by Emily Armentrout
When everything that could go wrong does go wrong, some people in this world would shut down, give up and let the bad things take their will to live, but the Parson family are not just some people.
Audrey Hepburn once said, “I love people who make me laugh. I honestly think it's the thing I like most, to laugh. It cures a multitude of ills. It's probably the most important thing in a person.”
This seems to be the mantra the Parson family lives by, loving to laugh and loving each other.
Gary, father and husband, drives truck for a living, while his wife, Sally, works at The Nail Emporium, located at their home in LaFontaine, and their son, Evan, is a senior at Southwood Jr./Sr. High School. From the outside the Parsons look like any other family, but it’s the insides that have caused this family struggle for the past 15 years.
Gary was diagnosed with polycystic kidney disease in 2001. Polycystic kidney disease causes cysts to grow continually inside the kidneys causing five-ounce kidneys to grow, in Gary’s case, to 12 pounds apiece. After being diagnosed in 2001, Gary went into end-stage renal failure a year later, and was put on dialysis.
“Dr. Dominguez, my nephrologist in Indianapolis, was able to control my condition with medicines, which slowed down the disease. Everything I have learned about polycystic disease shows it is more aggressive in males than females,” Gary told The Paper. “It progressed quickly, even with medications, but luckily, I was able to get a transplant.”
Gary was on the transplant list for 17 months after his end-stage diagnosis. After his transplant, Gary had a 10-week recovery period before he had to go back into surgery to remove his kidneys, which had grown to almost 40 times the size of an average kidney. As long as there is blood flow to polycystic kidneys, the cysts will continue to grow. After Gary’s second surgery and 8-10 weeks of recovery, he returned to work in late 2004.
From the time Evan was six months old, the Parson family knew he would be facing surgeries of his own. He was diagnosed with two heart defects, aortic stenosis, which is a narrowing of his arteries, and coarctation of his aorta, which is a narrowing of the area where the blood vessel connecting the pulmonary artery to the proximal descending aorta inserts. The Parson family made biannual trips to Riley Hospital for Children for the first two years of Evan’s life. Doctors kept a close eye on his condition and at two years old, he had a heart catheterization. After this, while the doctors continued to monitor Evan’s condition, he became tired easily.
“He couldn’t gain weight very well. Sometimes it was extremely hard for him to catch his breath,” Sally told The Paper.
By the time Evan was 10 years old, the pulse in his legs and lower extremities had become very faint and he continued to grow more tired every day. In April 2007, Evan had his first stint placed, and in June of the same year, Evan went in for open-heart surgery at the age of 11. The doctors found the stenosis was worse than they originally thought, describing it as a thick rubber band wrapped tightly around Evan’s main artery. Thankfully, as Evan is nearing his high school graduation, he has been doing well.
“Evan will have to have another stint put in when he is done growing,” said Sally. “And he’ll have yearly checkups for the rest of his life.”
With Gary’s first surgery in 2004 and Evan’s surgery in 2007, the Parson family had been through enough to last them a lifetime, but life wasn’t done throwing them curveballs just yet. In 2006, before Evan’s surgery, Sally was diagnosed with pulmonary fibrosis, a disease that took her mother’s life.
Pulmonary fibrosis is a disease of the lungs, where tissue is damaged, causing it to thicken, which does not allow the lungs to work properly, making it increasingly harder to breathe as the disease worsens. “In the beginning, the doctors told me it was a slow disease, where your lungs actually turn hard. They said I would probably die of something else because the disease worked so slowly,” said Sally.
“She degenerated extremely fast. One week, she would be in the yard working and the next, she couldn’t walk across the yard without help. She just couldn’t breathe,” added Evan.
Sally’s disease progressed much faster than the doctors anticipated. Breathing became a struggle in 2008, which caused her need for oxygen tanks all throughout 2009. Just walking the 25 yards from the house to her nail shop was a task she could no longer accomplish without the help of her husband or son and an oxygen tank. Even though that was a serious situation for the family, they constantly interjected humor.
“We used to grab her oxygen tubes and act like we were going to cut them. It was a science lab in here, tubes and tanks everywhere,” Evan told The Paper.
Sally was placed on the transplant list, but the normal wait is 18 months. Sally did not believe she had 18 months left. After being listed in May, the Parson family got the call they thought was 18 months away. In August 2009, they received a call that there were lungs waiting for Sally.
