Declined

I realize very few readers are going to be able to relate to this exact situation, but I feel like I need to share it since it’s taken up the last five months of my life. And while you might not be able to relate to the exact situation, maybe you can relate to the internal struggles and the feeling of being directionless.

***

Almost five months of my life. Gone. Never to be seen again.

April 20th was the day it all began. The table vibrated as the air filled with a high pitched ping. I pulled myself out of a world of international espionage and looked up from the pages of the book infront of me and glanced at my cellphone.

I had a new text message from my mom. I read the words and felt my stomach clench ever so slightly. If it had been good news the text message would have been wordy and full of all kinds of exclamation marks and emojis. Instead it was four concise words. “Medical update. Please call.” Somewhere deep inside of me I already knew what she was going to say, but maybe part of me was still in denial.

When she answered her voice was cheery. Too cheery. But when I asked her “what’s up?” her voice changed. It wavered ever so slightly as she let me know she had been officially declined as a kidney donor. I knew she was devastated. Ever since the very beginning when talks first began she was the first to sign up. She didn’t want to feel helpless. She wanted to do whatever she could to help her son. And while I sympathized with her situation, the gravity of what she was telling me had begun to sink in. She had been Plan A- the first in line. I was Plan B – second in line. It was my turn. I was next in line. I struggled with the news. My next year flashed before my eyes. All the things I planned to do, suddenly on hold. All the things I would be giving up. Each thought adding another layer to the wave of depression that was threatening to wash over me.

I struggled with the news for a while. I spent the next couple of days switching from tears of depression over being trapped and tears of panic at having to voluntarily have major surgery. Surgery when I was entirely healthy. I was volunteering to risk my health for my brother’s. To cut open my healthy-self to help my brother. I had always been second in line, but I’m not sure I ever really believed it would be my turn. Did I really want to donate a kidney? It was always assumed I would… By everyone including me. Was I okay with putting my life on hold? Could I live with myself if I didn’t go through with it?

My mom was devastated she had been rejected and my brother was weeks away from needing to go on dialysis. I felt like I was being selfish. But I was scared. I spent weeks searching for a silver lining in the dark cloud that had settled over me. I wished desperately that there was another option. Thankfully my brother was very nothing but supportive and even apologetic; aware of the weight of the request. My mom on the other hand was pissing me off. I get that she wanted to help my brother. I get that she would do anything she could for him. But any time she talked about it I was left with the impression that she was way too willing to risk her daughter’s life to save her son’s. I know she had good intentions, but her comments made me resent her. Almost made me not want to do it just to spite her. But it wasn’t about her. It was about my brother. I didn’t want to do it but at the same time of course I would do it. How could I not?

So after a month of agonizing I finally met with the living donor program and met with the surgeon. They talked about how it was a big request, and how for my own health, they actually recommended that I didn’t donate a kidney. But that they were also there to be supportive of my decision to offer help all along the way. I finally felt like I had some people who were on my team and my team alone.

And despite my fears and my conflicting emotions, I had made my decision long before my mom was ever declined. Back in November of the previous year when we first learned my brother finally would need a kidney, I offered. Of course I offered. He was my brother. Like I said, how could I not?

But being in line and being next in line is a very big difference. A terrifying difference.

But I kept going forward. I did the tests: the CT scan, the renal scan, the 24-hour blood pressure test, the chest X-ray, the physical, the 24-hour urine collection, the blood work, the social work, the cross match, and a couple of extra tests just because of my medical history. And along the way I made peace with the fact that I would be donating a kidney. I updated my will, I identified my support system, I discussed disability leave with my work,  I picked a timeline for surgery that would fit in my schedule, and I put life on hold.

And then I got my results. My first set of results. I was in a grey area. I had some red flags that had popped up: I had trace amounts of blood in my urine and too much protein. What did this mean? Health-wise it was to be determined. It didn’t mean I was declined, but it did mean that I would need more tests.

More waiting. Waiting was always the most agonizing part of the whole process. I just wanted to know. I just wanted to get things over with. The original estimate for the whole process was nine months, and I was well ahead of schedule. I had busted my ass to get all my testing done as quickly as possible, but I was still impatient. And now hear I was with four more weeks of waiting while they took more urine samples to figure out why I had blood and protein in my urine.

And then I got my results. Round two. The protein in my urine was still too high and the trace amounts of blood had apparently come from my kidney. What did this mean? There is a chance I have the same condition as my brother, but that it hasn’t been triggered yet. It seems as though our family has a susceptibility for IGa nephropathy (i.e. kidney disease), which is why my mom got declined too. And what did this really mean? I was being declined. I have too much life still too live, the doctor said. Too much time for my kidneys to potentially start failing too. I might need my kidneys someday so my brother can’t have one now.

So it was over. Just like that. Five months finished in the most anti-climactic fashion. No more what ifs. No more waiting. I had expected relief. I had expected a bit of guilt too, but mostly relief. But it wasn’t there. Guilt, a little bit. But mostly just disappointment. I couldn’t help my brother. I had spent the last five months convincing myself to do something that I was never going to get to do. In order to convince myself to donate a kidney I told myself “that at least I would get to be the kind of person who donated a kidney to her brother” and I identified with that. That became a part of who I was. And in a half hour discussion with a doctor, I lost that. I lost a part of my identity. I had spent five months of my life committing to something that was never going to happen. Five months. Gone. Wasted.

My whole life has been on hold. And Tuesday is started back up. It had been sitting idle at the station all this time and I had to get back on. I stepped on, the doors closed, and my life left the station again. It kept on going. As thought it had never even stopped. Where it is headed? Who knows. But here I am. Lost and in shock. Back onboard my life, unsure of its direction. What do I do now? Can I pick up where I left off five months ago? Where was I five months ago? So much has changed but at the same time nothing has changed. I know the disappointment will eventually fade, but once again, I find myself searching for meaning and silver linings in the dark cloud that has settled over me.

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