Guest post from friends
I’m sharing a couple of stories from friends that learned about after sharing that I’m donating a kidney. I found them to be informative and inspiring. Rebecca, like me, is a runner and a triathlete. Please be aware: both of these stories share a lot of medical information and difficult situations.
Navigating Life with Early-Onset Chronic Kidney Disease
by Rebecca Rogers
I was born with Vesicoureteral reflux (VUR), more commonly known as “kidney reflux,” which is caused by the abnormal formation of valves, known as ureters, between the kidney and bladder. After being hospitalized many times as a child due to kidney infections, I began developing kidney damage.
To avoid more kidney damage and the strong possibility of needing dialysis or a kidney transplant at a young age, my Urologist and parents decided that I would have ureteral reimplantation surgery when I was 8 years old. I had no idea what I was getting myself in for, and I’m glad I didn’t! It was the most uncomfortable week of my life, (but the updated version of the surgery is apparently much better). While the surgery was successful, enough kidney damage had been done to warrant a diagnosis of Chronic Kidney Disease (I), also known as CKD (I).
During high school, I ran cross country and track. In my freshman year, my primary care physician noticed high blood pressure (BP) readings, and I was required to stop running for a period of time, because systolic blood pressure rises during endurance. High blood pressure readings are generally defined as consistent readings over 130/80 (with 130 corresponding to Systolic and 80 corresponding to Diastolic measurements). Systolic blood pressure measures the pressure in your arteries when your heart beats, while Diastolic blood pressure measures the pressure in your arteries when your heart rests between beats” (source).
After wearing a 24-Hour Ambulatory Blood Pressure Monitoring Cuff (which was not fun to sleep with!), I was diagnosed with Renovascular Hypertension. This is caused by decreased arterial inflow to the kidneys, which in my case, was due to kidney damage. Since then, I’ve taken an ACE inhibitor medication daily to control hypertension and keep my kidneys healthy (ACE inhibitors work by decreasing chemicals that tighten the blood vessels). Eventually after my blood pressure was under control, I was able to return to athletics and went on to run cross country, track, and triathlons in college. I was sometimes noncompliant with taking the ACE inhibitor because I thought it made me run slower; but during the times I stopped taking it, I checked my BP and remembered why I needed it. Now, I absolutely never miss a day.
Some children with VUR do not have the corrective surgery early on, and so they develop more serious kidney damage and Renovascular Hypertension, which may go unnoticed for years. Even children or adults without VUR can develop kidney infections, which, if left untreated, can damage the kidneys. Urinary tract and kidney infections should always be taken seriously at any age. I’m happy to say that I have not had a single UTI since the surgery.
While I’m grateful to still be in CKD (I), with controlled Renovascular Hypertension, I want to share some of the difficulties and complexities of these diagnoses—especially navigating them as a child and teenager:
Negative Feedback Loop: Hypertension and kidney damage are a vicious negative feedback loop. Hypertension causes kidney damage, and kidney damage causes hypertension. Uncontrolled high blood pressure is actually the second leading cause of kidney failure (source). One of the most important ways to keep the kidneys healthy is to closely monitor blood pressure and take action if readings are high.
Denial: Despite having the results of blood pressure readings from a 24 hour monitor, (in addition to months of readings taken by my mom, who is fortunately a nurse), I was still in denial about having hypertension for many years. At that time, I had never met a teenager with hypertension. Pediatric hypertension wasn’t commonly discussed, and to my knowledge, still isn’t.
