Slow & Steady Progress

Health Update #22

Hi friends! It's been a little bit since I've checked in so let's do a quick update!

I have had about 2 weeks off from appointments and such, which has been wonderful. No doctors, no needles, no worry, just peace and calm. It showed in my blood pressure yesterday which was perfect! 122/82.

Yesterday, I had my monthly appointment with the kidney doctor, and that went well. It was quick and easy. No discussion of dialysis this time (insert sigh of relief here). Though I am getting in one full meal a day, I still lost about 4 lbs since my last visit, putting me at 75 lbs lost since all this started. I needed the weight loss, but this is definitely not the way I was envisioning that going. LOL. That being said, I can tell the infusions are helping. Overall I am beginning to feel better than I have in months. I have more energy, and the waves of nausea/vomiting are coming less and less.

My nurse just called with the results of yesterday's labs:

- Creatinine same as 2 weeks ago.... 12.3 (goal is 1 to 2) - Hemoglobin came up to 8.9 from 7.2. (goal is 12)

Nurse said all my other numbers from my CBC & additional tests looked normal, and we'll repeat it in a month.

Next infusion is June 21 & next labs are July 8th.

Praise Jesus the symptoms of my aHUS flare up were relatively mild compared to most. Extreme fatigue/nausea/vomiting, high blood pressure, and the stage 5 kidney failure were my worst symptoms. There are 7 genetic mutations that cause aHUS, and I have the CFH gene mutation (which is the worst of them all). For most who have this same mutation, their initial flares are far worse than mine, often landing them in the ICU or dead. The stories that I've read in the support groups are both heart-breaking & beautiful all at the same time.

Watching how God has been writing my own story has just given me a renewed sense of purpose, and an attitude of complete gratitude for my life and the time I've been given. When you go through a crisis like this, you truly realize that every day is gift and how fragile life really is.

Today, I am thankful for stable results, along with God's mercy and provision as we go through this process.

Have a blessed day friends!

Kimberly