Denise Ely: Enjoying a full life with a 98 year old liver

Where I live: 

I have been living in magnificent Monmouth County for the past 35 years, in Colts Neck, Rumson and now—the “hippest” town— Red Bank. I raised my two sons, Evan (age 33) and Eric (age 30) in Rumson and am excited to be gaining a new daughter-in-law, Chelsey Elizabeth, when she and Eric marry.

Life before the liver donation: 

I was 20 years old when my skin started to turn the color of cheddar cheese, my eyes were tinged-yellow, and I was overwhelmingly fatigued. My doctor diagnosed me with “Autoimmune Liver Disease”. There is no cure for this and I was told I would someday need a liver transplant. Scary words to hear, and a bleak future for a 20-year old young lady. But, even with the upsand-downs I went on to live with some normalcy in life for the next 22 years. I became a Series 7 stockbroker on Wall Street. But, the flare-ups of the disease followed me in my career and life. Doctors’ appointments, hospital stays, testing, labs, etc., were just part of life for me. I had high-risk pregnancies, but God blessed me with two healthy sons.

The transplant process: 

I was totally jaundiced, sleeping twenty hours a day, and suffering with encephalopathy. There were times when I didn’t know where I was, and would hallucinate. One time I drove in the wrong direction on the Parkway, and the doctors took my driver’s license away. I was dying and my only hope for life was a liver transplant. I was put on the transplant list. I waited almost nine months and finally, “the call” came–Mount Sinai Hospital had a liver for me. I was raced to the hospital, but that liver was too large for me. I waited two and a half months in the hospital. I was divorced and single then, and my sons, ages 8 and 11, waited for me at home. Eventually, my liver came. With a scarcity of livers in this area, and while on my deathbed, a liver from Texas, from a 76-year-old woman who had died, was flown in. Doctor Florman from Mount Sinai noted, “At the time Denise was transplanted, using a 76-year-old liver was among the oldest ever used and it was considered undoable.”

Meeting the donor family: 

While 92% of donor families desire to know something about the organ transplant recipient, only about 5% actually meet in person. I was fortunate to be in that 5%. My donor, was Geraldine Hodges from Dallas, who was 76 years old when she passed (old enough to be my mother!) My meeting with her family took place in May, 2018, on Mother’s Day weekend. I flew to Texas with my older son, Evan, and met my donor’s daughter, Rebecca Roper, her husband, children and grandchildren. It was one of the most incredible and emotional experiences of my life—meeting the family who made the decision to give me life! Since Rebecca was my age, we bonded like sisters.

Unexpected connections with her Donor Mother: 

We both spent the first ten years of our life in an orphanage/foster home. The second extraordinary coincidence was that we both went back to nursing school and graduated with our BSN’s in Nursing—both at the age of 53 years old! Sometimes I think God sends us messages…My donor family and I have remained close and still keep in constant contact. They are my family now!

How she has been affected: 

The primary and most obvious way is a great gratitude and appreciation for life and being alive. Family means more. Time with family is so valuable now. Experiences mean more than material things (for sure!). I don’t think I fixate on the uncertain future so much as I do in enjoying the present. Health and taking care of myself is a priority for a normal life for me. Since my transplant, I have a different sense of the meaning of death—and I can profess, life is wonderful.

Life after a new life: 

After my transplant, I was doing so well and feeling so healthy again. As a single mother, I knew I had to go back to work. I did not want to go back to the “Wall Street world” to work. I decided, because of my new lease on life, I wanted to give back. So, I went to Rutgers Nursing School, and earned my BSN in nursing. I always like to note that I was not the oldest graduating nurse at Rutgers Nursing School in 2008 (53), but I did have the oldest graduating liver (87 years old)! Ironically, my first job as a nurse was at Mount Sinai Hospital, the same hospital that gave me life, where I went back to work to save lives. The complete circle of life! This past June, I competed in the Ms. New Jersey Senior America in Atlantic City with my platform, “The Miracle of Organ Donation”. I was hoping my participation, as a successful, thriving organ transplant recipient, would encourage others to sign on to be a donor. Although I did not win the the title of Queen, I was “First Runner Up”—quite an honor.

Clearing misconceptions about donating: 

Transplant donors are not a strict group of young, healthy patients anymore. Each donor is evaluated individually. A main misconception is that someone is too old to donate. The oldest donor at age 92 donated his liver to a 69-year-old recipient. And, HIV patients can donate organs to other HIV patients. A Hepatitis C patient can also donate organs today, even if the recipient does not have Hepatitis C, because of the new effective drugs.

Favorite quote: 

My two sons and I have a favorite quote since they were in grade school. “Never, never, never give up”. This is a quote by Winston Churchill. It’s been a source of hope, inspiration, and a bonding “family” quote for the three of us for many years during tough and challenging times—even to this day.