Ambassador spotlight: LeighAnn Saylor and Marie Drain
What made you want to become an American Kidney Fund (AKF) Ambassador?
Marie: I wanted to become an Ambassador because I know how difficult this walk has been for our family. If there is anything I can do to make it easier for someone else, I am happy to do that. My husband, Brian, has a hereditary kidney disease, which has created a weight on both of us knowing that one day he would need a transplant. When he became ill, dialysis was necessary and that was heartbreaking, as it robs people of the freedom and strength they used to have. Then there is the wait for a transplant. My husband’s transplant was a gift, even with the complications that came with it. We are forever grateful for the gift given to him to have another chance at living. There is a need out there for people who have gone on this journey to help others who are in the trenches now.
LeighAnn: I wanted to become an Ambassador because my husband, Michael, is an eight-year living donor transplant recipient.
How has being an Ambassador helped you?
Marie: Being an Ambassador has helped me make my voice heard. Ambassadors let lawmakers know what we need as patients and caregivers, and bring change so other people on this journey will have the things they need to make it through just a little easier.
LeighAnn: Being an Ambassador has given me a platform to turn the worst days of my life into something positive. It is my lifelong mission to eradicate the waiting list for kidney transplants.
What have you learned from being an Ambassador?
Marie: As an Ambassador I have learned that as different as our journeys are, there are always commonalities. In these commonalities is where we can find strength and a unified voice letting lawmakers know what changes need to be made to help everyone fight this horrible disease.
LeighAnn: I learn something new with every patient I work with. However, I have learned so many things about the different types of kidney diseases and so many of the medications. Also, everything we ingest can play a part in making kidney disease manageable, which is why resources like AKF’s Kidney Kitchen® are great!
Why should others become Ambassadors?
Marie: It would be great for others who have gone through kidney disease or have watched family and friends fight it to step up and become Ambassadors because there is strength in numbers. The more we make our voices heard, the harder it is for others to dismiss the needs of kidney patients. Ambassadors bring understanding, since this illness is one that is not always outwardly seen.
LeighAnn : Kidney disease caregivers, as well as kidney patients and living donors, have a responsibility to tell our stories of success and share with the others on the journey as it gives them so much hope.
How would you like to stay connected to other Ambassadors?
Marie: I would love to stay connected with other Ambassadors via AKF’s private Facebook group for Ambassadors. I think this platform allows us to connect and share ways that we can all spread the word. It can also help us organize larger campaigns to raise more awareness about the need for living kidney donors.
LeighAnn : The monthly Zoom meetings for Ambassadors are a great way to touch base and make sure we are all aware of the goals for the upcoming month.
What is something you’ve learned about kidney disease and dialysis that you wish you knew a lot sooner?
Marie: You can preemptively donate a kidney on behalf of a loved one through a voucher program. Many transplant centers offer these programs, but not all of them discuss it with patients. If I had known this, I would have donated in advance so my husband would not have had to suffer through two years of dialysis. There were many obstacles we faced. Who would care for our son if we both had surgery at the same time? Who would be my husband’s caregiver while I was recovering from surgery, and who would be my caregiver during recovery? If this option had been discussed with me, I could have donated my kidney and then recovered before he needed to have surgery. There are things that can be done before people have to go on dialysis to try to find a living organ donor, like spreading the word and raising awareness.
LeighAnn : I wish I had known many years ago just how important it is to put on my doctor’s file that I have kidney disease in my family. I knew that my paternal grandfather died of complications from three years on dialysis and had suffered from kidney disease for years. I was uneducated about dialysis. I assumed that my grandfather went in for a couple of shots four days a week, which I know now is not the case.
What do you wish elected officials knew about people who are on dialysis?
Marie : I wish elected officials understood that dialysis patients are not lazy and that there needs to be more things in place to make their lives easier. The paperwork to be able to get Social Security disability is difficult, and understanding health insurance and how Medicare works with your insurance is very confusing.
LeighAnn : Everything! They know very little about the many obstacles patients and caregivers face.
Do you have any advice for people who have been newly diagnosed with kidney disease?
Marie: My advice for a newly diagnosed patient would be to read, and read a lot. Learn everything you can about your condition, understand your lab values and what they mean for you, and definitely reach out to organizations like the AKF for assistance in understanding how they can help you during this journey. You can also ask your dialysis clinic or nephrologist about local support groups in your area.
LeighAnn : I suggest that newly diagnosed patients start educating themselves about kidney disease and advocate for themselves. Depending on how far advanced the disease is, I advise finding second opinions. Go to top medical centers’ websites and read about their kidney transplant programs, how progressive they are, and what the wait time is on a kidney matching their blood type. If they have time before they are ready for dialysis, then they have the time to get their story out everywhere to start their search for a living donor. A transplant from a living donor is usually the best treatment option for people.
How does it help having a family member be part of the process?
Marie: Having a family member be part of the process is crucial in my opinion, as this person can understand you better and allow you to be vulnerable when others don't understand how hard it is for you and don't always understand why you are tired or have to stop working. You need someone you can let go with and lay out how you feel. I think this is very important for mental health during this process.
LeighAnn : It’s crucial for people with kidney disease to have a family member go through the entire process with them. First of all, it is a requirement to qualify for a transplant. There is a lot to take in and learn in the beginning, and patients need someone else who can be educated about what they need to do, especially during and after transplant while patients need help taking care of themselves.
What are some interesting facts about yourself that you’d like to share?
Marie : I am not a medical professional by trade, but that has not stopped me from being passionate about learning about kidney disease, finding ways to better understand what is going on, and asking questions to learn how I can assist my husband and make this journey easier for him. I do everything I can to share what I have learned with others. I want to continue to grow in my knowledge and push for change for everyone fighting this fight. I want to find a solution for better patient care and better support for caregivers as they are so often overlooked in this journey. Being involved in advocating for my husband and others has made me think about going back to school to seek a degree in health care, which would allow me to better help from the inside.
I was a successful realtor until 2008, when the economy crashed. I love to sew and crochet, and make wreaths, ring bearer pillows, garters for brides and anything else I can think of. I have gotten back into needlepoint, too. I am making ornaments for all my kids and grandchildren to remember me. I was a competitive dancer and I dove and swam competitively growing up. I am a huge Kentucky Wildcat basketball fan! Go Cats!