Our journey began in May of 2020 with John having side pains. We took him to his normal physician assistant, Brianna Brooks in Silverton. She sent us for more tests because John’s symptoms seemed a little odd. At first we thought John might have appendicitis.  When the test results came back, we received news that no parent wants to hear. John was diagnosed with stage 4 chronic kidney disease. Basically, one of his kidneys isn’t functioning at all and the other isn’t functioning well. When you have kidney disease, your kidneys are on a downward trajectory, and the timing of a transplant really depends on how quickly your kidney function falls. *Thank you, Brianna! Without your intervention, John would have been looking at dialysis in addition to his diagnosis of stage 4 kidney disease.** 

John will need his first kidney transplant sometime within the next two months to two-or-three years. He’ll need multiple transplants in his lifetime. That’s something we didn’t necessarily realize about organ transplants–even with a match, the new organ usually only lasts about 15-20 years. 

This is a journey we didn’t expect to be on. Now that we are here, we can’t express how grateful we are that you are here with us. One thing we’ve learned is that kidney disease doesn’t follow a straight path! Thank you for joining us for the ups and downs.  

Right now John is at 22% kidney function–he’s been at that level for we-don’t-know-how-long. We now know that John’s kidneys didn’t develop normally from birth. The upper half of the left kidney is still functioning and that’s what has taken over function for everything. His right kidney is at 2-4%. So the rest of the function right now is made up by the upper half of the left kidney. They’ll take the right kidney out completely when the doctors do the transplant. Fun fact–your kidneys are in the back of your body protected by your ribs, but when they transplant a kidney, they put the kidney in the front, otherwise they can’t get back in to re-transplant. That means the new kidney will be less protected. So John won’t be able to play contact sports like football… and no martial arts. John’s bull-riding career is now over before it started. His parents are heartbroken. 😉 But he can do swimming, tennis, golf, baseball and other lower-contact sports. Plus, they make transplant-protective jackets. We call them ‘rodeo jackets.’  John will need to wear one to help protect the new kidney. Besides those changes to lifestyle, he has to take two pills for the rest of his life exactly 12 hours apart. 

The good news is, John should start feeling better right away when he receives his new kidney. And more good news: both Mike and Patty are donor matches. But the tough part is that that means a major surgery for John at the same time as one of us–and the parent who gives the kidney tends to feel really icky right after and takes a while to recover. But we are counting our blessings.

John’s been a healthy kid overall throughout his life. He’s had some respiratory and allergy issues that would flare up (we now think those may have been related to the kidney disease), but he’s been a really active, normal kid. Our medical team thinks that the reason that John’s so healthy is from all the physical activity and his diet. We feel really lucky that John is an active farm kid. As you all know, John is curious, thoughtful, and super smart. He loves to be with the dogs and the family on the farm. He’s even becoming a master sausage-linker and loves to accompany us whenever we’re working. So the fact that he’s so healthy-looking confused his doctors. Normally someone with only 22% kidney function would look unhealthy and have high blood pressure. John doesn’t appear sick or have high blood pressure–another blessing. 

We’re also lucky John’s diet didn’t have to change that much (big dietary changes are normal for most kidney disease kids). The thing is, we were already eating a very kidney-friendly diet – none of our meats have added phosphates (a kidney issue), and all of our Lonely Lane products are considered low salt. Kidneys help regulate potassium and salt in your system. John’s sodium levels were fine when checked. He also didn’t have to give up dairy milk because we already weren’t doing dairy because Mike has a sensitivity. (Dairy is high in phosphates and potassium.) John does love ice cream and cheese, though, and now he’s limited to one meal with dairy per day now (yay for non-dairy ice creams as a treat!). 

We’ve been noticing, as of this writing (September 2020), that John’s getting more tired in the afternoons. We’ve been keeping John active because your kidneys filter things out, but you also sweat things out. Your kidneys actually regulate about ten different things in your body. Did you know they produce a hormone that tells your bones to make more red blood cells? So kids with kidney issues often end up with anemia. At John’s last check-up, he was stable, which means he may be able to wait for the transplant until he’s 9 or 10. Right now, John has tests every 3 months and is monitored very closely because there’s a small window that’s ideal to transplant–when the kidneys are starting to really fail, but haven’t reached the phase where John needs dialysis. There’s a higher rate of long-term success if a transplant patient doesn’t have to be on dialysis. 

Once we knew that John needed a transplant, our doctors suggested a couple of programs–one in Washington and one in California (OHSU wasn’t covered by our insurance). We were accepted into the program at Stanford when we went down in July to meet the team and be interviewed. We met the two nurses who will coordinate his care, the coordinating social worker, and the doctor who will do the transplant. Our doctor in Portland has worked with and trained under the doctor who will perform John’s transplant, which makes us feel really good. We’re hoping they let us schedule for this year or next year in January or February because those are our slowest months on the farm and at the packing plant. Ever since we started the meat processing plant, we’ve always been together on the farm. It’s really hard to even schedule one week away each year. So scheduling two simultaneous major surgeries that will leave one of us unable to work for four-to-six weeks is very overwhelming. 

After John was formally accepted into the transplant program at Stanford, he was put on the inactive donor list. Even though Patty and I are compatible donors, we still have to go through the full screening process to show that we’re healthy enough and our kidneys are healthy enough for the surgery for ourselves. If we somehow got kicked out of being the right donors, then John will have still been on the inactive list this whole time, so he can gain time in line for a kidney from a deceased donor. (This has all been SO MUCH to take in!) 

We’re raising funds for COTA in honor of John because John’s surgery and the donor’s surgery (either Mike or Patty) will happen together in California at Stanford. Insurance covers the biggest portion, but we will need to travel to Stanford multiple times before and after the surgery, and only travel costs for John are covered. Because two members of our family will be having major surgery, we’ll also be using funds to cover the costs of additional caregiving needed for our family. Funds will also be used to support any additional procedures John needs. We’re so lucky to have the Children’s Organ Transplant Association (COTA) as a resource to help with this, because all funds raised will be tax-deductible for our donors and funds raised for COTA in honor of John will be able to be used for tranpslanted related expenses throughout his life.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.