The Kansas Reflector welcomes opinion pieces from writers who share our goal of expanding the conversation about how public policy affects the daily lives of people across our state. Liz Hamor runs a leadership consulting firm, Center of Daring.
When Dee Martinez and Judi Jones vowed to tie the knot in September, they understood the specter of “illness and health.”
Dee had faced serious complications from her type 1 diabetes which contributed to a stroke in 2016 and left her on daily dialysis in 2018. The newlyweds did not knew at the time of their vows that nine months later they would spend their first Pride month as a married couple with some amazing news – Dee’s doctors have approved her for a pancreas and kidney transplant.
Dee and Judi quickly realized that the incredible news posed additional challenges. To receive full approval for the vital donation of two donor organs, Dee must choose one person to take with her to Kansas City for surgery and post-transplant care. This person must stay the entire one-week stay in intensive care after surgery, the next two weeks of daily hospital visits, and then the next three to five weeks of post-transplant training and intensive care.
Judi would have no other way but to stay with the love of her life during this next part of their adventure together.
While Medicaid and Medicare are expected to cover Dee’s medical costs, Judi, a freelance therapist with her own business, will have to take up to two months off. As if the loss of income wasn’t enough of a challenge, the couple will also have to pay for long-term housing in Kansas City, near the University of Kansas Health System.
Judi’s 19-year-old daughter Emma will be staying at their home in Wichita with their dogs. They can’t forget the mortgage and the bills there, and Judi jokes that Emma would appreciate continuing to eat while they’re in Kansas City. With all additional expenses taken into account, they estimated a need of $20,000.
Determined not to let money get in the way of Dee’s opportunity for a new life, they did what no one ever wants to do. They asked family and friends for help through a GoFundMe, hoping for a Pride Month miracle. Money trickled in slowly in June from friends and family members who were happy to donate, but at the time of writing this story they still need around 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 healthcare system, the financial costs of chronic illness are often extraordinary. However, the costs are not only financial. They are also physical, mental and emotional.
Doctors diagnosed Dee with type 1 diabetes around the age of 13. She scoffs at a “family conspiracy theory” which posits that her father’s exposure to Agent Orange during the Vietnam War contributed to the myriad health problems she and her sister had.
She thinks it’s disappointing, not funny, that many American families can live with similar military service-related health issues with little or no government support. Theories aside, Dee acknowledges that it’s possible his diabetes started after a virus attacked his pancreas. Whatever the cause, she needed at least five insulin injections a day from the age of 13 until her mid-40s.
None of Dee’s jobs ever offered insurance, and the prohibitive cost of insulin meant she often tried to stretch it to last. She admits that this probably led to some of the complications she later experienced.
In 2015, a serious infection struck Dee’s left kidney. It was so bad that doctors removed her kidney and part of her left lung, where the infected kidney had stuck. Shortly after, in 2016, just in her mid-40s, Dee suffered a stroke that put her in a coma for a week and a half. Coming out of a coma, she reached out to her friend, Judi, who showed up at her side to care for her and never left.
The stroke also caused retinal detachment and affected Dee’s vision. Laser surgery to repair her vision actually worsened her, 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 got Dee an insulin pump. A $5,000 prize only covered the device, which allowed him to stop injecting himself five times a day. The supplies and insulin needed for the pump cost $500 per month. Dee’s diabetes remained a challenge to control, so she needed a continuous blood sugar monitor. She attaches one of these small devices to her abdomen every 10 days. The device checks his blood sugar every five minutes, then sends the readings to his pump, which in turn provides him with insulin as needed.
Unfortunately, the insurance only covers continuous glucose monitoring for most of the year, leaving her with a 20-day window every six months during which she must pay between $150 and $300 a week for the supplies or rely on old school. , glucometers at your fingertips throughout the day. The test strips for these aren’t cheap either.
By the time Dee received her insulin pump, she needed dialysis three times a week for her remaining kidney. She would go to a clinic at 4 a.m. to receive the life-saving treatment she needed, then go on with her active life. She battled to keep diabetes from slowing her down, but remembers many trips to the emergency room for out-of-control blood sugar issues and countless infections from the disease’s toll on her immune system.
In late 2017, doctors installed a catheter in Dee’s abdomen that allowed him to do peritoneal dialysis at home. Every night for four and a half years, he or his wife have attached the catheter to a dialysis machine that has been running for eight hours while she sleeps. The cost of dialysis, although performed at home without a nurse, is billed to insurance at $180,000 per month.
No, it’s not a typo.
There is a psychological cost to living with hard-to-control diabetes like Dee’s. After countless medical procedures, the long-term trauma of thousands of needles, countless high and low blood sugars and the constant hyper-vigilance needed to keep herself alive, she says she’s getting ‘worried about everything’. . Family gatherings are full of worries about catching even a mild cold, and she often has to avoid them altogether. She sees a therapist once a week to help her deal with the anxiety of living with a chronic illness.
A new breath of life
Dee’s new pancreas and kidney will cure his diabetes, or so it was expected. She hopes to be matched with a donor soon, but notes that she knows someone who had to make three trips to Kansas City to find her perfect match, so she’s mentally and emotionally prepared for it to take a while.
She also urges people to become donors and give the gift of life.
“Kidneys – everyone has two, and if you’re healthy you can donate,” Judi said. “Or sign the back of your driver’s license to be a donor, because that’s how she gets the pancreas.”
Dee looks forward to being there for his three grandchildren and his wife, as well as having more energy after the transplant.
His wife chimed in, “They say dialysis is like running a marathon. So right now she’s running a marathon every night.
“I really want to run a marathon afterwards. A real one,” Dee said, surprising his wife. She continued wistfully, “I also want to take a long bath in a bath.”
It has been over seven years since she last bathed because of the pump, catheter and continuous glucometer strapped to her abdomen.
When asked what this surgery would change for Dee, the list went viral. Their days are currently planned around the time she starts dialysis for the next day and are spent working diligently to keep blood sugar levels stable.
When asked what this surgery would change for Dee, the list went viral. Their days are currently planned around the time she starts dialysis for the next day and are spent working diligently to keep blood sugar levels stable. Without a pump or dialysis, they look forward to not having to go to bed and having to plan ahead to take emergency food and insulin everywhere.
After a pause, Dee finished, “More freedom.” She talked about the freedom to be as energetic as she wants without worrying about overdoing it and affecting her blood sugar, as well as the freedom to see family and friends.
As Pride Month arrives the month many Americans celebrate freedom, a desire for freedom – or After freedom – is something most can relate to. While Dee hopes to have that freedom this year, some questions remain for those battling a long-term illness like hers.
How many Kansans could be spared much of what Dee endured if our state expanded Medicaid? Or if our nation reformed its health system more deeply? How many people would have a better quality of life if the drugs needed to survive were free or affordable?
If you want to support Dee and Judi on their journey to more freedom, their GoFundMe is still accepting donations. Any donation above their financial needs for post-transplant care will then 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 review, here.
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