Journal Entry by Elizabeth Lintelman
It's Not Rejection, so......
It has been another long week of waiting.
Waiting to hear about her biopsy report.
Waiting on labs.
Waiting on answers.
We received the final report today that her biopsy from last Friday confirms that she is NOT in rejection. That means her body is tolerating the transplanted kidney, but Kim the Kidney is not working as she should. Her hemoglobin continues to trend low and we had to give her an injection to stimulate her bone marrow to generate more red blood cells. In the meantime, her creatinine continues to climb, with her last draw from Wednesday pulling at .98.
We now need to explore if she's experiencing a narrowing of the blood vessels that could be causing a turbulence in blood flow to Kim. We have an MRI of Parker's abdomen and Kim the Kidney, slated for this coming Monday, December 18th, and will see how her surgeon and transplant team would like to proceed.
In the meantime, we are going to focus our energy on enjoying the magic of the Christmas season; frosting cookies, admiring the beautiful Christmas lights, and counting packages under the tree.
Please keep the prayers and words of comfort coming. They're truly appreciated. All of our love from our family to yours!
A special thank you to WCCO Channel 4 & Fox 9 for helping spread awareness & information about organ donation, the voucher/donor program and how "you have a pair, why not share" became the Lintelman family motto for the past 2 years! We are passionate about sharing Parkers story as much as possible to help educate and hopefully start many more chain reactions of giving that ultimately save lives.
Updates of Parker's Transplant journey over the past couple of years is documented in their journal entries on Parker's CaringBridge site at https://www.caringbridge.org/visit/preciousparker Be sure to follow along as we update all family, friends, loved ones & both communities of her life post transplant.
On Friday, December 3, 2021, what began as a routine wellness check for a 4-year-old ended in a diagnosis of Stage 4 Chronic Kidney Disease.
This challenging journey has been filled with countless trips to Minneapolis for appointments with her pediatric nephrology team at the University of Minnesota, transplant evaluation, more than half a dozen strep infections, a tonsillectomy, adenoidectomy, ear infections, and a bout of Influenza B. Over the past two years since her diagnosis, they've watched Parker's health decline as her kidney function continued to plummet. Although diagnosed with only 18% kidney function, the best course of action was to keep Parker with her native kidneys until she was closer to only 10% function and the borderline of needing dialysis. This past May 2023, Parker's health had diminished enough that her transplant team felt she needed to be actively listed on the national transplant list. Her status was officially updated to "active" on the national kidney list.
Last fall, Parker's preschool teacher, Kim Miller, selflessly donated a kidney through the National Kidney Registry (NKR) Voucher Program in Parker's name. This provided a voucher for Parker, allowing her to be prioritized for a living donor kidney through the national kidney registry.
This brief summary brings us to today, September 14th, 2023 which marks Parker Mae's 6th birthday. Parker has been status active on the living donor transplant list for over 4 and a half months, and her transplant team had difficulty finding the ideal living donor match—until now.
This week (September 14th, 2023) Parker and her family received a call from their Transplant Coordinator, informing them that they have found the best possible living kidney donor match for Parker. The donor is a 40-year-old individual living in San Diego and is a perfect match for Parker. The donor is scheduled for surgery on October 3rd, with Parker reporting for transplant surgery at 6am on October 4th.
The Lintelmans are overwhelmed with a myriad of emotions, with gratitude being at the forefront. However, significant financial concerns remain.
This GoFundMe campaign has been established to alleviate the immediate financial stress associated with the transplant surgery itself, as well as the long-term post-transplant cost implications. Despite having health insurance and supportive employers, the Lintelmans will still face substantial expenses. The funds raised will immediately cover expenses such as time off work, travel to and from Minneapolis to Fairmont, lodging, and food. The funds will also help offset the remaining debt after insurance coverage has been exhausted for the transplant surgery, post-surgical care, fees for surgeons, physicians, radiologists, anesthesiologists, and frequent lab evaluations. Additionally, the funds will assist in covering follow-up care and testing, potential additional hospital stays due to complications, and the cost of anti-rejection and other drugs, which can easily exceed $2,500 per month. On average, kidney recipients spend about $17,000 a year on anti-rejection drugs. Not only will Parker require lifelong immunosuppressants to prevent her body from rejecting the new organ, but she will very likely require future transplants, as a kidney transplant from a living donor lasts on average for 20 years.
Parker, Elizabeth, Seth, and Addison appreciate your continued prayers, well-wishes, and support beyond what they can express. They feel deeply humbled and blessed to have an incredible network of friends, family, patrons, and even casual acquaintances across two cities holding their family in light and love.