Reduced Kidney Functioning can go Unnoticed: Kidney functioning is generally initially tested using Glomerular Filtration Rate (GFR), which shows how well the kidneys are filtering blood. Chronic kidney disease is staged as follows: (source)
Stage 1: normal, greater than 90 ml per minute
Stage 2: mild, 60 to 89 ml per minute
Stage 3a: mild to moderate, 45 to 59 ml per minute
Stage 3b: moderate to severe, 30 to 44 ml per minute
Stage 4: severe, 15 to 29 ml per minute
Stage 5: failure, less than 15 ml per minute
When you have Complete Blood Count (CBC) labs done, the GFR result will generally be “>60.” or “<60.” This means that you could have a GFR of 61, and it may not be flagged; but this is nearly Stage 3a kidney disease. (GFR does fluctuate because it is based on creatinine levels which are subject to change, but a GFR of 61 would probably be a cause for concern). While I have not researched this extensively, I believe that GFRs >60 are often overlooked. If GFR is low, the next step is usually to check for the presence of protein in the urine. Every time I have my GFR checked, I am anxious that it will be below 90 ml per minute, which would warrant a Stage 2 diagnosis.
Lifestyle Changes: With CKD, it is important to avoid most painkillers, sodas, foods high in sodium, meat (though this is not hard, as a vegan), and some other foods. This is fairly dependent on the stage (I personally still eat a lot of french fries, but someone in stage 4 should probably avoid french fries). There is a lot of debate about whether high potassium food should be avoided, but this also seems to be dependent on the stage. Phosphorus is another highly debated topic. I even stopped drinking alcohol for a period of time, but it doesn’t need to be avoided entirely, as it’s processed by the liver.
Doctors’ Reactions: At the age of 29 now, I still have doctors ask if I “meant” to check off the “Hypertension” box during an appointment. Doctors have either taken the CKD1 diagnosis extremely seriously, or not seriously at all, because of my age. Many doctors and nurses are also fascinated to know the story of how I developed CKD, which makes it feel even more isolating.
Tests and Imaging: In a perfect world, I need to have my GFR taken every 6 months, and this is the same for most people with CKD. It’s also important to take blood pressure readings weekly (though admittedly I am not always great at this, especially while traveling). Over the years, I’ve also had multiple EKGs, heart and kidney ultrasounds, urinalyses, CT scans, examinations for Hypertensive Retinopathy, and other tests (oh yeah, and many catheterizations as a child—not fun!). Kidney disease does not only necessitate a nephrologist—you may need a cardiologist, urologist, ophthalmologist, primary care, and/or dietitian, among other doctors.
Blood Pressure Monitors: It’s really important to use an accurate blood pressure monitor. There are a lot of blood pressure monitors on the market. Personally, I use the Omron brand and avoid wrist cuffs (I’m sure there are good ones out there, but I don’t want to take the chance of inaccurate readings).
Stress: I’ve experienced a lot of stress about the possibility of needing a transplant one day (though I am told it’s unlikely if I maintain a healthy lifestyle).
CKD Communities: To help meet others with these conditions, I joined a subreddit for people with CKD. Unfortunately, there is a trend of users trivializing the concerns of people who are not in a later stage. However, this subreddit has been a great source of community for people having transplants or undergoing dialysis.
COVID: Finally, during the pandemic, like others, I was often concerned about the possibility of COVID impacting kidney functioning.
As I’m writing this in a coffee shop, a Selena Gomez song came on – Selena Gomez has Lupus, an autoimmune disease which can damage organs. She needed a kidney transplant in 2017 at the age of 24. Selena was lucky to have a close friend donate a kidney, but many people are not that lucky. I am so grateful for people like my friend Unny Nambudiripad, who has made the courageous decision to anonymously donate a kidney and save someone’s life.
According to the American Kidney Fund, “there are more than 106,000 people on the national transplant waiting list with 92,000 (87%) waiting for a kidney” (source). Most people wait three to five years for a kidney, but it can sometimes be longer. Moreover, “there are still an estimated twelve people dying each day without the opportunity to receive a life-saving transplant” (source). Many people also do not realize that living kidney donor transplants last significantly longer than deceased donor transplants; however, “on average, approximately 70 in 100 kidney transplants are from deceased donors” (source). Most living transplants come from relatives, rather than anonymous donors, despite the fact that living kidney donors can expect to live full, healthy lives (source).
