Ramien Pierre

LIVING Kidney DONOR NEEDED

I'm a 52 year-old, goofy, gay man married to the love of my life, lifelong educator, and helper at heart who has end-stage renal disease. For the last 20 years, my doctors and I have worked to slow the progression of my disease while maximizing my quality of life. A few months ago, I started home hemodialysis, and it has been a game-changer for me. As I move into this next phase of my health journey, I am looking for a live kidney donor to help me.

My story starts with my mother. 23 years ago, I was being screened to be a kidney donor for her. At the time I felt physically fine, but learned I couldn’t donate a kidney to my mother, because my own kidneys were “small and sluggish.”

Before acceptance, there were french fries
To be honest, I didn’t handle the pivot from being a prospective kidney donor to someone living with kidney disease as well I might have hoped. I minimized the seriousness of my condition for a few years. Even after I made the decision to put on my "big boy pants", it was a two-decade long process of getting to acceptance; I’m not sure I would have made it without the great support I received from my care team, family, friends and therapist. And french fries; they were my comfort food of choice after disappointing doctor appointments.

Working was my refuge… until it wasn’t
I’ve always been a hard worker. I started my career as a middle-school history teacher, and now I work at a not-for-profit whose mission is to put Black corporate professionals in C-Suite jobs at Fortune 1000 companies. In between I’ve worked as an assistant dean at a boarding school and a liberal arts college. And I’ve helped train federal employees, performing arts managers, and rocket engineers. When colleagues, friends or professors would comment on my work ethic, I would tell them that I loved working, because I loved helping people.

But to be honest (again), a big part of my love of hard work was the fact that when I was working, I wasn’t thinking about having kidney disease. For me, work was a refuge from the fear and uncertainty of my condition… until it wasn’t.

Over time working got harder. I didn’t have my usual amount of energy and nor my typical mental sharpness. And then I started noticing changes in my non-work life. I had trouble sleeping, a declining appetite and frequent nausea. During the pandemic I noticed it was even more difficult to be my usually charming and optimistic self.

I didn’t realize how bad I felt until 50 yards felt like a mile
And then I noticed that I was struggling physically with things that I loved and took for granted. Take swimming, for example. I learned to swim as an adult. My husband and I were planning a long trip to Indonesia, and I wanted to be able to swim with him in the ocean. Before the pandemic, I made great progress and even after the Indonesian trip would continue swimming at my local gym. But during the pandemic, I noticed I couldn’t swim even one lap at the pool without needing to take a break.

And then one day I struggled to walk the 50 yards from my parked car to the front door of my local supermarket. That was the day I realized I needed to do something different. It was time for dialysis

Home hemodialysis was the answer
A few months ago I started dialysis and it has been a game-changer. I selected home hemodialysis, because I wanted to have the control and flexibility to keep working and traveling. I am so glad that I did.

First, until I started dialysis, I didn’t realize just how bad I had been feeling. Since being on dialysis, my appetite has come back, my sleep has improved, and my energy has increased. I’m out of shape, but I at least I don’t have the “shaky and frail” feeling that I hadn’t even noticed I’d been living with for the last few years. One day recently, I was talking to my husband, when I noticed him staring at me with a strange smile on his face. I asked him why was he looking at me like that, and he said, “It’s just so good to see you with this much energy. I’m so happy you’re feeling better.”

Second, even though home hemodialysis required a pretty intense six weeks of training with my doctor and clinic nurses on how to operate the equipment and manage my own care, I figured it was one of those “the way out, is through” situations. At times I felt frustrated, overwhelmed, confused and depressed, but I knew those feelings would pass. I’m proud to say that on most days I feel firmly whelmed about home hemodialysis. I am crushing it!

Looking ahead, I recognize I have a lot of non-work things to live for including:
1. Learning to speak Spanish and play the ukulele so I can surprise-serenade my husband a Marc Anthony medley during an anniversary trip/sabbatical we are planning to Medellin, Columbia

2. Returning to weightlifting and club volleyball so that I have productive outlets for neurotic energy… and learn how to “people” again in a structured way, and dying of old age… for obvious reasons

I’m doing my best to figure out how I will accomplish all of those things.

But I can’t do it alone.

I need your help.

Look, I understand how it feels to even consider giving someone a kidney. When I was being screened to be a kidney donor, I was excited by the possibility that my efforts would make a life-changing improvement in someone’s life. I was also anxious about all the medical “what if”s. Combine that with all the urban legends I’d heard growing up about how Black Americans shouldn’t trust the medical establishment, and it’s a wonder I didn’t chicken out.

But in the end, I am so glad I stuck with the kidney donation screening process. Even though it didn’t end with what I wanted—me donating a kidney to my mother—being screened to be a kidney donor helped me learn that my own kidney health was in danger.

There are three ways you can help:

1. You can be screened to be a living donor for me. I’m on a cadaver donor list, but it doesn’t seem right to live my life waiting for someone else’s to end. Even if you and I are not a match, you might be able to donate to someone else. And if we are a match, you are under no obligation to donate to me. I won’t even know you’re being screened, since the whole screening process is anonymous.

2. You can spread the word about my need for a living donor or about organ donation in general. There are currently 120,000 people waiting for a lifesaving organ transplant in the U.S. Of these, 100,000 await kidney transplants. My mother waited four years before she received a kidney donation.

3. You can send me good vibes. I don’t know what your spiritual practice is, but I accept all well wishes, good vibes, prayers, and positive thoughts… and french fries…Amen.

Thank you for taking the time to read this.

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