Though all of her tests were coming back normal, Tedi LaMere knew that something was seriously wrong. First, she had issues with her heart that were so severe she had to travel from her home in Montana to Denver and then Seattle. After that, she began having difficulty breathing. “I was very athletic,” she says, “bow hunting, taekwondo, fitness freak, all of that. I was very healthy, and suddenly I could barely walk up a flight of stairs.”
Still, with nothing concrete to explain how she was feeling, Tedi’s doctors were reluctant to take her concerns seriously, even though she’d worked for years in the medical field as a respiratory therapist. “They wanted to say, ‘Ah, it’s in your head,’” she says, “it’s menopause, you’re too tired, you’re working nights.’” To try and be a cooperative patient, Tedi asked to be transferred to the day shift, but still, her health deteriorated, as did her confidence in the quality of her care.
“Not to bash any doctors in Montana, but a lot of them come here to retire, so they tend to be pretty conservative,” she says. “They told me, ‘Change your diet.’ Well, if cutting out sugar would help, trust me, I would do it.’”
At the same time, Tedi was also facing skepticism from friends and family members. “A lot of the other autoimmune diseases, like lupus or rheumatoid arthritis, there’s a blood test they can do to say, ‘Yes, you definitely have this,’” she says, “So, people are more accepting that you’re really sick. When you have relapsing polychondritis, your tests are normal, but you’re actually sicker than if you had cancer.”
Eventually, Tedi saw a pulmonologist who was also a friend, and for the first time, she was really listened to. The pulmonologist ordered a dynamic CT scan and discovered that every time Tedi exhales, her large airway collapses. Because the cartilage there was so damaged, the doctor suspected relapsing polychondritis, so Tedi finally had a plausible explanation — but not a treatment plan.
“It’s a rheumatologist that actually treats this, and my rheumatologist wasn’t convinced it was RP.” Tedi says.
“She didn’t want to be giving me these strong drugs, so for a year, I went untreated. But you really have to treat this aggressively from the get-go. Once it gets out of control, it’s like a forest fire.”
In the time between her pulmonologist’s preliminary diagnosis and when Teri started treatment, the collapse on one side of her airway went from 65 percent to greater than 99.
And still, Tedi didn’t have a definitive diagnosis, which would require a trip to NIH. For a year, she was too sick to travel, let alone work, and by the time she was healthy enough to make the 2,000-mile journey, her husband was the household’s only breadwinner. “He was taking travel assignments to make up for the lost pay,” she says, “but still it wasn’t enough to travel out there. You can want to as bad as you want to, but if you don’t have the money, you just can’t.”
By this point, Tedi was passing out several times a day, unable to drive, and having more trouble breathing, so she looked into loans to finance the flights. “It’s frustrating when you know what damage is being done, and nobody is doing anything about it because they’re too afraid to touch you,” she says. “But I thought, ‘I am going to die if I don’t do this.’”
Thank to Friends of Patients at NIH, Tedi and her husband were able to fly to the National Institute of Health in December of 2018. Tedi credits the medical team there with saving her life, so it was bitter sweet when her 29-year-old daughter also had to make the visit to have her own RP diagnosis confirmed. In addition, they suspect that Tedi’s 11-year-old granddaughter also suffers from the autoimmune disorder. “I worry about her more than me,” she says.
Also troubling for Tedi are the patients she’s seen who opt for palliative care because they can no longer manage both the disease and the attending pain. For the most part, Tedi says she’s able to do both, though her original doctors in Montana, an area especially hard-hit by the opioid epidemic, were reluctant to prescribe her the medications she needed. Thankfully, the “fantastic care team” she now sees, at the Great Falls Clinic, works closely with NIH to form a treatment plan — another reason why her trips to D.C. are so important.
During her latest visit to NIH just a few weeks ago, the doctors discovered a clotting disorder causing chronic pulmonary embolism and a problem requiring a heart biopsy. “Not good news at all,” she says, “but at least I have answers, and now they are working on a treatment plan, so for the people that have so generously donated, I’m one life they have saved.” And just as important as the quality of the medical care at NIH is the psychological comfort of finally being taken seriously. “I can deal with it if I just know what I’m dealing with and know where to get the answers,” she says. “Once you find some doctors that actually know and care about R.P. — that’s more precious than gold.”