Family · Life Changes · Medullary Cystic Kidney Disease

Tidal Wave.

I want to declare this an honesty zone. A space where I can be real. Like really real. Can I do that with you? Can I share something really personal?

I’m afraid. I’m afraid because something that was ‘in the future’ is now ‘in the present’. It was a long way off and now it’s baring down on me like a tidal wave. I saw it coming from far off, but it was so small. It hadn’t reached my shores yet. And it was so insignificant in the grand scheme of things. There were so many others who were battling monster tidal waves that made mine look like a little ripple in the water {and still do}. I saw the others and I saw the waves that were battering against them and I wanted to rally around them because my wave was still so far from my shores; there was nothing for me to do but wait for it to arrive. Why fret over it? And it was so small in comparison to other waves, I felt the need to pretend it didn’t really pose a threat. So I waited, and I pretended. But now suddenly my wave is upon me, closing in, and I find myself bracing for impact. I’m totally unprepared.

My kidneys are failing. We’ve known that for a few years now and the progression has been relatively slow. But now it’s not so slow. I am surprised that I am surprised by my kidney’s failing. If that makes sense. We saw this coming from a long way off, so I shouldn’t be surprised. This tidal wave that would bring sickness and huge changes to my life. I just didn’t expect it to happen so fast or to feel scared of the coming changes. This wave is faster and bigger and more powerful than I thought it would be.tidal wave.jpg

And that’s what I need to share with you all. My fear. And my guilt for feeling that fear. There’s a huge battle within myself, two feelings competing for dominance.

The first is my FEAR. I’m afraid of the surgery. I’m afraid of complications and of not surviving. Of leaving my husband, and children, and family, and friends behind {though I’m not afraid of dying, which is different, and maybe I’ll be able to explain that another day}. I’m afraid of the medicine I’ll have to take for the rest of my life. Of the weakened immune system that will probably mean I’ll have to make some changes to my routine and all of the different ways I interact with kids {those germ hoarding beings}. I’m afraid of the weight I’ll gain because of the medicine, and of the comments people will make. I’m afraid of taking an organ from someone and the repercussions that may have on their life. I’m afraid of dialysis. I’m afraid of having to ask for help during my recovery time. I’m afraid of how this may affect our ability to foster children or my ability for me to care for my own children.

And then there’s the GUILT. I feel guilty for feeling every single ounce of fear I mentioned above. Guilt for being afraid of having surgery once in my life, when others have had to endure multiple surgeries or may not even have a surgery/cure available for what they are enduring. I feel guilt for fearing my body’s reaction to the medicine that will enable me to KEEP LIVING. Guilt for wanting to shout ‘you keep it’ or ‘no thanks’ to whoever may donate a kidney to me, simply because it seems impossible to receive a gift like that.

I visit my nephrologist every 6 months or so, so he can check the level of my Kidney function. We’ve known my kidneys were failing for about 4 1/2 years now, since right after Charlotte was born and I had a sudden battle with hypertension {you can read about it here}. After about a year of working to get my blood pressure under control and investigating why my kidney’s were failing I was eventually diagnosed with Medullary Cystic Kidney disease {MCKD}.  It’s a genetic disease where cysts develop in the kidneys, gradually reducing their ability to function {and filter toxins from your body}.

The diagnosis was a surprise, but even then I remember thinking “No big, I’ve got this”. A few years prior I’d just watched my mom battle the same disease, endure a kidney transplant {with several complications}, and come out fighting. And she’s still fighting for her health. Even though I know how difficult it was for her, I also know how successful her transplant has been and I knew I’d have an awesome team of support in both her and my family when the time came for us to wade through those same waters. She made it look EASY folks.

Even though I have my mom to look for as a great example for a successful kidney transplant, I don’t really know when to expect things to happen, and that adds another element of fear into it for me. My timeline for transplant is unknown. For now, we just wait until my kidney function declines enough for me to be put on the transplant list {under 20%}. Until recently, things were moving slowly {and my kidney function hovered around 27%}, but currently things have begun declining quickly and I’m now at 22% GFR {the rate my kidneys are able to filter toxins}.

During my last appointment, when my nephrologist told me what my current kidney function was, I remember my mom and I looking at each other in surprise. We didn’t think we’d be hearing this news so soon; I felt fine.  I even asked “Then why don’t I feel sick?”

The short answer is: my body is very healthy. Everything is working beautifully, except for my kidneys, so I wouldn’t be having many of the symptoms that typically arrive with kidney failure related to diabetes or other diseases.

