Organ donation is a topic that sometimes we discuss before our death and may have a someday I’ll get to it approach. Jeni and I both have our stories to share and had very different experiences with this topic.. There isn’t a right or wrong way to go about this but, we want you to be prepared for the conversation after death.
Teresa’s story – Kris and I had agreed we both were organ donors and had checked the little box on the drivers license renewals. We had the organ donor sticker on our license. I wasn’t prepared for the event and answering those questions.
On the day he died, I wasn’t prepared or even remembering that we agreed on organ donation. The phone call came at 7:10pm – I remember looking at the clock on the stove. I picked up to see who the blank was calling me now before one of the well meaning friends answered for me. The nicest lady informed me she was from the organ donation place (or whatever it was) and she was so sorry for my loss but she needed to ask me questions so that they could harvest Kris’s organs. I remember sitting in the rocking chair tears streaming down my face thinking at least some good can come of this awful day. Kris always was there to help anyone out and after death he wanted to continue to do good. The lady asked me about his various body parts and did I release them for organ donation. It was a weirdly comforting and horrible feeling going through his body parts from feet towards his head. I don’t remember much other than sniffling and un-huh ing as I mouthed who it was to my friends and they all sat around crying with me. I was on the phone for what seemed like forever, about 45 minutes answering all of her questions. I was feeling a tiny bit of good may come out of this horrible day. Until the last question.
“I need to ask you one more question, and no one ever says yes.”
“Did Kris ever live in the UK at any time for 3 months or more during 1980 – 1996?” she asked.
“Um, Yes, we did in 1992-1993.” I replied remembering fondly our time living and working in the UK and meeting life long friends traveling Europe and working.
“Oh, no, I’m so sorry, this means that none of his organs are eligible for organ donation.” she tearfully replied.
“What? Nothing? He was a healthy 40yr old?” I screeched at her.
“I know I’m so sorry, let me, see, it looks like his corneas may be eligible.” she replied.
I don’t remember anything else from the call other than feeling even worse and deflated, my job had taken us to the UK and now I couldn’t even honor his last wishes about organ donation. I was angry and felt guilty. It was my fault his organs couldn’t be donated. It was my job that had taken us out of the country and my job that denied me this last piece of comfort. I raged cursing a storm afterwards. It just wasn’t fair and I couldn’t even do that right. The anger and guilt overwhelmed me.
A reasonably healthy 40yr old man and just his corneas maybe could be of use?!?! What the HELL? I never even got to find out if they did use them…
As I write this today, 110,000 people are waiting for life saving transplants. There’s fewer to come by now due to the pandemic so I understand. I’m a firm supporter of organ donation and maybe someday my organs will be deemed safe for transplant. It still saddens me that he wasn’t able to give his organs to anyone.
Jeni’s Story –
We had never talked about the what if something happened. We were not even in our forties…so the thought of one of us dying had not come up in conversation. He avoided life insurance as it required a physical and he didn’t want to do it. Organ donation was definitely not a discussion that we had covered in our time together.
The night he died, I was functioning in total shock and numbness (like most who have suffered a sudden loss). We were in the side lounge where they had placed me and my friends and family.
I have often referred to this as the “death” room. Not a place I EVER want to be again.
Even though Bob was basically gone before we arrived at the hospital, they kept us in that room for over 2 hours before we knew what was happening. Even then, it was our Pastor who went and found out. The doctor didn’t come and talk to us until over an hour after the Pastor had found out that Bob was gone and the doctor seemed irritated that it was our Pastor who informed us.
Once they had let me know that Bob was gone, different individuals came to talk to me.
I remember that one of the first to talk to me asked me if I wanted to have an autopsy done. I can remember saying that I didn’t want this to happen as I didn’t feel Bob would have wanted that. I was then “informed” that because he was so young and because it was a sudden death, an autopsy would HAVE to be completed. He was merely informing me…not really asking. I remember thinking, “then why the HELL did you ask?”
Next up, were 2 individuals that came bearing a clipboard. I can remember them talking and me not registering what they were saying. They had come into the room and just started their spiel. They were talking about organ donation. I saw the fear and terror in my children’s eyes as they were listening to these individuals as what they were saying started to make sense through the haze. Where I gathered the strength to get them out of that room, I do not know. However, I quickly moved us to the hallway to continue the conversation.
Now, I have family members who have received organs from donors and I am forever grateful to those who were able to make the decision that saved their lives. So, please know that had this situation been handled differently, I may or may not have made the same decision. But, here is what happened that night.
I was in shock. I was numb. I had already been denied one decision in regards to my husband and I had many more to make. I felt powerless. I felt weak. I wanted him back. I wanted to hold on to him. They were already going to cut into him to determine why he died…no matter what I said. And, now these 2 women with their clipboard had barged in on me and my family and friends while we were trying to process his death to take more of him. They had done it in front of my kids with no empathy or sympathy for what was happening to us. At least, that is what it felt like to me.
I had enough. I was done. I could feel the fury rising inside of me. They were not taking anything more from us. How dare they do this in front of my kids? So, even though I know the importance and the impact of organ donation, I was not having it that night. I made the decision not to do what they wanted and, in this instance, they could not force me.
Is this what he wanted? I don’t know. Would I have made the same decision if they had handled things differently? Again, I don’t know. All I know is that my fight defense came out and the decision was made. I felt that I had to protect my children and what was left of us.
No matter what your experience was like, there’s no right or wrong way to do this. In grief we all do the best we can. Our hope is that you have kind and supportive people around you.
Our intent is that our stories help you in some way. We also want to spark a conversation with your loved ones about your death and dying so they know your wishes. That way, they can act in accordance with your desires instead of relying on a knee jerk reaction to the questions that will come. We also have some resources below for you.
Please comment and share your experiences. If you have resources please share with our community.
Wishing you health, peace and blessings,
Teresa & Jeni
Organ Donation Resources
- https://www.organdonor.gov/about/facts-terms/terms.html
- https://www.donatelife.net/
- https://www.webmd.com/a-to-z-guides/organ-transplant-donor-information#1
