Stories of hope

My husband Bob lit up a room when he walked in. He had a great sense of humor and you would never hear him say a bad word about anyone. We met just out of high school when we worked together at the same ‘mom and pop’ grocery store. The first time he saw me he told his friend “That’s the girl I am going to marry.” And he did! We were married September 12, 1981. Our son Robert was born in 1982, and our daughter Jennifer came along in 1984.

By 1995, life was going well for us – we were happy being married, working hard and raising our two kids. After we got back from a trip to Hawaii, Bob fell ill. We thought he might have contracted a parasite, so doctors gave him medication and encouraged him to quit smoking. The medication didn’t help and it wasn’t until he continued to complain to his doctor that more testing was done and revealed his heart was damaged.

During this same time period, Bob’s dad and sister were in heart failure.  We were told they had contracted the same virus that attacked Bob’s heart. There was no mention it might be a genetic condition. Although we were worried, we felt everything would work out as Bob began medication to manage his condition.

Twelve years passed and Bob once again fell ill. We went to our local hospital, but he was quickly flown by air ambulance to The Ohio State University Wexner Medical Center. Through extensive testing, we learned he was in total heart failure and doctors wanted to implant a Left Ventricular Assist Device (LVAD) to bridge him to a transplant. Bob would not survive without the LVAD and a new heart. Everything was happening so fast. e were in shock.

Doctors were firm – he would need a transplant to survive, but he must be smoke-free for six months to be eligible to be listed on the national transplant waiting list. Bob knew it would be difficult to quit smoking, but he knew he had to.

After the LVAD was implanted, Bob worked on being smoke-free. Unfortunately, just as he was to be listed, he suffered a stroke.   

Because of the stroke, Bob had to be removed from the list. He was sent home and we worked for months to rehabilitate him to get him back on the transplant list. In February 2008 he began to have some issues with his LVAD – he was told he needed a new pump. As we were wrapping our minds around this, the unimaginable happened.

On February 21 he woke up and just didn’t feel right. I called 911 and a special team from Columbus came to transport him to the hospital in the middle of an ice storm. His right ventricle was weakening and his vitals were plummeting. We got him to the hospital after the longest ambulance ride of my life, and tragically on February 22, my sweet, funny, witty husband Bob passed away at age 48.

A true gift for our family through the pain was the decision for Bob to become an organ, eye and tissue donor. While we hadn’t discussed it before, we had been waiting for someone to donate to him, how could we not do the same for someone else and spare them the grief? Bob saved three lives through the donation of his kidneys and liver and gave the gift of sight to two people through cornea donation. It brings us comfort to know he lives on.

We’ve since received one letter from his kidney recipient. It was so wonderful to hear how Bob gave them their life back. While I haven’t written back yet, I am hoping to one day have the strength to reply.

In the years following Bob’s death, our daughter Jennifer has had to have an LVAD implanted – she has the same disease as her father and was diagnosed on his birthday, February 2, 2016.

Jennifer and Noah

After Jennifer was diagnosed we decided to take part in a study to isolate the gene that was wreaking havoc on our family. After having my son and Jennifer‘s kids tested, only Jennifer and her son Noah have the gene – BAG3.

Jennifer is doing well with her LVAD and Noah will be closely monitored and tested. While Jennifer is on the heart transplant list, she is not currently active.

The ripples of donation are far reaching for our family. First with Bob needing a heart and the ripple that extended with his gifts. And now, as we anticipate a hero to save Jennifer’s life and one day Noah’s, we are in awe of and celebrate the ripple effect of donation. I urge you to consider registering today to give hope to those waiting – like my sweet husband and now, daughter.