Life With Louise: A Kidney Transplant (Love) Story
There are more than 93,000 people on the kidney transplant waiting list.
This is our story.
I found out my mother was sick again by accident. She asked for help with her iPad and as I was closing her apps, I saw “Biopsy” logged in her calendar. It caught me by surprise and an old, familiar knot formed in my stomach. Had it come back? I quickly closed her calendar and said nothing to her. I made a mental note to call my sister, Kristen, and talk to her about it.
By all outward appearances, our mother, Jacki, was happy and healthy … so what was going on? I tried to be nonchalant. Pushing away my frustration and hurt, I fought my instinct to ask and decided to let her keep her secret. At least for a little while longer.
But I didn’t have to wait long. The biopsy confirmed her suspicion and it was awful news: her kidneys were failing again.
Back in the mid-1990s, my mother decided to redo our early 1970s kitchen. The dark brown cabinets and golden formica countertops with matching paisley linoleum had to go; the setup was replaced with cabinets painted in a rustic French blue with distress marks, faux granite formica countertops in a color scheme called “Butternut Squash,” and new laminate cherry wood floors. When it was finished, it was gorgeous — my mother being equal parts Bob Villa and Martha Stewart.
One of the side projects involved refinishing an antique washstand, an heirloom from her grandfather. As some of the dull green paint had begun to flake off, she realized there was beautiful walnut wood underneath its stale avocado veneer. She purchased an extremely potent paint remover, opened every window, turned on the ceiling fan, and set to work.
The next morning, she was vomiting profusely and spiking a fever. Her cheeks were flushed and pink; her joints, visibly swollen, ached with every moment. We weren’t exactly sure what was going on. Perhaps it was some kind of allergic response? Within a few days, she seemed to return to normal. The kitchen was finished and the washstand was returned to its stunning glory. Life in our house proceeded as usual.
But it wasn’t.
For my mother, something was wrong and, as a trained nurse, she knew it. When she went to the doctor, the test results showed there was significant damage to her kidneys. What followed next, over the course of several months, was a mind-wrecking tailspin: an onset of severe diabetes, renal failure, steroids, total hair loss, constant nausea, weight gain, and a long list of other indignities and complications.
On December 26, 1996, she went for her first kidney biopsy.
A few days later, she came home from work, took off of her wig, and laid her head in my lap. I started to massage her bare scalp while I finally worked up the nerve to ask her if she knew anything yet. Her blue eyes were steady, but full of things I couldn’t yet read. She said the doctors told her they were running out of ideas. She closed her eyes. My fingers kept moving in small, slow circles where her once dark hair, full of tight curls and hairspray, now gave way to a barren landscape of yellow skin and red bumps. She took a deep breath and let out a sigh that froze me, “They say I may likely die from this.”
I was 17.
Something changed within me during those days. Every morning, I watched her dress for work, do her make-up, put on her wig, and head off to a full-time job at the local hospital. In the evenings, she cooked dinner, paid the bills, straightened up the house, and helped us with homework. She even stood in as coach for my little sister’s softball team upon learning the girls had no one at the helm. Always pushing forward and refusing to stop. Sympathy was unacceptable to her. Yet through her silent suffering, she nurtured us and raised us without complaining and without letting her guard down for fear we’d glimpse the truth about her condition and be afraid.
In truth, she was afraid. Although she wasn’t yet at the point of dialysis, the drug treatments were causing as many side-effects and complications as they were helping, if they worked at all. Her blood sugars hit toxic levels. Lumps burgeoned from her body. She wasn’t getting better, and she knew it.
Because of her medical background and because of her naturally tenacious spirit, she requested to be seen at Johns Hopkins. She was accepted into a kidney study program and spent a few nights in the hospital there. Eventually, the team landed on a positive treatment and halted the plummeting of her renal failure. The damage was done, however, and she was left with about 50% kidney function. She worked hard to control the diabetes and weight gain, a lasting effect of massive amounts of daily prednisone.
And it worked for about 14 years.
In February 2013, upon returning from a vacation in Curacao, my mother went for a routine visit with her kidney doctor who promptly informed her that her recent lab results were concerning. Old familiar thoughts of mortality and sickness kicked up long settled dust. She worried about her daughters and being sick as a single woman. She had beaten it once. Could she do it again?
