A Little Reflection

Since all this transplant business has started, I've had several people ask me how I'm feeling about everything.  I figured this week was a good week to tackle that topic.

The short answer is... overwhelmed.

Earlier this week, Mike was out bowling with his buddies, and I was home alone. I knew my mind was reeling, so I decided to distract myself with a chick flick on Netflix, but as soon as the ending credits began to roll, my mind quickly returned to its looping cycles of anxious thoughts.  So I called my mom. That's what every grown woman does during times of stress, right?

Anyway, I cried. For the first time, I let it all out. My fears, my anxieties, and my emotions.

So you might be wondering...

But why are you crying? Aren't you happy?  You're getting close to getting a transplant!

OF COURSE I am! I'm ecstatic!!!

But there's also fear.

I fear letting people down. I fear getting some terrible news or results from some test. I fear complications during surgery for my donor or me.  I fear being told that I can't get a kidney. I fear spending my life on dialysis.

There's a lot to fear.

It's the end of the school year, which is inherently a stressful time. Add in juggling sub days, medical tests, biopsies, scans, lab work, meetings, grading, dieting, exercising, and a sick dog, and it's a lot.  It's a bit overwhelming.

I'm also getting a lot of the test results in now. I definitely know more about my body now than I ever have!  I see that I do have some small calcifications in my heart. There are some clusters of calcified granulomas in my lungs. One test showed small pericardial effusion (fluid around the heart), while another scan showed no pericardial effusion, but it did say I had a slightly enlarged heart. Heart disease and kidney disease go hand-in-hand, and the docs said it's not major, but seeing it there, in print, still makes me a little nervous. There's been nothing so far that indicates that I can't progress through to transplant, so that's great news. But I also am seeing evidence of the permanent damage the granulomatosis with polyangiitis (formerly Wegener's granulomatosis*) flare of 2011 left in its wake, so of course that begs the question of what happens if there's another flare.

I also know that the infections of 2011 nearly killed me. I was borderline septic and had a fungal infection in my brain. I'd be lying if I said I haven't thought about how all that could happen again.

The other struggle is the utter loss of control I feel. Many of my friends and colleagues tease me about being so detail-oriented and organized. When I was being interviewed by the social worker, she said that excessive organization is common in people with chronic illness. She said that it's a way of compensating for a lack of control over my body and illness.  Yep. Sounds about right.

I know logically that worrying or fretting about these things doesn't make it any better.  I know that the only way to proceed is to take things one step at a time. Generally, I'm ok with that.

But I'm also a planner. 

And there's NO way to plan for this.

I'm swimming in a sea of uncertainty, and - sometimes - its hard for me to keep paddling.

But...

There are so many things that are keeping me afloat.

My family is amazing. We had a family trip planned to Hawaii this summer. I was nervous about leaving, though. Even though the transplant team assured me that they could work around it, my mom knew that I would feel more comfortable staying here, so she cancelled the trip.  My brother and his family also decided to skip Hawaii so that we can all go together as a family another time.  That's selflessness!  We'll go someday, though. And hopefully, when we do, I'll have a fancy new working kidney that will let me explore and enjoy all the activities on the island.

My friends and colleagues are so supportive. Between texts, emails, Facebook posts, and phone calls, I have so many people who are standing by my side and providing support. A few weeks ago, during a Weight Watchers meeting, the leader was discussing finding your squad. I thought long and hard about the folks in my life who would be there to push and support me, and I was both awed and humbled by the number of people in my life I can count on.

My students have been absolute darlings.  I told them all about what was going on a while back. I find that being open with them helps them open up to me, too.  They ask me how everything is going, how my tests are going, where I am in the process, etc. I even have a student who explained to me that - in his religion - almonds are given as a gift for good luck, so he's bringing me an almond on Monday​.

I'm blessed beyond measure.

So, when I'm feeling overwhelmed, I know that I can truly count my blessings and be grateful for the immense love and support I have.  In 2011, I remember feeling truly grateful for every single day of life. That's one thing about a major illness. It definitely gives some perspective. So I know I'm going to be just fine. I know that this is just a part of the process of living, learning, and growing. I have faith that everything will work out fine in the end, and when I get overwhelmed, I'm so grateful that I have a whole community who has my back.

*Apparently, the powers that be have renamed my super-rare autoimmune disease. It turns out that people don't like having a disease named after a Nazi, so Wegener's granulomatosis is now known as granulomatosis with polyangiitis. Seriously. So. Many. Syllables.