Tami Slaven watched her wife walk slowly into the isolation room as she lay in her hospital bed, struggling to breathe. The loud, engine-like noise from the negative pressure exhaust fan masked the noise of her gasps for air.
She felt excruciating pain with every breath.
Her partner of seven years, Sue Kempiak, pulled a chair over to the bed and reached for Tami’s hand as her doctor entered the room in full protective gear. The physician wore a concerned look behind her face shield. She took Tami’s other hand and explained how she wanted to intubate, or put a tube down her throat and straight into her windpipe, so a ventilator could breathe for her. Tami would be given a sedative drip and placed in a medically induced coma.
“This is the best chance we have at saving your life,” the physician told her. Tami had so many questions, but she knew there were no answers or guarantees. It was mid-March, and while coronavirus cases raged in China, Italy and Spain, not a lot was known about the virus and how it spread.
Sue, a long-time Elkhart General Hospital ER nurse, squeezed Tami’s hand. “If something happens, I need to know what you want,” she asked, her eyes brimming with tears. The two had never talked about end-of-life plans. Tami was 52. She had no underlying medical conditions and rarely got sick. She remembers coming down with the flu once.
Overwhelmed by the gravity of the situation, Tami started crying, too.
“I can’t believe this is happening,” Tami whispered. “This isn’t happening.”
On March 1, Tami and Sue flew to New York to see their twin boys before the Army deployed one of the boys. They turned the trip into a vacation, visiting Boston, Providence, Rhode Island and Maine. It was cold and windy, but they made the most of it. “We visited the beaches and walked out to the lighthouses. We did the historical walk in Boston, visited the Cheers bar, and did all the touristy things that were on our bucket list.”
Toward the end of their six-day trip, however, Tami started feeling fatigued. She lost her appetite, started having chills and became super achy. All she wanted to do was sleep. After returning home, she visited their family doctor and he sent her home with Tamiflu. But instead of feeling better, Tami started vomiting. The nausea continued even after she stopped taking the medicine.
Tami couldn’t put her finger on it at the time, but she knew there was something different about this illness. “I was very sick.”
When she woke up Monday, March 16, she started having difficulty breathing. Sue rushed her back to Elkhart General, where the ER team determined Tami had hypoxia, which meant she didn’t have enough oxygenated blood traveling to her brain. Tami was immediately admitted and placed on oxygen. Given the severity of the symptoms she hadn’t been able to shake for more than a week, which now included trouble breathing, Tami also received a COVID-19 test.
When the test came back, the results were positive.
“You have to give me an answer,” Sue pleaded with Tami, not wanting to leave the room without knowing her wife’s last wishes. As an ER nurse, Sue understands, better than most, how quickly situations can take a turn for the better or worse.
Reluctantly, Tami told her wife that she wanted to be cremated and she wanted the kids to hold onto her ashes and bury her with Sue. All that mattered to her was that they would be together, even in death.
While lying in her hospital bed, struggling to breathe, she thought about how much time, how much life she had in front of her. How many things she still wanted to do, intended to do. She had never been a quitter. “I was very determined I wasn’t done,” Tami said. “I was not going to die.”
She looked up at the doctor and then at Sue.
“Let’s do this.”
Preparing to assist the clinical team with intubation, Jen Swain carried a tote of supplies into the room. The registered nurse set down the supplies and walked over to Tami, who was Facetiming Sue and asking if all their kids and grandkids still felt healthy.
Tami looked so weak, and she struggled to breathe. She was breathing twice as fast as a healthy person and using the muscles in her chest and abdomen to get the breath in and out.
“We had conversations prior to her getting intubated,” Jen said. “She was so anxious and scared because of the fear of the unknown. She didn’t know if she would ever get to see her family again. And with her wife being an ER nurse, she was aware of how dangerous the virus could be.”
In other intubations, Jen typically assures patients that the ventilator will help them breathe easier and allow time for their lungs to heal.
But this time was different.
“I was unsure at that time what her outcome was going to be,” Jen said. “I didn’t know what it was going to take to get her better. At this point, I had only heard of poor outcomes after intubation and the high possibility of a poor prognosis. But I knew that she wouldn’t last much longer without the breathing tube.”
Sue used a baseball analogy in the last thing she said to Tami.
“The bases are loaded. Full count. Two outs and we’re down by one run. You’re up to bat. This is all you.”
The video chat ended and Tami turned to her nurse with a desperate plea.
“Tami started begging me not to let her die because she wasn’t ready,” Jen remembers. “I understood the depths behind that statement. She grabbed my hand and wouldn’t let go.”
Jen made eye contact with another nurse. They recognized they needed to switch roles so Jen could remain at Tami’s bedside. “She was terrified, alone and needed comforting. I told her that I’d update Sue frequently.”
“We’ll do everything we can to take care of you,” Jen told her reassuringly, gently rubbing Tami’s hand.
That’s the last thing Tami remembers before she became Elkhart General Hospital’s first ventilated COVID+ patient.
