Three month Milestone!

My dearest friends,

I hope you had the most amazing Thanksgiving week!  We have so much to be grateful for! We are ALIVE and BREATHING!  If you are reading this, you have access to communication and some sort of electronic device.  We have a roof over our head and food to eat! Friends, family and loved one we cherish.  Most important, we have the knowledge that we are never alone.  Regardless of our journey here on earth, God is always with us and he is always faithful.

As we finish up the month of November, with gratitude in our heart, I know there are many who have a struggle during the holidays.  I want you to know YOU are not alone. Please know that you are loved and there are many who would love to be here including myself to help ease your pain.  This can be a lonely time for those who have lost a loved one.  Please know your grief and your loss do have a purpose.  I know it is difficult to see the bigger picture sometimes, but you are truly part of somebody else's puzzle.  I pray that your time is filled with love.

Today, November 27th, 2016 is a milestone for me in my recovery from my heart transplant.  Today marks three months post transplant.  To some of you, this is probably getting old, me sharing all of these milestone, but to me, this first year is all full of milestones.  It all started when I was told I would need a transplant , when I woke up from surgery, to removing the breathing tube, getting out of the hospital etc.  

Three months, is the day where some of the restrictions are slightly relaxed.  Although I went out and about last weekend, this is the day I should be cautiously allowing myself in crowds, going to church and restaurants.  Places where there may be folks I don't know and won't ask "Hey, You're not sick are you?  cause if you are, I better stop breathing" LOL! 

Let me explain a little bit of the why this restriction is so important and the reason for the auto-immunosupressants.  My new beautiful heart is a "foreign object" in my body. Your body is so smart, it wants to get rid of any "foreign object"  even if it's a life saving "foreign object"   It thinks it's some sort of an illness.... be it virus, bacteria, fungal etc. etc.  Therefore, right now, I don't have much of an immune system. I do take other medication that is in effort to give me protection against those ailments (fungal, bacterial, viral infections).  I may bend rules often but the one rule I will NOT bend, or break is my medication schedule! Those are non-negotiable in my eyes.

Needless to say, I didn't do any Black Friday or Thanksgiving Thursday shopping.  I have never been a fan! Everyone is out and about SHOPPING!  I am doing my best to stay AWAY! I think I will be doing all my shopping via internet (THANK GOODNESS FOR AMAZON.COM). I went out with my cousin, mom and aunt (aunt and cousin are visiting from Australia and they LOOOOVE to shop and I love spending time with them ;) and I spent my time outside the store because when there were more than 15 people in the there,  it felt super crowded. My hubby's favorite places to shop are KSL.com and Amazon.  I wish it was more of Amazon and less of KSL.  HAHA!  

My fears are a little weird at the moment.  When I have to touch a door handle to open it, I am concerned, when I shake hands, I am concerned, when I see kids around me I am concerned and a little nervous and anxious (they are full of little germs those darn cuties! hahaha!).  

As I am out visiting with friends and family, I know they are wondering what I will be like, will I be weak, frail, sick?  Do they have to be different around me etc.  I want you to know I am still ME!  I know that I had the same thoughts before, and it's ok to have those thoughts.  I know people are curious, and I am ok telling my story, but I really don't want it to be all about ME!  We ALL have something going on in our lives!  We ALL have a story! I sometimes feel like I am the elephant in the room.  (LOL!  Can it be a more attractive animal?  HAHAHA!).  Please feel comfortable, it's ok.  I know I am awkward at times too, just not knowing if people are sick of hearing about this or if they want to know the entire story.  I love you either way!  It's ok to ask or to move on....I am so ok with your decision.

Three months and LIFE IS GOOD and more importantly, GOD IS GREAT!  My next visit with the doctors, I will be doing what is called a "baseline".  This is a series of tests in addition to the Biopsy, blood work and echo they have been doing post-transplant.  I will share with you what it all entails!

LIVE LIFE OUT LOUD!  EVERY DAY IS A BLESSING!  Don't take anyone or anything for granted!  I heard this song on my way home from working out today and I LOVE THE SONG and I really, really hope you will listen to it and enjoy it!  It's called "IT'S GOOD TO BE ALIVE!"  I hope you enjoy it as much as I do!   
https://youtu.be/4omFQJEAAVc

“I believe that when you do unto others, blessings come to you as well. If you don’t have a friend, be a friend. I you are having a bad day, make someone else’s day. If your feelings are hurt, heal those of another.”
Nick Vujicic, Life Without Limits

https://youtu.be/4omFQJEAAVc

Giving Thanks!

