Ep. 58 | Down to 75 Pounds

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In August of 2014, a 23-year-old woman walked through a medical center in rural South Africa searching for something important.

As she moved through the little medical center, she passed offices and rooms filled with beds.

She saw sick patients getting shots and young women lined up for pregnancy care.

It was loud and hectic, but this was her third summer as a medical volunteer in Africa and she knew what to expect.

But some days were harder than others, and today was one of those hard days.

She felt exhausted as she dragged herself to the supply room and opened the refrigerator.

She pushed aside boxes of pharmacy samples to find the plastic pouch of liquid she'd been looking for.

Then she hustled back down the hallway and into the last room on the right, shutting the door behind her.

She hung the pouch on one of the metal IV poles they kept in the room and collected the plastic tube dangling from the bottom.

Then she lifted up her shirt and found the matching plastic tube protruding from her abdomen.

She connected the tube from the pouch to the one in her belly and twisted a blue plastic clip to release the drip.

She sighed and flopped down into a folding chair, resting as her lunch slowly drained into her stomach.

Because this bag of nutrients had not been for a patient, it was for her.

This was how the volunteer had gotten all her food, all her nutrients, for the past several years, through a tube in her stomach.

And her doctor told her that it was quite likely she'd never be able to eat again.

At least not without enduring excruciating pain.

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From Balin Studios and Wondry, I'm Mr.

Balin and this is Mr.

Ballin's Medical Mysteries, where every week we will explore a new baffling mystery originating from the one place we all can't escape, our own bodies.

So, if you like today's story, the next time the follow-button is just about to put the last piece in their thousand-piece jigsaw puzzle, walk over and smash it to the ground.

This episode is called Down to 75 Pounds.

In August of 2010, 19-year-old Mackenzie Hild hunched over her clipboard inside a large canvas tent in Rwanda.

She had just finished her freshman year at Harvard University and was spending the summer working with HIV patients as a volunteer for a medical aid group.

Mackenzie finished scribbling some patient notes onto her clipboard, then set it on a folding table alongside clipboards from other volunteers.

She felt a little sad that the summer was coming to an end.

While she was looking forward to going back to college, she'd never felt more fulfilled than over these past three months.

Since childhood, she'd dreamed of working as a doctor in Africa.

In fact, this was actually her second trip to the continent.

She spent last summer working in a clinic in Uganda.

She rubbed her eyes and then stretched and yawned.

And as she did, she suddenly jerked in pain.

There was a sharp cramp in her stomach, like someone had stabbed it with a knife.

She pressed a hand to her abdomen, hoping the pressure would relieve the pain, but the cramping only got worse.

It was not the first time this had happened.

In fact, she'd had stomach cramps almost every day since she arrived in Rwanda a few months ago.

Her stomach always started hurting shortly after she ate.

It had gotten so bad that she was now skipping breakfast and eating as little as possible for lunch and dinner.

The same thing had happened last summer in Uganda too.

She'd lost 15 pounds over three months.

Luckily, once she got home, her weight went back to normal.

So despite being surrounded by doctors this summer, Mackenzie hadn't told anyone about her stomach pains.

She figured they were just a side effect of her anti-malarial drugs.

She'd be home in a few days and the ache would go away and she'd regain the weight she'd lost over the summer.

So she took some deep breaths, riding out the pain until it subsided.

Once she was feeling a bit better, Mackenzie stood up straight again.

Then she went back to work and pushed the stomach ache out of her mind.

A few days later, Mackenzie's mom, Joanne Hilde, stood with her husband Wayne in the Sacramento airport, about 65 miles from their home in Nevada City, California.

Joanne was giddy with excitement.

She hadn't seen McKenzie in three months and couldn't wait to pull her daughter in for a big bear hug.

But when McKenzie finally walked through the doors, Joanne was shocked.

Her daughter had lost a lot of weight.

Mackenzie had always been thin, but now she looked downright skeletal.

Joanne looked to Wayne, who seemed equally worried.

He mumbled that she must have lost a good 20 or 30 pounds.

Joanne agreed, but she forced herself to smile as her daughter saw them and came rushing over.

That night, Joanne sat in the living room with her daughter and husband, watching Jeopardy and Wheel of Fortune.

Joanne had ordered pizza for dinner, thinking that a few hearty meals would help Mackenzie put the weight back on.

But as they sat together, eating and watching TV, Joanne couldn't help but notice that McKenzie hardly touched her food.

And when she did take a bite, she winced like it had a bad taste or something.

She asked her daughter about it, and Mackenzie explained she hadn't been eating much recently because her stomach hurt so badly after meals.

