These days, every breath is a struggle for Judy Weimer.
That’s the reality of living with pulmonary arterial hypertension, a chronic, incurable disease of high blood pressure in the lungs.
It’s bad enough on a cool, dry day, but when the weather is hot and humid, the struggle worsens.
Weimer, 64, knows she’s in the fight of her life—and she’s not giving up.
Working with her Spectrum Health doctors and therapists, she’s doing everything she can to manage her symptoms, maintain her stamina and avoid illness while she waits to be evaluated as a candidate for lung transplantation.
The hope is that by this time next year Weimer may have a new pair of lungs, the gift of an organ donor.
“She has a problem with profound low blood oxygen that needs high amounts of oxygen,” said Reda Girgis, MD, medical director for lung transplants at the Richard DeVos Heart & Lung Transplant Program at the Spectrum Health Fred and Lena Meijer Heart Center.
In addition to her pulmonary hypertension, which began giving Weimer trouble in 2012, Dr. Girgis suspects she has a rare, untreatable lung disease called pulmonary capillary hemangiomatosis. But confirming this diagnosis would require a lung biopsy, a procedure too risky for Weimer to undergo.
The road to the transplant list has been rocky for Weimer, a resident of Ionia, Michigan. For insurance reasons, she was first referred to the transplant program at an institution 100 miles from home.
After a lengthy evaluation process, her case was turned down.
The grounds for her denial there were “shaky,” according to Dr. Girgis. “None of those were really strong reasons to deny her.”
So Dr. Girgis’ transplant team has filed an appeal with her insurance company to see if they will cover a transplant at Spectrum Health.
If the Spectrum Health transplant team approves her as a candidate, she’ll be put on the waiting list and assigned a lung allocation score between 0 and 100 based on the national calculator.
Though there are no guarantees that Weimer will make the list, Dr. Girgis thinks the likelihood is high, and he’s optimistic about her chances to eventually receive a double-lung transplant.
“The more likely you are to die while you’re waiting, the higher the score,” he said. “So based on her high oxygen requirement, that score is going to be fairly high, and therefore I don’t anticipate her waiting for very long.”
Three-quarters of the patients on Spectrum Health’s lung transplant waiting list receive their transplant within 18 months of being placed on the list, he said, and “many of them are transplanted much sooner than that.”
In the meantime, Weimer is doing what she can to prevent pneumonia and keep her strength up.
An important piece of the puzzle is the specialized in-home care she receives from the Spectrum Health At Home Visiting Nurse Association.
Kaelee Brockway, a home-care physical therapist, first met Weimer in 2013. She’s worked with her on and off ever since, along with a nurse, Jaime Barger, RN, who has helped Weimer carefully manage her symptoms, medications and diabetic diet.
Brockway and Barger began helping Weimer again in late June, after she came home from a five-day hospitalization because of extreme weakness and difficulty breathing.
Brockway’s goal is to rebuild Weimer’s stamina to where it was six months ago, when they last did physical therapy together.
“We had worked a lot on the strengthening of her lung muscles,” Brockway said. “Her endurance was very low because she was so short of breath, and she had made some amazing progress.”
Weimer has high praise for the Visiting Nurse Association team.
“It’s like seeing an old friend when they come, you know, because they help you so much mentally, emotionally, spiritually and physically,” she said. “They’re just amazing people.”
Faith and family
Given the limitations and uncertainty she lives with, Weimer has a remarkably positive outlook, Brockway said. “She frequently told us that we were God’s gift to her, which was so sweet.”
When asked what keeps her going, Weimer cited family and faith.
“My daughter, my husband, my son, my grandchildren, my great grandchildren—and my God,” she said. “I just try to follow his lead. I just give it all to him. And his shoulders are bigger than mine.”
This makes the frustrations easier to bear, Weimer said—frustrations like not being able to work in the garden with her daughter, Liz.
“Most of the time I have a lot of energy; I just can’t use it because of my lungs,” she said, glancing out the window from her recliner.
The next few months will be a challenge for Weimer and her family as they wait for the future to unfold. But she’s firm in her belief that whatever happens will be OK.
“There’s an old song that says, ‘I’m a winner either way, if I go or if I stay,’” she said. “And so that’s the way I’m looking at it.”