When Your Loved One is an Organ Donor, Part 2 of 3: The Conversations

Trigger Warning: sudden death, organ donation, hospital procedures

When I think back to my time at the hospital, the people who were working are generally not my first thoughts. Though my memory is mixed with crystal clear moments and heavy bouts of fog, there are several workers who I’ll always remember. I remember the nurse fondly. She was very helpful and informative and kind. I appreciated everything about her. I nominated her for an award before I left. I have no idea what I wrote, so I’m sure I didn’t do her justice. I also remember two of his surgeons clearly. One because he was my main contact and had a name similar to a musician. And one because he showed me the brain scans. That surgeon seemed so fascinated as he was describing each scan. I really had no idea what any of it meant, but I was comforted in knowing he had so much interest and enthusiasm and knowledge in his work. I also remember that very few people could give me many definites when I would ask questions—legal reasons, no false hope, no empty promises, I assumed.

My husband being an organ donor was often casually mentioned. I wouldn’t address it. I would nod my head and move to a different topic. I knew he was an organ donor. I expected him to be one. But I never had to deal with that fact before. I knew he was dying, but mention of his organs felt even more final than simply knowing he wouldn’t be alive much longer. While the nurse would tell me what she was doing each time she did anything without being prompted, I prompted the doctor with questions every time he popped in the room.

“Will he wake up?” I knew that answer already, but there’s always a slight chance that something may change.

“We don’t know for sure.”

“So what are we looking for now?”

And then he would tell me what type of progress, or lack thereof, they were watching for on his brain and whether anything has changed from his last update, and at one point he answered one of my questions with “In the capacity he is in now, he will be able to help save lives if you wish to continue.” They were never pushy about donation. The doctors and nurses were all very comforting and helpful and knowledgeable. My husband was in good hands.

“Can he hear me?”

“Some people believe that.”

“Is he in pain?”

“No.”

“Did you give him pain medication?”

“No.”

“Give him pain medicine now, please. You can’t give definites on anything at all so why should I believe he isn’t in pain?” The doctor hesitated and then I asked, “Can you absolutely guarantee me he doesn’t feel a thing?” They gave him medicine.

The plan was to wait overnight and watch the swelling before making the official call of whether he would die on his own or I would need to make the decision to take him off support. We were watching and waiting, but also knowing at the same time. I had a lot of time alone with my husband before anyone else was able to make it there, which worked out well because they had a lot of time after I left. A lot for the situation, anyway. Not enough to satisfy; but satisfaction wasn’t an option in this case. I watched vital check after vital check, respiratory test after respiratory test before I finally had enough.

“What are we doing here? Are we torturing him? Is he awake because his doctor needs rest, or simply because he’s an organ donor? He doesn’t want to live like this. Not for a second. What’s going on?”

I may not have always defended myself as much as I should have, but there was never any hesitation when it came to my husband and children. I didn’t simmer any of that when questioning the doctors. After being given my options: one test taking around 12 hours to complete and the other possibly causing him to go into cardiac arrest to determine his time of death and if he was able to donate his organs, I stated we would absolutely not be doing a test that takes 12 hours. Why didn’t we start it? And the other test, Apnea test, may cause him to go into cardiac arrest. So if he does have a heart attack, very few (if any) organs would be healthy enough to donate? In my eyes, that would be him dying twice. The brain and the heart. I remember thinking:

No, thanks. This is unnecessary. Let him go in peace. Let him go now. Sorry, I’m not keeping him alive any longer. He doesn’t need any more of this, and if he will have a heart attack as well as brain death—no. No. I draw a line there. Not all donors are able to donate.

