“Confusion, anxiety, fear – all coursed through my veins as I opened the door to see my friend shaken and unsure. What had happened? My light-hearted, joy-filled, confident friend was visibly rattled. I had never seen her this way. ‘There is something I need to tell you,’ she stammered. I ushered her to the sofa that seemed to swallow her as she sat. ‘I’m shaking. I don’t know how to say this,’ she whispered. I felt as if the all of the air had been sucked out of the room. What could have happened that would have transformed her so drastically? ‘Just tell me,’ I pleaded. ‘Neil needs a kidney,’ she said.
I felt my heart drop into my feet as I replayed the last few months. I remembered back to the time we were walking through our children’s school and she made the comment that she was so stressed that her head itched. ‘What could make you that stressed?,’ I asked. She mumbled something that didn’t make much sense, but I didn’t press her. Fast forward a few more months and we found ourselves both working part time, though opposite days, at our children’s school. Before this change throughout the course of a normal week we would chat, text, or catch up intermittently after dropping our kids at school. Now that we were working opposite days I found myself leaving her voicemails or shooting her a text – frequently with no response. I cringed as I remembered the last joking message I had left her. I had spent a couple days helping her to organize her house and then learned that while we used to go to dinner with another mutual friend from time to time, they had gone to dinner without me. ‘I get it,’ I said to her voicemail. ‘When you need help organizing your house, you call me. When you want to grab dinner and a drink, you call Allison. This is the equivalent of a breakup – the whole ‘it’s not you it’s me’,’ I laughed into the machine.
In that moment, I had perfect clarity. The unreturned phone calls and texts, why the clutter in her home was suddenly overwhelming her, her solo dinner with our friend – how had she even managed to walk through my door? When I tried to imagine myself in her shoes I could only see me curled up on the floor sobbing and unable to cope with any menial task. ‘Oh Lisa!’ I cried. ‘I am so sorry. Ugh – I’m such an ass. I can’t believe I have been giving you grief about phone calls and texts and dinners when you have been dealing with this! How are you still standing?,’ I asked.
Over the next half hour as she peeled back the layers of all that she had been going through: from discovering Neil’s kidney disease 10+ years ago through a medical scan for an unrelated issue; the many yearly tests to determine when the time was right to start the process of finding a kidney donor; realizing that not one, but two family members who had always planned to donate were denied due to unforeseen medical issues, being so consumed with the ‘kidney search’ that she had no energy left for returning calls and texts; accepting that they would have to break their silence and forgo their privacy to look outside of family for a kidney; to the dinner with Allison to inquire about Allison’s husband’s experience of being a living kidney donor – I watched as a small part of the tension eased out of her shoulders. As I listened to her I had one very clear, very unexpected, very bold thought – I could do this. I could play a role in making this family whole again. I could help to mend a husband and father’s broken kidneys. I could give a piece of myself to save someone else. I could ‘share my spare.’
Once she left I began my research. What did being a living kidney donor involve? What were the risks? Were there any negative long-term effects? How would this impact my family? How would I even begin to talk this through with my husband and kids? I had an overwhelming number of questions but I was determined to find the answers. Above all I did not want Lisa to know what I was planning to do. I did not want to get her hopes up before I was sure that I would be approved.
Meanwhile, Lisa was making plans to jump way outside her comfort zone and speak before a group of dads who participate in Indian Princess (a community group fostering relationships between dads and daughters) with her husband and daughters. Her goal was not to ask for a kidney, but to bring their situation out of the darkness of secrecy and into the light of awareness. During this time, I spent as much time as I could helping Lisa draft how she was going to talk about this very personal subject. Secretly, I was using this as an opportunity to pose questions ‘people’ might have so I could find answers to the questions I had. What are the long-term side effects of donating a kidney? Short answer – there are none. How do you go about finding out if you are a candidate for donation? Call Johns Hopkins. Will your insurance pay for the surgery? No need – the recipient’s insurance covers the cost. Every day was filled with questions and the search for their corresponding answers. However – there was one question that had to be asked out loud in order to be answered. How would my husband feel about this idea?
