Graduation & New England Fall Trip

I write this blog the day before my life changed 26 years ago. I have no recollection of June 6, 1990.  By this point in time, I was sleeping my days away.  But I will remember June 7, 1990 like it was yesterday.  It was the day my life as I knew it was irrevocably changed forever.  And even though June 8th is the "official" transplant date-it is June 7th that holds a special place and memory in my heart.

Now, a new chapter is being played out and though I have no idea where it is leading, I know I have been predestined for it.  "When I was woven together in the depths of the earth, your eyes saw my unformed body.  All the days ordained for me were written in your book before one of them came to be."  Psalm 139:15-16

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So where to begin…well…I had my visits to Stanford on Tuesday & Wednesday last week.  Tuesday consisted of bloodwork, echo, appointment with liver transplant surgeon, chest x-ray, EKG and then finally an appointment at the heart transplant clinic.  First off-all the appointments for this visit were scheduled and no surprises which was a relief.  The appointment with the liver transplant doctor went well and he was effectively able to answer my questions as to why I was even being considered for a liver transplant given that 2 previous doctors had agreed that I didn’t need one.   He added a test on to my heart cath which was scheduled for the following day that would measure the pressures in my liver.  This test, depending on the results, will let him know whether I needed further testing, or no liver transplant at all.

After squeezing in a couple more tests between the liver transplant clinic & heart transplant clinic, we took a break and had lunch in front of the relaxing fountains outside the hospital. We finished lunch and headed upstairs to clinic.  We first met with my transplant coordinator who went over meds and any health changes.  I told her that I’d been feeling pretty good since March but over the course of the last 3 weeks some symptoms had reappeared.  I explained that during the last three weeks I’d been trying to get more things completed and had a few “stressors” that were for fun, but stressful nonetheless.  After the coordinator left, a young female “Cardiology Fellow” came in and went over my history and some general transplant information and then about 10 minutes or so into the conversation she asked me something along the lines of, “So, how are you feeling about this re-transplant process?”  I could not help myself.  I had to share how I truly felt about it-for better or worse.   

“Honestly, I’m not sure I want to go through this transplant thing again.”  

I’ll never forget the look on this young woman’s face!  It was clear that she’d never heard that come out of a potential heart transplant candidate’s mouth before.  She stumbled around with her words and questions, one being, “Why not?!”  So I explained to her that having been through this before, I knew what to expect.  That a heart transplant isn’t a “cure-all” for those in heart failure.  I began to explain about the first years being very tough with hospitalizations and illnesses, and then…I got choked up.  I was getting ready to explain about Stephanie.  But I couldn’t.  All my words were caught in my throat and seeped out of my eyes.   

Scott saw my need and stepped in to take over for me and explained to her about the emotional roller coaster of trying to get listed for the last 10+ months.  About going through all the testing, social/psych meetings etc. and being only a few blood tests away from being listed at Sutter.  He explained the disappointment of being put on hold and then told by Sutter that once my liver was treated, “I’d feel better” and that they would not consider me as a candidate.  He explained the feeling of hope coming to Stanford, only to be dragged out another 5+ months to not even know whether I was even a candidate for their program.  And then he explained to her about Stephanie. 

Dear sweet Stephanie.  I was introduced to her via David Lee with The Waiting List back in November.  Stephanie had a heart transplant 20 years ago and had been waiting for her 2^nd heart transplant for almost 2 years.  She and her husband had a little girl, so she was a fellow mom in need of her 2^nd heart transplant.  We’d conversed on Facebook quite a few times since November, following each other’s progress, as well as shooting each other an occasional email.  Her words of wisdom on her Facebook page sounded like something I could have written about my own health.  We shared the same frustrations:  the lack of health as mom’s waiting, as long time heart recipients with the connection to our first donors, the feelings of needing another heart, and our trust in God’s plan for our lives.