The long answer is: I do feel sick. I think my current state is simply ‘my norm’ now and I don’t remember a time when I felt ‘better’. For so long I’ve been pretending this tidal wave isn’t affecting me, and the changes have been so slow in arriving, I’ve just endured and ignored. But if you don’t mind, I’ll complain for a minute……..  I’m exhausted all the time. I don’t sleep well. I have to force myself to eat and rarely have an appetite. Nausea makes random appearances. My anemia {which goes hand in hand with Kidney function} makes me cold all the time and I bruise very easily. I get winded at random times after doing very simple tasks. I just feel yucky. But the next day {or the next hour} I’ll feel wonderful and my energy is back and I can conquer any task set before me.

Alright. Glad I got that complaining off my chest. It’s hard for me to talk about this and I didn’t realize I’d been avoiding processing this recent development until I was meeting with my pastor last week and he innocently asked “How are you doing?” and I burst into tears and spilled my guts. I don’t think he was expecting it to turn into a sniffles and soul baring session, but I appreciate his ability to simply listen and then jump right in to asking God for healing over me.

That’s where we’re at now. We’re waiting. And we’re pray.

I’m praying for healing. For the longest time, though, I didn’t pray for healing for myself. I had just decided that this was what was happening to me and I should just suck it up because it could be way worse. I wouldn’t want to waste a prayer on myself or request God’s favor for myself when someone else may be suffering so much more. How could I complain when I’ve been given so much and have only had to endure one little health issue. But God reminded me that His healing is not limited. There is no limit to the amount of healing He can do. My receiving healing does not mean someone else misses out on the healing. So I’m praying for healing. All over healing. Kidney healing. Heart healing. Soul healing. I want to be strong and healthy and fearless and brave. And God can provide that for me. He’s changing my stagnant mindset to one of power, shaping my negative perspective to one of hope , molding my fears into fierceness.

 

I’m working on not fearing this tidal wave. I can see it coming, and that means God can too. Guess what? He also sees what will be on the other side of the wave.

I’m adopting the mindset of Moana’s grandma. I’ll dance with the water. I won’t fear it. I’ll replace each fear with hope because God sees this wave, and the next, and the next.

moana grandmother

I like to dance with the water
The undertow and the waves
The water is mischievous (ha!)
I like how it misbehaves
The village may think I’m crazy
Or say that I drift too far
But once you know what you like, well
There you are
You’re singing this in your head now aren’t ya.
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7 thoughts on “Tidal Wave.

  1. Hi Ashley! I read your blog & just wanted to give you a word of encouragement. I too have been going through sonethings, not physically but spiritually within my own self & naturally with my family. These past 2 years have been a roller coaster of emotions. Happiness, EXTREME sadness, anger, aniexty, hopelessness, and on and on and ON!!
    One thing I’ve learned & still learning is that I am a Warrior!! and so are you!! At first I couldn’t see it but as as surrendered to God & let Him lead me on this journey I began to see the woman He has made me. One scripture I hold on to is 2 Timothy 1:7 For God HAS NOT given me the spirit of fear, but of POWER, love & a sound mind!! Pray WITHOUT ceasing ! Micah 7:7 tells us there is POWER in persistent prayer ( I LOVE how the Message Bible puts it) ” But me, I’m not giving up. I’m sticking around to see what God will do.” You WILL have a POWERFUL testimony when this “Tidal Wave” has passed. You’ll find out exactly what kind of Warrior you are. In my journey I’ve learned that I am an Endurance Warrior I am durable, able to withstand, BUILT TO LAST!! You just might be a Faith Warrior! because the opposite of FEAR is FAITH!!! Faith to believe that God hears your cries and you can cast ALL your cares on Him because He cares for YOU!! Faith to believe that that dispite what doctors say God has the FINALLY say so because He is your creator, FAITH!!! the size of a mustard seed is ALL that God requires to bring about a TSUNAMI of praise!! I will keep you in prayer daily!!! I also encourage you to document the mile stones & even set backs in your journey so that you can see before very eyes how MIGHTY God is!!

  2. Sweet Ashley,
    I will be praying for you. Praying for healing, a donor, peace, God’s will in all these things.💞

    “When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord your God…You are precious and honored in my sight, because I love you.”
    Isaiah 43:2-4

  3. I think you are AMAZING!!! Your test will be a testimony to so many not just because of our relentless Faith that God can and will heal you but because of your honest and true heart while you go through this season. I am praying for you and am grateful to you for sharing…

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