GRATITUDE!  A THANKFUL HEART IS A HAPPY HEART!!

Howdy friends!

'Tis the Season to say all the wonderful things we are grateful for!  Today is November 20th.  I am so grateful for the most wonderful gift God ever blessed our family with and that is our most amazing boy, our miracle boy!  He is truly the light of our lives!  God picked the most wonderful angel for us to parent during all of our time here on this earth.

Yesterday was 12 weeks post transplant.  I have been feeling great and decided that it would be ok to go to the University of Utah football game as a family!  The day was ABSOLUTELY perfect!  Beautiful weather!  Sunny, warm and everything this girl could ever want.  I may have only made it to one game this year and although they lost, it was still one of the most memorable games I have or will ever attend.

I also decided to be brave and go to church today!  I love my church family and love their prayers, their love and support for me and the entire family.  It is truly humbling to see people who care so much about others.

As I go out and about, I thought I would talk about answers to questions people seem to have.  So, here it goes!

Q.  Do you know your donor or any information about them.

A.  As grateful as I am for my donor and my donor family, it is not information that is given out freely.  The family has to seek out the recipient through the hospital.  The family lost a loved one and everyone grieves differently.  I respect whatever they decide.  If they want to seek me out, I will be available, otherwise, I respect their privacy and their wishes.  I will be sending them an anonymous letter letting them know how grateful I am but will not do any CSI investigating to find them.

Q.  Do you have any weird desires or food cravings after the transplant (possibly from the donor).

A.  I don't yet, but who knows maybe??  I use to dislike jogging/running and I actually really enjoy it now.  I was thinking at church yesterday, it sure would've been nice if my new heart gave me a singing voice?  NO?  Come on!  How awesome would THAT have been.

Q.  Why do you have to stay away from people when you feel so good?

A.   I am on a lot of auto-immunosupressants which have pretty much shut down the immune system.  So, I can easily get sick.  So, it's the germs from colds and other gunk going around,  especially this time of the year.

Q.  Why do you wear gloves when you might need to shake someone's hand?

A.  Germs

Q.  Do the auto-immunosupressants make you feel sick?

A.  Not sick, but one of them occasionally makes me a little more shaky or jittery, that one is the Tacro.  One of the others, prednizone (not really sure how to spell this right now.  I could go look at the bottle LOL!)  This one makes me retain water, makes me hairy (Did I mention I am Armenian and might be hairy already?) and be hungry all the time. Possibly makes me a little more impatient and irritable, bad driver....oh wait, that could just be ME and NOT the drugs, but I can blame it on the drugs, right?  HAHAHA! Otherwise, I am grateful that they keep me from the "R" word.

Q.  Why will you be able to travel?

A.  It's really one of those the docs will wait and see.  If everything continues as it has, I should be able to travel within the US in about 6 months from the date of transplant and POSSIBLY out of the country in a year (after August 27th) or so. :)  Also, did I mention our family LOVES to travel.  Travel to me now means going for a drive in Park City, Orem, and Ogden.   I know soon, that will change.

Q.  What are you physical limitations?

A.  NONE.  Only what I allow to listen to between my two ears.

Here are some things I think about.

GRATITUDE!  Almost 24/7 I am grateful for literally everything!  It's a little weird,  but yes, I am truly grateful for everything!

NERVOUS!  If you know me, you know I love to be around people.  This weekend, I was honestly scared and nervous and excited at the same time.  When we went into the stadium, I was SUPER NERVOUS!  I didn't want to make eye contact, wanted to hold my breath etc.  I don't want to get sick and people and germs make me nervous.  

CONFUSED!  I went to church today, I want to HUG people and say THANK YOU FOR PRAYING for me.  But I couldn't!  Again, I don't want to get sick.  I know it's for a short time, but it is SO AWKWARD!

APPREHENSIVE!  I often get nervous that this "feeling great" is the honeymoon stage.  But I also trust if it is the "honeymoon" stage, God will provide and get me through the "NOT SO HONEYMOON" stage, if there is such a thing.

When I see my scars and touch my scars, all I think about is "THANK YOU GOD for these scars and a chance to be here!  I know I TOTALLY do not deserve this, but so grateful of God's GRACE!"

