1.) What is your age? - 27
2.) Do you have children or grandchildren? - No
3.) How long have you been married? - I’m getting married in October to my fiancé Tyler who I’ve been with for 6 years
4.) Are you on Dialysis Currently? - Yes
5.) What type of Dialysis do you currently conduct? - In center Hemodialysis
6.) What emotional toll has Kidney Failure had on you? - Having kidney failure is hard to explain. I often get well you look great you don’t look sick. Although it’s nice to hear it’s hard to explain to people the constant things you go through daily as part of having a chronic illness. I try to make the best out of the hand I was dealt but I hate being sick. I’m always tired or often find myself sick. Dialysis in itself is draining. After dialysis, normal activities seem like they take three times as much effort as they should. My life really does have to revolve around how each dialysis treatment goes.
7.) If you could talk to someone who is interested in donating to you, what would you say? - This is something I've always struggled with this. I'm never sure what to say to someone. First the fact that they are even considering donating is amazing and they could never understand how much it could mean to someone. Donation can change people’s lives.
8.) What is your blood type? - O negative
9.) Where are, you listed (name of Transplant Center)? - University of Maryland & Emory
10.) Once you receive your Kidney, what do you plan on doing with your future? - Well, my first goal is to start a family. I'm so excited to be getting married in October and my fiancé and I really want kids. We both are big family people and more than anything we want to be able to start one of our own. I also want to finish college and become a teacher.
I love working with kids and currently have a couple of jobs working with kids. During the day, I'm a teacher’s assistant during the day and I help in a kindergarten classroom aiding a little boy with special needs. Before and after school I work as assistant director to an after-school program called super kids. When School is closed I often work at Build a bear.
11.) What happened that caused you to need a Kidney Transplant? - They still to this day have never figured everything out. I was never really unhealthy as a kid and there is no real family history of anything like this. The summer of 2005 I got sick I was on a church retreat called centrifuge with my youth group in Tennessee. I thought I had some kind of bug because I had been sick for a few days it felt like the flu to me. Went to the err because of protocol having a fever and everything and they did bloodwork. They came back to me a few hours later saying I was in kidney failure and a bunch of my other organs had been affected. The next few days were kind of a blur. I was rushed to a children’s hospital because of my age and immediately put a port in and began dialysis. My mom and grandmom flew down to me and I stayed there in that hospital for a few months until was stable enough to be moved. Eventually, I flew in a medical transport to the university of Maryland where they ran lots of tests. They never figured out what caused my kidney failure they just ruled out what it wasn’t. After a few years on dialysis, I was lucky enough to have had a transplant in November of 2007. The transplant didn’t start working fully for almost 6months so I continued dialysis They think my transplant was never 100 percent working and that whatever disease caused me to get sick the first time was slowly attacking the transplant until it failed 3 ½ years ago, I’ve been back on dialysis since.
12.) Do you have a specific religion or religious affiliation? - I was raised in a Baptist church
13.) How has Kidney Failure/Dialysis impacted your quality of life? - Living with kidney failure it literally impacts every aspect of my life. With dialysis, it’s like having a job that you can never call out sick from or get paid from. I have to go its literally what’s keeping my body running and keeping me alive. No matter how sick your feeling or how you really wish you could hit snooze and go back to bed you have to get up and go. You can’t go on vacation without planning and schedule dialysis in usually you’ll have to pay a little extra if it’s not your home dialysis center especially if it’s out of state I can’t even simply just go to ocean city for the weekend if I can’t work in an extra dialysis session. Dialysis also limits your diet and fluid intake a lot. Fluid in the summer is had because I can only have 32oz in a twenty-four-hour time period. One thing I’m most excited about as silly as it sounds it just having no fluid limit. With dialysis fluid restrictions, I feel like I am always thirsty I can’t wait to be able to have a glass or water without measuring every sip
14.) What is the first thing that you plan to do after you have recovered from your Kidney Transplant Surgery? - Hmm, I have thought about this a lot. My fiancé and I often talk about traveling to Alaska which is somewhere we both really want to go. I think we will plan a trip and explore.
15.) Add any other information which you think may be peculiar to you and would be of interest to a potential donor. We believe in emphasizing the uniqueness of the individual. - I am never sure what to include about myself. I’m an animal lover. I have three big dogs who are treated like my furry children and go everywhere with us. We like to camp on the weekends and take are camper out every chance we get.