By nature, I am an optimistic, non-worrying, glass half full, do your research but go with your gut kind of girl. My husband is the yin to my yang. He is less blind faith, trust, and leap and more of a whoa, slow down, there’s no going back from this, let’s think this through kind of guy. While I never would have moved forward with a decision of this magnitude without his support, I was silently, mentally, begging for him to understand. To understand that in spite of, and maybe because of, the overwhelming love I have for my own family I felt an undeniable call to love this family too. A call to give of myself so that they might be made whole again.
Once Brett and I were on the same page and committed to moving forward I found myself in hyper drive. I quickly realized that in the very deliberate effort to not put any pressure on a would-be donor, the testing process can move at a pace so slow that the progress is barely discernable. I on the other hand, was determined to move through the process as quickly as possible. From my talks with Lisa I knew that it could easily take 6 months to get approved, but I also knew that Neil likely did not have 6 months of kidney function left. My goal was to be able to tell Lisa that we had found a kidney before they needed to make the decision to begin dialysis.
When I started this journey, I had no idea I was embarking on an emotional roller coaster that would test my limits. Unlike Lisa, I am an open book. I do not tend to hold my cards close to my chest. I share my accomplishments and struggles alike, but not this time. This time I was fighting my natural bent to share. I felt a deep desire to protect both Lisa and Neil from another potential heartbreak and my family from unwanted input. They had already faced this diagnosis and the denial of two potential donors with such resilience and grace. I couldn’t bear for them to know I was going through the testing in case I too was denied. As for my family, I wanted to protect us from nay-sayers and skeptics. A decision like this is very personal and not everyone sees it as admirable. Some people thought we were fool hearty, risky, or short sighted – ‘what if someone in your family needs a kidney in the future?’ was one thing we were asked. That was a valid question – what if? However, we couldn’t make this decision based on a series of what if’s. We made our decision on faith. Faith that I would heal well and there would be no long term negative impact on my health. Faith that through this journey our family would be stronger and love deeper. Faith that God is bigger than even the potential that the future might hold something scary. Faith that if we were to need a kidney in the future someone would step up for us.
I will never forget the moment my three kids realized what I was doing. I had always planned to discuss everything with them once I was approved, but I felt no need to bring them undo stress until that point. Why burden them with the knowledge of what MIGHT happen until I knew if it was a possibility? However, they went with me to the lab to pick up supplies for one of the tests and when they asked me what I needed them for I told them the truth. I told them that it was to check my kidney function. When they asked when they would need to check their kidney function I assured them that it was not something that they would need to do any time soon. Later that week my middle son overheard me talking with a friend about Neil’s situation. He proceeded to tell his older brother and unbeknownst to me, they started connecting the dots.
That night as I walked into their room to say their prayers and tuck them in they asked, ‘You’re trying to donate your kidney to Mr. Emmott, aren’t you?’ Shocked, the only response I could think of was, ‘Why would you think that?’ They proceeded to verbalize their observations – I was having a test to check my kidney function, they knew he needed a kidney, and the kicker – because it sounded like something they knew I would do. I called my daughter into the room so we could all talk it through together.
There were questions, fears, tears, and ultimately a shared understanding that this was something we could walk through as a family. We could put our faith into action and love someone else as Christ loves us. My favorite moment of the night happened during the mini-biology lesson we had about blood types. We talked about how since my blood type is O-negative I am considered a universal donor. They each in turn asked what their blood types are. When I told them that they are all O-negative as well they each declared that if I wasn’t approved they would be willing to donate their kidney. When I assured them that as a child that wouldn’t be viable, my oldest announced that he would still try if I was denied because, as he reasoned, at 14 he was already bigger than me.
