Royal Oak Woman Seeks Living Kidney Donor
(Natalie Berger, Sept. 29, 2019)
Royal Oak, MI – A lot of people have dreams of great heroism– pulling someone from a burning house, saving a school bus full of children from hurtling off a cliff, or saving all of New York City from the Green Goblin We’d like to think of ourselves as the person who would step up and risk their life if such a scenario were to happen. But what if you had the opportunity to save someone’s life right now? Would you do it? While most of us might not encounter any of the situations mentioned, there is someone right here in our neighborhood in need of your help.
39-year-old Lesley Miles who currently lives in Royal Oak suffers from Polycystic Kidney Disease, a genetic condition she has been facing since she was two-and-a-half-years-old. While she has been living with decreased kidney functions for her entire life, her condition has worsened significantly in the last three years. This month marks her one year anniversary on the Michigan organ transplant list for a new kidney and every day she hopes to get a call from her doctor that a match has been found.
“I have to have my phone with me at all times,” Miles says. “They can call me at four in the morning to say they’ve found a donor and I have 45 minutes to answer otherwise I lose my chance.”
“Waiting for someone to die so that I can live is a terrible feeling to reconcile emotionally,” she says. However, unlike other organ transplants such as hearts and lungs that must come from a deceased donor, a kidney donation can come from a living donor. A person can live a full, rather unimpacted life with just one kidney, in fact, there are many people even born with one kidney and go most of their lives without even knowing it.
Instead of competing against everyone else on the transplant list for a deceased donor, Leslie hopes that someone out there can sympathize with her story and specifically reach out to her directly as a living donor– could that person be you?
As someone who was raised not to depend on anyone else for help, it was certainly a task for Miles to figure out how to ask for someone to give up a kidney so that she can have a better quality of life. Thus, with the help of a friend, she created www.iwantyourkidney.com to tell her story and spread awareness of kidney disease. “It’s hard enough for us to ask for someone’s time socially to come hang out with us for an hour, but trying to ask for someone to physically give up a part of themselves for really nothing in return is crazy.”
Miles graduated from Berkley High School in 1997 and went on to attend Michigan State University. Currently, she is on medical leave from her position at Advantasure Healthcare Technology as a Medicare Plan Director of Risk Adjustment as she prepares to begin kidney dialysis. How does this disease affect her daily life? While Miles outwardly appears to be a friendly, optimistic, healthy person with a big smile, she says that people with dysfunctional kidneys often experience chronic fatigue. “I used to be such a workhorse. I was the person who would get to the office early and stay late, but now, it’s difficult to even fold my laundry.”
She says that being vigilant about her diet is important too. While lots of people say that things like avocados, tomatoes, and broccoli are healthy foods, for someone like Miles, the high potassium levels in foods like these are difficult for her kidneys to filter. If she doesn’t adhere to her diet restrictions, too much sodium or potassium could cause cardiac arrest. Even if she is careful about what she eats and making sure not to over exert herself, her kidneys only currently operate at about 7%. “Basically, it’s like when your car is running on fumes once the gas is all gone and you’re just trying to make it home,” she laughs.
If she doesn’t get an organ donor, she will stay on dialysis until a kidney becomes available. Dialysis is typically done three times every week and can last up to four hours, putting a patient’s life on hold for the duration of the treatment. “It really has become a full time job for me,” she says.
If she does find a donor, she won’t have to be on dialysis any longer and with proper maintenance, she can live a much less restricted life. Miles’ brother, who also suffers from Polycystic Kidney Disease, needed an emergency kidney and liver transplant when he was six-years-old back in 1988. Since receiving the organs 31 years ago now, he is currently living a healthy, full life with his family in Bloomfield Hills. While he has experienced rejection symptoms before of varying severity, his life has been saved because someone was kind enough to donate the organs of their deceased child to him all those years ago.
Contrary to popular belief, family members aren’t always going to be the right match, and for Miles, both her brother and mother are ineligible, so she has had to turn to strangers in hopes that someone is willing to give her the gift of life.