While my CKD is not severe, it has changed the perspective through which I view life. It’s cliché, but having damaged organs has helped me stop taking my life and health for granted. I’m also reminded of it on a daily basis, as I check the sodium content of most foods I purchase (the large scar on my lower abdomen is also a daily reminder!). Having now met many people in later stages, I am so thankful that my CKD has not progressed more and that I made the decision to become a vegetarian at a young age, and then vegan 7 years ago. I made these decisions because of animal welfare concerns, but I had no idea how important it was for me to follow a plant-based diet. I’ve now heard many stories about people improving their kidney functioning and blood pressure by switching to a plant-based diet.
I’m also grateful that my parents have encouraged me to be an athlete throughout my life. Fitness is another important way to reduce blood pressure and protect the kidneys. I played many sports throughout my childhood, but my entry into distance running came about when I was kicked off my middle school basketball team: my coach told me I was not a good basketball player, but that I was a fast runner and should focus on running instead. He connected me with the high school cross country coach, and I have been running ever since. I ran cross country and track for two years at Mount Holyoke College and transferred to The University of Arizona, where I walked onto the cross country team for a season, then joined the university’s TriCats Triathlon Team. I continued running more casually after college, but I plan to train for some half marathons in 2024!
I want to end on a note of gratitude for anyone who is planning to or is thinking about anonymously donating a kidney: thank you so much for your courage and kindness.
And here’s my friend Mikhala. I imagine this could be given a similar title as the previous essay:
I’ve had dodgy urology for as long as I can remember. At barely four, I remember being threatened with catheterization if I didn’t improve. I didn’t understand at the time what catheterization entailed, but I knew that it involved grumpy doctors going near an area of my body I had been taught to hide and protect. My modesty motivated me that day, and I dodged the urethral bullet, but then as now, I’m never in the clear for long.
No bubble baths, bath bombs, or bath salts.
No jumpsuits, leotards, or onesies.
Limit your citrus, limit your soy, limit your spice.
No caffeine! (“Excuse me, may I ask what brand of root beer it is? I can’t have Barqs.”)
No swimming in lakes or ponds—yes, even at parties. (“Why didn’t you bring a bathing suit? You read the invitation, right?”)
My life has long been restricted by my urology, and while I’m still more able-bodied than many, my experience has shaped me in curious ways. I remember as a middle schooler when my mom would drive us to the zoo, the ‘50s diner, or the eye doctor, and we’d pass by a DaVita (a nationwide chain of dialysis centers). More than once I looked out the window in silence as we zoomed by, wondering if one day it would be my turn.
Yes, I wager I’ve been generally more aware of kidneys than my peers. Give me a MadLib, and there’s as good a chance I’d write “ureters” for a common noun as I would “clipboard” or “feldspar.” What teenager devotes brainspace to blood filtration? What college kid geeks out over clear urine? Chronic illness rewrites normalcy. When my grandmother’s classmate entered kidney failure not long after their 70th class reunion, I couldn’t help but envy him: his served him faithfully for ninety years before giving up the ghost.
My own journey came to a head in 2018. My partner and I took a mutual friend under our wing, and the summer was our oyster… until I started seeing blood in the toilet. So much for adventures. “Sorry, I can’t pick you up at 11 after all. I’m peeing blood again and need to seek medical attention.” “Sorry, I can’t go to the beach like we planned. I’m not supposed to be in direct sunlight for long periods of time.” Truth be told, I think it scared my friends more than it scared me; hematuria seemed right at home given my history, but everyone I mentioned it to in conversation went white as sheets and insisted that I see a doctor. After a string of painful and feverish bladder infections had urgent care staff recognizing me by sight, I finally caved and sought out a urologist at age 23.
Not long after my first kidney ultrasound, I started cracking little jokes to my closest friends about needing new kidneys. Their unfailing response? “Well you can’t have mine.” My beloveds, whom I know to be highly empathetic individuals, clam up and retreat into self-preservation when the topic of kidney donation arises. That’s what makes Unny’s choice special in my eyes. I’m grateful for those who are bold enough to give—literally. The anonymity factor makes it all the more astounding. It’s difficult enough for people to muster the will to donate to someone they know and cherish; donating to save someone unknown is downright radical. And I love me some radicals.