Nine days later, she woke up. No one expected what happened next.
The medical team removed the tape that kept the endotracheal tube in place. Tami took a very deep breath, and as she exhaled, they gently pulled out the tube. Tami immediately began choking. She couldn’t catch her breath and couldn’t breathe. She was gasping for air, coughing up blood, and feeling very scared.
They placed a mask over her face and administered the highest concentration of oxygen. Nothing helped. Tami wanted nothing more than to see or talk to Sue. Her doctor returned to the room and decided to re-intubate as a last resort to save Tami’s life.
“The fear of dying was much more real the second time. I knew from the looks on everyone’s faces this time that everyone was out of answers. I knew I might not be coming out of this. I knew I was really facing death,” Tami said.
Again, Tami was sedated and the plastic tube pushed through her vocal cords down into her windpipe. Again, a mechanical ventilator started pushing oxygen through her windpipe and into her lungs and breathing for her as she fell into another medically induced coma.
Tami later learned how doctors had given her a 13 percent chance of surviving. But no one was giving up, especially an Elkhart General Hospital emergency medicine pharmacist.
Pharmacist Jen Boehm worried about her friend in Critical Care.
“Tami was so sick. She was critically ill on a ventilator, stable but not improving at all. She’s definitely a fighter and we were all fighting for her as well,” the emergency room and critical care pharmacist said.
The best treatment option appeared to be remdesivir, an intravenous drug from biopharmaceutical company Gilead Sciences. In March, however, remdesivir was not easy to come by because it did not yet have regulatory approval.
There were two primary ways to get the drug: Certain patients could participate in a clinical trial, or clinicians could apply for ‘compassionate use’ of the drug. Gilead made special exceptions for individual patients based on clinician application to treat a serious or life-threatening condition.
The pharmacist knew this would be Tami’s best chance.
As soon as her COVID-19 test came back positive, Jen Boehm went to work.
She came into work on days off. She made numerous calls to Gilead and even more to the FDA. With Sue’s assistance, she filled out mounds of paperwork. “I felt very stressed and under pressure, but I knew if I kept pushing, we would get what we needed – the drug,” the pharmacist said.
The same day she received word that Tami was accepted into this emergency use program, Jen Boehm said Gilead announced the discontinuation of the compassionate use program for remdesivir. “No one else could get the drug for awhile until it got fast-tracked.”
Tami was very lucky.
Jen Boehm and another pharmacist compounded the first dose, and every dose thereafter, for Tami. “It was so special and our first case on the drug. I was very nervous. Nervous if it would work, if it would help.”
“I was just hoping so hard that it would help her get better.”
Tami calls remdesivir a miracle drug. “It saved my life.”
Doctors started to see improvement not long after they began treating her with remdesivir. They slowly weaned Tami off heavy sedation and in true fighter form, even with the endotracheal tube still in place, she began working on her physical recovery.
“She still had good function of her arms, hands and legs, considering how long she had been on bed rest,” nurse Jen Swain said.
Tami was able to lift her arms up off the bed, so she did bicep curls and forward-arm raises to just lift her arm straight out in front of her as high as she could off the bed. She would squeeze her hands in tight then spread her fingers out wide. She would also lift her legs straight off the bed, sometimes holding them up for an extended time.
“All while intubated,” Jen Swain said. “I was so proud of her.”
“Breathe in, breathe out,” the doctor said as Tami was taken off the ventilator for the second time. This time, she was alert and excited. She didn’t choke or gasp for air after the tube was removed.
This time, in fact, Tami smiled. And she asked for her phone so she could text her family and close friends, including pharmacist Jen Boehm.
“After realizing how much better I could breathe, I started taking pictures of myself smiling and sending them to my family,” Tami said. “I still couldn’t have visitors, but I wanted them to know how much better I was doing.”
She sent the pharmacist a text.
“I owe you my life my friend. You saved mine. Got tube out today and three more days of the trial meds. (You) saved me or I would have died. I can never repay you but will always be thankful for you.”
Jen Boehm said she is forever thankful that Tami lived.
“Feeling appreciated for helping to save a life is very special. I don’t even know how to explain it,” the pharmacist said. “But I would do it over again and again a million times if I had to.”
Still, Tami’s COVID journey was far from over.
Tami couldn’t do some of the most basic things.
She couldn’t swallow anything but little drips of water through a straw, initially, as a result of the prolonged intubation. She pushed forward and gradually moved onto frozen Italian ice and Jell-O.
She also couldn’t talk. Hoarseness is a common and especially frustrating complication after intubation. She used the dry erase board exclusively until she could start whispering. It took days before she started talking again, her voice much raspier.
It took three people to lift Tami out of bed. She couldn’t stand on her own.
“That’s when I broke down and cried,” she said.
“I was so happy that they took the tube out of my throat, and to be breathing on my own. Then when I couldn’t walk because I’d lost every bit of strength and muscle function, reality hit me all at once.”