She smiled and promised her mom she would eat more once the anti-malarial meds wore off.

But Joanne didn't think that sounded right.

Losing a little weight might be a side effect of anti-malarial medication, but pain so intense that her daughter was skipping meals?

That had to be be something else.

She told Mackenzie they were going to go to the doctor first thing in the morning.

Mackenzie nodded, now looking a bit scared.

Joanne hadn't meant to upset her daughter, but she wasn't willing to wait to see what happened either.

The next morning, Joanne sat with McKenzie in the waiting room at the local clinic.

They'd met with the doctor briefly, and he had ordered a full battery of tests, including tests for tropical diseases, HIV, and digestive disorders like Crohn's.

Now they were waiting to see what the results might be.

Joanne couldn't keep her legs still.

She bounced them nervously, even when McKenzie told her to stop.

Deep down, Joanne was worried that something could be seriously wrong with her daughter.

Thankfully, it was not long before the doctor popped her head into the waiting room and waved McKenzie back.

Joanne followed, and they stepped into the same little examination room where they'd first met the doctor.

The doctor told McKenzie that all of her tests had come back negative.

In her opinion, it seemed like McKenzie's system was just being sensitive to the food she'd been eating over the summer, which explained the stomach pain and the weight loss.

Her stomach should settle down in the coming weeks, and then she could regain the weight, and so the doctor just advised some rest at home.

Joanne felt incredibly relieved as she promised the doctor that she would heed the advice, she would get her daughter some rest and some good home-cooked meals.

And Mackenzie nodded as well, agreeing to take it easy until school started later in the month.

And with that, Joanne decided to put her worries aside and focus on enjoying some quality time with her daughter before she returned to college in Boston.

A few weeks later, Mackenzie sat at a large table in a wood-paneled dining hall, having dinner with some friends.

She was back at Harvard, enjoying the beginning of her sophomore year.

But she was still dangerously underweight, and her stomach ached every time she took so much as a small bite of food.

Determined to eat anyways, she shoved a little bit of pasta into her mouth and she chewed it until it basically dissolved inside of her mouth, and then she swallowed.

Then she braced herself.

Sure enough, a few minutes later, that stabbing pain erupted in her stomach.

A friend noticed McKenzie go silent and asked if everything was okay.

Mackenzie just nodded and said the pain would subside in a few minutes.

But 10 minutes later, the pain was only getting worse.

Breathless, McKenzie asked her friend to walk her back to her dorm room.

She wanted to go lie down.

The friend agreed, and they made their way across the quad from the dining hall to her dorm room.

Once there, McKenzie crawled into her bed and just lay in a fetal position, waiting for the stabbing sensation to go away.

But it didn't.

She was in too much pain to move, and so she stayed in bed for hours, just watching reruns of friends and holding her stomach.

The pain would finally ease up, at which point she was able to sit upright.

Mackenzie went to the bathroom to brush her teeth, then tried to get some sleep.

Two weeks later, McKenzie was in the emergency room, holding her stomach in agony.

After two weeks of near constant stabbing pain, McKenzie had finally gone to the student health center on campus.

But she had been so underweight when she arrived that the staff didn't think they'd be able to treat her.

Instead, they called an ambulance to take her to the hospital where she was now.

A doctor walked into the room and pulled up a stool so that she was sitting directly across from McKenzie.

And then she leaned in, looking as though she had some bad news.

The doctor explained that Mackenzie weighed only 75 pounds, which was a life-threatening weight for someone who was 5 feet 3 inches tall.

The doctor said it was a good thing that McKenzie had gone to the student health clinic for help.

She might not have made it much longer on her own.

The thought was terrifying.

Mackenzie could feel her heart start to race as the doctor ordered a full workup of tests and then promised they would get to the bottom of her pain.

Mackenzie called her parents to let them know what was going on, and her mom said she'd book the next flight out of Sacramento.

Mackenzie wanted to tell her mom that she was overreacting, that everything would be fine, but for the first time since she got sick, she didn't know if that was even true.

This thought made her eyes sting with tears, and she begged her mom to please hurry up.

When the doctor returned a few hours later, she wasn't alone.

There was a small medical team with her, who told McKenzie they had her test results.

Mackenzie braced herself, hoping for something definitive.

Instead, the doctors explained that all of McKenzie's tests had come back normal.

Mackenzie was shocked.

She certainly did not feel normal.

But then the doctor went on, Because her tests were normal, it was likely her weight loss was due to a psychological issue, not a physical one.

So instead of surgery or medication, they wanted to send her to an inpatient treatment center, specifically one that specialized in eating disorders.

Mackenzie blinked.

