Hopeful days ahead...

Health Update #23

Hi friends! Welcome back! We have some new updates to share!

On Friday 7/8, I went to the cancer center for my monthly appointment with my hematologist/oncologist. I actaully love going to see him because of all my doctors, he's the most positive and encouraging. He checked my labs, and since my 3rd infusion my creatinine had come down to 10.99. PRAISE THE LORD! We are still heading in the right direction!

Some things of concern to him are that my hemoglobin has dropped again - it was 6.6 - and my blood pressure was really high. He agreed with the kidney doctor that I need to resume the poetin shots to increase my red blood count, but he's highly concerned about it adding to my blood pressure numbers, as that's a known side effect. His concern is causing additional damage to my organs, but then low hemoglobin can do the same thing since my organs aren't getting enough oxygen - so catch 22 there. Overall though, he was pleased with my numbers and told me that we are holding steady. He's giving me an extra month in between appointments.

Yesterday (7/13), I went to see the kidney doctor for my monthly follow up. I was super nervous on the way, as I had just taken my blood pressure and it was 186/110. It's been running high since my last infusion, and though it's a side effect, we aren't sure if that's exactly what's causing the spike.

Right before leaving home, I took a blood pressure medicine + added in a Coreg in an attempt to force it down. Then I shared with two friends that had been praying with me that morning, and we all prayed again. I did deep breathing exercises in the car on the way, and by the time I got to the doctors office it had come down to 145/82.

My appointment with the kidney doctor was pleasant! He was happy that the Ultimiris infusions are working & my creatinine is still trending down. He asked my thoughts on dialysis and a transplant, and I told him that I still wasn't opposed to either, BUT I want to see how the medicine works and where I level off at. He was agreeable and said that was a good plan.

He told me that he would be surprised if I got as low as a 4, but if I do that the transplant could be put off for 4-5 years. He said it's like a knee replacement and when you do those things too early, it could cause complications later on, especially as young as I am. While he doesn't think I will settle at numbers that low, he did give me a hopeful outlook which was refreshing. He said I have not been the normal patient, so we'll see how my body responds. (In order for him to consider me truly healed, my creatinine needs to drop to a 2.)

He has major concerns about my hemoglobin being so low - which is caused by the aHUS. For my non-medical friends - low hemoglobin means my body is killing my red blood cells faster than I can make new ones. So I am going back on the poetin shots next week, along with 4 treatments of iron infusions as well over the next month or so.

Lastly, he reminded me that I will be on infusions for the rest of my life. Honestly, if it keeps me alive, I am a-okay with that. The doctor's main concern is that if I were to go off the medicine, my chances of a recurrent flare up and relapse is significant. James and I know the data - we have spent hundreds of hours researching. AHUS with my specific gene mutation has the highest rate of recurrence. This disease also has a high mortality rate, and going off the medicine is just not something we're willing to risk.

So overall this week has been a lot to take in. Things are ever changing and I am just trusting God's plan in it all. He has sustained me thus far, and I know He will continue to.

It takes 6 months for the Ultimiris to really get into full effect in your body, so by October we should really begin to see what my numbers will look like. Being in support groups for this disease has taught me a lot - many ahus patients continued to see improvement for up to 2 years after starting the infusions. So ultimately, it will be God's decision where the rest of this story goes.

SPECIFIC PRAYER REQUESTS:

• Creatinine to drop to a 2

• Hemoglobin improvement

• Blood pressure to come back down & stabilize