Though we lived across the US, I rejoiced with her when her call finally came on Easter Sunday.  And was so happy for her to be released to go home and recuperate with her family, weeks later.  And my heart broke when she wrote about her first episode of rejection with the new heart, requiring the nasty high dose steroids.  Each day I looked for new updates and was bummed for her when she was readmitted to the hospital for severe pain.  And the days that followed as her health would take a turn for the worse on a daily basis, with no answers from the doctors as to why.  And then the fateful day when her sister had to tell the world about God taking Stephanie home to be with Him.  This news came the day we travelled down to Stanford.  Stephanie had only received her new heart less than 3 months ago!  And for the first time, for me, the pain in my chest had meaning.  My heart was breaking for her sweet little girl and her husband, who thought they were sending their sweet mom and wife to “just get checked out”, and didn’t travel with her to the hospital hours away.  My heart was heavy for her sister, as I thought of my own wonderfully vivacious sister and what news like this would do to her.  And her mom and all the other family & friends who’d gathered together and rallied up prayers and praise for this young woman, whose light had shone on so many people.  And then my heart felt lighter for Stephanie, because all the pain was gone.  All the struggles after the transplant, and most certainly before the transplant, were no longer issues.  She is with her Father in Heaven creating all those rainbows!

As Scott explained to this young Cardiology Fellow a look of compassion and understanding flickered in her eyes as she regained her professional composure and the words that followed reflected that.

I composed myself and explained to her that I just wanted upfront answers one way or the other as to whether I’d be a candidate at Stanford for a heart.  I realized that they were now also trying to figure out if a liver needed to be thrown in but I felt as if everyone was stalling to tell me “no” and I just wanted an answer one way or the other so I could go on with my life.  I was good with whatever the answer was, but I am tired of being in “limbo”.  

She left the office and told me the cardiologist would be in momentarily.  Approximately 40-45 minutes later, the Fellow and the cardiologist came in.  The cardiologist spent the next 30-45 minutes assuring me I was a great candidate for the heart transplant based on my age and current health, and they were only trying to figure out if I needed to be dual listed.  She answered general questions I had about meds required after transplant, stats on 2^nd transplants etc and both Scott and I came away from the appointment reassured that if I choose this route, we’ll be in good hands at Stanford. 

I’m currently still waiting on results from the cath and the liver test.  The echo did show a decrease in my ejection fraction since March.  It was 55% in March and it was 46% on May 31^st, which is still higher than last July’s ejection fraction of 35%-40%.   I also have a couple of tests and another clinic visit scheduled at Stanford on June 16^th.   

That’s all for now. 

Stay tuned later this week with photos on how I celebrated 26 years with Eli’s heart!  That is happening on June 8^th so probably won’t have any updates until the weekend.

Write Your Story

By Francesca Battistelli

They say
You're the King of everything
The One who taught the wind to sing
The Source of the rhythm my heart keeps beating

They say
You can give the blind their sight
And You can bring the dead to life
You can be the hope my soul's been seekin'

I wanna tell You now that I believe it
I wanna tell You now that I believe it
I do, that You can make me new, oh

I'm an empty page
I'm an open book
Write Your story on my heart
Come on and make Your mark

Author of my hope
Maker of the stars
Let me be Your work of art
Won't You write Your story on my heart

Write Your story, write Your story
Come on and write Your story, write Your story
Won't You write Your story on my heart

My life
I know it's never really been mine
So do with it whatever You like
I don't know what Your plan is
But I know it's good, yeah

I wanna tell You now that I believe in
I wanna tell You now that I believe in
In You, so do what You do, oh

I'm an empty page
I'm an open book
Write Your story on my heart
Come on and make Your mark

Author of my hope
Maker of the stars
Let me be Your work of art
Won't You write Your story on my heart

Write Your story, write Your story
Come on and write Your story, write Your story
Won't You write Your story on my heart

I want my history
To be Your legacy
Go ahead and show this world
What You've done in me
And when the music fades
I want my life to say

I let You write Your story, write Your story
Write Your story, write Your story

I'm an empty page
I'm an open book
Write Your story on my heart
Come on and make Your mark

Author of my hope
Maker of the stars
Let me be Your work of art
Won't You write Your story on my heart

Write Your story, write Your story
Come on and write Your story, write Your story
Won't You write Your story on my heart