It was 2004 and Deb Gustafson and her wife, Sue Weston, were planning on having a great time. The Flint couple was about to go on long-planned vacation when Gustafson started to feel unwell. Her family had a history of urinary tract and bladder infections and she suspected that her discomfort might be related. Eventually, when her symptoms didn’t pass, she asked to go home and was rushed to the hospital. The couple learned that kidney disease often begins to take its toll long before symptoms arise and for Deb Gustafson that was the case. While in the Intensive Care Unit, she was diagnosed with stage 3 of the disease’s possible 5; her kidneys were slowly beginning to fail.
Though Gustafson began a treatment plan, her symptoms gradually progressed and by 2014, Deb had entered stage 4 of the disease. As the situation grew direr with time, Gustafson’s doctors put her on a strict hydration schedule, but to no avail.
“Some people don’t experience any symptoms until they’re in stage 5. Unfortunately, I experienced symptoms from stage 3 up to stage 5. I made kidney stones, and so there would be times when I would be in pain and have to have a kidney stone crushed for it to pass,” Gustafson said. “I did have pain because my kidneys were shrinking, they were full of stones and in 2016 they finally decided to take them out because they were bad and infecting my whole body.”
It was then that she joined the more than 114,000 people in the U.S. on the national transplant waiting list, according to Donate Life America. DLA is a 501(c)(3) nonprofit dedicated to increasing the number of donated organs, eyes and tissues to aid in life-saving procedures across the country and reports that there are roughly 8,000 deaths a year because organs aren’t donated in time. Perhaps the most striking statistic reported is that 82 percent of the patients who are waiting are, like Gustafson, in need of a kidney. In 2003 the organization dedicated the month of April, directly after National Kidney Month, to be known as National Donate Life Month.
And as successful as DLA has been at registering potential donors, “[DLA registered] 147 million organ, eye and tissue donors in the United States – more than 58 percent of the adult population,” there’s still dire need.
Gustafson and Weston agreed to share their story with BTL in an effort to put attention on the issue and to shine a light on the treatment and prevention of kidney disease because as Gustafson puts it, “Your whole life changes.”
Searching for Donors and Living With Treatment
Shortly after the couple found out that Gustafson’s kidney would have to be removed, Weston got tested to see if she was a compatible donor. Initial tests came back with good news, Weston was a match, but she learned soon after that she too had kidney damage.
“I found out that she had gallstones and pancreatitis which I didn’t know I had because I had no symptoms because otherwise we matched and were excited about me being a donor and when we found out I couldn’t be I was crushed,” Weston said. “I said I gave her my heart and now I want to give her my kidney. We thought things were great, but it didn’t turn out that way.”
While on the waiting list, Gustafson had to undergo hemodialysis, a daily process that filters the toxins out of one’s blood in lieu of regular kidney function. It’s a time-consuming endeavor that the couple elected to do at home.
“In order to do home dialysis you have to go through a 21-day training period at the dialysis center, we were at DaVita, and after the 21 days, hopefully, you’ve learned everything and you’ve passed,” Gustafson said.
Weston was able to become qualified to treat her wife but there were unforeseen challenges surrounding Gustafson’s treatment, too.
“In order to do it from home it takes anywhere from four to five hours because you have to set the machine up, then I hook up, then I run for 2 1/2 to three hours and then we have to tear the machine down. In the meantime, we’re taking blood pressures and temperatures and all sorts of things. So it’s a really time-consuming thing and it’s also really very inconvenient, you have a 75-pound machine that’s your lifeline and that’s what keeps you alive,” Gustafson said. “And in order to do that you have to have physical access to your body in order to be able to hook up and that’s the whole other challenge.”
Initially, her care team created an arteriovenous fistula or a connection between an artery and a vein designed to help Gustafson’s body better-absorb the machine’s filtered blood flow. But Gustafson’s physical access point proved to be a difficult one.
“I’m a very small person and so my veins are very small and I had one fistula and that died,” she said. “The next level is they go up where they put a medical material tube into your arm and attach it to a vein an artery and that’s what your blood flows through to be cleaned by the machine. I had three or four different ones that had to be put in and have clogged.”
Despite those difficulties, the couple was able to soldier on and provide consistent treatment for Gustafson while they looked for a match.
Finding a Match
Gustafson said that perhaps one of the biggest misconceptions she feels people have about organ donation is concerning the speed at which it occurs.
“When the person offers to be a donor for a person, they have to go through an intensive physical and it can take months for the physical part to be done, in fact, the blood test they have to do to make sure all of their body systems are working correctly and to make sure there’s no diabetes and plaque and they do a lot of heart checks and diabetic checks, making sure kidneys are in check,” she said. “It doesn’t happen overnight like you often see in TV shows and read in books. It can take up to a year before you find out if that person’s a match or not.”
That’s why when someone from the couple’s church offered to donate and later found plaque around his own kidney, it wasn’t an overnight revelation. The couple, after investing weeks into following his case had to go back to square one. They were fortunate, however, that in 2016 they were given hope once more when another woman from the congregation approached the couple about donating her kidney. And when she was found to be a perfect donor, Gustafson said she almost couldn’t believe that it was happening.
“I, of course, was ecstatic and of course it began and I gave her the information of who to contact and it went from there,” Gustafson said. “Every little step, every little test she took, we were on pins and needles until we got the results and then we found out in June of 2018 that we definitely were a match.”
Barely two months later in August, the transplant was successfully completed.
Now, although she’ll have to be on medication for the rest of her life, Gustafson said she’s living a life that’s similar to the one she led before her 3 1/2-year stint with dialysis and search for a donor.
“Before the transplant, I went from being very active and volunteering and working to not working, not volunteering, not going out at night, not being able to socialize so it was a drastic change,” she said. “I no longer spend half my life at the hospital or emergency rooms and no longer fight diseases that I’ve had to fight during that time. Now, I’m volunteering, I’m outgoing, I talk to people, I look better. When you have kidney disease, certain people say, like with jaundice you look yellow, when you have kidney disease you look gray.”
Now, Gustafson’s volunteer work focuses primarily on helping others fight kidney disease and general prevention. That began when Gustafson saw an ad for a Personal Action Toward Health class, originally developed by Stanford, being run by the National Kidney Foundation of Michigan on living with chronic disease. She signed up and when the monthly class was finished, she wanted to do more with NKFM. She became a volunteer with the NKFM Leave a Legacy program, presented to groups on the need for kidney donations and encouraged people to sign up with Michigan’s donor organ registry. She also became a resource volunteer for the NKFM, answering people’s questions about kidney disease.
And despite the fact that Weston, too, was recently diagnosed with prediabetes, a leading cause of kidney disease and failure, the couple has remained strong. When asked what their advice is to those just starting their fight, the answer is simple: “Don’t give up.”
“And don’t stop talking to each other,” Gustafson said. “You’ve got to be open. You’ve got to tell each other the truth. … The most important thing is that you have support and loving support and if your partner is that, then you guys can handle anything.”
“That’s what we do,” Weston said. “And if you need to see somebody to talk to, a counselor or someone, do it separately and then go together because some things you don’t think are important, they are and you just don’t realize it at the time.”
“We’ve done all that and it’s so important to have the ability to communicate with each other honestly and openly.”
To find out more about the signs of kidney disease, its stages and where to find treatment go online to nkfm.org. To learn more about donation visit donatelife.net.