An Arsenal of Awareness
Barbara Kushner discusses her husband and her focus on Alpha-1 education
Ever since he was a young boy, my husband, John, had a passion for history. World War II was his particular favorite subject, and in addition to Civil War bayonets and memorabilia, he had a collection of WWII-era guns and rifles. My house is more than just a museum. It’s an arsenal. As it happened, however, it turned out that no arsenal in the world could protect him from the disease that would ultimately take him away from me.
We were married for 32 years, and lived all that time in New Orleans. We had two children — both of whom are married — and a grandchild. John was always a very healthy man. Or so we thought. But when he turned 40, he started having asthma attacks. We thought he was allergic to our dog. So, he was treated. Over the years, however, the asthma did not go away. It got worse, to the point where he was using a nebulizer and inhalers.
We never understood why it got worse. We continued going to the same internist, who continued to treat him for asthma. He was never sent to a specialist. His breathing became more and more of a problem.
When he was around 50, John was appointed to the board of the new D-Day Museum in New Orleans. Despite his health problems, he was a very active participant in the museum. As a commercial real estate specialist, he was able to help them acquire property for expansion.
In 2004, the celebration of the 60th Anniversary of D-Day was underway. John and I participated by taking a D-Day cruise to Normandy. He was truly in his element and looking forward to the adventure. By the time we reached Europe, however, John started experiencing severe swelling in his legs. It got to the point where he had to see the ship’s doctor, who bandaged his legs and told him to see a doctor as soon as he got home. It could be heart or liver problems, the doctor told us. This was the first indication that something was terribly wrong.
On our return, John went back to our internist. He still did not send John to a specialist, but decided the proper course of action would be to remove my husband’s gall bladder. John’s brother, David, implored him to get a second opinion. A second physician gave John the blood test for Alpha-1. When the results came back, his numbers were so low that it was determined that John had advanced liver disease. John had cirrhosis of the liver, and had never known anything was wrong.
A friend in Miami told us that he had heard of Alpha-1 and we set out to learn more. We happened to have a condo in Coconut Grove, so we went to Miami and John was tested by Dr. Adam Wanner at Jackson Memorial Hospital. Pulmonary tests showed that John, who had never smoked a cigarette in his life, had emphysema. But the worse news was the liver disease. It was at an advanced stage and John was told he’d need a liver transplant right away.
So, on July 4, 2005, John, who had been admitted to Mayo Clinic in Jacksonville, received a liver transplant. When the surgery was performed, doctors found that he had gangrene of the gall bladder. His body was riddled with infection. An aspergillus infection had traveled to his brain. After six weeks in the hospital, John was on life support. When it was clear that there was no longer any hope, we had to remove him from life support.
One month later, Hurricane Katrina hit New Orleans. My daughter lost her home and I had to leave. I returned home for a while, but I realized that it was time to go. The house was now too large, New Orleans was a disaster. And even though our friends there had been so supportive, the memories were becoming too much to handle. I moved to Miami, where I was embraced by the Alpha-1 community, particularly John Walsh, who lives near me. The people at the Alpha-1 Foundation were incredible. They helped me to get on with my life, and through them, I began to find a sense of purpose. My children and I decided to try to do something so that no other families would have to go through this needless horror. Needless, because even though the disease itself was serious, it was the lack of awareness that took John before his time. We made up our minds that we would focus our efforts on Alpha-1 education and awareness. With that as our mission, we set up the John Kushner Family Fund, under the umbrella of the Alpha-1 Foundation.
I know that research is so important. The Alpha-1 Foundation helps to bring new treatments, new information and new paths to a cure for Alpha-1. But awareness is just as important. I remember reading a story in Alpha-1-To-One magazine about a woman who’d lost her husband. Her story was an echo of ours. She said that it would infuriate her (as it did me) that when doctors encountered cirrhosis in her husband, their automatic reaction was to accuse him of having been an alcoholic. I know that if John had not taken his brother’s advice and seen another physician, his original internist would have presided over John’s death and would have simply said that John died because he drank too much. It leads me to wonder how many other John Kushners there are out there, who’ve been misdiagnosed because their doctors just hadn’t heard of Alpha-1.
That’s why there is a John Kushner Family Fund. I’ve never been involved in fundraising before. Thankfully, the Alpha-1 Foundation is behind us all the way. This sort of positive involvement has helped me to move forward in my life. It gives me a focus. It feels good. And everyone’s been so supportive. We’re starting to make strides now, and while we’re helping to help others who are in distress, our fundraising organization is helping me to heal, too.
When you give generously to the Alpha–1 Foundation, I hope you will also include a donation that is earmarked for the John Kushner Family Fund. Awareness came too late for John. It’s not too late for others.
This article was first published in Alpha-1-To-One magazine, Vol. 5, No. 2
