A conversation with recent Bethel graduate, Anna Jeter (17’), on preparing to receive a combination heart-lung transplant after a long battle with Pulmonary Hypertension.
By Christine Schuster
When Anna Jeter was just four years old, she was diagnosed with Pulmonary Hypertension – a rare, terminal disease which constricts the vessels surrounding the lungs. She was given a prognosis of 3-5 years. “It makes it really hard to breathe and eventually it sends you into heart failure because it’s so much work for your heart to pump against resistance that shouldn’t be there,” Jeter says.
In the spring of 2017, 18 years after her diagnosis, Jeter graduated from the Department of Nursing and became a Registered Nurse. “My parents and I are just in awe of that, for a kid that started where I did,” Jeter says.
Growing up, Jeter responded well to many first trial treatments for Pulmonary Hypertension. These treatments include an ongoing IV medication, which she receives through a pump that attaches to a central line she had put in when she was four.
Despite the functional life that Jeter has lived on her treatments, patients of Pulmonary Hypertension still arrive at a fork in the road. “It leads to this option where you are either going to get worse super fast or you can do a heart-lung transplant,” Jeter says.
Jeter is making arrangements to potentially receive a heart-lung transplant sometime within the next year – a decision that comes down to taking advantage of what’s called the transplant window. “They say it’s when you’re sick enough that you need organs but not so sick that you won’t do well,” Jeter says.
She began pursuing transplant options at Mayo Clinic during her freshman year at Bethel. Recently, she’s been working with a transplant team at Stanford in California, where the average wait time to receive organs is significantly shorter (1-2 months at Stanford versus 6-12 months at Mayo). Despite these expected wait times, there is no accurate way to predict how long the wait will be, regardless of the location. Jeter and her family plan to travel to Stanford in California to evaluate her options in January. She could potentially become listed on the official transplant wait list at this time, although there is still some uncertainty about whether or not she has reached her transplant window.
“There can be days where it is so frustrating to go forward with this,” Jeter says. “Transplant does not come without its issues. It’s not this cure-all situation. They say it’s trading one disease for another.”
Life after a transplant
Jeter’s life will change dramatically following the transplant. “Lung transplant is about the highest risk [transplant] you can get. You breath in air, it’s [the lungs] always exchanging interaction with the environment. It’s always exposed, whereas your heart is completely protected in a way,” Jeter says.
“Some days it feels like there is just no end in sight, and really for me there isn’t. But then it’s about looking back and saying, ‘Wow, look where I am and look what I’ve been able to do with these circumstances. What else can I accomplish and how can I find purpose in all of this.”
Being young and otherwise healthy, Jeter says she is encouraged about being a good transplant candidate. Being smaller than most people who are competing to receive a heart-lung transplant (typically older men), she has a slight advantage to be able to match with smaller organs. A match will need to have the same blood type and lungs measuring within a centimeter of her own. Additionally, the donor’s organs will need to pass a close inspection that checks for signs of smoking or any other issues with the health of the organs.
Following the transplant, she will take immunosuppressant drugs to prevent her immune system from attacking the foreign tissue. This increased risk of illness will require her to avoid crowds and wear a mask in public. A main concern for Jeter is living with the mental and physical side effects of medication. “Some days it feels like there is just no end in sight, and really for me there isn’t,” Jeter says. “But then it’s about looking back and saying, ‘Wow, look where I am and look what I’ve been able to do with these circumstances. What else can I accomplish and how can I find purpose in all of this.”
Jeter finds support through her faith, family, friends and others battling Pulmonary Hypertension. “You get a point where you don’t want to be fearful anymore and you have to give the worry somewhere. Faith has been an incredible way for me to unburden myself,” Jeter says. She also says that coming to a place where she is comfortable being open about her health has built a network of trusting and supportive relationships around her that will be invaluable when the time for her transplant comes.
As for Jeter’s nursing career, she has been told that it would be wise to avoid direct patient contact following transplant, because of the infection risk. Yet she remains incredibly thankful for her experience as a nursing student. Recently, she gave up her nursing job so she could focus on preparing for the transplant. In the meantime, she’s pursuing her passion of writing poetry and pushing herself creatively, while working for a small art shop in Excelsior.
“It’s never going to be an easy life that I lead, but that doesn’t mean I can’t take ownership of it,” Jeter says. “What a privilege it is to carry this with grace for my God and be able to give glory to him and his strength through it, so that people can see that shining through. I think that’s a huge blessing. I get to see such a big God through this. I get to see him in ways that other people will never see him in their whole life and that’s an honor. It’s not easy, but it’s worth it. And I’m not slowing down, so long as that remains true.”