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The Waiting List

Maria-Mădălina Movileanu was the first one to arrive on the second-floor hallway at Fundeni Hospital in Bucharest. It was November 2004 and the 16-year-old had found out the day before that she would get the kidney she’d been waiting for more than a year from someone whose brain ceased to function. They’d called her from the hospital, but she’d forgotten her phone in her jacket at school and she hadn’t heard it ring. Later that day, one of her father’s work colleagues had rushed to her house to tell her that he’d tried to reach her all day and that she had to get ready and leave immediately for Bucharest. “I left with another work colleague of my father’s, with an old Romanian car that I didn’t know could travel going 110 miles an hour on the highway,” Mădălina says.

Gheorghe Cătălin Ilie and his mother, Petria Tudor, came to the same place two weeks later. They’d spent a day at the “Prof Dr. C.T. Nicolau” Institute for Transfusion Hematology to get blood tests and to check if her kidney was compatible with his body. They’d come back to Brăila, a small port on the Danube, to gather all the required papers, collect money from the family, and wait for the results. They too spent almost a week on the second floor. George (that’s how friends call him) was 26 and terribly afraid of hospitals. He felt “like a pig sent to the slaughter-house” and wasn’t sure about the transplant surgery.

Mădălina left the sterile environment, those special rooms for patients who underwent an organ transplantation procedure, three weeks later. She’d gotten visits from her parents, friends, and relatives whom she spoke to from behind thick glass doors. Back in her room, she couldn’t hold her enthusiasm. She talked to everyone around her, run along the corridor after nurses and surgeons, and never thought about her body rejecting the kidney she’d just received. She spent her evenings in the hallway, a spacious room with a TV and a few benches, talking to other patients. It was on one such evening that she told George, who she thought was “a cute guy in striped pajamas, propped against a doorframe, trembling in spite of his bulkiness,” that she was alright and that this surgery would change his life forever.

The night before the transplant, George couldn’t sleep. He wanted to escape from the hospital alone and called a friend in Brăila. “I told him the surgery was over. That I was O.K. and that they were discharging me. Come take me home, I said.” Mădălina heard him and stopped him. She took his phone and watched over him until morning, lying on a couch in front of his room. “The moment she would fall asleep, I would jump out of bed. She’d wake up, and I’d come back to bed. I was panicking, but I didn’t have the nerve to get angry with her. She was just a kid. Even if I could have just shaken her arm a bit and she would have crumbled, I didn’t have the guts to do it.”

On December 6, at dusk, George was given the injection and dozed off. “Because of the stress and lack of rest the night before, I fell asleep in the elevator.” Later they told him that on his way to the operating theater he got up from the stretcher and started yelling at people, saying that he didn’t need to be carried and that he was not handicapped.

The surgery took a few hours. They sectioned his mother’s muscles and detached the kidney from the artery, vein and urethra. Then they crammed the organ in the lower side of his abdomen, without removing one of the two other kidneys. They connected the new one to the external iliac artery, to the iliac vein, and to the bladder, and the kidney started functioning right away. When George woke up, he had his arms tied to the bed, and he was surrounded by doctors who scanned him from above “like a wreck at the workshop.”

He spent one and a half months in the hospital, and Mădălina was the only one who paid him visits regularly and kept him company. She insisted he take part in conversations, shared how he was doing and feeling, while he just enjoyed staring at her. She was different from any other girl he’d met before; she was delicate, educated, and brave. One day, she kissed him. Then they each left for home. She came back to Pitești, he returned to Brăila, and they both carried on with their lives as normally as possible, far away from the cold hospital rooms and far away from each other.

* * *

Months before the transplant, George was working as a maxi cab driver. He spent long hours in drafty cars with no air conditioning, and one day he woke up with a persistent tooth pain. It felt like knives piercing his gums, his cheeks pulsing. He could barely keep his eyes on the road so he rushed to the nearest pharmacy and asked for “anything you have, the strongest pill.” The pharmacist gave him Vidan, an anti-inflammatory drug prescribed for headaches and muscle and bone pain. He took it anytime he felt that sensation coming back. “In a couple of months, I got to 20 pills a day.”

He arrived at the Emergency County Hospital in Brăila in the middle of the night with terrible nausea, after his parents called an ambulance. His head, hands, and feet were swollen. They found his blood pressure high and kept him in the cardiology division. The next day, they told him his kidney failed because of drug overdose and transferred him to the nephrology division, a place full of patients with kidney stones who “screamed and experienced tremendous pain” but whom doctors told to be strong because, no matter how hard it got, “they’d soon cut them open and cure them once and for all.”

George spent one month in the hospital and after a couple of days began a treatment based on strong diuretics to force his kidneys to restart functioning.

Nothing happened.

