Our story is no more special than anyone else's but it was greatly enhanced by Ellie's guidance, dedication, and professionalism. We are grateful to the VA for the opportunities of a "heart" and getting to meet Ellie. In another life, I was a successful district manager in the fashion business. But time, the loss of a mother and severe depression along with a bleeding disorder and fistula surgery had left me a feeling of diminished capacity. But God never gives us more than we can bear. So when E called in September 2018 and said he needed a caregiver, I knew I had to step up.
Enter Ellie! From day one her "get the job done" attitude had an effect on me. She would be the instrument God used to get me through. She held my hand, told me to pack for two weeks and shoved me onto a small medical plane. I had not flown in over 20 years, long before 9/11 and I swore I never would fly again. E had not flown in over 40 years. But now I was on a small (tiny) plane to Madison Wisconsin with Ellie's voice in my head encouraging and coaxing me on.
When I got to Madison, we were met by another force of nature. My path was set. These two dynamic nurses would carry me through that next 6 months while E was in the hospital. Halloween, Thanksgiving, Christmas, New Years and Valentines would all pass as Stacy provided LVAD protocol caregiving into my head. Ellie served as interpreter, (we both spoke Pittsburgese) comforter, and now a friend. She was never any further away than the phone allowing me to call any time. She was a lifeline. But time got us back to Pittsburgh. I found myself seeking Ellie's council to help navigate a VA I had never been in. I keenly anticipated her visiting us in the cardiac rehab. She made an appearance at every appointment. She monitored E's vitals and needs. She made us feel he and his care was a priority. She also made sure that I was a caregiver was taking care of myself.
Fast forward to May 2019. We had to go back to Madison for a UNOS Status Upgrade. Over 30 days we waited but our status was disrupted by a more seriously ill patient and we prepared to return to Pittsburgh without a heart. Ellie was there and reassured us. She prepared us to live with the L-VAD for several years. We were scheduled to leave on Tuesday. the call came on Friday at 7 am on the wrong phone and we just had minutes to accept or reject. We accepted and called Ellie. She stayed in touch for the next 72 hours plus. We texted about the progress reports from the OR. She explained and encouraged and held my hand all the way. I wish she was there!
So, through all the long days and nights at the hospital, grueling, mind-numbing education and temporary setbacks. I had my daughter for three weeks and I had Ellie for reinforcement.
The day before Thanksgiving "serendipity" brought us together in the hallway with air hugs and kisses (she had a cold) but in her eyes, I could see that she was seeing the person I used to be, myself as I know me, my own force of nature. Forty pounds lighter, mentally tough, and doing what I do and did in the past. Managing the hell out of the situation. There she was, my anchor, my muse, my friend. My inspiration to rediscover my forgotten potential. A resourceful, problem solving, professional who offered solutions with options. She saw me but not realizing the part she had played. She had helped me rediscover who I was in that afterlife. I felt like a Phoenix risen from the ashes. She was a tremendous support in helping me be a caregiver to E and to live my best life.
Pittsburgh is not a Transplant Center but it should and could be. E's journey from L-VAD to transplant was long and arduous but a blessing. Ellie was a huge part of God's blessing in our lives.
We returned to Madison for E's 12th biopsy. We could not have gotten this far without "God's Grace" and his gifts of E's heart and Ellie's help.