Raiden Messerli and his family thought that he had an ordinary case of the flu. Brandi Lewis, Raiden’s mother, discussed in an interview with KCCI8 News how she still vividly remembers the shocked feeling that accompanied the actual diagnosis: Raiden was experiencing Stage 5 kidney failure, otherwise known as end-stage kidney disease.
A senior in high school, Raiden is now three months past that diagnosis. He never could have guessed that he’d receive this diagnosis, having experienced what he described as flu-like symptoms. Despite it all, Raiden is still set for graduation this month, even through dialysis three times per week.
Living with the Final Stage
After initially receiving his diagnosis one day after he and his family arrived at the walk-in clinic, Raiden was transferred from that Oskaloosa urgent care clinic to the Iowa University Hospital. At this stage of the disease, the kidneys have lost almost all of their ability to function, and require kidney replacement therapy. The options for treatment involve dialysis or kidney transplant; the only other path is a type of conservative care that involves symptom management to improve quality of life, but are not as effective for treatment of the disease itself.
An Inherited Disorder
Raiden’s mother Brandi explained in a KCCI interview that Raiden has a rare disease called Charcot-Marie-Tooth Disease, which his nerves and muscles. Both Raiden’s father and grandfather have the same disease, which made Raiden predisposed to acquiring it through genetic inheritance.
The disease consists of disorders causing nerve damage, weakening muscles, loss of sensation and various other symptoms. While Raiden is determined to live as “close to normal” as possible, he admits that he has had to accommodate the demands of CMT.
Waiting for a Kidney Donor
Raiden has maintained a positive attitude while his medical support staff and family are searching for a living kidney donor. Although the need is not immediate, they must continue to actively search, as some patients have waited as long as ten years for a donor.
Another complication is that Raiden is type O+, which means he must receive a transplant from a person who has an O+/- blood type. His mother, unfortunately, cannot provide that match.
The family is relying on help from the Center for Organ Transplants at Iowa University that has a program devoted to matching patients with living kidney donors. According to its website, it is the state’s only program offering blood types that are incompatible as a living kidney donation.
That would mean that it is possible for people to qualify as a kidney donor for patients who are related, such as a friend or family member, yet they may not be matched according to blood type.
Raiden’s mother recently posted a Facebook message that has received some much-needed attention, discussing Raiden’s current health status with a request for people to think about being a living donor not necessarily for Raiden but for other patients that are desperately in need. Brandi described the initial testing a donor would undergo to ensure that they are healthy and a good match for Raiden and other patients. She went further in explaining that even if her Facebook post did not find a match for Raiden, there are many other patients on the wait-list, some of whom have been on the list for over a decade.
For more information, please feel free to visit the University of Iowa’s healthcare site.
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