The nephrologist’s voice sounded far away as he told me about my diagnosis. Membranoproliferative glomerulonephritis, type 1 idiopathic. My immune system had caused damage to my kidneys, and no one could tell me why.
I asked him if I could still serve in the Marine Corps.
“Oh, of course not,” he said matter-of-factly.
He was right. After serving almost 12 years as a combat camera videographer, I was medically retired. I lost more than a military career. I was in my 20s, single, and living alone away from my family. I felt like I no longer had an identity—and no control over my body.
One minute I’m deployed to Afghanistan, and the next I’m a kidney disease patient. Instead of deployments, I traveled to dialysis three times a week. I couldn’t see spending the rest of my life like that.
After a period of accepting my situation and becoming compliant with my treatment, I completed the process to be eligible for a transplant. My transplant coordinator encouraged me to pursue a living donor instead of waiting on the list for a cadaver donor. I agreed, but I expressed concern about what that would entail.
There are plenty of resources for how to find a living donor, but we do not talk about how to prepare mentally for such a task. The first thought that comes to many is this: “How can I have the nerve to ask someone for a kidney?”
To fully commit, you must release any negative limiting beliefs that may cause you to give up . . . or, worse, to not try at all. It may seem overwhelming to focus on finding a living donor and enduring life with kidney failure. Here are the steps I went through to become mentally prepared to pursue and successfully find a living donor.
Limiting beliefs about pursuing a living donor
I had a lot of thoughts and emotions about seeking a living donor. Three of the most common ones were these:
“I am in denial.”
It took me a while to accept what I was going through. I thought I had lost my life. For a while, I didn’t care about improving my quality of life with a transplant from either a living or a cadaver donor. I only knew the bare minimum of my diagnosis just to function. I even considered whether going through it all was worth it.
Accepting the differences in life brought about by kidney disease requires input from your healthcare team and support system, and from educating yourself as much as possible. Once I asked for help and learned more about my illness and how dialysis affected my body, I did everything needed to become a compliant patient and a candidate for kidney transplantation.
“I’m a private person.”
I grew up in an environment where you’re taught to keep your business to yourself to prevent others from talking about you. There are many misconceptions and stigmas about kidney disease, especially when for some it can be an invisible illness. I had to release my concern that individuals would judge and criticize me and instead focus on educating people. It was (and still is) difficult to share my journey, but doing so led me to my living donor.
“I don’t deserve a kidney.”
Although my disease was an anomaly, I wondered why anyone would consider giving me a kidney. I have encountered others who felt they were not worthy of a transplant because of guilt, low perception of themselves, or not wanting to become a burden to anyone during the healing process (and potential risk that goes along with transplantation). Knowing your “why” for wanting a transplant and why you deserve one will give you what you need to stay motivated in your pursuit of a living donor.
Steps toward mental preparedness
Step 1: Prioritize your physical and mental health
Above all, you must remain transplant eligible. Without that, having a living donor is meaningless. You may not have thought about it, but you are the one who is most responsible for your health. It is your responsibility to use your healthcare team as a resource; educate yourself about your diagnosis, kidney disease, and transplantation; and comply with your treatment.
Don’t be afraid to ask questions. Share your thoughts and feelings with your healthcare team, a psychiatrist, friends, and/or family. You can’t go through any of this alone.
Learn how to ask for help. I know it may feel painful to ask for help when you know you need it. To even consider asking someone to donate a kidney may seem impossible. Remember that there are people who want to help you just as you desire to help others. Seek help when you need it.
Step 2: Become comfortable sharing your story
Whether you pursue a living donor online, with signs, flyers, or by word of mouth, be ready to share your story. Remember that you choose how much you feel comfortable sharing. I recommend just speaking from the heart. Here are some story topics:
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■ What is your diagnosis and how was it discovered?
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■ What is your life like on dialysis?
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■ How will your life be improved with a transplant?
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■ What are the facts about kidney disease and living donation?
You do not have to ask someone to be your living donor.
Instead, just spread awareness of your situation. You will draw individuals to your story who will feel compelled to share and hopefully desire to get tested as a potential candidate. The more you share your story, the easier it will get.
Step 3: Know why you want a kidney transplant
A transplant is not a cure; it’s a treatment so you will not need dialysis to function. Transplantation is not just about the act of pursuing a living donor; it’s also about preparing yourself mentally and physically for a life-changing surgical procedure that may improve your quality of life.
When you know why you want to pursue a living donor and receive a kidney, then what you must do to get one will be more significant to you because you will have created a purpose. This purpose is a part of your story. It will connect you with those who will want to support you and help you on this journey. Share it with your healthcare team, your friends, and your family.
The outcome
My purpose went beyond avoiding the prolonged physical effects of dialysis. I wanted to one day live an exciting life like I did when I served in the Marines—not bound to being on a dialysis machine. I wanted a second chance at life to learn from the mistakes I’d made in the past and truly show gratitude for everything I have by serving others.
I used social media to share my story, and on April 2, 2015, I received a kidney transplant from an amazing woman who didn’t know me but saw my story and felt compelled to give me that second chance at life. When I woke up from the surgery, all I could do was cry tears of joy.
That day was worth the emotional roller coaster. It was worth being disciplined as I followed my diet and complied with my treatment. It was worth putting myself out there for people to judge or criticize me. Regardless of the new list of challenges having a kidney transplant placed on me, it was the best decision I made for myself during this entire experience.
In the United States there are 102,962 registrations on the donor list and only 12,740 donor kidneys recovered as of August 31, 2019 (1). If you decide that you want a kidney transplant, you owe it to yourself to do your best to care for yourself mentally and physically. It is possible to find a living donor instead of waiting for years on the list. Of all the many things you lose control over because of kidney disease, the act of pursuing a donor is all yours.
The Executive Order on Advancing American Kidney Health calls for an increased focus on transplantation, including provisions to increase the availability of organs for transplant and support for living donors through compensation for costs such as lost wages and child and elder care expenses. For the next few months, the Kidney News series “My Transplant Journey” will feature perspectives on the patient experience with transplantation.
Reference
Organ Procurement and Transplantation Network. https://optn.transplant.hrsa.gov. Accessed September 26, 2019.