The new biopsy revealed a new diagnosis: Focal Segmental Glomerulosclerosis or FSGS. This rare disease attacks the filters in the kidneys, damaging and scarring the glomeruli, which causes the kidneys to fail. As the weeks turned to months, the lab results only worsened.
That summer of 2013, at the suggestion of her doctor, she tried a drug called Acthar. Prescribed for anti-inflammation, the drug cost a staggering $28,000.00 per vial. Each vial contained about six doses. My sister and I were suffused with feelings of anger, helplessness, and outrage. After only a few rounds of the drug, however, her condition rapidly deteriorated. Her stomach swelled with edema; her skin became too sensitive to touch; and she was in such a constant state of physical pain and nausea that her mind drifted to the darkest of places.
My mother became a statistic. A patient in renal failure. Another test tube of blood, another biohazard bottle of urine. Bad lab results followed by worse lab results. It was a Sisyphean fight of pills and insulin, failure and heartbreak. Day after day. Month after month.
We followed her lead and kept moving forward. By this time, we had already learned that if she wanted us to know the details, she’d tell us. We could pepper her with questions, but on this topic, she remained dismissive. So frequent were her repudiations that we nearly stopped asking at all, preferring instead to steal glances at her lab reports when she wasn’t looking.
On June 30, 2014, my sister joined my mother, me, and my soon-to-be-fiance Patty, on a trip to New York City to visit a kidney specialist, Dr. Gerald Appel — an expert in the field of nephrology. He was the doctor who helped NBA superstar, Alonzo Mourning, with his kidney transplant. He even treated Charles Lindbergh when he suffered with renal disease in his twilight years.
She had already gone to see a doctor in Washington, D.C. who said he didn’t think he could help. The reason: the biopsy from 1996 showed a different disease process than the 2013 biopsy, which had revealed FSGS. The findings were confusing and seemed to make for an unreadable and potentially extremely rare diagnosis.
As we sat in front of Dr. Appel, a man who looked like a real life version of Ned Flanders, we tempered our optimism with realism. He said he wanted to stave off dialysis and/or a transplant, and his suggestion was another biopsy — almost like a tie-breaker — and an altered drug therapy course. Transplant. The word echoed in my head. As I looked at the photographs of him with Alonzo Mourning on the bookshelf behind his head, all I could think was: please… please save her.
The next day, I had to put my dog down. Shiloh. A gentle golden retriever mix who I adopted shortly after graduating college in 2001. His heart finally gave out after three years of battling kidney disease. I held his head in my hands and said goodbye. When they took him from the room, I sank to my knees. My mother held me as I sobbed on the floor of the veterinarian’s office.
A few days later, the 3rd biopsy came back confirming FSGS.
It was as if I walking to a drumbeat composed of heartbreaks.
By Thanksgiving, she was getting worse. Her labs continued to degrade. Her kidney function was hovering around 28%. Every day was a battle to preserve what precious little filtering remained. The notion of dialysis and/or a transplant went from an “if” to a “when.”
On December 5, 2014, Kristen and I accompanied her to a transplant class at the University of Maryland satellite center in Easton, Maryland. To say that reality was setting in is a wild understatement. We got a crash course in dialysis and the transplant process, and we quickly learned that finding a match is no simple task. Children and siblings offer the best potential for being a living donor match, but there are a myriad of disqualifying factors. My sister and I filled out a long questionnaire and had our blood drawn to see if we were matches for her. I could see the nervousness on my sister’s face, although she did her best to hide it. Two weeks, they said, and you’ll know if you’re a match.
On December 23, 2014, a transplant nurse coordinator called me. I was at work, sitting at my desk. It was a big moment, and I desperately wanted to be a match. The thought of being unable to help her terrified me.
“You’re a match,” she said. “Actually, you’re a perfect match. You are a 6 out of 6 match.”
I could have jumped out of my skin! I cried and thanked her. She said she was calling my sister next. Kristen ended up being a 4 out of 6 match. We both felt it was like winning the lottery; we both saw the lane ahead, full of of hurdles and obstacles.
