“I really beat the odds.” One Marymount Alumna’s Story of Triumph Over Rare Kidney Disease

By Erin Munsterman

A knapsack, a bus ticket, and thirty dollars for a roundtrip home. This was all Marymount University alumna, Jenyl Moody, had in her possession the day she decided to leave Pennsylvania for D.C. in 2007, and she’s been there ever since.

Moody had received her MBA, but desired furthering her education. She applied to Marymount University, where she later attended and received a Master’s degree in Information Technology and a Master’s in Healthcare Management, all while holding a notable GPA of 3.9. However, no one would have foreseen the events that would soon unfold, the events that would alter her life entirely.

Moody graduated from Penn State in 2006, but wasn’t able to find a job in Pennsylvania. So she relocated to D.C in hopes of doing so. Three months later, she had a job. And then six months later, she had a full time job.

“And I haven’t stopped since,” she states.

“I got sick around 2009,” Moody says, “and no one really knew what was wrong with me, I didn’t know what was wrong with me. All I knew was that I woke up and it was so horrible… I couldn’t figure out what was going on.”

Moody rushed to the Emergency Room that day, where a multitude of tests were conducted, until she received the news that would instantly transform her world – her kidney function was fading. Moody was diagnosed with Collapsing FSGS, but by the time they could comprehend what was happening, her kidney function had already dropped from one hundred percent to fifty percent.

“It’s a rare kidney disease,” she clarifies, “not many people know of it… To explain it in layman’s terms, it basically means that your veins in the inside of your kidney, they scleros, so they shrivel up and they no longer work. That was happening to me, the nerves in my kidneys were no longer functioning, they were shriveling up which allowed for none of the passages for digesting certain foods and things like that to actually work in my system.”

During this time, Moody had been employed full time at an elite consulting firm. The kidney failure had taken over her life and body, which eventually commenced to swiftly deteriorate and become nonfunctional, it obligated her to visit doctors daily.

However, her disease took a turn for the worse. A few years ago, her kidney completely went erratic. There was excessive pressure and it’s functioning had gone from its preceding fifty percent level to fifteen percent.

“I really beat the odds,” she adds.

Fifteen percent functioning indicates that both kidneys are functioning at fifteen percent and are no longer able to process and would, in due course, force her to go on dialysis.

“I was extremely lucky, ‘cause my brother was going to give me his kidney and it was Christmas and I was so happy.”

Nevertheless, three days later it was revealed that her brother would be incapable of donating his kidney due to Intermediate Hypertension, meaning that he possesses a high blood pressure while under stress and may possibly need a kidney transplant himself later in life.

“So it was a sad Christmas,” she says. “But I was coming to the end of my program at Marymount and I met so many great people and so many good supporters and so many good professors that were really working with me to get my goal and my dream of completing my degrees.”

Two months later, while her wife was preparing herself to receive testing that would tell if she was qualified or not to donate her own kidney, the phone rang. Not knowing who it was, Moody sent the call to voicemail. It rang for a second time, to which she answered and heard the words she had been waiting so long to hear- a kidney was waiting for her.

She couldn’t believe it.

“You’re lying,” she retorted with a sense of bliss, “I’ve been waiting ten years for a new kidney, and you’re saying I have a kidney?”

Not only did the hospital have a kidney, they had a perfect match. Moody made her way to the hospital, got prepped, and by midnight, was in the operating room receiving her new kidney. She was the first kidney transplant at George Washington University, and her kidneys are now functioning around a sixty percent rate, a rate to where she doesn’t require dialysis.

“That was one of the lucky things that was for me because when I dropped that low and my brother wasn’t able to give me the transplant, I needed to go on dialysis… and it just got to the point where I needed to put school on hold and I needed to put work on hold because I, you know, had to figure out how to live with this pretty rare disease.”

It has now been two years since her transplant and Moody is doing well and sees doctors on a biweekly basis. Over the past two years, she endured a few kidney rejections, meaning it was not taking suitably with her immune system. Her disease had attacked the new kidney, but the doctors were able to utilize blood transfusions as well as plasma infusions to defend it.

