**Editor's note: We are privileged to be able to bring you Board Member Jill Brown and her daughter Kylee's story this month. Jill is a wonderful asset to our transplant community. She is the Executive Director for Northwest Kidney Kids, Treasurer for Transplant Families, and spends a great deal of time listening and advocating for our young adult community. She helps advocate for transplant kidney, cognitive, and teen issues, and we are all the better for her experience. Thank you, Jill, for sharing your and Kylee's very personal journey.
Kylee is a fun-loving 10-year-old girl who loves dolls, bikes, and reading. Her infectious smile and beautiful curls welcome all that she meets. She has a fantastic story that begins when she was a toddler and was changed from near tragedy to triumph because of a family member's heroic act. The act that only a parent can take and not think twice.
Kylee was born full-term naturally and no complications. It was a race to the hospital as she was born 30 minutes after arriving. Every doctor was joking with her parents that next time they would need to make sure they had a house across the street from the hospital. She came home, and everything was great.
They had a typical family of four, and they just did all the usual things a young family in Portland would do soccer, school, and family activities after work. Kylee went to a Spanish immersion daycare, which she loved. She sometimes knew Spanish better than English.
And then, when she was 23 months in April, she got a terrible GI virus. She seemed like she needed more support than she was getting at home. Her parents couldn't keep fluids down, so they took her to the emergency room. They ran her labs and tests and gave her some Zofran. That seemed to help, and she was sent home. Then on Monday, her GI issues continued to get worse. Around 6 pm, the nurse from the Doernbecher ER department called to check and see how she felt.
Her mother, Jill, reported, "She's doing great. She's drinking a lot better" When the nurse asked if she had peed, she had recalled that Kylee really hadn’t for quite some time. Jill's mom instinct kicked in, and she knew she needed to take Kylee to the emergency room. Within hours she was told Kylee was in kidney failure, and she needed immediate dialysis. They transfer Kylee to the PICU, and that’s when they met the PICU Intensivist.
Kylee was diagnosed with HUS, which is a hemolytic uremic syndrome caused by E. coli. Her family had begun getting raw milk about three weeks prior from a local farm, which was found to be the cause of the E. coli infection.
They were trying to decide if they were going to start dialysis immediately through the femur or if they would be able to wait and go to the next day. The result was to keep her in the hospital, and in that first week, Kylee continued to go downhill quickly. Neurological problems started to show up. She would make repetitive motions with her arms. Then, she began to lose her speech. She wasn't able to communicate like before, and she found her words were being lost.
In the middle of the night, a nurse woke them and said, "I'm taking her for a CT. We have to. Something's going on. I'm concerned about her." That was when they discovered that Kylee had had a massive stroke. All of a sudden, her arm motions and loss of ability to communicate made sense.
Nearly a month later, Kylee, still in the PICU, celebrated her second birthday on vent, fighting for her life. This was after the week before when she started having blood coming out of her nose g-tube, and they took her under for emergency surgery, and she had a perforated bowel. They brought her back coding while her mom and Nana were in her room. Jill recalls, "it's probably the thing that will never leave your mind is watching your kid have a code called on them."
Soon after this, she started making improvements. One night she had two trees (IV poles with multiple drips for medications). Then it seemed that overnight the nurse was able to start taking things off. Kylee needed less and less support, and by morning she was almost off of everything besides some pain medication and insulin. After this, she went to the main hospital floor and spent another four weeks there. Doctors thought Kylee would probably go home on dialysis at that time, but eventually, she started to do better with dialysis, and ultimately, it was able to be stopped entirely. Her native kidneys were working well enough for the moment.
Jill recalls about leaving rehab, "It's hard; she didn't make as much improvement as I think all of us were hoping from the stroke. We're exhausted between nine weeks at Doernbecher and five weeks at Randall rehab (another local children's hospital). We've could probably have stayed that at that rehab longer, but we were ready to be home and with our family and not live in and out of a hospital every day. And so we took her home and enjoyed the rest of our summer." They had to live with the fact that Kylee had had a massive stroke. She lost her ability to walk, eat, talk, most fine and gross motor skills. She neurologically got diagnosed with dystonia. Kylee was released from the hospital in July after 14 weeks with an ng tube, colostomy bag, insulin-dependent diabetic, and CKD 4.
In August, they reversed her ileostomy successfully and placed a g-tube for nutrition and hydration. There was hope that Kylee would get to five or six years old with her kidney disease without needing a transplant, maybe 10 to 12, some of those growth moments, and we would see a couple of good years. Unfortunately, in January, five months after leaving the hospital, her kidney team saw her kidney function decrease and concerning labs. Kylee was hospitalized for the weekend as the team thought she just needed some additional support. Then Sunday, they came in to release her and pulled up her labs at the last minute and were worse than when they started that weekend. Jill remembers, "And I think it surprised all of us, right? Because we thought we had a couple more years. At that point, everything shifted because we had to go back on dialysis and start that process instead of going home. We got the hemodialysis lines restarted. And that really when their ESRD journey began, when she was barely three years old."
Of course, Jill wanted to have the privilege of being Kylee's donor. She immediately had blood work done to see if she was a match. Kylee stayed on hemodialysis until transplant. In June, they went through transplant education and started the process simultaneously. Kylee was approved for transplant in August, and Jill was approved to be her donor within the same week. They scheduled them for transplant three weeks after that, on September 9, 2013.
The transplant was Monday morning. On Sunday night, they had the check Kylee into the children's hospital. Monday morning, Jill got ready and did prep stuff that you're required to do before transplant at the children's hospital. Jill's parents stayed with her during the pre-op. They only allowed one parent back at a time, and her dad was just the calming presence she needed. They eventually brought her back to a surreal sterile room. Jill had never had surgery. At the same time, Kylee's dad was getting her ready for surgery. Both families were getting simultaneous updates throughout the day. Jill woke up briefly only to ask how Kylee was doing. She doesn't remember being in a lot of pain. The next day she got a wheelchair and saw Kylee because the children's hospital connected to the main hospital. Kylee stayed in the PICU for a few days and then released to the floor, and then they released Jill from the hospital about five days later. Jill credits her wonderful family.
Jill says Kylee has been a textbook case for transplant, just stable. I always felt like I should knock on wood. She came off all her blood pressure medications. She takes immune-suppressants, vit D, and on/off calcitriol for her transplant. Many other medications related to her other diagnosis. She is seven years out; it'll be eight years in September. Kylee has had a kidney transplant; she does essential monitoring with monthly labs and clinic appointments every few months. We have been very fortunate not to have any rejection.
Life is far from normal. Kidney health and keeping Kylee's transplanted kidney healthy and happy is always top of mind. Making sure her medications are given on time, she gets enough water (2 liters a day), weekly PT, OT, and Speech appointments. Kylee has a specialist from GI, Neurology, Endocrine that sees her every few months and helps monitor her many health conditions. She also sees a neurologist in CA and had a deep brain stimulator placed in 2016 to help with her dystonia.
What's recovery like as a living donor?
Jill says, "Initially, it was rough. I didn't know I had an adhesive allergy, and they use a lot of adhesive in surgery. I also was very sensitive to the epidural and didn't start to feel better until they pulled it on day 3. It was tough to care for a three-year-old who needed support in all areas and couldn't walk. My mom and friends were able to come and help. About five weeks after I donated, I was back in yoga, not necessarily doing what the rest of the class was but feeling pretty good. Overall, t's been good for me because I know that I have one kidney, and I need to protect it for myself and Kylee. I haven't had any complications."