My hands trembled as I dialed my mother’s number. When she picked up, she had barely said “Hello” before I blurted it all out: I’m a match! A perfect match! We can do this! I can do this!
My jubilation was met with silence.
Then quiet sobbing.
“Stephanie, are you sure about this? Are you sure you want to do this?”
Without hesitation, I told her, “Absolutely. Yes, I want to be your donor.”
Over the holidays, we talked it over as a family: me and Patty, Kristen and Mom. We all agreed that I would start the donor testing. Kristen has a physically demanding job and I didn’t want her to endure any physical setbacks. But more so, I am the big sister. I wanted to do it for our mom and for her. Kristen wouldn’t say the words, but I could tell the idea was scary for her. But I know my sister: if I hadn’t been a match, she would have stepped up to the plate. Not a doubt in my mind.
January and February were a flurry of tests and road trips to Baltimore. The University of Maryland team had to be sure that I was going to be able to deliver a Grade A kidney. I learned, on one of those early trips, that they were going to take my left kidney. On a whim, I told my mother we should name the kidney, and since it was a left kidney, we should pick a girl’s name that starts with “L.”
Her idea: Lulu.
Mine: Louise. And that would leave me with Thelma.
She loved it, and I began sending her text messages from Louise. Every day, Louise would tell Jacki what she was doing, what she ate, and so on. Thelma and Louise, the kidneys, became part of our family. We talked of them as we talked of Grandmom Mae or Poppop Tarr. In a way, I think it was one of the most helpful things for my mom in terms of accepting the transplant and me as her living organ donor. At first, she didn’t want me to be the one. Mothers give to their kids — they don’t take from them, and especially not organs. Jacki wanted her kidney to come from someone else who she’d get to thank a later date. But that wasn’t how this was working out and we didn’t have time to wait. As one of her doctors bluntly put it, why wait for a lesser kidney? With a name, it stopped being “my kidney” or “Stephanie’s kidney” and it became it’s own entity. She was getting Louise — a new roommate who liked smooth jazz, walking on the beach, getting up early, and French country home decor. We laughed about it because we had to. Even the transplant team referred to the kidney as Louise.
Our surgery date was scheduled for March 27th, but there was a problem. No one was sure she could make it without emergency dialysis. The lead transplant surgeon was Dr. Bartlett — a rockstar in the transplantation field. He was involved in one of the first face transplants several years ago. The patient eventually ended up on the cover of GQ Magazine. Knowing that he had a living donor who was a perfect match and ready to go at a moment’s notice, Dr. Bartlett made the call: move up the surgery date and get us in the operating room as soon as possible.
On Sunday, March 8, 2015, Patty and I packed up the car and headed to Salisbury to pick up Jacki. We had to be in Baltimore by 6:00 p.m. because she and I had a pre-op items to complete: a colon cleanse for her and a full body, anti-bacterial scrub for me.
Kristen met us at the hotel, driving from Philly. Before she got there, I went over to check on our mother. Checking on her had become a habit for me, if even she was reticent to elaborate on her condition. She opened the door and I could see she was tired… nervous. She pulled a handwritten note from her suitcase and burst into tears as she handed it to me. It was a thank you card. Through her tears, she could only say this: “I just don’t know how to thank you for what you’re about to do for me.”
I pulled her to me. My fingers found their way to her head again. Small circles. Familiar and comforting. This time, though, intended to be so for both of us.
Before going to bed, I took a long hot shower. I had no idea when the next one would be. After drying off, I picked up the packages of medicated surgical towelettes and started my assignment. Then I felt it … a stinging sensation all over my skin which crescendoed into white hot burning. Oh my god. I ran to the bathroom mirror and saw red patches appearing all over my body.
Every inch of my skin — except for my face — was burning. I turned to Patty, unable to move or think beyond the immediacy of my panic. She immediately put me back in the shower and turned on a fast flow of cool water, and we tried to flush the chemicals off my skin. Nothing seemed to help. I worried the reaction might force me to go to the hospital or have the surgery cancelled. Patty kept putting cold towels on my legs and torso and arms.
That night, while I lay in bed, in a nearly delirious state, my mother was in the next room, vomiting repeatedly from the colon cleanse medication. My sister was keeping watch over her.
