A new life

Well, since we last spoke, Tube Titty has been part of me. Giving it a name made it easier to accept, like if I was stuck with this thing, it at least deserved a personality.

At the beginning, I thought dialysis would be easier. Spoiler alert: it wasn’t. Looking back, I can finally say I’ve walked that road and, fingers crossed, never have to again. But those first 15 to 30 days after the catheter was placed were brutal. My stitches were pulling, I could feel the tube in my neck, and even holding my head straight was a challenge.

For anyone who doesn’t know, a catheter is used for hemodialysis. They put it into a vein in your neck, chest, or groin so the machine can clean your blood. My first sessions were awful. Everything was raw, stitched, disinfected, and burning. The kind of pain that’s so sharp it almost feels satisfying, because deep down all you want is for them to rip that foreign object out of you. But no, this was just the beginning. I had to learn to see it as part of me, like being a human phone charger, plugging in three times a week to recharge.

My very first dialysis session was at Georges Pompidou hospital, the day after my catheter was placed. I was terrified, but in the end, it didn’t really hurt. What I remember most is the smell of disinfectant, and that the nurses had to wear these blue suits, glasses, and even shoe covers. I felt like ET the extraterrestrial. The smell stuck with me. The session only lasted two hours because my kidneys were still “half-working.” Afterward, I napped and then said my goodbyes to the nurses. Not forever-goodbyes, more like “see you later” because I knew I’d be back.

Instead of a Friday night out like most people my age, I went home exhausted, ready to face my new reality.

That weekend we went to visit my new dialysis center: Clinique de l’Alma, right by Invalides, one of my favorite neighborhoods in Paris. The streets were empty, masks everywhere, it felt eerie. We took the elevator to the 7th floor — “Dialyse.” My hands were shaking. This wasn’t totally new anymore, but it wasn’t something I could escape either.

Inside, we met Professeur Anglade Labatide. When she saw me, she looked shocked. And honestly, I got that look all the time from then on. People couldn’t believe someone so young needed dialysis. But the truth is, in the US around 90,000 people are waiting for a kidney transplant (1,200 of them children) and in France about 20,000. It’s not rare, just shocking to see it in front of you. From that first meeting, though, she and I built a real connection.

She showed me around, and this place quickly became my second home. Most of the patients were older. There was a French man with Japanese roots in his late 80s, a woman in her 60s who had already been transplanted three times, another woman in her 70s with a few health issues, and two men in their 60s — one Spanish-looking guy who smoked like a chimney and another who worked at SNCF. The whole room looked like a scene out of The 100, blood running through tubes, machines keeping us alive.

And then there were the nurses. Charlotte and Renato. They welcomed me the first time I visited, and they quickly became the reason dialysis didn’t feel so lonely. They were my age, full of energy, and somehow knew exactly how to bring light into a heavy room. Renato would bring Portuguese pastries, Charlotte and I would gossip about anything and everything. Unlike most patients, I actually became close to my nurses. I was like the “popular kid” in the center for once in my life. Even after leaving, I stayed in touch with Charlotte — we still chat on Facebook.

My schedule ended up being Monday, Wednesday, and Friday evenings from 6 to 10pm, sometimes even later. At first my mom came with me, and we’d walk along the Seine at sunset to the clinic. It almost made it feel normal. But once COVID hit, she couldn’t come in anymore. Eventually, I had to take an ambulance. And let me just say, being in an ambulance is not what you think. It was basically a maxi-taxi that smelled like cigarettes, not the glamorous siren ride I imagined as a kid.

My routine at the clinic always started the same. I arrived early, greeted everyone, and sat with the other patients in the waiting room, which honestly felt like waiting for a bus. When it was finally my turn, I went to my little glass-box room — special for me because of the catheter, which had a higher risk of infection. Everyone else shared big rooms together, and while I sometimes felt left out, I also had my own TV, which felt like a win. Then I would weigh myself, which meant facing the reality of the 3 to 5 kilos of water my body had retained over the week. After that, I got “plugged in.”

The next four hours had their own rhythm. I usually started with an episode of Les Marseillais or Les Anges. Then I would color to relax my mind. After that, I would move on to watching movies, the kind of classics you are supposed to see at least once in your life.

Once the session ended, the nurses unhooked me, I weighed myself again, and just like that the 3 to 5 kilos were gone. The ambulance would take me home, and most nights, no matter how late it was, my mom was waiting for me so we could eat dinner together.

Weirdly, dialysis became life. It was my routine. I told myself I was just going to “work” or “school.” It was simply what I had to do. And in that routine, I found people I didn’t want to say goodbye to when the time came.

