LyniaNara’s Story

Many, many people have asked for the story of our sweet renal failure patient, LyniaNara. If you want to know her story, sit back and have a read. So here goes…

When I met her, she was just another bright and energetic 5th grader at one of our sponsor schools. She loved to laugh and jump rope, sing with her friends and EAT! You couldn’t tell it from her tiny frame, but boy did she love to eat! She was mischievous and loved to play pranks too. She was just a normal girl, living a simple life in a tiny village in Haiti. Her friends called her “Lynia,” but I always loved calling her by her full name “LyniaNara” because it had a certain ring to it that reminded me of a song. That’s what LyniaNara is…a happy song. Her joy is contagious…

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She moved on to sixth grade, and she and her friends enjoyed being the “seniors” at the primary school. They giggled at the boys, protected the kindergartners, and bossed around the fourth and fifth grade girls because, well, they could! This was their last year at “the orange” school, and soon she and her friends would move up to the BGM High School, and they would switch to the more prestigious blue uniforms.

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LyniaNara moved on up to seventh grade, but her spark had begun to fade. She was always very tired and wanted to sleep instead of go to school. She cried because she wanted to go, but she didn’t feel good when she was there. She didn’t feel good no matter where she was. Her back hurt all the time, and she did not have an appetite. Food didn’t taste good to her for some reason. She tried to feel normal. She didn’t know what was wrong with her body. Her smile grew weak. It was as if her dark, sunken eyes were about to lure her into a deep tunnel. She was exhausted. Her parents knew she was not the energetic child she was so supposed to be, so they took her to the doctor.

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LyniaNara’s parents took her to see a doctor who ran a series of tests on her then referred her to a nephrologist. The nephrologist admitted her to the hospital and had more tests run. By the time they figured out that LyniaNara was in the advanced stages of kidney failure, her parents had spent almost $2000 US. They had borrowed from friends in their church and sold livestock to pay the hospital bills, but at this point they were tapped out. The doctor explained what it would take to keep her alive, and it sounded to them like an impossible future. Someone suggested they go to Hope Center and talk to us here about the situation. If BGM couldn’t help, they had already prepared themselves to accept the fact that, without a miracle, their baby girl was going to die. But God….

After talking with LyniaNara’s family about the situation, we began to pray that God would show us what to do. We consulted with But God Ministries CEO, Stan Buckley, and he said, “We can’t put a price on a 13 year old girl. We will ask God to provide and we will do what we can do to help her live.”  We had no idea where to begin. We reached out for advice on the Haiti Medical Facebook page and a doctor suggested that if our ultimate goal was kidney transplant, we should take LyniaNara to see a doctor in Haiti that had done several successful kidney transplants. We did just that, and held onto the hope that one day LyniaNara would return to a somewhat normal life. We made our first visit to  Hospital OFATMA in May.

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After talking to the doctor, a plan was made to try to manage her kidney disease with peritoneal dialysis because she could do this procedure at home and it would not be as expensive. Once she got into a routine with the dialysis, we could start testing family members for a tissue match and make plans for a kidney transplant. We scheduled the surgery for the port to be inserted and then we would proceed with learning to do the peritoneal dialysis. She was nervous but hopeful that this procedure would put her on a path towards a normal life. She was beginning to realize, however, that her idea of “normal” was going to be far from what she had always known. None of the other girls she knew would go to school every day with a tube in their stomach. None of the other girls would have to attach a bag of fluid to that tube and fill their belly every morning and night for the rest of their lives. None of the other girls had to swear off of salt, bananas, potatoes, avocados, or CHOCOLATE! She was only 13 and she LOVED to eat! Now she was having to accept that most of the foods she loved were poisonous to her body! It was a lot to think about. It was more than she was ready to face.

Since inserting the peritoneal catheter, LyniaNara began to get more and more sick. Her blood pressure was high and difficult to manage, possibly because she would often cheat on her diet. She would go on hunger strikes until her mother would give in and give her food with salt because, after all, Mom couldn’t sit there and watch her child starve herself to death! She needed to eat, and neither of them understood …so she would feed her the only food she knew how to make…normal food…with salt. What she didn’t realize, however, is that the salt that made this food taste so good to her baby girl was poisoning her blood and causing her blood pressure to rise dangerously high, her body would swell up like a balloon, and she would become dangerously weak.