It was a long, sleepless night.
Our alarm went off at 4:00 a.m. The allergic reaction was gone, my skin once again normal. Patty and I dressed and met Jacki and Kristen. While waiting in the Holiday Inn Express lobby for the University of Maryland shuttle, we took a before photo. It is a stark visual: her face is full of edema while we are smiling over our anxiety.
In the shuttle, my mother, ever the early bird, beamed when she told the driver, “I’m getting a new kidney today!”
We reported to the surgical wing. It wasn’t open yet — a nearby clock read 5:00 a.m. An older gentleman and his wife soon joined us, and nervous small talk ensued. He was having open heart surgery. Although we smiled at one another, our eyes gave us away.
Finally, they called our names, and a nurse escorted my mom and I to a hospital room with two beds. We changed into the hospital gowns, shoving our clothes into large, clear bags. We put on our gowns, weird little socks with rubber grips on the soles, and surgical caps. A flurry of activity: nurses and doctors, paperwork requiring signatures, IVs, the anesthesiology team followed by the transplant team and the OR team, more questions, a couple of jokes.
It was real. It was happening.
My stomach quivered with butterflies, all moving in little, quick tornadoes. Patty counted 18 medical personnel plus the four of us. It was a like a well-rehearsed dance, a precise choreography in a medical beehive, each person knowing the previous steps and what was to follow. Kristen and Patty stood back and watched in utter amazement.
A quick explanation was given: the surgery would take approximately four hours. While they were prepping my mother, my left kidney (along with the vein, artery, and ureter) would be removed via a single port in my belly button. A little fatty spot on the outside of the kidney (discovered in pre-op testing) would be examined to ensure there weren’t any problems. Once Louise had been examined and approved, the team would take her to Jacki’s OR for transplantation to begin. I’d be closed up and sent to post-op recovery. Meanwhile, they would leave Jacki’s two original kidneys in place but Louise would find a home in her right lower pelvic region. Everyone understood the plan.
A nurse came to my bedside and injected Versed into my IV. This is the part where my memories start to get fuzzy around the edges. It was time to go. I told my mother I loved her. I’d see her soon. Patty and Kristen came to my bedside and kissed me, wishing me well.
The room swirled as they wheeled me out. Down the hall. Into the operating room. There were big round lights. White walls. I remember thanking everyone for the work they were about to do for us. And then … lights out.
Kristen and Patty waited in the University of Maryland Healing Garden. There was a woman, sprawled out on a nearby couch, coughing and hacking. Kristen joked to Patty that she was probably Patient Zero in the impending zombie apocalypse. Patty and Kristen stared at the elevators going up and down; they even counted the helium filled balloons which had collected in the skylights. They talked and laughed and even played a trivia game. By the fourth hour, there was no news.
The lady whose husband had open heart surgery was called back. He was fine and in the recovery area. Patty and Kristen looked at each other. Shouldn’t they be done by now? Around 11:30 a.m., a doctor came to talk to them. Everything was going fine, but Jacki’s part was more complicated. They kept waiting and watching as, one by one and group by group, all the other people in the Healing Garden left. They kept waiting until it was the two of them remaining.
Seven and a half hours after I was wheeled back into the OR, I was moved to the post-op recovery area. A woman called Kristen and Patty’s names. They could go back and see me, but Jacki wasn’t done yet.
I heard my name. I struggled to open my eyes. Everything was blurry. I closed my eyes. My name again. Kristen and Patty were there. I couldn’t look up or fully open my eyes. I tried to talk, but my throat felt raw. (I discovered later it was from being on a ventilator.) Kristen said all I wanted to know was one thing: did I do a good job?
I ate a few ice chips and promptly vomited on myself. The nurse put a pink puke bucket between my chin and my chest. It was shaped like a kidney. I threw up a few more times and then spilled the contents of the little vomit basin down the inside of my gown. And in and out of consciousness, I went. After seeing me, Patty and Kristen were concerned about what kind of shape Jacki was going to be in when they got to see her on the next round of visitation.
They went back to the Healing Garden and waited. Again.