Dialysis taught me I wasn’t alone. Even though I was the youngest in the room, I laughed, connected, and shared with people who understood this fight. It even made me wonder if one day I might want to become a dialysis nurse.

So, to the amazing nurses at Clinique de l’Alma in Paris, thank you. For your patience, your humor, and for putting up with me (which isn’t always easy). You made those endless hours lighter, and you made me feel like I belonged.

A mini surgery, the birth of Tubetitty

Thursday, February 20th, 2020.
The day had come. Around 6 a.m., a complete stranger—a nurse I had never seen before—walked into my room and told me to take a shower with bétadine, that disinfectant the French love to use. He said he’d make my bed and then place an IV in my hand for the doctors, “just in case.”

The surgery was to place a catheter in my chest so I could start dialysis. I was told it would be simple, under local anesthesia, nothing to worry about—“really minimal.” But still, I wanted my mom. I wanted to see her face before walking into that room and facing the unknown. Deep down, I knew it probably wouldn’t be possible with the COVID restrictions, but the child in me still hoped.

The shower was anything but comforting. My hair smelled gross afterward, I dried myself with those tissue-like “towels” that never actually dry you, and then changed into a thin, smelly, transparent blue hospital gown. It felt less like being a patient and more like being a prisoner. Once I was ready, the IV went in. To my surprise—my mom arrived! I was overjoyed. Hugging her before the procedure felt like the biggest gift.

When they explained the surgery, I asked if it would be painful. They reassured me: most people barely feel anything. Still, when I learned it would be local anesthesia, I panicked. I had zero experience with local surgeries, and the thought of injections in my neck or chest made me shake. I remembered when my little sister split her head open at the British Club at five years old—I was there when she was injected with local anesthesia. It wasn’t pretty. The doctor assumed I already knew, and when I realized it wasn’t going to be general anesthesia, I froze. They tried to reassure me: “It’s just like a blood test in your neck.” Weirdly enough, that calmed me down.

By 11 a.m., the nurses arrived to wheel me off. The surgery was supposed to be at 5 p.m., but because others canceled, I got moved up. Maybe they got lucky and magically cured overnight—I’ll never know. What I do remember are the nurses’ faces when they entered my room. They didn’t expect someone so young. I said goodbye to my mom, took a deep breath, and off I went to the bloc opératoire.

Rolling down the hallway, I started counting the lights above me—just like in Red Bracelets, that TV show about sick kids. “1, 2, 3, 4…” until the operating room doors swung open, just like in Grey’s Anatomy. The room smelled sterile, metal everywhere, and freezing cold.

They slid me under a huge echography machine and told me to lie on my side. My nerves were buzzing, so I started chatting with the surgeon, asking questions I already knew the answers to. He told me calmly, “Two injections in your neck.” I wanted to cry. He reassured me, “Come on, we’re not going to put you under general anesthesia for a simple catheter!” Simple for him—terrifying for me.

“How long will it take?” I asked. “About two hours,” he replied.
They covered me with a blue sheet so I couldn’t see anything, disinfected the area, and then distracted me with questions. I knew the technique well—doctors had used it when I was little and terrified of blood tests. The injections hurt, but not as badly as I’d feared. Within minutes, the area was numb. I could feel every tug and push, but no pain.

When it was finally over, I was wheeled into recovery. My neck hurt, I felt drained, and the wound wouldn’t stop bleeding for a while. Eventually, they brought me back to my room, where my mom was waiting. Later, Anne-Charlotte came by, and we chatted about everything and nothing, which helped me forget, even for a moment, what had just happened.

That night, I went to bed early—tomorrow would be my very first dialysis session. To cope, I gave my catheter a name: Tube Titty. Adding a personality to it somehow made things easier.

It was the start of a new chapter: me and Tube Titty, side by side.

Back to the Hospital Days

A few days after seeing Dr. Retji, it was confirmed: I’d have to stay in Paris and press pause on my studies. But before that, I still had things left in Madrid. My little studio right by Plaza del Colón—just a two-minute walk from Vatel Madrid, when the campus was next to the Alliance Française and the Consulate. I loved that apartment.

Madrid was also where I had built friendships—Essie from Finland, Aizhan from Kazakhstan, Amparo from Spain, and so many others. Leaving all of that behind wasn’t easy, but it was clear: it was time to say goodbye. So, gout and all, I flew back to Madrid, packed up my things in under 48 hours (the maximum time I was allowed to stay), and headed back to Paris.