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Between the months of May through September, LyniaNara spent most of the time in and out of the hospital fighting for her life. She spent many nights in the emergency room, and even more nights in a large room with 20 hospital beds filled with other sick people. Family members would take turns sitting with their loved ones, sharing stories with one another, going out to get food for their loved ones because the hospital didn’t provide food that they could eat. They would loan one another money to get medicines and tests that their doctors called for. Every week we would reload LyniaNara’s envelope with money, and as the money was spent, receipts took its place. LyniaNara’s mother and sister took turns caring for her, and I would run back and forth from the grocery store to the house and back to the hospital with food made with no salt because the family had no idea how to make food she could eat. We were all worn slam out. I sat with LyniaNara many times all day long so her mom and sister could get a break. One time, as we sat there trying to find things to talk about, a family three beds down began screaming and crying as the staff wheeled their loved one out to take him to the morgue. LyniaNara knew that this young man who had just died was fighting the same kidney disease she was fighting, only he had lost his battle. Fear filled her eyes as they passed by her bed. She watched in horror as the ghostly shape of the man’s figure draped in a white sheet brought chills to her spine and melted to despair. She slowly turned her face towards mine, looked straight into my eyes, then closed hers. A tear pressed its way out of the corner and created a dark, fluid path down her soft, mahogany cheek. My heart sank.

LyniaNara was finally moved to a patient holding room the hospital containing 20 beds,  Tony and I were preparing to go to the states, so I went over instructions with the family, explaining when to take each medication, how to measure her water intake, how to check her blood pressure, and who to call on for help while we were gone. We would be gone for three weeks, and the thought of her sinking down again and becoming septic made my heart tremble and my blood boil.

Sure enough, we returned to Haiti, and LyniaNara was septic again.  When I went to visit her in the hospitial, I was expecting to find her recovering, but instead she was deathly ill. This was the third time she had become severely septic since she began her peritoneal dialysis. Every treatment she had taken was given at the hospital, so I was very confused as to why she kept getting septic. Come to find out, they were doing the treatments without gloves! The doctor also told me that while we were gone, they had decided to switch her to hemodialysis because she was not responding well to the peritoneal. Her hemoglobin had dropped to 2.5 and she was near death.  The hospital explained that they had been out of dialysis supplies for over a week, so she had not received treatment as she should. The nurse pulled me to the side and said, “Ou bezwen pran li lot lopital paske l’ap mouri isit la.” (You need to take her to another hospital because she is going to die here.) I went into panic mode. My hands trembled as I frantically searched for the number to an ambulance service to come get her. I managed to get into contact with HERO Rescue service and they agreed to come get her. They advised me to take care of any outstanding balances at the hospital before they arrived because we urgently needed to get her out of there.

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I briskly made my way to the administrative office, weaving through the patients crowding the hallway in wheelchairs, wrapped in blood stained bandages. There were people sleeping on benches all along the walls, desperate and dying patients moaning and yelling for help from rooms along the way. My blood pressure was rising by the second. When I finally reached the office, I was in tears. I sat before the emotionless administrator trying to explain in my best Creole that I needed to settle up LyniaNara’s bill because we were taking her to another hospital for dialysis. She slowly thumbed through her files, occasionally glancing up at the soap opera on the tv overhead,  then finally she began to name off all of the treatments LyniaNara had received. She scribbled a figure on the paper. As I leaned forward and stared at the number, my heart began to tremble. I closed my eyes to keep my composure. It was going to cost $700 to get LyniaNara out of the hospital. Tony just to happened to have given me $600 just in case I needed it when I left Hope Center that morning. I knew there were going to be other charges when we changed hospitals, so I was going to have to muster up some courage to dispute this bill. I tried with all of my strength to find the words to calmly negotiate a lower bill. The administrator finally agreed to let me pay $500. I took the papers from her, ran to cashier, counted out the bills being careful not to let anyone around me see how much money I had. While paying, the paramedics passed me with LyniaNara’s stretcher and I motioned to them where to go. The cashier gave me the blue discharge paper I needed to exit the building, and I ran to catch up with the stretcher that was turning into her room.