Around 4:00 p.m., the lady called Patty and Kristen back. This time they could see both of us. They stopped by my room. There was a tv monitor a few inches from my face, showing beautiful shots of landscapes set to new age music. It is supposed to be a soothing things for patients, but it was more akin to being trapped in an elevator on a babbling brook with no means of escape. Kristen and Patty saw little to no improvement in me. Still groggy. Still covered in my own vomit. They decided to let me rest and head over to check on Jacki.
As they entered her room, they encountered a shocking sight: Jacki was sitting up in the bed, chatting and laughing with the nurses. Her eyes, which had been yellowing and puffy, were wide-open and bright; her skin was taking on a pinkish hue. Kristen and Patty marveled at her.
“I can see again! Everything has edges on it!”
This was a revelation for Kristen and Patty (and later me) because she never told us that she was losing her sight in the months leading up to the transplant. She also withheld the fact that she had blacked out at a traffic light and almost hit the car in front of her.
My mother complimented one nurse on her choice of jewelry. When the x-ray tech came by, she cracked jokes with him. She loudly announced how much urine Louise had already made. She told Dr. Bartlett that she loved him. Kristen and Patty shook their heads in disbelief. In just a few hours, that kidney was already making significant changes for her.
When my room was ready, they wheeled me by her room. I forced my eyes as open as I could in order to see her. All I remember is seeing her, sitting up, smiling and shouting at me, “Louise is working great!”
To which I croaked, “Oh! Love you!”
(I found out later that Louise came to life immediately and started making urine as they were stitching her up. Incredible. By the time she was in post-op, she and Louise had put out more than 2 liters of fluid.)
Kristen and Patty finally left the hospital after she was placed in a hospital room on the transplant floor. It was late and they had been awake more than 18 hours. Back at the hotel restaurant, they drank whiskey and vodka and ate deviled eggs topped with crab meat. They sat side by side at the Holiday Inn Express bar and ruminated about the day. As one recalled a funny detail, the other added a rejoinder. They were exhausted beyond measure, but found comfort in each other’s presence. No one could truly know what this whole process had been like for them, but they found that deep understanding, that appreciation for the gravity of the entire experience in each other. In that moment, they became sisters.
While Jacki and I were afforded the luxury of high quality painkillers, Kristen and Patty ordered another round of drinks and toasted our successful transplant and the first good night’s sleep in days.
Early in the morning, the dark pre-dawn hours, a nurse came in early and removed my catheter. I tried to make small talk to make it less weird which only served to make the encounter more weird. The next time I awoke, there was a group of interns standing at the foot of my bed. A doctor I’d never met asked me a few questions and told the group about my surgery.
When the sunlight hit my room, it was time for breakfast: apple juice, pancakes, and ham. It may be one of the most delicious meals I have ever eaten. I also had not eaten anything in more than 38 hours. As I ate, I surveyed my situation.
The living donor room was the most deluxe hospital room I’d ever seen: a fully stocked stainless steel mini fridge, a big basket of snacks and cookies, wood laminate floors, actual drapes, a wooden desk with a computer connected to the internet, and posh sitting chairs. Even the bathroom was decked out in tile and textured wall paper. (Every time Patty and Kristen came to my room, I handed out Starbucks lattes and six-packs of Oreos like a princess bestowing gifts on her people.)
I got to see my incision. My belly button was notched now, at the top and bottom, like it was exactly six o’clock. There was an additional hole on my left side where they had to put in another port/instrument. Apparently, Louise needed more elbow room to get out. The incision was held together with skin glue. Freaking glue. And it hurt like hell.
A nurse came into my room and wrote her name and my daily goals on the whiteboard near the door. “Mama Yoshi” said my goals were urinate, pass gas, and walk. I joked that I was pretty sure I could handle those. Mama Yoshi was a round Indian woman who I wanted to hug the second she smiled at me.
When Patty came to see me that first morning, I told her I wanted to go see Jacki. She agreed and helped me out of bed. Check that, Mama Yoshi. Every move hurt. I shuffled more than walked, holding my stomach as though my guts might spill out of the incision. I don’t know how far the walk was, but it felt like a couple of miles. Patty was by my side. From my clavicles to my pubic bone, I ached. My bones felt like breaking. My abdomen felt like an early contender for the Macy’s Day Parade. But I wanted to see her. After all this, I had to see my mother.
