Giving the Gift of Life through Organ Donation: Chris Barry at TEDxFlour...

If your Having Heart problems.. Don't Settle for the B Team..Get the A Team!

First off, to those of you that don't know Jason, he is a very laid back, go with the flow type a guy. He thinks EVERYONE has his best interest at heart. In an earlier post I mention that Jason had a doctor, that I didn't care for too much. He was the doctor that told him that he only had 3 to 5 years ( in 2009)  left and did not want him to working,because he wanted him to enjoy the rest of his time here.

When I met this doctor myself in 2010, I wasn't impressed. He seemed very irritated with all the questions I was asking and always seemed like he was in a hurry. When I always at the hospital with Jason in May 2010, I have no doubt that God lead me to every question I asked, and he gave me the strength not to back down.

When I asked him would Jason be holding my hand, and rocking beside me in a rocking chair when he was 60..the doctor said no. I can't even begin to describe that feeling I felt. One thing Im sure of though. God DID NOT make me wait 35 years to find my perfect love, just to take him away from me..

Oh- and I will add that the doctor NEVER told us about the LVAD!!

Thank goodness we found the A team at MCV. They are the best doctors and nurses and are more than happy to answer any questions I have. That meant alot to me..because Its not just Jasons life..this involves everyone that loves him. 

The message that I want you to take from this post STAND UP for your loved one. I have stand up for " my Jason" more than once, and he didn't always like it. You know what though?  I will never regret fighting for the best care for  him, because I always do..and always will!

If It ever becomes too much...

Jason and were talking one night, and I was just talking away about everything I have to do. (Without thinking of course) All of a sudden Jason said "Shannon, If it ever becomes too much for you, you just let me know". I think about what he said often, and It just breaks my heart. That is what made me write I love you more than enough, because I wanted him to know that I'd always be there right beside him, no matter what.

Being a "Caregiver" to Jason isn't HARD at all. All I have to do his drive line every night. All the other things I do pertaining to the LVAD is just because I love him and I want to make things easy for him. Now with that said what is hard is the EMOTIONAL side of everything. I worry about him CONSTANTLY, yes all the time. I hate when he goes places alone when I'm at work. Then again, I know I can't treat him like a child.

What I need to learn is when to step back( slowly but surely) Sometimes being his lover and his mother hen doesn't go over well. Everything I do and everything I say to Jason is out of love, but sometimes that may be hard to read. You also never want them to feel like they are not the one in control (thats a big thing)

Word to the wise:  "PICK YOUR BATTLES" If you encounter something small..let it slide, If its something big.. like gaining alot of extra fluid in a short time span..then drag them to the hospital, kicking and screaming if you have too. They will still love you in the end!

I No Longer Hear A Beating Heart..

 Before Jason got his LVAD, I used to love to listen to his heart. I would pray the whole time I was listening, that somehow It would heal itself.  Of course his heart didn't sound anything like mine, the rhythm was all over the place because of his irregular heartbeat.

Jason and I were lying in bed one night, about 4 days after he was released from the hospital. I GENTLY laid my head near his heart (off to the side) and I couldn't believe what I heard. I hear this loud buzzing sound! It was the motor within the LVAD. I looked at Jason and said " Can you hear that?" Of course he said no. I remember I kept listening and listening, I was just amazed. Knowing that the sound I hear is the reason Jason is here with me, that sound is keeping him alive.

I listened hard, but I could never hear his heat beat.  I knew that  the next heart I will hear within his chest will be a heart from a donor. As crazy as It was, it made me sad. I started wishing I would've known that I wasn't going to hear it again , because I would've like to hear Jason's own heart beat just one more time.

                There is a picture of an LVAD below.

 The motor is located within the blood pump.

External View of the LVAD

Internal View Of The Motor