Of course I struggled with that decision. I knew there were people in desperate need of the organs that were still working. There were people in hospital beds that needed what he had. But they wouldn’t get his heart if his heart died. And I was being told there’s a good chance his heart would die if I did the Apnea test. So I needed to choose between helping strangers and making sure my husband didn’t live a second longer in a way he never wanted to live. Something I told him I would never make him do. I needed to make sure he would die without suffering. My first reaction, with no hesitation, was what I believed provided him the most comfort: “Sorry, I’m going to stop care. He’s suffered long enough. Will you help me explain this to his family?” The doctor I was speaking with completely understood where I was coming from and had no qualms with my decision. We sat down and told the rest of his family. And everyone said their goodbyes. Within minutes after that, in walked a middle-aged man with a sympathetic look on his face who happened to be the organ donation coordinator asking to speak to me. After everyone already said goodbye. At first I spoke to him alone. And then my husband’s sister joined me. And then his mom joined me. And that man said the most cliche bullshit that I ever did hear. I truly wanted to either (1) punch him in the face or (2) firmly tell him that he needs a new job, because I can only imagine the number of potential donors he turned away based on disgust alone. But I didn’t do either of those things. I argued with him. When he acted like he knew my husband, I assured him he did not. He didn’t know what the hell he was talking about. Up until this point, I haven’t gotten mad at any particular person. I haven’t yelled. I’ve been pretty accepting as I knew this was all out of my control. But then he came in with this condescending voice disguised as nurturing and I lost my shit. At first, I actually attacked my husband’s character, I said to the man, almost verbatim:

“My husband is only an organ donor because I told him to be an organ donor. He doesn’t give a shit. He doesn’t care. I care. Stop acting like he wanted all this because he doesn’t give a crap about anything you’re saying. I wanted him to be an organ donor. And if he does the apnea test he won’t be able to donate anyway. I’m not doing it. I’m not watching it. We don’t need that.”

I remember looking over to his sister after I said those words, feeling a little guilty for somewhat bashing her brother. And then the guy started talking more. And I didn’t hear a word he said. But as this strange old man was saying more bullshit that no one cared about, I remembered a moment between Matt and I not too long before his accident. I read an article in the local paper about a woman who needed a liver. I asked him if he would care if I ever opted for surgery and donated organs to a stranger. His response was that it wouldn’t bother him, which surprised me. And then he explained, “Organ donation, especially when you’re alive, is the most selfless thing you could do. If you want to consider that, go for it. I’ll probably be a match for anything our boys need.” First, I’m glad I didn’t go much further with the idea because shortly after our conversation he was no longer here to be a match for our kids; and second, in that memory I realized that of course he should donate his organs and we should wait a little longer for this to be possible. Not because of me. Not because of the bullshit this strange man was saying. Because he wanted to. Because he will no longer be here to help anyone and in this way—in this way—he can continue helping people. So during the rambling from the donation coordinator I interrupted and said, “yes.”

“Yes, we can continue with the donation route on two conditions.” One of the conditions was if his sister or mother were able to stay through the process. I couldn’t. I had two kids who were worried in a hotel waiting for me. I needed to leave and let them know what was happening, but I didn’t want Matt to be alone while going through, or waiting for, the process. And while there are people who would gladly get out of bed for the organ that would save their life, it’s a much longer process than what seems necessary. His sister and mom agreed. And then I added that we would need to clear it with his doctor because I will only do the apnea test. If the apnea test still has a high risk of putting him in cardiac arrest, then we will relinquish care and he will not be able to donate. Somehow, within the time of dealing with the worst man I’ve encountered in this hospital, Matt’s heart rate went down. He was now able to endure the apnea test without being put in jeopardy of cardiac arrest.

It was just me and the nurses and doctors when they performed his test. It was him in the bed surrounded by helpers and me standing there watching and listening and cracking. There was a lot of commotion and a lot of stillness. And then what I knew was happening officially happened.

I chose to marry him simply because I loved him and wanted him as my forever partner. We were young; there were no other reasons. I imagined our partnership to continue much longer. But his forever arrived now.

Very shortly after, I left the hospital and broke the news to our children. My husband was then joined by his only sibling and mother. His mother and sister were a part of him before he entered this world. And they were there with him after he left.

This circle of life we are thrown in keeps spinning even when we lose our main players. But his heart is out there now, beating in someone else’s chest. And it’s one of the strongest hearts I know.