By then, COVID was starting to creep into Europe. Countries were talking about lockdowns—a word I had never heard before. It felt like the whole world was going to war with an invisible enemy.

Then came Monday, February 17th 2020. The day I was dreading.

I received a letter from Georges Pompidou Hospital, written in that cold, standard hospital font:

“Dear Ms. Gaëlle Crespin, you are awaited to be hospitalised at the Georges Pompidou Hospital for the placement of your catheter on the 19th of February 2020. Please bring along your insurance information, passport, and confirmation of your appointment.”

No mention of how many days I’d stay. Just: you’re coming in. That’s when I learned Professeur Thervet’s final decision: I’d be getting a catheter.

For context, a catheter is a soft tube that’s placed in a large vein, usually in the neck, for dialysis. Less invasive than a fistula but riskier—it can’t get wet, and infections are a constant danger.

I had a day and a half to process it. Sleep? Impossible. My mind was spinning back to my first surgery at age four. I don’t remember much, but I do remember lying in a strange containment bed, my mom next to me with one of her closest friends, both looking devastated as they said goodbye before the peritoneal dialysis surgery.

The second time I went under anesthesia was when I broke my arm against a metal door (but that’s another story for another time). So I didn’t really have a clear idea of what to expect. My only “reference” for surgeries was Grey’s Anatomy, where basically someone dies on the table in every episode—not exactly comforting binge-watching before my own procedure.

That night, my brain ran in circles: What if I die on the table? What if my heart explodes? What if I bleed out? Dramatic, maybe, but those were the thoughts that haunted me. Because let’s be real—the unknown is always the scariest part.

On February 19, 2020, my mom woke me up like always. I packed a small bag, got dressed, and we took an Uber to Georges Pompidou. Oddly enough, I wasn’t scared anymore. Maybe because there was nothing I could do. Maybe because deep down I hoped I’d be home the same day.

We went straight to the 7th floor, where Professeur Thervet’s office is. But instead of turning left toward his office, we turned right—toward hospitalization. I’d been there before. The same woman at the desk smiled and helped me check in. I like to think I got my private room because I was their favorite (probably not, but let me believe it). The last time I’d been hospitalized, I had to share a room with an elderly woman who was constantly in pain and crying. It broke me. This time, at least, I had privacy.

The nurses came in to weigh me, ask the standard questions, and slip a hospital bracelet onto my wrist. For me, that bracelet always feels like a pair of handcuffs—the official sign that you’re not leaving.

My mom stayed with me until dinner, but after 8 p.m., I was alone. I wished she could’ve stayed the night like when I was four, but it wasn’t possible.

I twisted and turned the entire night, wide awake, knowing what was waiting for me the next morning: surgery.

This is me, signing off — Till next time!

Gee

Dialysis

Since we last spoke, I was actually starting to feel a bit better. I could finally walk more, which meant I got to discover little corners of Paris—at the same time the city itself was slowly shutting down. People were beginning to wear masks everywhere, and honestly, it felt like a scene straight out of a horror movie. Masks didn’t just remind me of the pandemic—they brought me back to doctors. And I’d been surrounded by doctors my entire life.

Speaking of doctors, I was “prescribed” a new one: Dr. Abou Retji, Lebanese. Now, imagine my mom’s face when she realized he was Lebanese. She was overjoyed! The second we stepped into his office, she had the biggest smile on her face. For a moment, I was terrified she was going to hug him out of excitement just because of that shared Lebanese connection. Thankfully, she didn’t—because that would have been way too embarrassing.

Dr. Retji was an expert in fistulas, which brings me to yet another throwback (you know I love my throwbacks). Let me explain:

When I was four years old and living at La Trinidad hospital in Palermo, Buenos Aires—just steps away from my house—I had to start dialysis because my kidneys were the first organs attacked by the toxins from E. coli.

What is dialysis?
Dialysis is a treatment that removes extra fluids and waste products from your blood when your kidneys can’t do it themselves.

There are 2 main types:

Peritoneal Dialysis (PD)

Me (age 4) - Ongoing with Peritoneal dialysis

At age four, this was the easier option for me. Instead of a machine, your own abdominal lining acts as a filter. A catheter is surgically placed in your belly, and cleansing fluid (dialysate) is poured in. It absorbs waste and excess fluids, and then a few hours later, it’s drained out. It can be done almost anywhere as long as you have the supplies.

There are 2 types of Peritoneal dialysis: Continuous Ambulatory Peritoneal Dialysis and Automated Peritoneal Dialysis.

