doctor so that nobody knows what's going on!  Seriously!  I can't whine to anyone!  I don't want to bug my "ROCK" and talk about it too much and I don't want to bring anyone else into my craziness, but I really need your strength God to act like nothing is going on when my life is about to make a complete change!!  

May 6,2016

My "Day Off"!! I started at 3:30-4:00am this morning with Lucky (our dog) jumping on the bed.  So, I needed to wake up and get her some Benadryl! There is a storm out there and she is totally Cujo!!  Well, needless to say I got her calmed down, then got myself in bed for an hour.  My cute Miracle Boy woke up early and so we got ready for school.  I have an amazing son!  Went to get started with an echo at 8:30, ultrasound at 10:15, social worker, 11, financial person, nutritionist, then 13 Biles of blood, chest ex ray and met with the surgeon.  I got a 45 minute break, to go pick up Miracle Boy from school and take him home and back to hospital.  

I have so many mixed emotions about this whole day!  I'm grateful God loves me and will provide all we need.  I'm grateful that these doctors are all brilliant physicians.  I'm grateful for my amazing family.  Something scary was brought up today,  I'll have to deal with it probably since it seems I always end up dealing initially at least these things on my own and that's ok.  What if your husband is on a business trip and you get "the call"!  Sheet!  What if?!? We will cross that bridge when it comes.  Knowing "ROCK" and my luck, sadly in situations like this, he seems to be out of town.  But we will deal with that when the time comes.

5/14/2016

It's a beautiful morning this morning in Utah.  Lucky took me for a nice walk, and now I'm sitting on the back deck enjoying a cup of coffee.  I have time to reflect back on the week.  Last week, I only had a couple of doctors appointments and visits.  One of the visits was yesterday with the liver transplant Doctor.  Trying to decide if my liver is bad enough to warrant a heart liver transplant.  I am seriously just FLOORED at all these tests and these discussions.  I am scared shitless that two of my body's biggest organs may need to be replaced.  As I talk to this liver Doctor, he tells me I shouldn't be able to be doing what I'm doing that in sort of superhuman.  If they only look at my charts, my records, the tests, I shouldn't be outand about doing the things that I am!!  Of course I thank GOD for all of that!! 16 years with a huge heart, pushing at all my other organs making them work super hard and get weak too.  My huge heart is pretty damn selfish!  It doesn't like to share!  But I love my heart!!  It's got a lot of mileage on it!  Sadly, I'm going to need to break up with it after 45 years.  Now, I may also have to say goodbye to my liver.  All these tests, all these frightening conversations.  Part of me just wants to cry on someone's shoulder and say "what the freak is going on".  I listen to songs and every one of them has heart in it and I can't help myself to think about my heart.  Last week i climbed up the hill like a hero, now that I know I shouldn't be able to do things like that, I listen to my heavy breathing and I wonder am I really that weak?  The good news is, my liver will get better if I get a new heart and will not be replaced.  THANKS GOD!!

I pray that my family can handle this!  I know "ROCK" heard the doctors words, but I don't think he realizes how this may turn our world upside down or just my world.  I have had more doctor visits in the last month than I have had in the last 5 years and I'm afraid it's not going to stop!!  I'm sneaking from work to go to doctor visits!! Sneaking because I don't want anyone to know how serious this is!  I need to do the right thing!!  So do i tell them so they can prepare? Do I wait till I get a heart??  Ahhhhh!!  God please help me figure out what the right thing to do is.  

I trust God with all my heart and all my soul.  I just hope this is his will and not my will.  If it's his will, everything will be just right.  If it's my will, i have no idea why I'm willing it!!

I want a new heart that has a love for GOD before anything else!  I want my son to be ok through all this chaos.  I want my husband not to wish he had never married me but to love me and be by my side, I hope my mom will not be upset to learn that I knew about this and never said anything.  I am going to need these people more than ever!!

May 19, 2016

I am officially on the heart transplant list today.  "Miracle Boy" found out about the heart transplant his mom needs today.  What an emotional month this has been.  Going from thinking I'm good, maybe a little tired to you're now officially on the transplant list.  I'm grateful for my doctors who can see through my "I'm doing great" to checking and double checking to make sure I really am.  I'm grateful for a wonderful husband who loves me even with the fact that I'm broken.  I'm grateful for my son who is mature enough that he can handle that his mom is going to need surgery for a new heart.  As I walk from one doc appointment to another at the campus, running not to be late I wonder if anyone would ever guess that this is a broken girl who is on a transplant list for a heart?  

Week 1 post transplant

 

Week 2 post transplant

Week 3 post transplant

week 4 post transplant

I have gone from thinking my new doc is a PUNK to knowing he is an angel that God sent and is now my HERO!!
That's enough for today,  a lot of stuff on this blog.  I will post more again soon!  God bless you all!  

Love you!

Claire