Sure, she had just heard the doctor wrong.

She didn't have an eating disorder.

In fact, she was desperately trying to eat.

But the doctor just shook her head and said that while that might seem true, Mackenzie's extreme weight loss and the fact that she sometimes skipped meals altogether pointed to a diagnosis of anorexia.

Mackenzie tried to keep herself together to convince them that she only skipped meals because of the physical pain in her stomach, but the doctors were certain that she was just struggling with an eating disorder.

An hour later, Mackenzie felt so relieved when her mother walked into her hospital room.

She began crying and then started trying to explain what the doctors had said to her because she knew her mother would believe her.

She would set the doctors straight.

Instead, her mom sat on the edge of the bed and told McKenzie that the inpatient center was probably best.

They had to trust the doctors.

They knew what they were doing.

Mackenzie felt overwhelmed as she realized what her mother was saying.

that she would be going to the treatment facility in a matter of hours to have her mental health examined.

A month later, McKenzie sat at a metal lunch table with a nurse sitting nearby.

Mackenzie forced herself to eat the food in front of her, even though every bite felt like molten iron hitting her stomach.

She'd spent the past four weeks in a medical unit for people with eating disorders and had been observed at mealtimes like this one on a regular basis.

She choked down as much food as she could handle, knowing that she was not going to be released until she gained back some of the weight she'd lost over the summer.

Her stomach now hurt all the time, and not just when she was eating.

It now hurt to walk, to sleep, to move, just to think it hurt.

And the worst part was that everybody kept telling her it was all in her head.

She felt unhinged and angry.

Angry that her doctors didn't believe her.

Angry that she was missing school to be in this medical unit.

And angry that she was in too much pain to eat.

She felt like she was going crazy.

She finished the last bite of her oatmeal and dropped her spoon in triumph.

The nurse told her she had done a great job, then followed her to the small office where McKenzie weighed in every few days.

She stepped on a digital scale and the nurse took down her weight from a screen that McKenzie couldn't see.

Blind weigh-ins were clinic policy because they didn't want the patients thinking about how much they weighed.

But Mackenzie wanted to know.

She was praying that she'd manage to put more weight on.

Her clothes had been fitting her better, which she hoped was a good sign.

Mackenzie sighed with relief when the nurse looked at her weight on the screen and then told her that she should be proud of her efforts.

Mackenzie's stomach was already aching from the oatmeal she'd just eaten, but she refused to show it.

She would do anything to leave this place and return to school.

And if that meant she had to bear down and hide the agony she suffered every time she swallowed food, well, that was fine.

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Five months later, in the spring of 2011, McKenzie sat upright in a bed at a medical facility while a nurse took her vitals.

Mackenzie's parents waited anxiously by her side.

Thankfully, McKenzie's weight had stabilized, which allowed her to move back home with her parents back in Nevada City.

But eating was still extremely painful, and McKenzie knew that if she didn't do something to fix it, her weight could plummet right back down again.

So now, a doctor was about to insert a permanent feeding tube through McKenzie's nose and down her throat.

It was a radical idea, but McKenzie's gastroenterologist thought it might help her maintain her weight.

Nutrients would now bypass her hypersensitive stomach altogether, and instead go directly to her small intestine.

From now on, McKenzie would have to navigate the world with a a tube in her nose.

But the doctor thought it might help her gut rest for a while and alleviate the pain, which could allow Mackenzie to go back to school.

And to McKenzie, that was worth the risk.

The nurse finished taking her vitals, and a few minutes later, the doctor came in and got all the equipment ready.

Mackenzie smiled at her parents as the doctor inserted the tube up her nose, down her esophagus, and into her small intestine.

Her mom asked her how she was feeling.

Mackenzie had to be honest, not great.

But at least she wasn't wasn't having stabbing pains in her stomach, and hopefully it would all be upwards from here.

A few weeks later, McKenzie arrived at her gastroenterologist's office for a routine checkup.

She stepped on the scale, which flashed 105 pounds.

It was phenomenal news.

She'd officially regained all the weight she'd lost since first going to Rwanda.

Mackenzie was overjoyed.

And then it got even better when her gastroenterologist told her he was officially ruling out anorexia as a diagnosis, and he was approving McKenzie to return to college in the fall.

Now, the gastroenterologist was clear.

They still didn't know what was causing McKenzie so much pain, but at the very least, it didn't have to stop her from living her life.

Mackenzie was too excited to care at that moment.

She could not wait to get home and re-enroll at Harvard.

In early September of 2011, Mackenzie sat in a dining hall with her friends for the first time in a year.

She couldn't have been happier to be back on campus, even if it meant that she was now a year behind her classmates.

