Kidney Disease: When You Realize You Are In Denial

When you realize you are in denial- a few thoughts on kidney disease and needing a transplant.

So I like to think that I am a realist and fully embracing the reality that my kidney function (eGFR) is 18%. That I will need a transplant. Yet there are moments when I realize I am not. That as much as I hate to admit it, I am in denial.

I don’t want a transplant. And it doesn’t even feel real that I do need one.

And I don’t ever let myself say that. Or even think it to be honest.

Before the thought is even done in my mine I find myself countering it with the idea that I am so lucky to live in a time when I can get the help I need so I can see my babies grow up. That people are dealing with things so much worse than me. Be thankful. Stay positive. Thoughts battling in my head and it makes me tired.

But that doesn’t change the deepest truth in me; I still don’t want to need a transplant.

I want my body to heal. I want a miracle. I want to move on from this chapter.

But we don’t always get what we want.

Moments I realize I am closer to a transplant than I want to believe? Two weeks ago I did my stress test (pictured here) which was the final piece needed to get approved to be on the transplant list. I felt like a misfit, like I was in someone else’s life. But feelings don’t matter, the numbers on my lab work say I do belong getting tests run on my body to see if it’s strong enough to have transplant surgery.

Another moment was today at church when I was talking with a friend who wants to help us put together a few fundraisers to help with the costs I will have to get my transplant and the follow up treatment. I realized that I was being hesitant about meeting and didn’t know why. As I processed I began to see that there are a few reasons for this. First off, it’s humbling. People spending time and energy to coordinate fundraisers and then people giving their hard earned money to support me? Yeah, it sends all kinds of emotions through me.

I also told Chris that I realized that in officially starting to fundraise it makes it seem real that I need a transplant while at the same time I still don’t feel like it’s real, and that’s a weird place to be.

While that seems crazy to say since this has been building for the last five years, I still don’t feel crazy sick or that my body is so close to not functioning that intervention is soon imperative. But the thing they say about kidney disease is that it’s a silent killer. So while I may feel pretty normal, my monthly lab work results scream differently.

I say all that about not feeling sick, yet on the other hand, I am tired. Like deep in my bones tired. I don’t have the capacity for too much going on like I used to. I get overwhelmed easily and have simplified my schedule in many ways. Some days I’m super nauseous (it’s like that morning sickness feeling). People who have had kidney transplants have told me I have no idea how bad I am because it happens so gradually that you don’t realize you are functioning on such little energy.

Next item in my brain is that I turn 40 in 11 days; I told Jesus I’d love healing for my birthday. I don’t expect it. And that’s okay. Jesus is okay with the honesty of my feelings. While I know God can heal and sometimes does, I also know that suffering is a part of this experience of life. And then before that thought was even fully written I can get all philosophical and say suffering is only in the mind and in how I see what is happening to me. This is also true.

But either way, I wanted to get an honest post out there about how I’m feeling today. Tomorrow I will feel differently.

So this post isn’t full of inspiration and lessons. But to say that sometimes things are hard and if you are going through hard I understand. I may not understand your exact situation, but I can stand with you in that you are in a situation you’d rather just let pass from you.

You know you will grow. You know it could be worse. You know you have a bazillion things to be thankful for. And you also know that there are moments that this situation just plain sucks.

I see you. And today I said a prayer for you.

If you would like to learn more about donating a kidney or transplant information in general you can read this post here and it also contains the link if you would like to see if you could be a potential donor for me. You just need to message me for my birthday in order to check on my behalf. And if you would like to donate to my medical costs you can do so here.

Thanks friends for listening.

Sarah