He was soon diagnosed with renal failure. His kidney would slowly die and his body would be left without the organs that kept its balance; removing waste products, regulating the quantity of water, the blood pressure and quantity of minerals, and helping in the production of red blood cells.

George was born in Cernavodă, a town in Constanta County, but grew up in Brăila, around 40 miles away from his birthplace. His mother came from a village by the mountains, his father was brought up by the seaside, and neither one of their children remembers ever catching a cold. He was the older brother, moderately well behaved (“Mother didn’t spank me that often”), and barely interested in school. He grew up in the middle of gangsters always looking for a fight, and ever since he was very little, he learned what fear, distrust, and violence meant. “In Brăila they take great pride in fighting. When people meet to play soccer, they also take their baseball bats, their swords, their scythes. You see them with that club on their shoulders, and you’re like ‘Hey, where you going?’ ‘To play soccer’.”

He quit high school in ninth grade. He liked to study, but he also liked the money that he was getting from “offering protection to random people in town.” Because of his stature, he got away with working as a bodyguard in places where people gambled. His school buddies called him “the gorilla” because he was tall, robust, looking older than he really was. In spite of his nonaggressive temper, he used his physique to make people fear him. He worked in places where people would frequently get into fights or even kill one another. In July 2004, he got his driver’s license and also his second job. He was a maxi cab driver on workdays and guarded party people in a rock pub on weekends.

* * *
When doctors told him he needed to start the peritoneal dialysis, George said no. It was an invasive process of cleansing the body that he had to undergo three times a week. His pelvis would have been filled with a viscous liquid that would have drawn the waste products from the body and that would have been introduced in his abs through a narrow tube called catheter. The catheter would have been surgically implanted, and would have been a permanent fixture that would have exposed him to numerous infections. Clothes couldn’t have covered it and everyone would have noticed it all the time.

He chose hemodialysis instead, an artificial blood filtering method that used an apparatus called a dialyzer and that exhausted his heart. One doctor at Fundeni Hospital made an incision in his left arm, tied his vein to his artery and made a fistula, a thick blood vessel in which a nurse later introduced two big needles with two tubes on each end. The blood flowed through the first tube to a cubic apparatus over one meter tall. It met a cleansing liquid that flowed in parallel, separated by an artificial filter, that drew the toxins out of the body, and then it reentered the body through the other tube. Until his fistula was ready, George’s blood reached the dialyzer by means of a catheter implanted in his femoral vein, in his thigh.

After his first dialysis session, his doctor told him he would have to quit his job and that his only activity from then on would be the dialysis. He would no longer go on holidays or take trips without thoroughly planning ahead and deciding which medical units he’d visit to cleanse his blood. Everything would be different until someone would show up saying he’d want to donate him a kidney or until his body would be too weak to survive so many changes. After every dialysis session, George was carried by nurses. He was dizzy, he threw up and his head was aching, but he was still hoping to return home. Then his 52-year-old mother offered to give him her own kidney.

* * *
Mădălina’s health began to deteriorate when she was 14, soon after her first identity card* was ready and right before her first big exam for high school admission. She was always feeble, she slept a lot, had no appetite and drank a lot of water. Her family thought it was yet another adolescent diet, then they thought about anemia. She’d always been fragile, she easily caught any cold and her throat was always sore. Her mother asked her to be sent to Bucharest to a children’s hospital, as she was worried that Mădălina’s doctor was avoiding diagnosing her. Mădălina made it to the capital city with her hemoglobin levels way below the limits. They hospitalized her in the oncology division first, then, after the results of the blood tests results came in, they moved her to the nephrology division. The doctor who was taking care of her invited her mother into his office and asked her if Mădălina was her only child. Then he told her that the girl’s kidneys had failed and that they should all expect the worst.

On September 2, 2003, when Mădălina was turning 15, she received a telegram from Bucharest informing her that she needed to start the dialysis right away because the results of her blood tests were still outside the normal range. Her creatinine levels (breakdown product formed in muscle) were very high which indicated that her kidneys were no longer filtering appropriately. She went to the hospital the next day and after the first dialysis session she fainted and experienced strong heart palpitations. The reasons why her kidneys failed remain unknown. Her tests showed that her blood was low in nephrons (basic structural and functional unit of the kidney that process urine and removes waste from the blood – a normal person has around 2.5 mm nephrons), so low that she was probably born with a deficiency. But even if her weakness had been diagnosed earlier, she would have probably only postponed dialysis a year or two because currently no medical process can help nephrons regenerate.

