Jack and Gene Johnston share many things — their parents, their family history and their love of warm weather destinations — especially all-inclusive Caribbean get-aways, where they can swim, snorkel, hang out on the beach and enjoy oceanfront dining with their wives. However, they have had very different health experiences. Jack, 56, was born deficient in the liver protein, alpha-1 antitrypsin. Both of his parents are genetic carriers. Two of his siblings, including his twin brother and his sister, are also carriers; however, his brother Gene, 52, is not.

A HELPING HAND Living-donor liver transplantation offers an alternative to deceased-donor organ transplantation.
Photos: Julie Johnston

A family's fight

Alpha-1 antitrypsin deficiency is an inherited disorder that can lead to lung and liver disease, with symptoms first appearing between ages 20 and 50. The main symptoms are shortness of breath, fatigue and recurring respiratory infections, which eventually develop into more severe illnesses, including acute liver and/or respiratory failure.

About 12 years ago, Jack started experiencing difficulty breathing, excruciating stomach pain and fatigue. After his diagnosis, Jack became progressively sicker, until finally, in June 2013, it was clear that his liver was failing. Gene says, “We were on vacation in the Dominican Republic and Jack was clearly in a lot of pain.”

The Johnston brothers Gene (left) and Jack (right) with their wives, Dianna and Julie.

Gene called the hospital where Jack was being treated and was invited in for extensive testing. Because of his matching genetic profile and good health, he was deemed a suitable living organ donor for Jack, who was surprised when Gene approached him about being his donor. With family encouragement, Gene and Jack prepared themselves for a transplantation process in which Jack’s liver would be removed entirely and part of Gene’s liver would be transplanted into his brother.

New beginnings

On January 14, 2014, the two brothers underwent surgery. Gene was on the operating table for 11 hours, while Jack underwent a 16-hour procedure. Both brothers recovered quickly. Jack now takes immunosuppresants and has some water retention (which is decreasing daily), but these are small inconveniences to him. “I feel great!” he says. 

November 2014 promises to be a good time for the Johnston brothers and their wives. They’re heading to the Bahamas. Though Jack says he will have to be careful of the sun (a must for transplant recipients) he’s counting on lots of time snorkeling with his brother — and celebrating beachside with his entire family.