The Official Diagnosis & First Infusion

Heath Update #19

Tuesday, April 12th

Today was the first day of a new chapter in this little adventure Jesus has me on. I had my first Ultimiris infusion. I would say it was successful!

When I arrived and got checked in, I noticed there weren't a lot of people there, just myself and two other patients. There were 3 nurses to 3 patients, so the care was excellent. I got to chatting with my nurse and found that she is a believer too! That was refreshing. I shared with her some of my story, and she kept saying "Wow! God's got you!" She was super sweet and her voice sounds almost identical to my friend Miranda's.

The first hour was paperwork, setting the IV, checking vitals, and giving me tylenol + benadryl 30 minutes prior to the infusion. I'm also a hard stick - I have tiny veins that roll & disappear, so being a pin-cusion is normal. My nurse got the IV on the first stick (Praise the Lord)! Thankful for that glimpse of mercy from the Lord. I also don't take a lot of medications (didn't before I got sick either), so meds tend to work very well on me. Within no time, I was already feeling sleepy. They mixed the IV, then hung it on the pole. I could tell when it started infusing because the solution was very cold going into my veins.

I watched an episode of my favorite gardening channel on YouTube, and then napped for the rest of the appointment. The infusion itself was a half-dose, so it only took about an hour, then I had to wait another hour to make sure I didn't have a reaction. My nurse said they were watching me and that I slept peacefully.

Though I thought I'd be a bundle of nerves, I wasn't. I had perfect peace the whole day. I knew that this was exactly where I was supposed to be and exactly the next step Jesus had for me.

As far as side effects, I only had a mild headache and slight queasiness for the rest of the day. The benadryl stayed in my system until about 6pm so I was tired, but that's to be expected. About that time, I ended up laying down in my bed, just for a minute while talking to my dad on the phone, and the next thing I know, I woke up at 1am.

I go back for my first full dose on April 26th.

We are praying diligently that God does a miracle with this medicine. I'm essentially at the point of no return as far as kidney function goes, according to the doctors. God has promised me healing multiple times, in multipe ways, so I know He will do that, and I'm just waiting on the miracle. Will it be one big one or small, progressive ones? Only He knows.

I sure am blessed though to be walking this road. Is it hard? Yes! It's one of the toughest things I've gone through in life, but it's worth it! My relationship with God is evolving into something new and deeper than before, my faith is being tested and stretched, and God is teaching me so much in the middle of it. So even though it's not what I would have chosen for myself, in the end I am grateful to have had this experience.

Thursday, April 14th

Hi friends! Happy Thursday!

Today has been a full-circle moment for me. Back in August, when no one could figure out what was wrong with me, my hematologist prayed over me and said, "when God is ready for us to know the answer to this He will tell us."

Today was that day. What we have suspected, has now been 100% officially confirmed. My diagnosis is officially atypical hemolytic uremic syndrome (aHUS). The genetic testing we did in February returned, and I do have the genetic mutation for it. My kidney doctor has now increased my estimated chance of recovery from 1% to 50/50. I am praying, and have from the beginning, that God will work a miracle and give me a 100% recovery.

The kidney doctor said he was happy that I pushed him on the infusions when he was hesitant. That it was the right call. I knew it was all along, because God put it on my heart so strongly. I never doubted for a minute that the infusions were the next right choice. God showed me so clearly and so strongly.

I will essentially be on Ultimiris infusions for the rest of my life to put my complement system into remission and keep it there. The kidney doctor said there is still a possibility of transplant & dialysis, but how I react to the infusions will likely determine what happens with both of those options.

I will officially transition to the hematologist for my primary care, and may need to visit the Mayo Clinic or University of Iowa at some point.

Knowing the official cause is such a relief. That means no longer being in limbo, and having a clear-cut plan of treatment. Since this syndrome is ultra-rare and can cause major issues, it also means that my children will need to be tested.

I am so grateful that God chose to reveal the answer. I find it interesting that today, the day before Good Friday was the day He chose. Looking back in scripture, today is the day that the Last Supper happened. It was during that meal that Jesus shared how He was ushering in the New Covenant that had been prophesied long before. (Jeremiah 31:31)

I have been praying for that one person who sees the miracles God's doing in my life, and allows their heart to be tender to Christ. There has been a reason that I am going through all of it, and I believe it was so Jesus could touch someone's heart. I don't know if that's you, but if it is, I've been praying for you!

If you do not know Jesus, I sure hope you would meet Him! He has loved me so much, and changed my life for the better. I could not imagine going through this life without Him. Don't put it off and let your chance slip away, because there will come a time when the chances will be gone. Don't let that slip by you... I can promise you that nothing in this world will ever fulfill you like Jesus. Not your family, not your job, not your possessions. Nothing, but Jesus.

Of all the decisions I've ever made in my life, the best one I ever made was at 14 years old when I accepted Jesus into my heart.

Here is a link to find out more: The Faith Corner