Mădălina never found out who her donor had been. She heard from someone that it was a 23-year-old girl who’d died in a car accident that gave her her kidney, but she never met her family, the people who actually agreed she got the organ. She was lucky and she was glad she wasn’t forced to spend years in a tangled system, on waiting lists with complicated selection criteria. In Romania, every transplant center has its own digital register with waiting patients. When patients subscribe, they allow doctors to thoroughly examine them and put together their compatibility profile. They need to get blood tests to establish their blood type and genetic profile. When a donor shows up, only those compatible will get a phone call. Still, the end number of those considered for a transplant mostly depends on luck. If “when you call them, one is away, the other one’s got the flu, one’s not answering his phone, another one doesn’t have money then…. In the end, five or six compatible patients show up,” Victor Zota, transplant coordinator in Bucharest, said in October 2013 in an interview for Gândul newspaper. “It’s based on one principle only: fate,” George says.

Two days after his transplant, George returned to his job on the maxi cab. He was out of money and was forced to disobey the doctors’ recommendation of staying in for the next six months to guard himself against possible infections that his body could no longer battle against (people who undergo a transplant take immunosuppression pills for the rest of their life so that their level of antibodies lowers and the body does not attack the new organ). He also went back to school to finish his studies. He saw Mădălina again a couple of times at medical checkups in Bucharest. After that they lost touch for two and a half years. They accidentally met again in Bârlad, approximately 120 kilometers north of Brăila, in July 2007, at a friend’s place who also had a transplant. They teased each other over the phone for two whole days and then they never stopped talking to each other. They spoke every day about everything.

Mădălina’s mother was against their relationship especially because of the age difference (George is 10 years older than Mădălina) and of his origins. Unlike George, Mădălina was brought up in Pitești, a quiet town of around 150,000 inhabitants. She was an only child, overprotected by her mother who’d divorced her father. She was always ahead of her class in school, dreamed about continuing her studies, settling down one day and having a calm non-adventurous life. Still she’d liked the cute frightened guy from the hospital from the first moment their eyes met. It was the first time that a man caught her attention. He was “original” and “handsome”. He listened to her and understood what she was going through. George doesn’t remember feeling so at ease with someone before either. Although he was avoiding commitments and was scared of a serious relationship, he felt drawn towards her and couldn’t stop looking for her.

In the summer of 2007, George got a job as truck driver. He spent weeks on the road in Europe and one time he asked Mădălina to join him. “I called Mom at the border,” Mădălina says. “She knew we were both in Bârlad. And I told Mom I’d pay a short visit to Paris and I’ll come back. I was 20 and I had never before stepped foot on foreign soil.” Eventually, they moved together in Pitești, together with her mother, and later by themselves in the studio that Mădălina inherited from her grandmother. They lived on their handicap allowance that summed around $300 a month. Mădălina was studying at the Faculty of Mathematics-Informatics at Pitești University, and George was dreaming about his own transportation company.

* * *
Right after the surgery, when patients are supposed to stay on a strict diet, George ate a whole bag of oranges by himself and got indigestion. Thus his body quickly eliminated the immunosuppression pills that he’d taken and his antibodies started attacking the recently transplanted kidney.

Although he had no other symptoms besides the high levels of creatinine, doctors told him that the transplant had gone to waste and that, most likely, it wouldn’t be three months before he’d go back to dialysis. But in the next five years his blood test results came back normal. Still he never stopped fearing that he would one day go back to the blood cleansing sessions so he took longer assignments with his truck to make more money and save more so that one day, if needed, he’d have enough to buy another kidney. On the road, he’d find dirty restrooms and he’d frequently suffer from urinary infections that he treated only when he arrived back home. He was always tired and refused to go to the hospital because he knew what everyone there would tell him.

In the summer of 2009, George felt his feet were abnormally swollen\. In Bucharest, doctors told him he needed to start dialysis but he refused and went to see other doctors in Iași, a large city located in Moldova. He told everyone he’d wait to see how other blood tests turned out. On Christmas Eve, in Pitești, he got sick, and Mădălina called the ambulance. At the hospital, they immediately connected him to the dialyzer. After a couple of sessions, he fainted. “They took him to intensive care,” Mădălina says. “They sent me to buy him some pills and when I came back they told me he was having surgery. It was January 2 or 3. There were no doctors in the hospital. You could barely get an echography. When they finished, they showed me they removed a liter of blood from his pericardium”. This was caused by the high levels of urea, a kidney function indicator. George went back to dialysis and one year later subscribed to the waiting list for another transplant.

One month later, in her final year winter exam session, Mădălina joined him. Her body was oversaturated with toxins and she was close to uremic coma, caused by the same high levels of urea. “My feet hurt really badly. I called the hospital on Friday or Saturday to ask when I could find my doctor and they told me to come on Monday. I didn’t get to Monday because on Saturday I had convulsions.” Monday morning, before the first dialysis session she experienced another attack and fell on the floor in the hospital’s restroom. “My blood pressure was so high that the tensiometer could no longer measure it.” To take precautions, she’d subscribed to the waiting list too three months earlier.