Tami was determined to leave the hospital walking. Nurses would peek in and find her doing exercises. Or they’d find her moving around her room with a walker, slowly regaining her strength.
For someone who had always been athletic, it was difficult for Tami to know she had to frequently take breaks and rest in her chair. During those quiet times, she’d look around her room to be reminded of how many people were cheering her on.
Olaf and Elsa, Mickey Mouse, Mike and Sully from Monsters, Inc. and other Disney characters covered nearly every inch of her walls in her room.
“I wanted Tami to see how loved she is when she opened her eyes,” said Jen Boehm, who organized the effort. The pictures contained messages of strength and hope from doctors, nurses, technicians and others at Elkhart General.
Tami said it was inspiring and humbling to see the outpouring of love from people she knew and didn’t know. “When you have COVID, you’re fighting for your life without anyone being there outside of the hospital staff, who become your family.”
After 24 days in the hospital, Tami was ready to go home.
Her hospital family cheered her on again on the day she was released. After more than three weeks at Elkhart General, twice clinging to life, Tami watched and waved at the staff that stood outside the ER ambulance bay as she and Sue drove away.
It was a bittersweet goodbye after all that she had been through.
Yard signs and sidewalk chalk messages welcomed her back to her Elkhart County neighborhood. Senior citizens who live next door opened their windows to let her know they’ve been praying for her. It felt good to be inside her house again, even if she had to self-quarantine.
Sue had set up the master bedroom with a college refrigerator filled with drinks and a collapsible card table with snacks. Stacks of crossword puzzle books and puzzles awaited Tami for the several days she needed to spend in home isolation.
Family, friends and colleagues from work at the Boys’ & Girls’ Club donated more than five weeks’ worth of dinners.
“To see the outpouring of love from so many people I have known or helped all these years, I’m very thankful for that,” she said.
Doctors have told Tami she is a miracle. People have called her a hero.
But she doesn’t feel like either.
“I don’t feel like a hero. I’ve struggled with anyone putting me up on a pedestal because I didn’t feel like I did anything. I just survived a terrible virus. The heroes are the people at the hospital who helped me,” she said. Her doctors, nurses like Jen Swain who treated her like family, friends like clinical pharmacist Jen Boehm, and others at Elkhart General.
“Until COVID touches you, you have no idea how it will change you.”
Nurse Jen Swain said she will always remember her experience with Tami.
“Tami and her wife have said countless times how thankful they are for the care we have provided, and they have called me her guardian angel. This is something I will always take to heart,” Jen Swain said. “She is my miracle story that allows me to hold onto hope for other patients who are positive for COVID.”
Some days are better than others as Tami adjusts to a new normal.
She remembers how doctors wouldn’t let anyone turn on her TV during recovery until they had a chance to talk to her.
“I had no idea I was part of a pandemic. That people were dying every minute of the day,” she said. “I had no idea we were on lockdown. I had no idea people had gone into panic and there was nothing in stores, any sanitizers or cleaners. I woke up and the whole world around me had changed.”
She suffers from survivor’s guilt and PTSD.
She also lives with constant anxiety.
“I’m nervous going out in public, because I have a super big fear of how one little droplet could come home with me,” Tami explains. “I’m scared to death of getting it again. I was so close to death, I don’t know if I’d survive getting it a second time.”
Tami enjoys walking and taking short bike rides around the neighborhood. She can mow the lawn. Even as she struggles with her post-COVID limitations, she enjoys sitting outside spending time with family.
She doesn’t know if she will ever be the same physically.
At her six-month follow up appointment this fall, she will know more. “They should be able to tell me what I am facing for the rest of my life. They’ve told me my lungs will probably always have scar tissue. But I’m determined and will push and keep going. I’m one tough cookie.”
When she does venture out of the house, she wears a mask and carries hand sanitizer. If she uses her credit card, she sanitizes the card and her hands before putting the card back in her wallet. Then she sanitizes her wallet. When she gets home, her wallet and keys immediately go under a UV light on the kitchen counter.
“I constantly worry about what’s going to happen, about whether my family could get it. But I also have to move forward and live life.”
A bag of large balloons also sits on the kitchen counter. Tami uses them a few times a day to strengthen her lungs. Her right one hurts sometimes. When she feels weak, she uses an inhaler to help her catch her breath.
Surviving COVID means she no longer sweats the small stuff.
“When someone puts dishes in the sink instead of the dishwasher, or when the dog gets loose, or the floor is dirty, these things mean nothing when you’re lying in a hospital bed trying to survive,” she said. “Now I want to love more. This made my relationship with my wife, family and friends tighter.”
What does Tami want people to know?
The virus doesn’t discriminate. None of us are invincible. Wear a mask. Social distance.
“I’m 52, I had no health problems, and I nearly died,” she said. “I am telling my story with the hope that it sends a message that anyone can get it. But if I can survive, I want to be an inspiration to everyone else to never give up.”