April 22, 2019

My Journey through Donation

By MichelleNicole

July 10th 2018 I am walking down the halls of Ronald Reagan Medical Center with butterflies in my stomach. My mom and dad following close behind, whispering it would all be okay, reminding me how brave I was. This was a Tuesday unlike any summer day. Typically, surrounded by colleagues at work and heading to the gym for an evening workout. Instead, nurses and doctors, prepping me to undergo surgery, surrounded me.

At the end of 2017, I called a “family meeting” to inform my parents and sibling of a decision I had made. I had been researching who, what, where and how of organ donation. This led me to UCLA Connie Frank Kidney Transplant Center. I read the steps to donation and what life would be like after surgery, over and over. I saw no reason not to donate. This was the start of my journey to become a non-directive donor.

The first step was to take a class to learn about the donation process. I was surrounded by people who were there to help someone they loved or cared about. I sat quietly as I did not know much about the disease or those close to it. Following this class, I underwent multiple appointments consisting of blood tests, MRIs and discussion with psychologists, social workers and doctors. During these appointments, I was overwhelmed with emotions. It did not feel fair that those who were suffering from kidney disease had to undergo these types of things regularly. Here I was, a healthy individual, choosing to put myself through the pricks and pokes. Let me tell you too, I faint when I get a shot or blood drawn. This took a lot more out of me than I had thought going in. However, never once did I question putting a stop to what I was going to achieve.

As appointments went by, and as I was being cleared with each one, I did not tell many people besides my family of the status. Being 25 at the time, there were many opinions about the unknown future. However, I stayed confident that I was doing the right thing. My decision was allowing someone to live his or her life not on dialysis. With that, there would be so much more opportunity for this person to enjoy the little things again. We take for granted the simplicity of being able to get up for a glass of water in the middle of the night or being able to walk to the kitchen before bed. Those on dialysis do not always have this freedom.

The day I found out I was a match, I remember exactly where I was at work and crying that it was actually happening. My coordinator called with the news, informing me this was a chain and he was ready when I was. “He”, I found out my recipient was a “he”. A few days before the surgery, I was informed that he was in California and that his wife was donating to someone else, as well.

As the days grew closer, my family and I were noticing “signs” associated with kidney donation and disease everywhere we went. News stories, license plate frames, childhood friends, it surrounded us. I am a firm believer everything happens for a reason. This was definitely telling me I was in the right place doing the right thing.

I was very lucky to have an easy, quick recovery. As I started getting back to my normal routine, I felt something missing. I still had not heard from my recipient. I knew this could be a possibility from the beginning. I kept my head up with optimism that he was doing well and in time he would want to meet me as much as I wanted to meet him.

November 5th, 2018 11:30pm, for some reason I woke up and checked my phone. Flashing before me is an email from the recipient! I’m in shock, happy tears flooding down my cheeks, I begin reading! His words are incredible! I’m beyond myself. In that moment it all clicked. Throughout my journey, I was constantly asked why? What made you want to do this? My answer out loud was because I wanted to help someone. However, I knew there was more to it. I knew my life’s purpose could be more than what I was routinely doing. I wanted to be the good person I knew I always had been. But somewhere along the way I was forgetting the real me. I’ve always been the person to volunteer or lend a helping hand but how could I do more. In this moment it all made sense. The way he thanked me, the way his life has changed, the way his mother, wife and daughter’s lives were all filled with less worry, was because he gained a new kidney that I was able to give him! I knew whoever my recipient was, this was a gift that would make a difference but the words shared between all of us, were more powerful than I could ever imagine.

Shortly following the holidays, we all got together to meet in person! This was filled with laughs, hugs and nerves! We enjoyed getting to know one another and each other’s families. The bond between us will continue on as a friendship. A connection no one else will understand. It has been so rewarding to see such a strong, incredible man be able to play with his kids again, take his wife out to dinner, and not have to stress as much about what’s unforeseen. This has filled my life with so much love and worth.

From post-surgery to meeting Arturo, I felt my journey was only beginning. I began to post on social media my story. I noticed during my process, I didn’t have many people who could relate to what I was going through. Even though my family was supportive, I had questions that they couldn’t answer or simply wanted to talk to someone who had gone through what I was feeling. I found when I posted on Instagram, people I didn’t know were reaching out to me. Whether they were donors, recipients or individuals interested in learning about the process and how to do it themselves. This made me think, another chapter could begin in this book of mine.

I reached out to my Living Kidney Transplant Coordinator, Suzanne McGuire, to find out how I could get more involved. I was eager to be involved with support groups, patients, and the kidney program whether related to donors or recipients. Suzanne introduced me to Christina Lopez, manager of the Core Kidney Program. I was very excited and eager to get the chance to chat with her to see where I could lend a helping hand.

After meeting with Christina to discuss where I could help out, she introduced me to Dr. Rastogi. Dr. Rastogi is one incredible person! Him and his team are doing so much to promote health, share knowledge and provide the best care for patients. We discussed how I could become a volunteer for the committee and eventually become an ambassador for the program. This was all so exciting!

Since meeting with this incredible team of individuals, I have met other donors and recipients who all share a commonality of wanting to get awareness out there. I am so grateful to be amongst this group. We are currently working on the annual Kidney Health Fair. I can’t wait to see the community come together to support this wonderful day and many more days to come like this.

Tags: CORE Kidney Program, dialysis, Dr. Anjay Rastogi, featured, kidney disease, kidney donation, Kidney Fair, non-directive donor, organ donation, patient stories, Ronald Reagan UCLA Medical Center, surgery, Transplant, UCLA Connie Frank Kidney Transplant Center

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