“We got down to the hospital and got prepped. They had collected the lungs and were getting ready to roll me out of my room when Gary got another call. The way he hung up the phone, followed by the nurse coming in, I knew the lungs were bad,” said Sally. “Evan was a mess. He kept asking why God did this when he’s supposed to be good, but a nurse took him aside and told him ‘God is watching out for your mom because if we had given her those lungs, she wouldn’t be here,” added Sally.
The Parson family went home, heartbroken and exhausted. They went back into their normal routines. Sally went back to work and Evan went back to school. Gary went back to work one day, with horrible stomach pains, only to find out that he was due for another surgery. Gary had to have his gallbladder removed, immediately.
“I’m struggling for every breath, thinking ‘it’s my turn to get fixed’ and there he is, having another surgery,” Sally told The Paper.
Sally believes that surgery was meant to happen exactly when it did, because when it was her turn, Gary and Evan were going to have to be well to take care of her.
“I’m healing. We need 15 to 20 oxygen tanks to get Sally through the day, and Evan is taking care of both of us,” added Gary.
Finally, Sally’s miracle came, but not until she had reached what she believed was her limit.
“We were sitting right here in the living room. She was crying and I was crying. She started telling me where the insurance papers were. She said ‘I’m not going to be here in two weeks.” recalls Gary.
A couple hours later, the transplant team called. On their way down, Gary called the authorities to see about getting an escort because the viability of lungs is not as long as other organs. They cannot stay on ice or pumps as long as other organs can. The authorities informed Gary that they do not offer escorts and that should they catch him traveling over the speed limit, they would ticket him. The Parson family continued down to Indianapolis on their own, no escort and miraculously, no traffic.
“By the time I had parked the car and got into the waiting room after dropping Sally and Evan off at the door, she was already deep into surgery,” added Gary.
After the almost-five-hour surgery, the doctor informed Gary and Evan that the surgery was successful. Gary asked, because Sally would want to know, how bad the lungs were and how much time she would have had. Her doctor told Gary she would not have survived another week.
The Parson family had been living a normal life since 2009. Evan was working through high school and Sally was back at work, as was Gary, until May 5, 2012. Gary was in an automobile accident within miles from his home. The other driver was not seriously injured, nor was Gary, or at least, they didn’t think he had been seriously injured.
The trauma from the accident caused Gary’s kidney to go into chronic rejection. After his blood pressure became so erratic he once passed out, the family knew that something wrong. This rejection started to show itself slowly by showing up as scar tissue in later biopsies. Rejection meant that Gary would once again be placed on dialysis and would eventually need another transplant.
Gary hopes to have his second transplant sometime this summer. Though he is currently on the donor list, he already has a living donor, which happens to be a family friend just willing to donate.
“When Gary was in the hospital, I had told him, and he came to the hospital and said that if he was a match he would like to donate,” Sally told The Paper.
The Parson family tries to look at their situation with as much humor and love for each other as they can. Though their situation looked dire at times, and they thought they were losing faith, they always try to make light of things whenever they can.
“With everything that has gone on and everything that has happened, you lose a lot of faith, because you wonder what else can go wrong. You just can’t seem to catch a break. It seems like on the home stretch, there’s an accident, right before the finish line,” said Evan.
The family realizes that you can only hold so much in. They admit they have spent a lot of time crying, but their focus is to end it with a laugh.
“After everything we’ve had to go through, we’ve cried enough. You understand that relieves a lot of stress, but if I am going to sit here and cry about it, I’m not doing anything to help. When I could take the opportunity to make mom and dad laugh, make their day a little brighter, and at least ease the suffering for that little bit of time, I’m going to,” added Evan.
Humor is their coping mechanism.
“It’s so easy today to become depressed about the littlest of things, so we take that as a challenge to stay positive,” said Evan.
“If we got so drudged down, we’d never get anything done. For all that’s happened and all that is going to happen, we’ve got to laugh,” added Gary with a laugh.
Gary, Sally and Evan also try to use their experiences as a teaching tool for others.
“So often people don’t know they can be a living kidney donor. They don’t know anything about it,” Gary told The Paper. “They don’t know you can save someone’s life like that.”
If you are interested in learning more information about becoming a living donor, you can visit www.kidney.org.