For Kansas couple facing kidney and pancreas transplants, excitement mixes with trepidation

The Kansas Reflector welcomes opinion pieces from writers who share our goal of widening the conversation about how public policies affect the day-to-day lives of people throughout our state. Liz Hamor runs a leadership consulting business, Center of Daring.

When Dee Martinez and Judi Jones pledged their wedding vows to each other in September, they understood the spectrum of “in sickness and in health.”

Dee had faced severe complications from her Type 1 diabetes that contributed to a stroke in 2016 and left her needing daily dialysis by 2018. The newlyweds didn’t know at the time of their vows that nine months later they would spend their first Pride Month as a married couple with amazing news — Dee’s doctors approved her for a pancreas and kidney transplant.

Dee and Judi quickly realized that the incredible news posed added challenges. To receive full approval for the life-giving gift of two donor organs, Dee must choose one person to take with her to Kansas City for the surgery and post-transplant care. This person must stay the entirety of the one week post-surgery ICU stay, the next two weeks of daily hospital visits, and then the next three to five weeks of intensive post-transplant training and care.

Judi wouldn’t have it any other way than to remain by the love of her life’s side during this next part of their adventure together. 

While Medicaid and Medicare should cover Dee’s medical expenses, Judi, a self-employed therapist with her own business, will need to take up to two months off work. As if the loss of income wasn’t enough of a challenge, the couple will also have to pay for extended-stay housing in Kansas City close to the University of Kansas Health System. 

Judi’s 19-year-old daughter, Emma, will stay in their house in Wichita with their dogs. They can’t forget about the mortgage and bills there, and Judi jokes that Emma would appreciate still eating while they’re in Kansas City. With all extra expenses considered, they estimated a $20,000 need.

Determined to not let money stand in the way of Dee’s opportunity for a new lease on life, they did what no one ever wants to do. They asked their family and friends for help through a GoFundMe, hoping for a Pride Month miracle. Money trickled in slowly during June from friends and family who were happy to give, but as of writing this story, they still need about 85% of the funds.

The costs of a lifelong battle with diabetes

Whether caused by the unchecked greed of corporations and pharmaceutical companies or the downfalls of our American health care system, the financial costs of being chronically ill are often extraordinary. The costs aren’t just financial, though. They are physical, mental and emotional as well.

Doctors diagnosed Dee with Type 1 diabetes around the age of 13. She chuckles about a “family conspiracy theory” that postulates that her dad’s exposure to Agent Orange in the Vietnam War contributed to her and her sister’s myriad of health issues.

She believes it’s disappointing, not funny, that many American families could be living with similar military service-related health issues with little to no support from the government. Theories aside, Dee acknowledges it’s possible her diabetes began after a virus attacked her pancreas. Whatever the cause, she required at least five shots of insulin a day from the age of 13 through her mid-40s.

None of Dee’s jobs ever offered insurance, and the prohibitive out-of-pocket cost of insulin meant she often tried to stretch it to last. She admits this likely led to some of the complications she later experienced. 

In 2015, a serious infection struck Dee’s left kidney. It was so severe that doctors removed the kidney and part of her left lung, where the infected kidney had adhered itself. Shortly after that, in 2016, just into her mid-40s, Dee suffered a stroke that put her in a coma for a week and a half. Coming out of the coma, she reached out to her friend, Judi, who showed up at her side to take care of her and never left. 

The stroke also caused a detached retina and affected Dee’s vision. Laser surgery to fix her vision actually made it worse, leaving her legally blind. This new diagnosis left her without the ability to drive, but also qualified her for disability benefits, giving her insurance for the first time in her adult life.

Qualifying for Medicaid allowed Dee to get an insulin pump. A price of $5,000 covered just the device, which allowed her to stop giving herself injections five times a day. Supplies and insulin required by the pump cost $500 a month. Dee’s diabetes remained a challenge to control, so she needed a continuous glucose monitor. She attaches one of these small devices to her abdomen every 10 days. The device checks her glucose every five minutes and then sends the readings to her pump, which in turn provides her with insulin as needed. 

Unfortunately, insurance only covers continuous glucose tracking for most of the year, leaving her with a window of 20 days every six months during which she has to pay $150-$300 per week out-of-pocket for supplies or rely on the old-school, finger-stick glucose monitors throughout each day. Test strips for those aren’t cheap either.

By the time Dee received her insulin pump, she required dialysis three times a week for her remaining kidney. She would go into a clinic at 4 a.m. to receive the lifesaving treatment she needed, and then go on about her active life. She fought to keep diabetes from slowing her down, but she can recall numerous trips to the emergency room for uncontrollable blood sugar challenges and countless infections due to the toll the disease took on her immune system. 

In late 2017, doctors installed a catheter in Dee’s abdomen that allowed her to give herself peritoneal dialysis at home. Every night for the last four and a half years, she or her wife attach the catheter to a dialysis machine that runs for eight hours while she sleeps. The cost of the dialysis, despite it being done at home with no nurse, is billed to insurance at $180,000 per month.

No, that’s not a typo.

There’s a psychological cost to living with hard-to-control diabetes like Dee’s. After countless medical interventions, the long-term trauma of thousands of needles, innumerable high and low blood sugars, and the constant hyper-vigilance required to keep herself alive, she says she gets “anxious about everything.” Family gatherings are fraught with concern over catching even a little cold, and she must often avoid them altogether. She sees a therapist once a week to help her handle the anxiety of living with a chronic illness. 

A new lease on life

Dee’s new pancreas and kidney will cure her diabetes, or at least that’s the expectation. She hopes to be matched with a donor soon but notes that she knows someone who had to make three trips to Kansas City before they found their perfect match, so she is mentally and emotionally prepared for it to take awhile. 

She also urges people to become donors and give the gift of life. 

“Kidneys — everybody has two, and if you’re in good health, you can donate,” Judi said. “Or sign the back of your driver’s license to be a donor, because that’s how she’s getting the pancreas.”

Dee is most looking forward to being around for her three grandchildren and her wife, as well as having more energy after the transplant.

Her wife chimed in: “They say that dialysis is the equivalent to running a marathon. So she basically right now is running a marathon every night.”

“I really do want to run a marathon after. A real one,” Dee stated, surprising her wife. She continued wistfully, “I also want to take a long soak in a bath.”

It’s been more than seven years since she’s taken a bath because of the pump, catheter, and continuous glucose monitor all attached to her abdomen.

When asked what this surgery will change for Dee, the list poured out. Their days are currently planned around what time she starts dialysis for the next day and are spent working diligently to maintain a steady blood sugar. Without a pump or dialysis, they’re looking forward to no bedtimes and not having to plan ahead to take food and emergency insulin everywhere.

After a pause, Dee finished, “More freedom.” She spoke of freedom to be as energetic as she wants to be without worrying about overdoing it and affecting her blood sugar, along with the freedom to see family and friends.

As Pride Month rolls into the month when many Americans celebrate freedom, a desire for freedom — or more freedom — is something most can understand. While Dee hopes to have that freedom this year, some questions remain for those struggling with long-term illness like hers.

How many Kansans could be spared much of what Dee has endured if our state expanded Medicaid? Or if our nation reformed its health care system more thoroughly? How many people would have a better quality of life if the drugs required to sustain their lives were free or affordable?

If you would like to support Dee and Judi in their journey to more freedom, their GoFundMe is still taking donations. Anything donated above their financial needs for the post-transplant care will later be donated to charity.

Through its opinion section, the Kansas Reflector works to amplify the voices of people who are affected by public policies or excluded from public debate. Find information, including how to submit your own commentary, here.