Source: https://www.kidney.org/kidney-topics/dialysis

Source: https://www.kidney.org/kidney-topics/dialysis

Hemodialysis(HD)

This uses a dialyzer (a filtering machine) to clean your blood. Before starting, a minor surgery is needed to create a vascular access site—usually a fistula in the arm. Hemodialysis is typically done at a center or at home, three times a week, lasting around four hours each session. Source: https://www.kidney.org/kidney-topics/dialysis

Source: https://www.kidney.org/kidney-topics/dialysis

Now, back to Paris and my appointment with Dr. Retji. Professeur Thervet had referred me because Dr. Retji was supposed to be the surgeon for my fistula. The thing is, fistulas can look pretty rough and often leave your arm scarred for life. At that moment, I wasn’t too worried—I figured, I’m young, I’ll get through it.

But Dr. Retji surprised me. He explained that he really didn’t want to put in the fistula too early. He even mentioned that a friend of his had one done and never used it, which left his arm ruined. Instead, he believed I was young enough and would likely receive a transplant sooner rather than later. He wanted to convince Professeur Thervet to let me use a catheter for dialysis instead—a less invasive option.

The catch? Catheters come with their own risks. They can get infected easily, and you can’t ever get them wet. Still, Dr. Retji was ready to fight for me, and I’ll never forget that.

During those weeks, I didn’t see much of Professeur Thervet. The routine was mostly blood tests every 15 days. But each result came back worse—the creatinine levels kept climbing faster than we expected. It’s a surreal feeling, knowing your body is slowly failing and that there’s nothing to do but wait.

This is me, signing off — Till next time!

Gee

First days in Paris

Hi Again!

Those first 10 days in Paris were honestly some of the hardest. Imagine moving to a city that feels both completely unknown and yet weirdly familiar at the same time. The only times I had ever been to Paris before were as a kid, usually for a couple of days to visit my uncle Daniel and cousins before heading down south to Uchaux, near Orange (the closest big city being Avignon).

But this time was different—it wasn’t just a short visit. I was here for an undetermined amount of time. And I was in Paris not because I wanted to, but because I had to.

As I’ve mentioned before, I grew up as a third-culture kid. Born and raised across countries, I never really knew where I belonged. In Singapore, all my friends—the Deplancks, the Stauffers, the Singhs, the Xatarts, the Montagnes—seemed to have one country they could truly call “home.” I always felt like my story was more complicated. At the French school, I wasn’t “French enough.” Around Argentines, I still felt like an outsider. And now, moving to Paris, it all came back—I didn’t really fit anywhere.

It was just me, my mom, and my Argentine side of the family in Paris: Daniel, Marie, los mellis Emile & Martin, Harold, Julie, Joseph, Suzanne, Jean, Gligli, and Michel. Shoutout to Michel—a retired dentist, grandfather of Emile and Martin, father of Julie & Marie, husband of Gligli—who went out of his way to connect my mom with nephrologists in Paris through his network. Thanks to him, we eventually found the famous Professeur Thervet.

Those first days were rough. I couldn’t even walk because of the gout, so my only way of getting around was by Uber. Sleeping was even worse—my nights were unbearable, and I still carry a terrible nighttime routine from back then. My mom had to wake me up every morning because left on my own, I wouldn’t have gotten out of bed. I wasn’t sure if it was the pain from the gout or depression—or both.

We would sit at the table for breakfast, my mom and I, but our conversations were short. The news about what was happening in the world was so heavy that it just made me want to crawl back into bed and not move. Not watch a movie, not a series—nothing. Just lie there, staring, while my brain flooded me with questions most 20-somethings don’t usually ask themselves:

What happens when we die? Where do I go when I pass away? Am I going to die? Why didn’t I listen to doctors?

The longer I stayed in bed, the darker my thoughts got. My mom did everything she could to keep me from sinking too deep, and seeing the Hagges once in a while gave me small moments of relief.

Then came the call from Professeur Thervet. The results were bad, and I had to restart EPO treatments for anemia.

This wasn’t new to me. When I was four, after months in La Trinidad Hospital in Buenos Aires, I flew back to Singapore where Dr. Gong at Gleneagles discovered I was anemic, a common issue with chronic kidney disease. His solution: EPO. Think of it like blood doping, except instead of chasing medals like Lance Armstrong, I needed it just to survive.

From the age of four and for a few years, my parents had to inject me with EPO every week. Even my parents’ friends were trained to do it when I slept over at their houses. My dad was usually in charge—he’d come home from work, after long calls, and I’d know exactly what was coming. I hated it. The injection wasn’t fast like a normal vaccine—it was slow, steady, and inescapable. I’d run around the house trying to hide, but there was no escape.

