We found out in the fall of 2014 that Ben had reduced kidney function. This was a complete shock to us. His diabetes had been under great control, and he had zero of the symptoms that he should have had. To keep a very long story short, we learned that Ben had reacted poorly to a medication that is routinely used to "prevent" kidney damage. The nephrologists in Iowa were still convinced that it was impossible that Lisinopril had done anything and blamed it on the diabetes alone. We ended up fighting a 6 month battle while they refused to take him off the med (which he now needed for blood pressure control due to the damaged kidneys) and we switched to a nephrologist in MN. It was then confirmed that Lisinopril did in fact cause severe damage in Ben's case and he was switched to a different medication.
The outlook was good at that time and we were told he could sustain at that level for many years with a good diet and careful blood pressure control. We were glad we knew and could make a few changes to keep Ben healthy. We jumped into healing mode and used supplements, homeopathy, juicing, and exercise to encourage Ben's body. He still felt great and at times we saw improvement in his numbers and felt we were on the right track, and that there was a chance God would choose to heal Ben's kidneys. In July that all changed. We packed our moving truck to MN on the hottest day of the year. Ben ended up getting severely dehydrated despite pushing fluids and stopping for many breaks. He ended up in the emergency room with extremely high blood pressure, heat stroke and was unable to do much more than rest for the next few days. That caused some sort of shift and his kidney function rapidly declined throughout the rest of July, August, and September. In September we found out that we could not avoid dialysis.
The doctors were baffled, and we were in a state of shock. The nephrologists had felt that since Ben was so healthy that he could avoid dialysis completely and when the time came have a transplant. Sadly, dialysis was quickly arranged and Ben had a catheter placed in his abdomen to prepare for peritoneal dialysis. We chose this method so that he could dialyze at home while sleeping and have his day free. It is also a chemical free method and more gentle than hemodialysis. When he started his kidneys were still doing the majority of the work and he needed very little dialysis. This further baffled the doctors, and they kept trying to add too much dialysis...repeatedly dehydrating Ben and landing us in the ER and hospital.
Unfortunately, this further damages his remaining kidney function and makes his blood pressure harder and harder to manage. Along with bp control, the kidneys also perform many hormonal and enzyme functions. Now we are trying to mange severe anemia, calcium, vitamin D, and B-vitamin deficiency, and fluid shifts that make his sodium/potassium balance all out of whack. Friday night he took a medication to encourage red blood cell production to help with anemia (a synthetic version of the hormone the kidneys usually produce) but this raised his already touchy blood pressure, and exacerbated some fluid retention he had. This is what led to his inability to breath properly and I had to call 911.
In the midst of this we tried desperately to be the best parents we could be, move into our new home and unpack, work on a few projects, and help our kids through the transition of a new school and friends. Thankfully, God had prepared the perfect job for Ben in advance. He now knows he never would have been able to continue teaching throughout this journey. He had struggled with the call to administration three years ago. He still loved teaching (especially Kindergarten!) and couldn't understand why God seemed to be so clearly telling him it was time to move in a different direction so soon. When we packed up his classroom in May he was so excited for the new challenge, and yet so sad to be saying goodbye to the most fulfilling work he had ever done.
One of the biggest struggles for Ben has been accepting that there is no longer a chance for healing on his own, and that a transplant could affect someone he loves. He's a protector, and an advocate for others. All of you who know Ben well, know he is rarely ever sick but when he is he catches something rare, weird, or intense. He hates sick days and will push through anything with shear will power. Letting people down is not in his DNA. He didn't want to share what has been going on, because he didn't want to be treated like he was sick and he didn't want people asking our kids how he was doing. He loves his new job, and wants to do amazing things, and be a support person for the new staff and school he represents.
As Ben's wife, I am asking for prayer. He is my best friend, the best daddy to our kids, a great provider, and a man called by God to be an advocate for all children. Now he needs support, compassion, understanding...and a kidney. I will be tested this week, our oldest son (Braeden) is being tested, and we have had a couple other people offer to donate if they are a match. Ben is beyond humbled by these offers to give him the greatest gift of love. I am also looking into the paired exchange program if I am not a match. That would allow me to donate my kidney to someone who has a family member that was not a match for them, but is a match for Ben. We believe the hand of God holds all things, and He sees this great need. Please join us in praying that the right match is found quickly, and that if we are meant to meet another's need as well that we would see that quickly and clearly. We are also praying for stability while we wait. Ben's blood pressure needs to stabilize to protect the rest of his body for transplant, and the constant trips to the ER and hospital are very stressful and hard on our kids. We are SO thankful for our family, friends, church, community...all of you!!