So, what does it take to know if you’re a match for Lesley Miles?
First off, you have to have the right blood type. Miles is A+, so she can accept a kidney from someone who is either A+ or A- as well as O+ or O-. If you have one of these blood types, the next step will be to call University of Michigan Transplant Center at 800-333-9013 and set up an appointment with her doctors in Ann Arbor to see if you both have enough matching antibodies.
From there, you will experience a series of tests including a chest x-ray and an echo-cardiogram to check your heart and lungs function as well as a kidney function test. While this may seem like a lot, you will not have to pay for any of it, even if you are not a match for her. All you would be giving up is a little bit of your time.
If you are the right match for her, the surgery will be covered by Miles’ insurance, so you will not have to pay for any of it. The donor is responsible for taking time off from work for the surgery and two to six weeks of recovery time, however, it’s easy to apply for aid in lost work wages, travel, food, and lodging costs.
For most living kidney donors, returning to life after recovering from the surgery is easy. If you participate in contact sports, you may want to wear extra protection for that area of your body, and you may want to be careful with excessive sodium and potassium intake, but otherwise, life goes back to normal for you… except for the amazing feeling of knowing you saved someone’s life.
Not too long ago, Miles did find a match. Unfortunately, the donor became unable to go through with the procedure last minute. “That was really hard to experience. It felt so close, and even though I know it’s not really mine until it’s inside my body, I felt like I lost a part of me.”
Miles says since offering compensation for organs is illegal in the United States, it can be difficult to convince strangers it is worth the time and pain from recovery to donate. But hopefully, knowing you helped someone live a better life is compensation enough. “If there is some kind of greater cosmic thing out there that happens to us after we die, I’m pretty sure organ donors get a free pass,” she says with a laugh. “Like on [the television show] The Good Place, you definitely get to go right on into the Good Place.”
In addition to blogging in hopes of finding a donor for herself, Miles also hopes to be an advocate and spread awareness of kidney disease and organ donation. While Miles has been aware of her disease her whole life, 90% of people who have Chronic Kidney Disease (CKD) don’t even know they have it until it’s too late and they need to go on dialysis or get a transplant. It is said that 15% of adults in the United States have some form of CKD and is the 9th leading cause of death, beating out both breast cancer and prostate cancer. Miles’ disease is genetic, but most kidney failure can be prevented by maintaining a healthy diet and exercise. She also says that most primary care physicians do not test kidney function during yearly physicals even though they test for many other illnesses, so asking for this test can potentially save your life.
Right now, it is about a three to five year wait on the kidney transplant list here in Michigan. So even if you aren’t a match for Leslie Miles, you may be a match for one of the other 2,281 people currently waiting for a kidney who live in the state. If becoming a living donor is not for you, adding your name to the national organ donor registry for postmortem donation can potentially save the life of one of the 114,000 people waiting across the United States. In 2018, out of the 338 donors here in Michigan, 1,087 life-saving transplant surgeries were performed.
Miles is also a fierce advocate of finding a better solution to how we provide healthcare currently in the United States. Even though Miles has a well-paying job with great insurance, she fears the debt she will face bankrupt her. “I’m trying to prepare for the worst case scenario. I’m meeting with a realtor right now to put my house up for sale because I won’t be able to afford my mortgage anymore. My boyfriend and I are likely going to have to downsize.”
It is not uncommon for people in the United States to go into extreme debt because of a health crisis, even if they began in a well-off position the way Miles had. “I’m not sure what the solution is, I wish I could say… but as the only developed nation in the world where you can go bankrupt for taking care of yourself, something needs to be done. Healthcare is a basic human right.”
To read Miles’ blog and learn more about her disease and how you can donate, visit www.iwantyourkidney.com and read more about becoming a living kidney donor via the U of M Transplant Center website, www.Kidney.org, and www.giftoflifemichigan.org.
Call the University of Michigan Hospital at 800-333-9013 for the chance to be a superhero to someone and save a life.