Margin of Error

Health Update #28

Hi friends!

Last week, I had my appointment with my hematologist. He's my favorite doctor on my team and I always leave his office feeling much more encouraged than when I walked in. If you are on my personal social media, then you will have seen this already, but I wanted to share here for those that are following along here.

After my appointment with the kidney doctor, I was feeling discouraged and overwhelmed. The transplant discussion seemed to rear it's head out of nowhere. My husband is very pragmatic and suggested we wait and see what the hematologist said before making any big decisions...

So at that appointment last week with the hematologist, he gave us a bit of clarity along with some good news...

THE GOOD NEWS

There is a margin of error on blood work of about .5 of a point. Remember, the week before at the kidney doc my creatinine was 10.5... imagine our surprise when the hematologist said it was 9.05. That a point & a half difference. Basically outisde the margin of error. We know that the hematology labwork is correct because they draw & test in-house. From drawing to results takes about 20 minutes. So my husband's take on it is that something went wrong with my last blood draw with the kidney office - either it was left out too long or not processed right away. The do not do their lab processing in-house, it's sent out, so that is likely the case.

Knowing that my creatinine actually trended down (instead of remaining the same) changes the perspective on this issue for me and my husband.

THE CLARITY

The hematologist said he understands why the kidney doctor is so concerned and pushing for a transplant. It's because I'm so young to thave these issues and he wants to avoid dialysis. However, my age is a huge reason the hematologist (and my husband) do not want me to rush into this. See, you can only have so many transplants (i think it's 3) before you are dialysis dependent for life. Once I go down that road, there really isn't any turning back.

The hematologist also has concerns about recurrent flares associated with a transplant. A transplant for me is like a band-aid. It helps with the renal failure, but I will still have aHUS. At the end of the day, the aHUS will still try to attack and kill my body. He is concerned about all the anti-rejection meds I'd have to be on and how that will impact recurrent flares - anything that triggers an immune response for me, the response is opposite of what it should be. With anti-rejection meds, I'll catch everything coming & going which means more immune responses and more attacks on my body.

All of my other labwork came back in the normal ranges, so according to him, my kidneys are doing everything metabolically that they should be. Creatinine is the only thing not being filtered correctly.

So overall his response was that it wouldn't hurt to get on the transplant list, but do not rock the boat at this time.

In about two weeks, I have my next infusion, and I am actually really excited about it. I can tell they are making a difference. The nausea/vomiting comes & goes. I've thrown up twice in the last 7 days so that's progress!

Overall, my appointment at hematology was very reassuring, and knowing that my creatinine actually trended down gives us cause for pause. We have a LOT to think about, pray over, and process right now. We have relied heavily on God's direction and this decision will be no different. If you would join us in specifically praying over this, that would be helpful!

In Christ,

Kimberly