“Get busy living instead of busy dying,” has been Emmie’s* life mantra for the last 23 years. She knows she’s already beaten the odds of life expectancy, so each day is a gift to be treasured.

* Her real name, used with permission.

Dreamed of Having a Family

When Emmie and Dennis married in 1993, they dreamed of having a family one day. So when she learned she was pregnant a little over two years later, they were elated.

At 9 weeks, the first sign of problems arose when her hemoglobin levels were lower than normal. Her gynecologist suspected an iron or B12 deficiency, so she began taking iron tablets.

At her 20 week exam, Emmie overheard her obstetrician just outside her exam room exclaim, “Oh my word! Her hemoglobin cannot be this low!”

Her hemoglobin levels were indeed dangerously low, so Emmie was referred to a hematologist/oncologist.

Through the Fire

Emmie distinctly remembers a dream she had around this time in which she was in the hospital and asked about her baby. Her husband told her the baby’s in the nursery, but we need to talk about you.

“I didn’t know what Dennis meant, but the presence of God was profound in that dream. God told me I’d go through the fire, but He would be with me and give me peace.”

The local hematologist thought Emmie might have pernicious anemia, so Emmie started getting B12 injections. With no improvement, Emmie began seeing a hematologist at Emory who suspected she had hemolytic anemia. Her pregnancy moved into a high risk status.

All of this felt extremely overwhelming, but Emmie and Dennis prayed for her health and the health of their unborn child.

Crisis Mode

At 33 weeks, she started retaining fluid, experienced major swelling, and her blood pressure was high. Just a week later, she began developing toxemia and preeclampsia.

Her doctors put her on bed rest. Just one day later, her blood pressure was so high that Dennis rushed her to the hospital.

She was in labor. Whatever was causing her hemoglobin levels to be low was causing her body to go into crisis mode. It was imperative her baby be delivered as soon as possible.

After five hours of labor with no pain meds, a 5 pound, 13 ounce boy was born. Emmie remembers holding Andrew, but doesn’t remember the next few days.

In and Out of Consciousness

Soon after Andrew was born, Emmie’s kidneys and liver shut down. She began throwing blood clots, and her red blood cell count plummeted.

She received multiple blood transfusions. She was in and out of consciousness for three to four days as her body was so exhausted from giving birth. As worried as he was, Dennis maintained a positive attitude, believing Emmie was going to be fine.

She was cleared to go home ten days after giving birth to Andrew.

Rare Blood Disorder

Emmie was eager to meet with the hematologist a few weeks later as she wanted answers for her serious health scare. A name for it would be even better.

“You scared all of us to death,” the hematologist said. “We’ve tested your blood and don’t know what caused your body to shut down. But, there is one last thing we are going to test for.”

“When the results came back, I learned I tested positive for Paroxysomal Nocturnal Hemoglobinuria (PNH). This rare bone marrow disorder wasn’t hereditary, but acquired. I was a level three with 90% of my blood cells affected. As scary as the diagnosis was, at least I had a name,” Emmie shared.

While waiting to see a specialist at Duke, she did what any of us would do. She researched PNH. Here’s what she found:

 

These statistics terrified her, especially the median survival rate as she quickly did the math and realized Andrew would be 15 years old if she lived to the high side of the statistic. The idea of only having 15 years at most with her newborn son devastated her.

You Are a Miracle

When she met Dr. Rosse at Duke, Emmie and Dennis immediately felt at ease. He explained, “PNH is a stem cell disorder in which one stem cell becomes abnormal. When it regenerates, it dominates the other stem cells. Red blood cells, among white cells and platelets, begin dying within 48 hours as opposed to the 60-90 days of a person without PNH.”

He went on to say, “You are a miracle as you are only the fifth person with PNH to survive childbirth.  And so is Andrew as only about 50% of babies survive. We never recommend pregnancy for people with PNH.”

Dr. Rosse asked her if she’d experienced pain in her abdomen, chest, lower back or head. She told him she had difficulty catching her breath at times, blood in her urine, extreme fatigue, and lower abdominal pain.

While the urinary tract infections and kidney infections she had years before were symptoms of PNH, she learned most PNH patients were misdiagnosed several years prior to an official diagnosis.

Get Busy Living

Emmie told Dr. Rosse she experienced the feeling of having an elephant on her chest just after her diagnosis. He then requested she have an ultrasound. The results were scary. “I had a clot on my liver. He put me on blood thinners and Prednisone, which would stimulate my bone marrow to produce new red blood cells.”

It took her body a full year to get used to the medicines and side effects. The Prednisone caused her to gain weight, increased her blood pressure, and induced migraines. She was often fatigued, which meant she had to plan to do things when she had energy. Her quality of life wasn’t what she wanted it to be, but she was thankful she and Andrew were alive.

“I tried not to focus on the statistics. But honestly, they were overwhelming. I felt like a ticking time bomb. I knew the next blood clot could kill me. But I also knew God let me live. He gave me a child despite the odds. I had so much to be grateful for, so I decided to get busy living instead of busy dying.”

Soak in Every Precious Moment

Emmie experienced hiccups with her health throughout Andrew’s childhood, but she believed in living everyday like it could be her last. She felt a sense of urgency to soak in every precious moment with Andrew and Dennis.

Eight years after her diagnosis, Emmie began experiencing pain in her abdomen. The tests showed her spleen was the size of a football.

The idea of having surgery filled her with fear, but she combated that fear by praying. She opted to have the splenectomy at Duke where she could be under her PNH doctor’s care. Thankfully, the surgery was a success.

Beaten the Odds

When Andrew turned 15, Emmie, Dennis, and Andrew celebrated as they knew she’d beaten the odds of life expectancy for a person with PNH. So every year beyond those odds are bonuses.

And she knew despite her struggles, she was immensely blessed.

As a measure of precaution, her doctor recommended she have chemo-like infusions (called Soliris) every two weeks to prolong her life. She will do this regimen for the rest of her life. Even though this is not ideal, she maintains her hopeful and positive outlook.

She shares this advice for those struggling with their health: “Listen to your body. You know your body better than anyone. When you see a doctor, be your own advocate.”

Thriving Young Man

Every child’s high school graduation is a reason to celebrate, but more so for Emmie’s family as they knew it was a miracle she was there to see it.

Not only did she see Andrew’s high school graduation, but she’ll also see Andrew graduate with a Computer Science degree from Georgia Tech in May of this year. That’s four more extra years!

This thriving young man is planning to continue on to earn his Master’s degree and will certainly impact on our world!

 

 

Overcoming Is

Emmie says, “Overcoming is having hope in God, regardless of the outcome. Ministering to others and giving them hope is an opportunity I’ve been given because of my journey with PNH.”

She discovered many years ago the best way to overcome your struggles is to take your eyes off yourself and serve others.

Emmie is hopeful for many more years as she wants to continue ministering to others in need, travel with Dennis after his retirement, and looks forward to having grandchildren one day.

Leave a reply (below): Emmie continues to cling to the promise in Jeremiah 29:11.

She has experienced firsthand the hope promised in this verse and a much longer future than the man-made statistics predicted. And she gives God all the credit.

Would you live your life filled with fear or filled with hope if you knew your life expectancy was shortened?