Test It All...

Health Update #17

The last few weeks have been quite busy. We took the kids on a field trip to Old Salem, attended a fundraiser that our church hosted for our family, and caught up on school work. We are so thankful for our community who have rallied around our family. Our church has been AMAZING! They have truly been the hands and feet of Jesus in our lives in this season.

Last week was more low key... We had our spring break week, so we rested - a lot, then celebrated a birthday. J got to watch the Carolina vs. Duke game with friends, and it brought me so much joy to hear them hooping & hollerin' all evening. Mostly, because it was something normal.

Monday - April 4th, 2022

Today was a hard day.

We haven't seen my labwork numbers since the end of February. Every time the kidney doctor has run labs, he's called and said everything was "about the same". The whole month of March, none of my reports had been uploaded to my e-chart. So, I have been logging in & checking peridically. Today I checked again around lunch time and the chart was finally updated. I was shocked to see that my creatinine had jumped to 14.68. The rest of my levels are all relatively normal still.

Then, I had an appointment with the hematologist at 1:00 pm. The whole drive there I was fighting tears. When I arrived, my labs were drawn again, and I headed off to the patient room. When the dr came in, he was pleasantly surprised that I am still feeling so well, despite my labs being so much worse. He explained to me that even though my BUN is high (70 - supposed to be between 6-20), that it's actually very low for how high my creatinine is. He would have expected the BUN to be closer to 150-175 with a creatinine of 14. So he said that was a good sign and why I have avoided dialysis up until now.

He checked me for swelling, rashes, and discoloration, and couldn't find anything out of the ordinary. Then, he left to check my blood cells under the microscope. When he came back, he told me that my blood cells looked great and that compared to his other a-HUS patient, my blood cells were in better shape with no cracking in the cells... that was a great sign.

He said that it looks like a transplant is likely, however he can't guarantee that because we don't know how I will respond to the Ultimiris infusions.

We talked about the genetic testing that's been sent out, and how he hoped I'd get to start the Ultimiris infusions sooner rather than later. He was disappointed that they haven't been started yet, since it's been 6 weeks since starting the process. He is hoping and praying that we get to start soon and that the Ultimiris infusions help me regain some kidney function. He said his best estimate is that I am currently functioning at less than 5% now.

Tuesday - April 5th, 2022

Transplant Clinic Exams Day

I had to go back to the hospital today for a whole bunch of tests. These are required to get on the transplant list. Today I had an Echo, Chest X-Ray, Stress Test, and a CT Scan. The results came back within a couple of hours, which was reassuring.

They didn't expect to find anything, so no surprise that everything came back normal.

The ECHO of my heart looked great, only showing a slight enlargement of my left vertical area. J said that was normal with high blood pressure bc the heart is working harder to push the blood through, and he wasn't concerned at all about that.

The CT scan was normal as well, however they made a note that my kidneys appeared "small". Upon researching, we found that kidney sizes range based on your body type. Taller people typically have larger kidneys, and shorter people typically have smaller kidneys. I'm short so it would be expected that mine are smaller. The ultrasound that I had in August measured my kidneys at about 1 cm larger than the CT did today. CT scans tend to be more accurate on measurements, and ultrasounds can be slightly off. J didn't seem concerned by this either.

The possibilities are: my kidneys may be shrinking due to tissue death (or) they were just slightly smaller to begin with. So, though it's something to think about, we aren't worrying about it.

I called the insurance company today and was told that my infusions were approved on March 21st and that my providers were notified the same day. The infusions were approved through September 22nd so that will give us some time to see how my body responds. I was super surprised and wondered why no one contacted me. So now, I am following up to get the infusions scheduled!

Next Steps...

• Get infusions scheduled ASAP

• I am scheduled to meet with the surgical team in early May to go over the surgery for a peritoneal dialysis catheter.

• Finish process for transplant list, just in case.

Specific Prayer Requests...

• Ultimiris would be started quickly and I would regain kidney function and avoid a transplant

• A friend of our family has lymphoma and has been on my heart a lot lately. Please pray for her

God has been so good to me along this road we are walking. I don't know why I didn't stroke out in the beginning, or why so many patients like me have had exponentially more issues, etc. I get butterflies in my belly every time the healthcare people tell me I'm a medical miracle and a mystery. My response is always the same... Jesus has been incredibly merciful to me during all of this.

Thank you for praying and following along on this adventure with us!

• Kimberly •