Mackenzie was getting all of her food through the nasal feeding tube now, and while that normally didn't bother her, it was Taco Tuesday at the dining hall, and her stomach almost grumbled as she smelled the chili peppers and grilled onions.

She didn't miss the stomach pain, but some days she really missed eating.

And she also didn't like the feeling that everybody was always looking at her.

She was the nose tube girl, and she felt even more conspicuous when she was sitting next to friends at the dining hall.

So she took out a textbook, deciding to get a jump start on her homework while her friends ate.

Their mouths were too full to talk anyway.

Mackenzie had a full course load this semester, and she'd volunteered to work at a local homeless shelter.

So really, she told herself, cutting out the time it took to actually eat meals was for the best.

Just then, one of her friends asked her if she wanted to try just a little bit of the churros they were serving for dessert.

And Mackenzie did.

She really, really did.

But she still shook her head no.

She told her friend that she was enjoying her life and that really this was no big deal.

But the friend frowned, not quite believing her, and then went back to eating.

As for McKenzie, she sighed and went back to her homework.

The following summer, in July of 2012, Mackenzie stood in line at a burger shack outside of Albuquerque, New Mexico.

She was spending the summer volunteering again, this this time on Native American reservations in Arizona and New Mexico.

She was thrilled to be back in the field, and best of all, she no longer had a feeding tube coming out of her nose.

She stepped up to the counter and handed the cashier a list of orders.

She apologized for the large volume.

The food was for a clinic full of hungry doctors waiting on burgers and chicken sandwiches.

But none of this food was for Mackenzie.

Even though she no longer had a nasal feeding tube, she still wasn't eating.

That May, surgeons had given her a stomach feeding tube that was less conspicuous than the one in her nose.

They'd also removed her gallbladder to avoid the risk of gallstones, hoping that would relieve her pain somewhat.

But her new feeding tube delivered nutrition to her stomach, and so she was getting those stabbing stomach pains again, even now as she stood outside the burger shack.

They weren't as bad or as prolonged as when she actually ate food, but still, it hurt.

Mackenzie stood around the parking lot, waiting for her order to be up and checking her watch.

She was waiting for a phone consultation with her gastroenterologist, who she still checked in with routinely, and today she had a special request.

She wanted to know when she could go back to volunteering in Africa.

She had gotten used to not eating, but she was tired of letting her stomach pain rule her life.

She wanted Clearance to go back overseas.

Just then, Mackenzie picked up the burgers, and a few minutes later, her doctor called.

Mackenzie updated him on how she was doing, and then she asked for Clearance to go back to work in Africa.

The doctor paused for a moment to think, and then finally he said, yes, he thought it would be okay for her to go.

Mackenzie was so happy.

She thanked the doctor, hung up, and jumped in her car.

As soon as she had a free moment, she would start making plans.

Two years later, in the summer of 2014, Mackenzie's mom, Joanne, was on a hike with her husband Wayne.

It was a dry, hot day in the Sierra Nevada Mountains in California, and Joanne could see Wayne, who was a little ahead of her on on the trail, pouring some of their water over his head to cool off.

Joanne was lagging behind him because she was in deep conversation with a fellow hiker.

She was telling her new friend about her daughter, and he was nodding his head as Joanne described McKenzie's struggle to live a full life despite her illness.

Because this fellow hiker, whom she just met, happened to be a doctor at the University of California at San Francisco who specialized in advocating for patients with complex medical cases.

Joanne explained that McKenzie was currently in South Africa, volunteering after she graduated from Harvard in May.

Her doctors had been reluctant to let her go, but said if she really felt called to return to Africa, well, South Africa would be okay.

The doctor that Joanne was talking to on the trail raised his eyebrows and admitted that he was impressed.

McKenzie sounded like a really special person.

He asked if he and a medical student could contact McKenzie.

He was currently teaching a course on medical advocacy, and McKenzie's case sounded like an ideal mystery to investigate.

Joanne couldn't hide her excitement.

For the first time in five years, it felt like maybe, just maybe, they would get some real answers here.

The moment Joanne and Wayne got back to their car, Joanne texted her daughter in South Africa, telling her all about the chance encounter with this doctor.

A few weeks later, a medical student named Jessica Gould sat next to the professor Joanne had met on the hiking trail.

They were about to join a Skype call with McKenzie.

Jessica had been helping her professor look over McKenzie's case and devise questions and theories that might guide their Skype call, and so she felt prepared for this, but in all honesty, Jessica was nervous.

She had read how many specialists had worked with McKenzie, and she didn't know what she, a fourth-year medical student, could offer.

