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Stephanie Baker Welch (right), who requires a double lung transplant due to idiopathic pulmonary hypertension, sits with (from left) husband Jason Welch; daughter JosaLynn Poe, 20, who is expecting Welch’s first grandchild in December; and sons Seth Baker, 16, and Alistair Welch, 8.
Stephanie Baker Welch (right), who requires a double lung transplant due to idiopathic pulmonary hypertension, sits with (from left) husband Jason Welch; daughter JosaLynn Poe, 20, who is expecting Welch’s first grandchild in December; and sons Seth Baker, 16, and Alistair Welch, 8.
Stephanie Baker Welch’s life turned upside down quickly in the fall of 2019 after she experienced shortness of breath while walking her children to their bus stop. Several months later, she was diagnosed with a life-threatening illness, idiopathic pulmonary hypertension, and in May 2020, she could no longer do simple daily tasks like unloading a dishwasher without passing out due to lack of oxygen to the brain. Welch was hospitalized locally and transferred to Vanderbilt University Medical Center, where she remained in critical care while specialists created a treatment plan.
Although her disease continued to progress, she remained stable enough to manage care at home until December 2021, when she was put back in critical care at VUMC. Medication changes were made and she did not require hospitalization again until March 2022, when she returned to Vanderbilt. The news was devastating: Her lungs have deteriorated to the point that she now needs a double lung transplant or she will not survive.
A GoFundMe account has been set up at https://gofund.me/1b919e5f to raise funds for expenses associated with the transplant. The fund is administered by Welch’s cousin, Melissa Baker Walker, with Welch as the beneficiary. The goal is $10,000; to date, about $3,800 has been raised.
happened overnightWelch’s first inkling that something was wrong was the unexpected shortness of breath experienced while walking her children to their bus stop.
“It happened overnight,” she said via email interview as she is no longer physically able to hold a conversation. “I had been walking more, losing weight, so I was confused. My oximeter (an instrument for measuring the proportion of oxygenated hemoglobin in the blood) showed my oxygen stats were running low.”
The shortness of breath continued, with oximeter readings as low as 77% oxygen saturation. “I was put on oxygen, so I was always tethered to a machine at home or carrying a machine,” she said.
According to the Centers for Disease Control and Prevention at https://www.cdc.gov, pulmonary hypertension happens when the pressure in the blood vessels leading from the heart to the lungs is too high. When the pressure in this artery gets too high, the arteries in the lungs can narrow and then the blood does not flow as well as it should, resulting in less oxygen in the blood. There is no cure for pulmonary hypertension. However, there are many different types of treatments, including inhaled medicine, medicine given through the veins under the skin, medicine to reduce swelling in the feet, and oxygen therapy.
getting worseEven with these therapies, side effects can be difficult to deal with.
“I am on multiple medications which have horrible side effects,” Welch said. “My doctor at Vanderbilt has me on multiple vasodilators to open up the blood vessels in my lungs. One medication is run subcutaneous 24/7, using many of the same equipment diabetics with a pump use. Other than the medicine that goes into the pump, the other main difference is the pain the medicine can cause at the site of placement. This pain can last roughly 10 days and is very excruciating. A site can last for weeks or months, but those days of pain can cause me to be bedridden and sick.
“I also have to see my Vanderbilt team frequently to check the progression of my disease,” she said. “I have a nurse who checks my vitals once a week at home. I also receive physical and occupational therapy to prevent me from losing strength since I’m not as capable as I once was.”
Her symptoms continue to worsen.
“I am now at the stage where bathing is an extremely difficult and exhausting task, even with a shower chair and a lower shower head that’s removable,” Welch said. “My kidneys are starting to show damage from the diuretics, so now I am being screened for kidney failure.”
Welch’s condition is considered idiopathic, referring to any disease or condition which arises spontaneously or for which the cause is unknown. “At this time, they can’t find a known connection to my illness,” she said. “They feel I had this a decade or more before the symptoms became this severe.” The disease, she said, is rare and research is limited.
SupportAs the need for a transplant becomes more and more critical, Welch, a 1997 graduate of William Blount High School, says her support system keeps her going, including her husband, Jason Welch, a 1999 graduate of Heritage High School; her daughter, JosaLynn Poe, 20, who is expecting Welch’s first grandchild in December; sons Seth Baker, 16, and Alistair Welch, 8. Her parents, David Carl Baker Jr. and Connie Susan Green Martin, as well as other family members and friends are also helping. Since she is no longer able to navigate the steps to the rental home she shares with her husband and children, her husband’s longtime friend, Jeremy Nichols and his wife, Tabitha, invited Welch to live with them to relieve that burden.
“I’ve been lucky enough to have a great support system that allows me to talk about my needs, think outside the box to find ways to get them met, allow me to share my emotions and be realistic,” Welch said. “I’m really excited to be a grandmother, and I know the only way I’ll get to meet my grandbaby is with a new set of lungs. My cousin Melissa has been amazing with all I’m going through. She’s one of the few who have really kept me going lately.”
Melissa Walker, who set up the GoFundMe account, said Welch is her first cousin and first friend. “She is only six months younger than I am,” she said.
Walker said the transplant will be done at Vanderbilt, and her cousin will live in Nashville for three months after the surgery. Funds raised will go toward room and board for both Welch and a caregiver, hopefully her daughter depending on the daughter’s pregnancy. Funds will also be used for travel expenses for her husband and sons, medical copays and any expenses insurance won’t cover, and expenses associated with her outpatient testing in Nashville, which require a stay of several days. They will also go toward any unpaid leave her husband may have to take from his work.
“If something happens and she doesn’t get on the transplant list for some reason, and if the worst happens and she doesn’t survive, any funds remaining from her journey to get on the transplant list are going to go to pulmonary research and to pay funeral expenses so her husband and children won’t have to worry about that,” Walker said. “We don’t like to talk about that, but it is a reality of what might happen. She’s been on oxygen for several years now, and they said it’s gotten to the point where she will need a lung transplant or she will die.”
To help with fundraising, visit https://gofund.me/1b919e5f.
Contact Linda Braden Albert at LindasInkyfingers@
A Go Fund Me account to benefit Stephanie Baker Welch has been set up at https://gofund.me/1b919e5f to raise funds for expenses associated with a double lung transplant.
Linda Braden Albert worked as a feature writer and editor at The Daily Times. She is now the editor of Horizon Magazine and a columnist.
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