One Year Ago Today: 01/21/2013 - Recognizing the Realities of End Stage Renal Disease

(01/21/2013, Monday)

DISCLAIMER: This post is not intended to be a pity party (I certainly hope it doesn't seem like one.) Rather, it is just my thoughts and shifting perspective.)

Evie weighed 18.1 kilograms (39.9 lbs) at the end of today's dialysis, wherein, as I am told they removed 1.5 liters of fluid (12 hours previously that had removed 0.8). I don't think I have to tell you if you've been reading any of these updates that this isn't good. That being said, she feels much better having had all that fluid gone, and was decidedly vivacious tonight as we watched a movie.

I keep telling myself if we can just overcome the current struggles, the rest of this will be easy. I do the same thing when I exercise (at least I used to, back in the day when I exercised) -- sometimes you know that you are effectively lying to yourself... "Just 2 more minutes at 8 mph, then it'll be easy."--that sort of thing. Sometimes you know your plan is to increase the elevation, or to crank it up another 0.5 mph, but you convince yourself that things will be better in two minutes anyway. This whole ordeal has been a bit like that, meanwhile focusing on the end target the whole time. "We just need to fix _________ and then within a few days we should be able to go home, and then things will become more normal."--I know that it won't be normal, but more normal is acceptable.

However, today was a bit hard with its heart aching, gut wrenching, bone crushing (loss) moments. Like watching a slideshow of pictures from Evie's life so far, and seeing:

• A: The number of pictures that involved hospitalization (related to her Osteogenesis Imperfecta)
• B: The number of pictures she was having fun in water (lakes, rivers, ocean) that she is not allowed to be in any more.

I am adept at handling item A. I've known her since she was in the belly forming, and I knew her journey would not be light on doctor and hospital visits. But seeing pictures of her enjoying the water, and knowing that without additional divine intervention she simply can't do it anymore hurts. It doesn't help that I spent time talking with one of the more knowledgeable dialysis nurses Sunday night / Monday morning about the potential riskiness of swimming even in treated water.


Sad.


But this is a new limitation that I've known about for weeks, and am mostly adjusted to. Evie and I talked about it at length over a month ago.

Although I tried my best to help her stave off muscle and bone loss, it is clear that it has occurred, and that it is significant. She is emaciated, and dwindling. She will likely have a feeding tube placed before Tuesday is over. I guess I've been so worried about the effects of long term immobilization (today marks 8 weeks of illness), that I hadn't considered the impact of kidney failure itself. In the last day or so, I've realized just how damaging kidney failure is to bones. Bad news. If Evie were a camel, she'd need to carry something lighter than straw.

The thing that really has me feeling as though I have a pit of despair in my stomach though was having my wife kindly share with me knowledge that I just hadn't been tracking. Here's an excerpt from "CURRENT Diagnosis & Treatment Nephrology & Hypertension", Chapter 55 on Pregnancy & Renal Disease:

If you'd like more information, choose your own adventure:

• Light Reading: The National Kidney Foundation
• Heavy Reading: UpToDate

Somehow, I'd missed this, although I'm sure on the fringe it may have been casually discussed... In my mind it was a lingering wonder... "How will kidney failure impact her adult life?" I've still been in triage mode, still trying to endure 8 mph. Grant you, some may say that I am either naive or hopefully optimistic to simply assume that adult life is guaranteed. Fair enough, call me either. I operate under more of a guise of a plan than a real plan... As I struggle through our run, regardless of how difficult this information is, it doesn't change blessings which are hers to claim. God has a plan, and that is all that matters. We'll be okay so long as we pay attention and follow it.

So I keep my hand to the plow. No need to look over my shoulder--I must cut a straight row. I focus my eyes on the eternal target, and press forward.

DISCLAIMER: Posts Labeled "One Year Ago Today" are a record of what transpired when Evie first became ill.  The slightly edited text comes from emails which we sent to family to let them know what was happening, and to keep them updated.  These posts are usually long, but if you want to truly understand what life was like for us, and what led to this point, it makes for great "light" reading.