Triumphant, I reached her room. Kristen was there. As we entered the room, she was sitting in a recliner. She took one look at me and said, “Good lord, what happened to you?!”
“Uh, I just gave you a kidney!” And we burst into painful laughter.
She was radiant. Despite the multitude of tubes and drains and IVs sticking out from all over her body, she was a changed woman. I’ll never forget her face that morning.
Life as a transplant patient is not easy. Forget any notion of a biological reset: it’s not like you get a new organ and suddenly you can do whatever you want. No, getting a new organ means you have a new job. There are anti-rejection medication schedules, regimented eating and exercise rules, and more doctor’s appointments. I’ve watched my mother set-up her entire world around Louise, from the smallest aspects of her refrigerator organization to her activism about organ donation. They move to their own rhythm now, and part of their harmony was composed by my sister.
After we were discharged from the hospital, Kristen moved in with her and stayed for about a month. My sister set to the task of being her caregiver with the determination and seemingly boundless energy of a thousand worker bees. Because of the new dietary restrictions, Kristen overhauled our mother’s kitchen: she went through every item in the fridge, pantry, and cabinets then inspected their contents for sodium, sugar, preservatives, and expiration dates. If an item didn’t meet her approval, it was tossed or donated. Kristen then filled her kitchen with fresh food and ensured that every meal was exactly within the right limits. Because she is a vegetarian, my mother discovered a new world of tofu and seitan dishes and was delighted by it.
The medical schedule was equally regimented. Kristen didn’t like the format of vitals paperwork given to her at the hospital so she created her own Excel spreadsheet to track all the required vitals: wound drain outputs, urine outputs, blood sugar levels, blood pressure, temperature, and drug dosages. Kristen set-up a series of medication alarms in Jacki’s iPhone — a system she still uses to this day. Hour by hour, my sister monitored her progress in those first days home.
My mother and my sister are strong-willed women, tenacious and determined. Over the years of their relationship, their similarities sometimes resulted in a proverbial butting of heads. But in the weeks after the transplant, they allowed their vulnerabilities to be exposed to one another, and in the process, they grew closer. As my sister once put it, “I’ve seen things. I’m a changed woman.”
And while Kristen was the unsung hero of Jacki’s house, Patty was the workhorse in ours. In addition to being my caregiver, she kept our small business running, full steam ahead, often doing the work of two or three people in a single day, only to come home and attend to me. My days were spent on the sofa, watching the History channel and Netflix, and texting Kristen to see how mom and Louise were progressing.
By the end of the first month, the difference in my mother, thanks to Louise and Kristen, was dramatic. She lost more than 24 pounds, much of it fluid. We could barely comprehend it. I went back work somewhere around the fourth week. Life slowly resumed to a normal pace.
Today marks the 2nd anniversary of our kidney transplant. Today my mother is healthy and happy. On her last visit to her kidney specialist in Baltimore, the doctor told her that it is rare to find a patient so compliant and with such a positive outcome for a transplant. Mom often remarks that she treats Louise the same way she treated her pregnancies with my sister and me. She ate all the right things, exercised, slept well, and followed the medical rules with precision. Louise is her new baby.
She uses that metaphor often, and every time, I have a corollary thought. The doctors removed my kidney through an incision in my belly button, which is a reminder of the connection I once had to her — an umbilical cord through which she gave me life. Now, there is a new scar and a new connection to her — an incision through which I was able to help her sustain her own life. And there I am, back to these small circles with her.
Each day, we walk in the light of this experience, grateful for one more day to love our Jacki, to laugh with her, to hold her close, and to watch her do all the things she once thought were beyond her reach. Not long after Louise moved in, Jacki told me that she started a bucket list and intended to check things off. She started to travel again. When an old friend from high school, a sweet gentleman named Merrill, asked her on a date, she went. Not long after that, she fell in love with him. She even asked to go to a Michael Franti concert and sang to her heart’s content. (Turns out, Michael Franti’s son has FSGS too, and he talked to the crowd about it between songs.)
Life with Louise, as she says, is a very good life indeed.