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We made our way to the ambulance and lifted her in. I found myself praying out loud in Creole for God to spare her life and help us get to where we needed to go. She probably had minutes to live. My driver, Meresse, was waiting for us outside, so LyniaNara’s mother and sister and I jumped in and told him to follow the ambulance to Hospital L’Epoir. Traffic was horrific and Meresse tried desperately to keep up with the ambulance, but other vehicles were not letting him pass through. For a minute I thought we might die trying to get there.

When we finally arrived at the hospital, they had already unloaded LyniaNara and taken her to the ER. I knew I did not have the needed cash to pay for admission as well as the ambulance, so I explained to the driver the situation and he agreed to take a donation for gas in lieu of payment. “Thank you, God…” I whispered as I handed him 2500 gourdes which was about $40 at the time. After what seemed like an eternity and multiple confrontations with other patient family members who were afraid the “blan” was going to get special treatment, the doctor explained to us that she was going to have to go to another facility because there was no one at L’Espoir who could do the procedure. I called the ambulance to return to get us, they agreed, and within 30 minutes, we were loading LyniaNara back into the ambulance. When we arrived at the dialysis center, we discovered that we needed to get her to the second floor, and the elevator in the building was about the size of a laundry chute. The paramedics quickly switched to plan B, wrapped her in a sheet, and carried her up the stairs. The staff at the dialysis center immediately went to work getting LyniaNara hooked up to the machine. By this time, it was nearly 9:00 at night and we realized we had not eaten anything all day. I had two packs of crackers in my purse, so LyniaNara’s sister and mother and I shared them and prayed it would be enough to satisfy the hunger now that we had switched into waiting mode. The pediatric nephrologist who usually worked at L’Espoir had followed us to the dialysis center. I introduced myself and began to explain to her what all had happened. Come to find out, Dr. Exantus was the first doctor that LyniaNara’s parents had spoken to a year earlier. She was curious about why they had never brought her back to see her. I explained everything that had happened since their first visit and she was clearly very disappointed in their decision. At midnight, the dialysis was finished and we had to make a decision as to what to do next. The doctor said she needed to be transferred to a hospital for additional dialysis, treatment for sepsis, and she would need to be intubated. The ambulance returned for the third time to take her to Hospital Bernard Mevs. She was stable for now, but not out of the woods by a long shot.

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Once we arrived at Bernard Mevs, the team transferred her to the pediatric ICU and prepared for intubation. However, her father suddenly decided that he did not want a tube to be put in his daughter. The hospital staff explained to me that she would certainly die within the hour if she did not get intubated and treatments begin. I pulled her parents aside and tried to explain. I begged them to make a wise decision. If their choice remained to not intubate, she would be dead by morning unless God intervened otherwise. They calmed down and agreed to the intubation. The hospital staff quickly got back to work on her. They were losing time and were concerned that they might lose LyniaNara as well.

As I sunk down upon the black-gray, mud and grease covered curb amongst all the other long, tired faces, I leaned my head back against the cold, cinderblock wall and began to pour over the events of the last 24 hours. I could not believe that this precious 13 year old girl was again fighting for her life for the fourth time in one year. I felt my chest tighten, my shoulders began to heave, and as I drew in a deep breath, the tears began to flow uncontrollably. My body curled forward as I placed my face in my hands and pretended to sleep like everyone else, but inside the dark womb I had made for myself, I was crying out to God for a miracle. At 5:00 in the morning, I felt a gentle hand upon my back and was startled upright to find a doctor with soft, apologetic eyes searching my face for permission to break the silence. It was the chief of pediatrics coming to let me know that LyniaNara had made it through the night and I should go home. Her family had left long before and decided to let me sleep. My driver was asleep in the truck outside the gate doing what he often finds himself doing…waiting for me to decide to leave. I tapped on his window, he bolted upright, and scrambled to lift his seat and roll down the window. We headed home towards the sunrise as vendors along the route swept their curbs and prepared their booths for the day’s market. I was beyond exhausted.

