My Story of Hope
March is National Kidney Month and before it ends, I want to share my story that I wrote for Donate Life Northwest. You can see the short version here. Here is the longer version, which consists of questions I answered. I hope you enjoy it.
Describe your life before you got sick.
Before I was put on the transplant list for my second kidney transplant, my life was as normal and typical as any other person’s. I had few limitations and was able to do most things that I wanted to do. My restrictions were limited to what would affect my kidney transplant, which meant no contact sports, no tattoos, no piercings, and no herbal remedies.
Having a kidney a transplant, never stopped me from going after my goals and dreams.
Give a brief description in layman’s terms of what caused your need for a transplant.
The first time my kidneys failed in 1996 was due to rare autoimmune disease. I received my first transplant in 1998. My transplant kidney started deteriorating in 2014, they called it acute rejection. By 2015, my transplant kidney was in chronic rejection and I was told that I would need another transplant and I was eligible to be listed.
Since being on the waiting list, choose a moment when you were sickest. What was your life like? Did you experience any physical/activity restrictions?
I never really felt sick, I wasn’t ill, I just showed signs of kidney disease. I was constantly tired, my feet would swell and I became anemic. I spent a lot of my time planning naps. I worked 8 hours a day, came home and would take a nap for about a hour and would go to bed and sleep for 10-12 hours each night. This was before I started dialysis.
When I started peritoneal dialysis (PD) it came with more restrictions. I have a tube in my stomach, I can’t go in hot tubs, pools, and I can’t wear form-fitting clothes. I’ve also become pretty meticulous at keeping all my medical equipment cleaned sanitized. Also, being hooked up to a machine every night has its limitations. I feel like my body is no longer my own.
How do you feel waiting? How have your emotions changed throughout the wait? How long have you been waiting?
Waiting is probably one of the hardest things I’ve had to do. It is emotionally draining and out of my control. For the past two and half years, I’ve dealt with the ups and downs of waiting. I’ve had living donors come forth and not be compatible, not be eligible, and change their minds.
In October of 2017, I got the call. Within in 24 hours, I saw my life change and I saw freedom, only to find out the donor’s kidneys were not in condition to donate. I grieved for days.
I have to believe that all these outcomes have happened for a reason. I have hope that my donor and perfect match is out there.
Describe the effect that being on the waiting list has had on your family.
It’s been heartbreaking for those closest to me.
For my mom, it’s been heartbreaking to see me through all these ups and downs. When I was younger, my mom took on most of the responsibilities, fears, and stress. As a young adult now, I think it’s harder for her to see all the emotions she experienced before in me, and have little control over what happens.
For my partner, it has also been hard to watch me wait. He’s the one who gets to see the day to day effects waiting and being on dialysis has had on me. He’s seen me at my most vulnerable moments.
Describe what it means to you that people make the choice to be an organ/tissue donor. What would you like to say to them?
I personally know the impact of how being an organ donor can save someone’s life. If I had not received my first kidney transplant from an organ donor, I wouldn’t be here today. Being an organ donor is a way to realize your ability to change someone’s life and bring special meaning to your own. Having the ability to save someone’s life selflessly makes them a hero.
How will a transplant change your life physically and mentally?
The word freedom comes to mind. For the past two and half years, I feel that my life has been on hold, unable to travel far and do things that I want I am most looking forward to the freedom. I feel like I’ve been on edge, anxiously awaiting the call, constantly wondering when it will happen, and I’m ready to be free of that.
What is your advice to people who are unsure if they want to register as a donor?
You have the power to leave this earth in a meaningful and impactful way by saving someone’s life. Why wouldn’t you want that? How do you want to be remembered? Donor families sometimes have the ability to see the lifesaving hero their loved one has become and watch a part of them live on.
After hearing your story, what message do you want people to walk away with?
Waiting is hard. It challenges you emotionally and can be physically draining. Life at times seems stagnant, not knowing when and if you’ll ever receive your life-saving organ transplant. I have hope that my time will come soon and I will receive my gift of life. It’s been helpful to have family and friends that are supportive of me through this journey. I feel so blessed and thankful that my first donor has allowed me to live and I can’t wait for my next donor to help me continue on this journey.