AKF Ambassador Spotlight: Ellery Payton
1. What made you want to become an AKF Ambassador?
The reason I wanted to become an AKF Ambassador is because I felt that sharing my journey with kidney disease would be helpful to someone who has just been diagnosed or is a caretaker for someone dealing with kidney disease. When I was first diagnosed, I walked blindly through the process only having my doctors providing information. Having someone dealing with the disease, I feel, would have been a very helpful component to me, so I am dedicated to sharing my story as much as possible in an effort be a comfort to someone else. I feel it’s very important to show that while kidney disease is very consuming, life doesn’t end with the diagnosis.
2. How has being an Ambassador helped you?
I have had the opportunity several times to participate in sharing my experience on Capitol Hill, news events, and even sharing my story to make it easier for those also living with kidney disease. As an Ambassador, I count it as a blessing to be a blessing to someone. There is no better feeling to me than to hear or see a person’s whole expression or demeanor change, because you are sharing your journey. One of the most rewarding experiences was speaking to a young lady just diagnosed with ESRD. She googled me from seeing one of the news shows I did with AKF. She was having a really hard time dealing with, and accepting the fact of her new diagnosis, and considered ending her life. We spoke over the phone for more than 4 hours. Hearing her slowly calm down and become less anxious allowed me to give her more information on what she should expect, to explain that I know dialysis is a very tedious process but is better for her in the long run. The experience just overwhelmed me emotionally. The fact that something I said or did helped her to move on through the process was very rewarding for me. We have remained friends since and speak often.
3. What have you learned from being an Ambassador?
I’ve learned that it’s very important to stay on top of my care. After meeting so many other Ambassadors in the events that I’ve attended, I’ve learned that while all of us suffer from the same disease, the journey is often much different. Being aware of your body and how the illness affects your health in many ways is key to living life more efficiently and effectively.
4. Why should others become AKF Ambassadors?
Because we have a full and graphic understanding of kidney disease, which gives us a more passionate voice conveying our message to others, and especially our leaders, how important it is to make sure that our medications, time off needed for appointments or surgery, or just to be a face that you are surviving kidney disease. As an Ambassador, I take personally my responsibility to help mentor someone through this. As I said earlier, this is a very scary, lonely and frustrating disease. As an Ambassador, you can get direct access to those who are directly affected and need our help.
5. What is something you’ve learned about kidney disease and dialysis that you wish you had known a lot sooner?
I wish I’d known the factors that caused kidney disease. As a kid, I would have never related kidney disease to hypertension. Because my family members had hypertension, I knew that it was very serious, but I never related it at all to kidney disease. I also wish I hadn’t waited too late to begin dialysis. I refused to start as early as I did because of my son. I was afraid of what it my do to my body, and the amount of time that it would take me away from him. Those were just my insecurities, but I’m sure I waited and suffered 6-8 months longer than I should have. I didn’t realize how much better I’d feel. I’d only heard the horror stories, so I tried to stay clear. And just a better understanding that what we’re taught as a kid is true, but it takes more than a glass of two of water take care of your kidneys.
6. How would you like to stay connected to other Ambassadors?
Having emails, and even phone numbers are a great way to stay in touch with each other, being that we are all located in different parts of the country. I also think that it would be great to maybe once a year or even more if desired for Ambassadors who are able to get together and meet. We typically meet up for Advocacy Day on Capitol Hill, etc. which is great, but we’re all running around for our meetings, and participating in the trainings. Maybe a weekend or something where we could all just get together and share, network, plan different ways that we could maybe help each other in our different states might work well and be very helpful.
7. What are your best tips to get through the dialysis treatments?
To find a helpful network of friends, family, and a support system that can help you physically and emotionally get through it. I learned much later how much the whole process affected me emotionally. I’m a single father, and having a 2-year-old at the time of my diagnosis made me put up this Superman-type shield. I fooled myself, because I pushed through most of it trying to make sure that everything and everyone, especially my son, wasn’t affected by what I was going through. I would also say to make sure you are very aware of your treatment and what is going on with your body during dialysis, and afterwards, and learn the vocabulary to discuss with the dialysis team and your doctors. I’ve definitely learned that awareness is the key and could prevent a lot of the side effects of dialysis and could possibly even save your life.