For Mădălina and George, health became their number one priority and it’s been five years since they started to do everything according to their needs and capacity. Since they moved together, they rest as much as they feel necessary and cook based on doctor’s recommendations. They even redid their house to make it a clean safe place for two people on dialysis. They live on their handicap allowances and on Mădălina’s salary. She graduated college and wishes to apply to a master’s program. She dreams about trips around the world, just them and their own truck, and about a more entertaining job (she now works as graphic designer, a settled job that she chose thinking her life might end up depending on an apparatus). George focuses on sports. He goes to the gym every day, lifts weights in spite of doctors telling him it’s dangerous to put pressure on the fistula and does whatever he considers necessary in order to stay healthy. He’s currently unemployed and he hasn’t found a job that matches his dialysis’ tight schedule. He spends his days in the house, learning Japanese, reading, repairing things around the house and taking care of a dog named Pufi. This fall he wants to go back to school.

Mădălina and George get along well and take care of each other. They schedule doctor appointments together, visit hospitals together and, from time to time, dare to adventure on a two-day trip outside the city together, whenever their dialysis schedule allows them to. They don’t plan much and although they’ve been together for seven years, they don’t think about building their own family, much less about having a child. They don’t even know if they’ll ever conceive a baby (“Pregnancy might be dangerous both for the baby and for the transplanted organ,” Mădălina says) or adopt one. (“I have a first degree handicap. Theoretically, I’m the one who needs to be taken care of.”)

But to prove that illness is sometimes just a matter of perspective, in 2012, when Romania had 9,500 patients on dialysis and 3,371 on the waiting list for a transplant, Mădălina and George decided to participate in the European Transplant and Dialysis Games, in the mini-marathon, march, ball throw and bowling competitions. They trained for several months and came back with six medals. “If there’s one piece of advice I can give to patients,” Mădălina said when interviewed after the competition, “it is to not let the idea of dialysis affect them more than the dialysis itself.”

No one knows why bodies reject a new kidney, just as no one can guarantee that the new kidney will be functional for long time. It all depends on how the organ interacts with the new organism and how strong the body is. In spite of a short-term functioning period, a transplant is always doctor recommended in many renal failure situations because dialysis, although not proven yet, shortens the lives of the patients. It leads to numerous complications involving the functioning of the heart and blood circulation. Also dialysis is an incomplete substitute for kidneys that cannot replace the kidneys’ crucial role in the endocrine system, producing hormones responsible for bone integrity and producing red cells. More so, a fistula cannot be used for life. It can crack; its walls can thicken and favor the formation of blood clots. There are only four places were a fistula can be created and the catheters that might replace it are simply open holes in the body that predispose the patient to various complicated infections.

* * *
Mădălina got another call from Fundeni Hospital last year in March. Her doctor informed her about the possibility of a new donor but eventually the blood tests showed that they were not compatible. George has never been called back again. Although according to Professor Radu Deac, director of the National Transplant Agency, in 2013 Romania achieved the highest donor growth rate in Europe, the country has long been ranked among the last ones on the continent judging by the absolute number of donors per million people (according to the European Transplant Coordinators Organization’s 2011 figures there’d only been 219 transplant surgeries performed in Romania, compared to other countries such as Spain that could take pride in their 2,498 transplants). Although the country had first performed such type of surgeries 100 years ago and kidney transplants are still the most popular type of transplant in Romania, “there are in fact only two centers were one can have such surgery, one in Cluj and one in Bucharest”, Gheorghe Tache, president of the Romanian Association of People with Transplant, says. There are also very few surgeons who perform such operations while in other countries it is regarded as a regular medical procedure.

Nowadays, for the first time in their lives, Mădălina and George share the same waiting list, but neither of them thinks about the bad things that can happen or how one’s life would be without the other. Since the beginning they promised to fight both on their own but more so together. In September, Mădălina will have her transplanted kidney removed to get rid of the antibodies that came with the organ. George is still considering undergoing the same intervention, but he knows he will have to at some point because his high level and wide variety of antibodies is making him incompatible with more and more possible donors.

Although their genetic profiles are different, if they ever turn out compatible with the same kidney, Mădălina says she’d let George have it because he’s scared of everything doctor related so he needs to get out of the dialysis world as soon as possible. George, on the other hand, thinks Mădălina should have the transplant first because she’s younger and braver and that she’d recover from any type of surgery easier, with just a smile on her face. Meanwhile, they both focus on living every day together to the fullest, staying optimistic, laughing and joking. They read a lot about transplant procedures and medical policies, about drugs, repercussions and their chances of recovery, and each awaits the phone call that might one day change their lives again and allow them to plan something, anything, in the long term.

* Every Romanian citizen uses an ID card that they receive at age 14; it’s compulsory and it’s usually valid for 10 years.

Photo credit: George 'Poqe' Popescu/Esquire Romania