Tyler and I are both members of our local firehouse. I am a member of the ladies’ auxiliary and help with different fundraising events for the firehouse. I work in the kitchen during bingos and events like carnival or bull roasts. I was even the Easter bunny for our lunch with the Easter bunny event. It’s a great group of amazing woman who has helped me so much with my fundraising events they are like a second family.
I love to sit at home cuddle with my pups and read or play old Nintendo games. I just want the chance to live a more normal life with fewer days feeling exhausted and sick. Spending more time with my family and traveling without being held down by kidney failure.
At some point in the future, I’d like to be an advocate for transplant/kidney failure patients. I would love to help raise awareness for organ donation because I feel like unless you know someone going through actually needing a donation most people I’ve talked to have never given it a second thought and wouldn’t. I’d love to help just squash some of those silly myths too like if a doctor knows you’re an organ donor they wouldn’t work as hard to save you.
Allyssa did it, and so can you!
“I’m hoping to educate people about the donation process from the donor's perspective. I had so many questions about what my life would look like post donation and it was very difficult to find answers.” - Allyssa Bates
A Note From Erika:
Thank you for expressing interest and showing your support of my need for a living kidney donor.
I am listed at University of Maryland & Emory and I would like you to know that the process of living kidney donation is safe, and if you or someone you know would like to donate, then please contact my transplant center at 404-778-7777 or 855-366-7989.
For further questions, please send me a message (below). Thanks again!
Hear From An Expert:
I am a living kidney donor and this is the process I went through and my experience. I hope this video helps someone thinking about being a living kidney donor or someone that has already started the process. Please contact me with any questions and I will answer them to the best of my ability.
“If it can help someone, my goodness yes, do it. What’s the downside?” - Marc (Living Kidney Donor)
Marc is a pragmatic man. A former venture capitalist and the current executive vice president of the Steadman Hawkins Research Foundation, Marc didn’t get where he is today by letting emotion rule the day. To Marc, life is about analyzing the facts and making a decision accordingly. Nothing more. “But, there are times one has to say, ‘What the heck? Go for it,’” he says.
So when his older brother needed a kidney, Marc gave him one, and he did it without a ton of emotion or debate.
“If you see someone standing in front of a dangerous situation, you do something to stop impending disaster,” Marc said matter-of-factly. “It’s what we’re supposed to do.”
Marc’s older brother, Alexander, was diagnosed with kidney disease before he was old enough to walk. Back then, the doctors told Alexander’s parents he probably wouldn’t live to enter kindergarten. But he did. Then the doctors said he wouldn’t live to see his 10th birthday. But he did.
The ominous predictions continued, but his will to live always won out. As medications advanced, Alexander was able to control his disease without dialysis. As children, Alexander’s three brothers probably didn’t know that Alexander’s health—even his ability to live one year longer—was so precarious. “I don’t think that we were ever fully aware of that. We just knew our brother was sick,” Marc recalled.
When Marc was about 12, he remembers telling his brother he would give him a kidney if he ever needed one. Thirty-two years later, in August 1996, Alexander took him up on that offer.
By now Alexander’s kidneys had deteriorated to the point where it was clear he might not survive without a new kidney. Marc immediately asked to be tested to see if he would be a match.
“It was just a no-brainer,” Marc said. Even back then, he didn’t really see it as that big of a deal.
“This is just one of the things I’ve got going on in the next couple of weeks,” Marc recalled thinking. “I’ve got meetings, a new business venture, a new home and other things I’m doing as well.”
Marc was a match—which he always sensed he would be—and the surgery was scheduled. Before the operation, Marc was in great physical health, and his brother obviously wasn’t. For a short time, the surgery flip-flopped that. Now Marc was recovering from major surgery, but Alexander was immediately feeling better because he had a new kidney that was doing its job. But that didn’t last.
About six months after the surgery, Alexander developed complications with one of his medications, and began to have some rejection reactions. The doctors were advising that he get rid of the donated kidney and go on dialysis. He called Marc and asked for his opinion. It was his kidney, after all.