As I passed each subsequent test in the process I realized a new hurdle, one that seemed almost more insurmountable than the tests. Throughout this whole process I never wavered in my belief that I would be approved. BUT- when the moment came, how on earth was I going to tell Lisa!? I had been keeping this giant secret and now breaking that silence seemed overwhelming. How do you tell someone something like this? I thought about not telling her until after the surgery was over, but how would I explain not being able to help take care of her girls while she and Neil were gone? Face to face seemed out of the question – way too much pressure. How is someone supposed to respond to a declaration like that? I decided to default to a card. Specifically, a card that I could place on her car for her to read after she finished working, but before she had to pick up her girls.
Eight weeks and one day after my first round of lab work I received THE CALL. The team at Johns Hopkins had reviewed my case and made their decision…I had been approved as a living kidney donor. The whole world stopped and I was left standing there. I felt like I was holding my breath. Was it possible? Could it be? Did I really just hear what I thought I heard? It was the moment of truth. I had written the card earlier in the week and had it in my car for just this moment. Time to put the card on the car. I went home and watched the clock and my phone and waited.
When she called I answered to hear a barely audible voice. To be honest, I can’t remember exactly what she said. I just remember her tears. I drove straight up to school where she was crying beside her car. I hugged her and supported her as she collapsed in my arms. The journey was far from over, but the ever-present, crushing weight of uncertainty for her and secrecy for me, was lifting. She could breathe, I could breathe, and we could ride the rest of this roller coaster together.
After I was approved Hopkins approached me to ask if I would be willing to be entered into the paired kidney exchange program with Neil. In a nutshell, while I was a match for Neil, they felt that through this program they could find a kidney for Neil that was an even better match and they could find a recipient for my kidney that was a better match. The end result would be the same – I would donate a kidney and Neil would receive a kidney.
It took four and half more months for the finish line to be within sight. On September 26, 2017, six and a half months after beginning this journey, I had surgery. The next day Neil received his new kidney.
All in all, through this ‘kidney chain’ 4 people donated kidneys and 4 people received new kidneys. Neil and I spent the next few days next door to each other on the recovery floor and we’ve both spent every day of the last 7 months grateful for the opportunity to share such a special bond.
While sitting in my living room listening to Lisa tell me about their need for a kidney I had only one objective. I wanted to help my friend. In the months that have passed the ripple effects of that initial decision have carried further than I could have ever imagined. Lisa has found an unquenchable passion for raising awareness about living kidney donation. My family has experienced the joy that comes from altruistically giving to someone in need. Innumerable people have learned about the possibility of donating organs before you’ve breathed your last. Bringing it closer to home – my mom became a registered organ donor; my aunt is currently in the process of being tested to see if she can donate her kidney to a friend of hers; and I live each day in awe of how one decision made while sitting on my couch has touched so many more people than the one family I knew would be impacted.
If I am being honest, I find some of the attention from donating my kidney uncomfortable. Those who know me know that I love to tell a good story, but those stories don’t involve intimate, personal decisions. However, just like the decision to donate my kidney wasn’t based on what was comfortable for me, telling this story isn’t for me. It is for the many people who desperately need a lifesaving gift and the people who until they read this didn’t know that they had the ability or desire to give that gift. I believe there are others like me who would donate their kidneys if they only knew that it was a very real option.
Just as expected, donating a kidney has had no negative physical impact on my life, but that’s not to say there has been no lasting impact. Every day I count my blessings. Not just my family and loved ones, but the gift of being able to share my spare and make a life changing difference to someone else. They say that life begins at the end of your comfort zone. We took that saying to heart and made the leap of faith to step WAY outside our comfort zone and I can now say, without a doubt, it was worth the jump.”
This story was submitted to Love What Matters by Lisa Emmott, 44, of Fort Lauderdale, Florida. To learn more about organ donation, visit donatelife.net. You can also email Emmott at firstname.lastname@example.org for help kickstarting the transplant process and/or learning how to find a living kidney donor.
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