BY GABE LICHT
DELANO, MN When Teri Starkey starts coughing, she never knows how it will stop.
Will it subside after a moment or two?
Or, will it lead to a lung bleed, with her coughing up blood until she vomits?
This is one of the many uncertainties Starkey faces as she lives with cystic fibrosis.
Starkey and her family are facing those uncertainties head on, as they move from Delano to North Carolina, where she plans to undergo a double lung transplant at Duke University.
Diagnosed as a teenager
“Around sixth grade was when I started noticing it more as a kid,” Starkey said. “I was just coughing a lot and always being sick. I remember teachers asking me, ‘Are you OK? Do you need to go get a drink of water?’”
As problems persisted, possible diagnoses included bronchitis, asthma, and allergies to pets, even though Starkey was never tested for allergies.
Finally, her grandfather offered to pay for her to be seen at Mayo Clinic when she was 14.
“They either thought, without getting my sweat test results, ‘Either she has chronic asthma or she has cystic fibrosis,’” Starkey said.
Her sweat test confirmed she had cystic fibrosis.
“I was in the hospital for, I think, two or three weeks when they first diagnosed me, on IVs and stuff,” Starkey said.
The diagnosis hit her hard.
“Getting this disease on you during the start of high school was tough, so I rebelled,” Starkey said. “A lot of people, I didn’t tell them what was really wrong with me or what was going on.”
Throughout her college years, Starkey was not very compliant with taking her medications, she said.
That changed when she met her husband, Eric Starkey.
“When I met my husband, he was like, ‘You need to take care of yourself,’” Starkey said.
The couple has an 8-year-old daughter and 5-year-old son.
Her first pregnancy went well, but her second pregnancy did not.
“I was really sick,” Starkey said. “I barely gained enough weight. They had me on IV lipids, where they’re putting fats right into your veins. They were trying to put weight on me before they were going to induce me. With CF, too, everyone is different, but after having a baby, my lung function has paid the price.”
Taking care of two children in addition to taking care of herself is also a challenge, “But, obviously, I wouldn’t trade it for the world,” Starkey said.
For her children, her health concerns are normal because it is all they’ve ever known.
“They know mommy is sick a lot,” Starkey said. “They know mommy has bad lungs. They don’t know anything different.”
More bad news
What Starkey thought was a routine doctor’s appointment in March turned into a life-changing situation when she learned she would need a double lung transplant soon due to decreasing lung function.
“He kind of just dropped the bomb on me: ‘Teri, we can’t transplant you here because of your microbacterium. You’re a high risk case. You need to be looking other places because you’re going to have to move,’” Starkey said.
The news caught her off guard, and she struggled to keep her composure.
“My hope was, since I’ve been doctoring at Mayo for a good portion of my life 18 years that somehow they’d be like, ‘Yeah we’ll transplant you,’” Starkey said. “But, in the transplant world, it’s not just my doctor wanting to do it. A whole team has to approve you. He actually tried proposing my case twice to the transplant people at Mayo, and both times they said, ‘We can’t do it at this time.’”
Searching for a solution
Mayo started reaching out to other health care facilities to find one that would perform the double lung transplant for Starkey despite her microbacterium.
“Some denied us right away,” Starkey said. “Some were like, ‘Yes, send us your information.’ So I’d have Mayo send all my stuff there and check it out and get back to me with a yea or nay.”
Because Eric and Teri aren’t fans of winter and are fans of the ocean, they decided to look for treatment options on a coast.
University of North Carolina in Chapel Hill denied Starkey, but nearby Duke in Durham was still interested, as was the University of California San Francisco.
“But then, once we started researching a ton as far as living expenses and things like that, UCSF was quickly out of the picture,” Starkey said. “We decided to go out to Duke to see what they’d say.”
Moving to North Carolina
Though the transplant has not yet been fully approved, the family will move to North Carolina in August to start the process.
“Out there, they don’t list you right away,” Starkey said. “They wait until you’re in a window of sick enough to get a transplant but healthy enough to survive a transplant. They have that down to some kind of science of when they decide to list you.”
Due to her microbacterium, Starkey knows her lung function could drop quickly.
“We have to make this move sooner rather than later because, if I drop any lower, who knows how I would even do with the move out there,” Starkey said. “So far, we’re ahead of the game, but they’re willing to take me on.”
That could change.
Starkey went through a two-day transplant workup that went well, but a five-day transplant workup is also required.
“They check all your organs for cancer,” Starkey said. “They check your heart for any issues there because, obviously, they want your heart and organs as good as possible going into the transplant . . . I need to be seeing them every three months until they say, ‘OK, it’s time to list you.’”
Starkey acknowledges that moving to North Carolina does not guarantee the transplant will take place.
“We’re really just taking a chance,” Starkey said. “We could get out there, and in six months, I go through my five-day workup and they see cancer somewhere or something’s wrong with my heart and say, ‘You’re no longer a candidate for transplant.’ In that case, I’d have to see if anyone else will take me. Otherwise, it’s move home, be with my family, and prepare to die. These are things I have to think about at 33, which is weird. This is still a huge risk, doing this, but we don’t really have any other options, so you do what you have to.”
If the transplant is successful, that does not mean the risks go away.
“After transplant, you’re on tons of anti-rejection medications that can destroy your body and start not working,” Starkey said. “You’re either on another list for another transplant or nothing. It’s a roller coaster ride for sure.”
Support of fellow CFers
Getting to know fellow CFers individuals with cystic fibrosis who have had successful double lung transplants at Duke has helped calm Starkey’s fears. One CFer had the procedure 11 years ago, while the other received new lungs 16 years ago.
One Facebook group is full of people who have had successful transplants at Duke.
“That’s been reassuring,” Starkey said.
Starkey has been able to get to know many fellow CFers through Facebook and blogs.
CFers encourage one another and celebrate success together.
“They’re always checking in and making sure we’re doing what we’re supposed to do to stay alive,” Starkey said.
Though Starkey hopes insurance will cover the entire cost of the transplant itself, there are many other expenses.
Eric will need to be off work for at least three months to care for Teri, and her parents also plan to live in North Carolina to help for a period of time.
Following the transplant, Starkey will need expensive anti-rejection medications, of which insurance will only pay a small portion.
Starkey’s family has established a YOUCARING page where individuals can donate at www.youcaring.com/teri-starkey-656471.
There will also be a fundraiser from 4 to 11 p.m. Saturday, July 29, at the Litchfield Eagles Club.
It will include a meal of walking tacos donated by Applebee’s in Hutchinson and Delano, a silent auction from 4 to 6:30 p.m., and the band October Son.
Families are welcome.