Although her disease had gotten in the way of her life, it only fueled her passion for school and her job. She finished her degree at Marymount and applied to George Washington University’s PhD program in Engineering. She got in.

Currently in her third semester at GWU, she maintains a 3.73 GPA and plans to graduate in the fall of 2018. Despite the many barriers Moody’s overcome, she has been able to maintain a full-time job with Accenture, a leading consultant firm, and go to school full time as well as managing her health apprehensions. She is presently back at work as a Senior Consultant where she is able to use her degree from Marymount.

“Even though this disease has made my life more difficult. It made my life more rich… I’m more understanding of people and their realities and that’s why that even though I’ve gotten this disease, I think that it’s more of a blessing than a bad thing.”

Moody additionally comments on how she believes that enduring this experience has reformed her for the better.

“It’s made me kind, I think that’s the best way to describe it. I wasn’t as kind and as forgiving as before and now I feel that I am more kind to situations and I forgive easily. I feel stronger as a human being – there isn’t anything else I can’t do in life. It doesn’t matter that I’m pushing myself to the limit because I’ve become so willed. I have a strong will now.”

Her family assisted her in more ways than she could ever envision, helping her with anything from driving four hours every weekend to help clean and make meals to sleeping alongside her in her room, aware of her fear of being unaccompanied in hospitals overnight. She trusts that she wouldn’t have been able to make it out as well if it weren’t for them.

“I’ve seen a lot of people in this situation, not being able to make it out and ending up on social security disability and living in poverty and not being able to circumvent their situation.”

She also claims that “people don’t realize how important mental health is… seeing a psychiatrist and really talking to them about my issues and being able to help me sort my feelings out as well as talking to other survivors have really helped me get through this process.”

Moody wants to use her Healthcare Management degree to service the healthcare industry and assist those who also may be suffering to manage and to, either directly or indirectly, make their transition easier. She further wanted to bring up an issue vital to her and to a lot of people – the fact that when a patient is conversing with doctors, some doctors have the tendency to display disrespect.

“They tend to dismiss you and think that you’re not as smart as they are and when you find a doctor who’s willing to talk to you like a human being, it is very rare.”

The one thing that she desires to have been different throughout the course of her journey was the process of attaining the transplant. She wants to make sure that others suffering from disease do not have the experience she did.

She said most hospitals “don’t recognize the fact that a lot of people in the black community won’t donate their kidney, so there are a lot less kidneys being donated to African Americans and they are unable to get kidneys as frequently. The one thing I would change is doing more activism work in getting them to realize that donating a kidney would help another individual especially in this particular race because of it not being so prevalent.”

She also opens up on her experience with racism in her effort to receive a transplant prior to GW.

“I experienced racism that I’ve never ever experienced before. The process at a lot of hospitals are embedded in who you know and your appearance. If you’re not in the right mind frame or financial bracket, then you are less likely to get a kidney. I know it’s sad and off-putting, but it’s the truth. It’s sad that I have to put on Coach shoes and some Michael Kors jeans and a Banana Republic shirt to get recognized. I should be able to put on my Kmart shoes and jeans and my Walmart shirt and get a transplant, but it’s not true. The doctors won’t respect you if you don’t look like you come from money. And when you’re sick, you can’t even really dress yourself.”

Moody has experienced this type of prejudice over and over again, and doesn’t want anyone else suffering to have to go through similar tribulations. She also said that she wants to make it aware to people that you can handle challenges that are thrown your way and still better yourself. Even if you’re in despair, with the help of your friends and family there is nothing you can’t accomplish. She, moreover, wants to give back to the community and would love it if anyone would want to speak with her.

When asked what piece of advice she might have for those undergoing similar struggles or struggles of any kind in their life, she only has two words – keep going.

“Keep going. Don’t give up,” she says. “The more you push forward the better the outcome is going to be for you. I’ve seen a lot of people give up and they get themselves into this situation where they’re grief stricken and they’re unmotivated and they can’t function and they become the lepers of society.”