8. What do you wish elected officials knew about dialysis patients?
This is a great question. In my opinion, I don’t think that officials really and truly understand the seriousness of ESRD, and what a patient and their body truly go through during dialysis. If they did, we wouldn’t still be fighting about the medicines, treatments or funding to find a cure. Part of this could be that a lot of us who have the disease look very normal, and unless asked, could pass for a typical healthy person. Still, we need their help in making sure that things that we lobby for be taken seriously, and that there are people dying every day from this disease. If our elected officials would take the time to sit, listen, hear us out, they would understand that kidney disease deserves the same amount of attention as any other disease.
9. Do you have any advice for newly diagnosed kidney patients?
As crazy as this might sound, the best advice that I would give a person who has been newly diagnosed is to just calm down, don’t really stress out too much, and to begin your research ASAP!! These are all the things that I didn’t do, LOL. Find, or be referred to someone who has gone through this process and have them explain to you what exactly you need to do, the things to look out for. You can’t really understand or appreciate all that your kidneys do for your body until you’re faced with this disease. Dialysis is another monster all by itself. So just be open, don’t wait, and know your options of hemodialysis or peritoneal dialysis so that you can make the right decision that fits best with your lifestyle.
10. How does it help having a family member be part of the process?
This has had to of been one of the most important factors in the success of my walk in and through this disease. I am a double transplant recipient. After my first transplant, I nearly lost my life due to early rejection which was leaking protein in my body. As I mentioned I am a single father. While I terribly missed my son for the four months I was in the hospital, knowing that he was being cared for by my mother, and my friends who helped her with him helped me to be able to focus on the process of healing. I have very close friends that I consider to be my family, and they would take turns cooking, taking my son to school and/or appointments, and helping me to my doctor’s appointments. I’m a very proud man who wants to be able to take care of myself and solve whatever issues come my way, but I must admit that I could not have made it through everything that was going on during both of my transplants without have my family and friends as a great support system.
11. What do you wish other family members knew about kidney disease or knew about helping others?
The one thing that I know I’ve opened my family up to, which they probably would have never considered, is organ donation. It’s hard for me to answer this because I was so open with family and friends about everything that was going on with me. The physical and mental support that I received couldn’t have been any better. I was always able to voice my frustrations, problems, concerns, joys, and even letdowns to everyone, and I was never turned down or turned away by anyone. The way I’ll answer this is to say that I would like to wish that everyone’s family or support system knew and understood the uncertainty of this disease. You’re in and out of the hospital so much, and it’s very scary facing mortality. So just having a compassionate ear can make such a difference to someone who is fighting their way through kidney disease.
12. What are some interesting facts about yourself that you’d like to share?
I’ve only mentioned this 50 times in these questions, but I am the proud father of a 19-year-old young man. People always seem to be amazed at the fact that I adopted him at 2-weeks-old, but this is something that I have always known I’d so since the age of 11 or 12. Being a father has been the most rewarding thing in my life. He is my WHY, and the reason I fight every day to live my best healthy life. I’m also a music buff. I sleep, eat, clean up, shop, and drive with music always playing in the background. I also have a gospel group that performs a lot in the D.C. metro area very often. I don’t really like vegetables at all, and only started eating broccoli and asparagus after being diagnosed with ESRD. Finally, in my next life, I see myself as a trained contemporary dancer. I am enamored with the expression of the body, and the way it is able to tell a story through dance. I’m an avid “So You Think You Can Dance” watcher, and often find myself in tears watching these kids dance. I know they say that crying is not the most manly thing to do, but I get drawn in and captivated, and I can’t help it. Therefore, I’ve surmised that I’m supposed to be a contemporary dancer.