I know that there are more, but right now, I am getting ready to start the new week!  If you have any questions, shoot me a message, I am happy to answer!  

Today is the Monday of Thanksgiving week!  I want to wish you a very happy THANKSGIVING!  Know that God is always with you!  Know that He has perfect timing, no matter what it is you are waiting for.  

Love to you and your family!

HAPPY THANKSGIVING!

XOXOXO

Claire

Leaving a legacy.....giving life!

GOOD MORNING!

We have had an incredible fall in Utah this year.  I know many skiiers are probably hating it, and the lack of moisture isn't the best thing for us, but it sure feels great to be able to take walks outside still while it's 66 degrees!  My wish list would be that it would stay like this until Jamuary 1st. :)  That would be a dream come true!!

I mentioned in one of my previous posts that we participated in the Intermountain Donor Services Organ Donor Dash on August 20th.  I received a letter a few weeks ago from Intermountain Donor Services, when I first saw the envelope with the return address I actually thought it may be the Donor family reaching out to provide information about the donor.  I have to admit, I was pretty nervous about the thought.  Was I ready?  Was I ready to learn about this person who gave me the biggest gift I could ever receive?  The gift of life?  I opened it, and realized it was a letter thanking me for putting a team together for the Donor Dash.  I immediately picked up the phone to tell them, they shouldn't be thanking me, I owed THEM the huge thanks and what I could do to help bring awareness to Donation.

I was invited to join them at a Volunteer training.  I recruited my good friend to join me and together we went to learn how we can be of service.  A few things I learned I didn't know and a few things, I did know.  Here are some facts you may want to know about.
1.  There are 3 Types of Donation (not including blood and Plasma Donation) 
a.  Living Donors (kidney, part of the liver etc.)
b.  Tissue Donors 
c.  Organ Donors

2.  Here are a few MYTHS why people resist being donors.  There are others.  VIsit www.idslife.org and learn more.  
a.  It's against my religion.  
Not one religion is of the belief that it is wrong to donate.
b.  If I say YES on my driver's license that I am a donor, they will not work to save my life. 
Doctors never know if you are or are not a donor.  The doctors who are trying to save your life are NOT the same doctors involved in trasplantation.
c.  They will take my organs before I am really dead.
Donations of organ and tissue are ONLY accepted following declaration of death by a doctor who is NOT involved in transplantation.It is the complete and irreversible loss of all brain functions, including the brain stem.  

Non-living Organ Donors must pass away at the hospital, on a ventilator, and it is usually from a traumatic brain injury.  This one I didn't know.  I thought they could revive the organ, but apparently, that's not the case.

One Donor can save NINE LIVES.  Imagine that, leaving a legacy by continuing life in others.  My thought on this is always, YOU CAN'T TAKE IT WITH YOU!  I have been a donor since I was sixteen and will remain a donor forever.  Who knows, I may have something that will help save someone else's life.  I would LOVE to be able to pay it forward.

We all spoke about what brought us there to volunteer.  I heard from two families that were donor families.  These stories had a great impact on me that night.  One lost a 19 month old baby in a pond.  The parents hadn't even thought about donation of an infant.  They were asked if they wanted their child to be able to donate tissue and cornea etc. donors.  They willingly accepted and the mom has been a volunteer to bring awareness for about 6 years now.  

The other family lost their fifteen year old daughter almost a year ago now.  She had just received her driving permit and actually marked she wanted to be a donor.  She went to bed that night and did not wake up the next day.  Landon's parents were also donors so naturally they donated what was capable to donate.  They just expressed how much it meant to them to be able to continue Landon's life in others.  It was even more compelling to them that Landon had decided for herself to be a donor and made their decision even more confirmed.

I had a conversation with one of my co-workers who donated a kidney to his nephew.  He and I were wondering why people are so hesitant to donate.  We both talked about when he donated, he said he wanted to be available to donate again if necessary (not his kidney) Living donors can make such an impact.  There are so many people who die waiting.  Each day 100 people are added to the UNOS waiting list and every day approximately 20 people on the list die while waiting for a transplant.  YOU CAN'T TAKE IT WITH YOU, so if you are not a donor yet, please register to be a donor.www.yesutah.org

As I mentioned in the beginning of the blog, it is a gorgeous day today!  Get out and enjoy it!  Soak it in and let life flow into you!  

Challenge yourself, love yourself, know that you are God's treasure on earth and he has great things planned for you!

Love,
Claire