There was a ding on the computer, and McKenzie appeared on the screen.

She was thin, almost frail, and looked impossibly tired.

and not from a bad night of sleep, but from years of exhaustion.

Despite that, she was smiling and waving, her brown hair pulled into a messy bun on the top of her head.

Jessica admired Mackenzie's determination.

She hoped there was some way they could help her.

She and her professor said hello, and the more they spoke with McKenzie, the more inspired Jessica became by her.

She thought about how McKenzie approached her chronic illness.

Despite her constant pain, McKenzie still found ways to help others thousands of miles from home.

And so if McKenzie could find ways to help others, well, Jessica could find a way to help Mackenzie.

Several months later, Jessica was sitting in front of her laptop, as always, feeling exhausted.

She was on a phone call with her professor, explaining that she still hadn't figured out what was wrong with McKenzie.

She was frustrated.

She'd spent nearly every minute of her free time chasing down leads, devouring thousands of pages of records from different hospitals and searching through medical databases, anything that could help her find a way to help McKenzie hilled.

But every lead she chased met a dead end.

It was maddening, and she told her professor as much.

He just sighed and was silent for a long moment.

Then, he suggested Jessica go back and look at the more common diseases that all of McKenzie's specialists had ruled out.

Maybe Jessica's fresh perspective would unearth some clue these specialists had missed.

Jessica doubted that she would find something that the country's top doctors had overlooked, but she didn't have any other leads to pursue, so she agreed.

A few weeks later, in January 2015, McKenzie was lounging on the couch back home in Nevada City when her phone rang.

When she answered, the man who spoke to her was Dr.

Christopher Skelly, the chief of vascular surgery at the University of Chicago Medical Center.

Dr.

Skelly explained that before the holidays, he'd received an interesting email from a medical student named Jessica Gould.

And after chatting with Jessica, he had agreed to review McKenzie's case.

And in his opinion, he knew what was causing McKenzie's pain and had a way to treat it.

Mackenzie's heart pounded.

She couldn't believe what she was hearing.

For the past six years, she'd either been living in excruciating pain or with a feeding tube up her nose or in her stomach.

It had been five years since she last chewed food or even tasted it.

She thought this was how she would live the rest of her life.

She'd grieved, she'd processed, she'd found a way to move on.

And now she was hearing that there might be a cure.

She told Dr.

Skelly that she couldn't book her ticket to Chicago quickly enough.

Four weeks later, McKenzie arrived at Dr.

Skelly's office feeling nervous and thrilled.

After some testing, Dr.

Skelly told McKenzie that he believed her symptoms were physical, not psychological.

In fact, he believed she had been suffering for years because of a physical abnormality that she'd had since birth.

And the tests proved it.

Just hearing those words flooded McKenzie with relief.

She wanted to cry.

Then Dr.

Skelly finally gave her an official diagnosis.

He said that Mackenzie had a rare and little-known condition called median arcuate ligament syndrome, or mols for short.

He explained that the median arcuate ligament is a band of tissue that runs from the base of the diaphragm, the muscles that help us breathe, up to the heart.

For people with mols, that band of tissue is in the wrong place.

It crosses over the heart and compresses the artery that supplies blood to the stomach and other organs.

This impaired blood flow can cause intense pain when eating, because the stomach isn't getting the blood supply it needs to digest the food.

Doctors had actually tested McKenzie for malls early on, but those results came back negative.

However, when Jessica went back and reviewed the early decisions in McKenzie's case, she thought mols perfectly explained McKenzie's symptoms.

And so Jessica had convinced a leading expert on malls, Dr.

Skelly, to investigate whether her hunch was right.

And when he did, Dr.

Skelly determined that the previous tests were wrong.

Mackenzie did have mauls after all.

On March 18th, 2015, Dr.

Skelly performed a two-and-a-half-hour surgery on McKenzie to relieve the pressure on the artery supplying blood to her stomach.

The next day, when McKenzie woke up, she had her first bite of food in five years.

A spoonful of scrambled eggs from the hospital cafeteria.

She chewed, she swallowed, and then she waited, and no pain came.

And she burst into tears of joy.

It would take a few weeks for her stomach to get used to eating, but the pain never did come back.

After recovering from Moll's syndrome, McKenzie went on to attend medical school at the University of Washington in Seattle.

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From Balin Studios and Wondry, this is Mr.

Bollin's Medical Mysteries, hosted by me, Mr.

Balin.

A quick note about our stories.

We do sometimes use aliases because we don't know the names of the real people involved.

And also, in most cases, we can't know exactly what was said in these stories, but everything is based on research.

And also a reminder, the content in this episode is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

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