“It’s yours now. You can do what you want with it,” Marc recalled telling his brother. Together they assessed different treatment options that could be done while preserving the donated kidney. Ultimately, Alexander’s condition improved. That was nearly 13 years ago. Today, Alexander is retired and living with his wife in Florida.
Marc said he never really suffered any effects as a result of donating one kidney. An avid bicyclist and skier before and after surgery, he says nothing has changed in his life. Marc doesn’t think too often about his choice to give his brother a kidney. Occasionally, he’s reminded by the scar, but even in retrospect, the decision was simple. And he hopes others will consider doing the same.
Frequently Asked Questions:
Who can be a donor?
To qualify as a living donor, an individual must be in good health, free from any serious medical problems and between the ages of 21 and 60.
What are the risks involved?
Donating a kidney does not have any long-term effect on health. Donors may experience a slight rise in blood pressure and a small amount of excess protein in the urine following surgery. There is no greater risk of developing kidney failure after donating at kidney than anyone in the general population.
Are there activities that I will not be able to do in the future if I choose to donate a kidney?
In general, donating a kidney does not have any long-term effect on health. Some restrictions do apply following donor surgery, including reducing or eliminating the use of NSAIDS and avoiding any activity that may cause injury to the surgical area.
Does the evaluation process have to be completed at Penn?
The entire evaluation process is completed at Penn; however, if the prospective donor lives at a distance, arrangements can be made for some of the initial screening to be done at the donor's location.
Who makes the final decision on potential donors?
Based on the evaluation results, the Transplant team (comprised of nephrologists, nurses, social workers, dieticians and other transplant specialists) decides whether or not to proceed with a living donor kidney transplant as the best therapeutic option.
Who pays for the donor's medical expenses?
The recipient's insurance covers all of the donor's evaluation and hospitalization costs; however, it does not cover lost income, transportation costs or personal expenses. The transplant financial advisor reviews the potential donor/recipient procedures and associated costs carefully prior to the evaluation.
How long will I be in the hospital?
Most donors remain in the hospital for two to three days.
What is the recovery process like?
Most kidney donors resume normal activities four to six weeks after surgery. Donors are not able to drive for three to four weeks after discharge and are not permitted to lift heavy objects. You may need assistance with daily living activities during this time.
How long will I be out of work?
Depending on the nature of the work, donors typically return to work between 10 days and two weeks.
What happens if I decide not to become a living liver donor?
At any point, for any reason, the evaluation process can be stopped. The recipient will remain active on the transplant list and is free to find another potential living donor.
Chief Medical Officer (United Network for Organ Sharing) Dr. David Klassen (Nephrologist) said in a Huffington Post article, "I’ve also witnessed the results of the severe organ shortage in this country. Too often I’ve lost patients because the organ they needed did not come in time. Too many lives cut short. Too many dreams unlived." The following are a few very sobering stats which Chronic Kidney Disease and Dialysis patients should share as well as their loved ones:
90,000 - The number of Dialysis patients that die every year according to Renal and Urology News.
121,076 - The number of people currently waiting for a lifesaving organ in the United States, as reported by the United Network for Organ Sharing.
100,269 - The number of patients awaiting a Kidney Transplant specifically. This suggests that approximately 80.9% of the entire organ transplant waiting list is made of individuals in need of a kidney. It is important to note that living kidney donation is very safe and if found to be a match, a donor would undergo a rigorous health evaluation before donating to ensure good long-term health outcomes.
22 - The number of people who die every single day, waiting for a transplant.
4,500 - The number of Chronic Kidney Disease patients that die every year waiting for a kidney transplant, as noted by the Living Kidney Donor Network.
6 - The number of people added to the transplant wait list every hour, reported by Huffington Post.
0 (zero) - The number of major religions that are against their members donating an organ. All major organized religions in the United States are favorable of organ and tissue donation and most likely consider it an act of charity.
Take A Moment To Learn What A Difference You Could Make:
The Need For Living Kidney Donors
“There are about 90,000 people waiting for kidney transplants in the United States,” says Dr. Gibney. “There are about 14,000 kidney transplants a year. Each year, more people are in need of organs and get added to that list.
So that’s one of the things that makes living donation so important is that there’s a fairly limited supply of organs. If there are friends or family members who can give, that can save lives and really extend people’s lives by years and years.”
If you would like to share Erika's story via your publication, then please send a direct message below.