The Merry-Go-Round

Health Update #27

Hi friends! It's been a little bit since my last update (err mid-December), but who's counting? Today seems like a good day to do one.

My last doctor appointment was in January. At that appointment, my numbers had gone backwards a little bit. We aren't really sure why - could have been the holidays, could be stress, could've just been my body - only the LORD knows. That news was disappointing at first, but I managed to refocus my attention and focus on gratitude. There is so much to be thankful for and sometimes when things aren't going "right" I have to remind myself that my story could be and should've been much different... had it not been for the prayers of the righteous. I firmly believe with everything in me that those prayers are what made all the difference. There's much about me that the doctors cannot explain and don't have answers for. As we continue to research and learn more about both my genetic mutation + the disease, there's so much in my case that doesn't line up with the "norms", and even more to be grateful for. Grateful for life and grateful for the mercy I've been afforded.

The extreme nausea & vomiting have returned with a vengeance, so I was expecting that things were not progressing significantly.

I had my epoetin shot mid-February to make my body produce blood. Imagine my surprise when they said my hemoglobin was 10! When I get to 12 I don't have to take the shots anymore - or at least until my hgb drops below that again.

Most days, people wouldn't even know that my body is as sick as it is. I tend to manage the migraines well - I can't take any medications for that due to the renal failure, so caffeinated beverages help. The nights are the hardest. If I am able to eat throughout the day, it usually comes back up during the night. This is the part of aHUS that only a few people - close friends & family - really see or notice. The micro portions of food, the constant throwing up, the naps, and migraines. Those things are the day-to-day things that God gives me the strength to push through. It's been important to me to try to keep our home and days as normal as possible.

At the end of the day, I try not to complain because I am SO ABUNDANTLY BLESSED! A verse that I cling to in the midst of it all is: "But may the God of all grace, who called us to His eternal glory by Christ Jesus, after you have suffered a a while, perfect, establish, strengthen, and settle you." 1 Peter 5:10. I remind myself often that this trial that I am walking through is just that - a trial. It won't always be this way. One day - whether on this earth or in heaven - I will receive perfect healing, and my body will no longer be broken.

Today, I am feeling pretty decent, and after two solid weeks of nausea, I finally kept my last few days' worth of food down! Praise the Lord! I also had my 2 month follow up with the kidney doctor this afternoon, and it was emotional to say the least. We are back on the transplant merry-go-round it appears. My numbers were stable and the same as before (Kidney function - 4%, Creatinine 10.4, everything else normal - per usual). My kidney doctor bascally said that I'm not getting any better and that he's recommending we revisit the transplant clinic and get the process moving again. Normally, I am composed during my appointments, but today the tears just fell. I couldn't help it. That show of emotion really surprised him because I usually have it all together. He was honest and said there are no good options for me and that all the options on the table suck. He is convinced that the nausea and vomiting is from the renal failure, but I had that before my kidneys were failing. Everything we've researched & studied points to aHUS, blood pressure, and the infusions also being key factors.

The kidney doctor admitted that he believed that the prayers of so many are what sustained me this far because there is no reasonable answer for why my body has reacted the way it has. I was honest with the him that a transplant makes me incredibly nervous. The data outcomes for that specific surgery in relation to my disease & specific mutation are not favorable. It's a huge surgery, that in the end won't fix me - I'll still have aHUS, and post-transplant, I'll be at an even higher risk of recurrent aHUS flares due to losing what remains of my immune system. He told me he understood my concerns and that he can empathize that it's a really hard decision to make.

Today, I am disappointed, I guess. I don't really know the word to describe what I feel right now. So I will cling to God and head to my prayer closet for wisdom, guidance, and peace.

In Christ,

Kimberly