Fast forward to January 13, 2020: I was back on EPO. My mom picked up the prescriptions, and this time, I decided to learn to do the injections myself. One of my sisters, who had recently been diagnosed with diabetes, trained me on how to inject into my stomach. At first it was terrifying, and I needed courage—honestly, I wished I had liquid courage, because I needed it.

For context: EPO (Epoetin alfa-epbx) is a man-made version of a hormone that healthy kidneys naturally produce. It tells the bone marrow to create red blood cells. Without it, anemia takes over—and for people like me with chronic kidney disease, it can completely drain your ability to function. source: https://www.mayoclinic.org/drugs-supplements/epoetin-alfa-epbx-injection-route/description/drg-20443760

After being prescribed EPO again, I slowly began to feel a bit better. My energy was coming back piece by piece, and the gout started easing thanks to the medication Professeur Thervet had given me.

But even as my body was starting to recover, my days still revolved around staying at home, lying in bed, and endlessly scrolling through CNN. COVID was creeping into every headline, spreading faster each day. It wasn’t just my illness and my own questions weighing on me anymore—it was the uncertainty of a world that suddenly felt unsafe, unpredictable, and terrifying.

This is me, signing off — Till next time!

Gee

Road to a kidney transplant

Friday 10th of January 2020,

I landed in Paris, France, from Buenos Aires, Argentina. But let’s rewind a little. At 20 years old, I was living my best life in Madrid, Spain. I had friends from all over the world — from Kazakhstan to Finland, Spain to Italy. I was studying Hospitality and Tourism at Vatel Madrid, a school that pushed us into real-life hospitality experiences and even led me to Barcelona, where I met incredible people like Joana, who became like an older sister to me while working at The Edition next to Plaça de Santa Caterina.

Life was exactly what you’d expect from an early-20s student in Spain: nights out, endless laughter, and the kind of “normal” freedom you take for granted at that age. But while I was doing my internship at the Barcelona Edition, something wasn’t right. I was constantly sick, drained, and had no energy. A friend recommended a doctor, so I went — on time, optimistic — and walked out with news that would change everything.

At just 20, this hospitality student was told she needed a kidney transplant. My first reaction? As if?! My family had always known this day would come, and deep down, I did too — just not this soon. But in my stubbornness, I brushed it off. I called my mom anyway, and her instincts kicked in immediately. She reached out to Paris’s best nephrologists (she had just moved there and bought an apartment), and within minutes, Professor Thervet from Georges Pompidou Hospital replied. He became my doctor — brilliant, respected, and sometimes maddeningly blunt — but truly one of the people I admire most.

He called me from Barcelona to Paris right away. His verdict matched my doctor’s: I needed a transplant urgently and had to start dialysis as soon as possible. Still, I clung to normalcy. I finished my internship in Barcelona, returned to Madrid, and tried to keep up with my studies. But my body was deteriorating fast. I missed classes, got sick constantly, and one day, what was supposed to be a simple blood test ended with me hospitalized for three days.

I was flying to Paris almost every two weeks, determined not to drop out. But the symptoms escalated. Eventually, I developed gout — painful, unbearable gout. Walking felt like torture. Still, Professor Thervet let me spend Christmas in Buenos Aires. That holiday is etched in my memory: my last one with the whole family — the Primos de Neuquén, La Tía Suzy y el Tío Víctor, and Los Hagges.

After Christmas, everything unraveled. On my last day in Argentina, I was hospitalized, and I knew then it was game over.

(Fast forward) I landed in Paris, France, after a 13-hour flight from Buenos Aires. The journey itself felt like torture — my body weakened, my joints screaming with gout, and a sickness that had shadowed me long before boarding. It almost felt like déjà vu, taking me back to when I was just four years old, diagnosed with Uremic Hemolytic Syndrome.

Luckily, the plane touched down earlier than expected. My mom and I made our way to our new apartment near the Opéra. Four flights of stairs, four heavy suitcases, one swollen ankle — every step was a battle. By the time I reached the top, I collapsed onto the bed, knowing this would be my new home for an unknown amount of time. Deep down, I was bracing myself for what was to come.

The very next day, around 3 p.m., my mom and I headed to Georges Pompidou Hospital to meet Professor Thervet. First stop: blood tests. Then, the consultation. As expected, the results weren’t good. My body was failing me faster than I could accept. That afternoon, the decision was made: a catheter would be placed in my chest, and I would begin dialysis.

This was the moment when “living my best life in Madrid” ended — and my fight for survival in Paris began.

This is me, signing off — Till next time!

Gee