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In the two weeks the followed, LyniaNara continued to improve. The hospital called saying it was time for LyniaNara to go home and she could return to the dialysis center for her treatments three times a week. As Meresse and I made our way through the maze of congested traffic through Port au Prince, I felt thankful that LyniaNara had made it through yet another nightmare of near-death trauma, but I also dreaded sitting down in another administrator’s office begging for grace on a hospital bill. Three hours later, we exited the hospital with LyniaNara in the back seat and a receipt for a $1500 hospital bill. I just kept praying to God to continue to provide. I reasoned that it was clear that God had rescued her from death over and over again, so I must continue to trust that the funds would continue to be there. I fought against worry in the back of my mind while clinging to the memory of the many  miracles experienced so far.

Knowing absolutely nothing about hemodialysis, I was a little confused when the doctor called us two weeks later explaining that her temporary port had come out for the second time and we needed to pay $300 to have it reinstalled. Her doctor said that she was in the hospital having a new port put in, but we would have to pay for it to get her out. She also explained that LyniaNara seriously needed to get her fistula installed because we could not just keep reinstalling this temporary port. I had no idea what a fistula was, but it didn’t sound easy or cheap. The doctor said she had heard that a surgical team was currently at a hospital not 3 miles from us and they “just so happened” to have an endovascular surgeon on the team whose specialty was installing fistulas! I quickly assured her we would send her the money for the port that day, hung up the phone, and grabbed the keys to the truck. I was going to that hospital to find this surgeon. Once I arrived at the hospital, I asked around until I found the unit where the visiting team was operating. The surgeon was in surgery, but they agreed to send him out as soon as he was finished. Two hours later, he came out of the double doors and greeted me with a smile. I explained the whole story to him, and he said to have LyniaNara at the hospital by 6 the next morning and he would do the surgery for free. ….for free!! Oh my gosh, Hallelujah! I resisted the urge to hug him since he didn’t know me from Adam.

The next morning, we arrived at the hospital early, and LyniaNara was the first patient on the surgical list. She received her fistula, entertained the whole surgical staff with her sweet smile, and we headed home that afternoon. Praise God for His provision and yet another miracle!!

Fast forward five months. LyniaNara has been going to the dialysis center three times a week now and getting stronger and stronger. She is using her fistula in dialysis, and it is holding up well. We still don’t know what the future holds, but we know God has a plan. We are hoping that her family will begin testing soon for a donor match and we can start the process of getting her on a list for transplant. The dialysis center has agreed to only charge $40 for each dialysis treatment, which is a huge discount, but since she has it 3 times a week, we are looking at about $500 a month for her dialysis, plus another $250 a month for transportation, and $100 a month for additional medicines. We have no idea how much her doctor is going to charge, as we have not received a bill from her yet. The dialysis center did say that if we could find someone in the states that would start sending them some of the supplies they use daily in their center, we could trade that out for treatments, so we are looking for donors now. We are also researching St. Jude to see if we can get her to the states for her kidney transplant once we find out if anyone in her family is a match.

Please join us as we pray for God to continue to guide us down the needed paths to get sweet LyniaNara back to a somewhat normal life. She yearns for friends and school and the brisk, sun-kissed air on her face as she walks through the village with other girls. If you know of anyone with access to dialysis supplies that might be willing to partner with her dialysis center, share her story and get them in touch with me. If you feel led to help contribute to her medical expenses, you can do so at http://www.butgodministries.com and earmark it for LyniaNara benevolence. If you have connections with anyone at St. Jude who could help guide us through the process of getting a foreign patient admitted, please forward them her story and get them in touch with me. I know that God has a plan for her, and He wants to use many, many people to come together to do a miracle. I don’t know yet who those people are, but God does, and I trust that He will call them to action as soon as I….hit…publish.

God bless you all. Thank you for reading LyniaNara’s story.

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