Dianna Howell is fighting for her life.
The 58-year-old North Albany resident is one of 20 patients in the Oregon Health & Science University heart transplant program who have been desperately seeking other options for the lifesaving procedure since Aug. 24, when the Portland teaching hospital made the stunning announcement that it was suspending operations.
OHSU officials said they were taking the extraordinary step of “pausing” the state’s only heart transplant program for two weeks because one of the program’s four cardiologists had left the staff and two others had plans to quit by the end of September. Within days, the university said the fourth cardiologist was leaving too.
As a result, OHSU said, it would not be able move ahead with transplants for the 20 patients already on the wait list or five others who were candidates for transplant evaluation.
After initially saying it would continue to provide aftercare for its 327 post-transplant patients, the university announced Friday it would not be able to do so “on its own” after Oct. 1. It also extended the transplant program’s two-week hiatus indefinitely, with no publicly announced timeline for restarting.
The news left Howell reeling, unable to understand what had happened.
“It’s not a medical problem; it seems to be a personnel dispute,” she said. “And it could kill me — I don’t have a lot of time left.”
Hospice or transplant?
Howell had her first open heart surgery in 1996.
After experiencing chest pains and shortness of breath, she went into the hospital for an angiogram, a diagnostic procedure that involves inserting a catheter into a coronary artery. But something went wrong, and the artery was severed.
“I had to have an emergency bypass,” Howell recalled.
The doctors diagnosed her with angina and started treatment. Even so, Howell’s health problems persisted, and two years ago she collapsed at work.
She went back into the hospital for more tests, and doctors implanted a pacemaker and defibrillator. But “the symptoms weren’t adding up,” Howell said, so they sent her to the Mayo Clinic in Rochester, Minnesota, one of the nation’s leading medical centers.
There, she finally got a definitive diagnosis: apical hypotrophic cardiomyopathy, a rare condition that causes her heart to misfire with the slightest exertion.
“Anytime I do any kind of exercise, my heart doesn’t work right,” she said. “I can’t breathe.”
The doctor ticked off a list of possible treatments but then told Howell none of those would work in her case because her condition was too severe — she was already in end-stage heart disease.
“Your only two choices,” Howell says he told her, “are hospice or a heart transplant program.”
Hope and heartbreak
Back in Oregon, Howell got in touch with Oregon Health & Science University. OHSU’s heart transplant program dates back to 1985, when the first such procedure in the state was performed by renowned surgeon Albert Starr.
After extensive evaluation to determine if she would be a good candidate for a transplant, she was admitted to the program and placed on the waiting list for a heart in July 2017. Howell said she’s received stellar care ever since, driving up to Portland once a month to meet with a cardiologist and developing strong relationships with the program’s nurses and other support staff.
Howell has a few factors that make her a little bit tougher to match than some other transplant patients, but over time she moved up on the waiting list.
In November, she actually got a call that a suitable donor heart had become available and rushed up to OHSU for her transplant. But as she was being prepped for the procedure, doctors discovered a previously undiagnosed ulcer that required treatment with blood thinners, and the transplant surgery was called off at the last minute.
Now she’s running out of time. When she was admitted to the OHSU program, doctors estimated she had about 16 months to live without a transplant. By that calculation, Howell has just three months left to get a new heart before her own stops beating.
And it’s not just her, Howell notes. By allowing the heart transplant program to fall apart, she says, OHSU officials may have condemned some of the 20 people on its waiting list to death.
“People die every year, lots of them, because they’re on the heart list and can’t get a new heart in time,” she said.
“By doing this and making us start over (with a new program), they’ve decreased all of our chances considerably. This is a decision that’s going to kill people.”
Starting from scratch
OHSU insists it has been working diligently to hand off patients to other heart transplant programs in the region, but Howell notes the process is not a simple one. Every program has its own criteria for evaluating candidates — and its own list of patients already waiting for a suitable donor heart.
Howell has been in contact with programs at the University of Washington Medical Center in Seattle and the Mayo Clinic campus in Phoenix, Arizona. Both are good programs, but both are far from home and her support network of family and friends — an important consideration, especially during the 90-day post-op period when she would be required to live near the transplant center that performed the surgery.
More to the point, neither program has accepted her yet.
The University of Washington said this week that eight OHSU patients had been accepted into its program, but Howell said she’s not on that list.
And OHSU announced on Friday that all 20 of the patients on its heart transplant wait list “either have transition plans in place or have elected not to transfer to another transplant center at this time,” but Howell said she’s not on that list, either.
She said she has a tentative appointment to meet with doctors at the Seattle hospital on Wednesday, but that’s only a first step toward getting enrolled.
“Most of the process I’m going to have to go through again,” she said.
“That’s not a transition plan — that’s a hope.”
Searching for answers
Since OHSU announced it was suspending the transplant program, Howell and her husband, Jeff, have been doing everything they could think of to call attention to the plight of patients, including contacting their legislators.
State Sen. Sara Gelser, whose district includes the Albany and Corvallis areas, said she looked into the matter but there doesn’t seem to be much lawmakers can do.
“OHSU is a private institution,” she pointed out.
And even if the state did have jurisdiction over the hospital, she added, it no longer has the personnel to safely continue its program.
“We can tell them to do transplants until we’re blue in the face,” Gelser said, “but if they don’t have the physicians, they can’t do it.”
Throughout all the furor over its decision, OHSU has declined to explain the reasons for the mass exodus of its transplant specialists, citing confidentiality concerns. University officials did not respond to questions submitted to the OHSU media relations office by the Gazette-Times on Friday.
The resounding silence has left the Howells fuming.
“Nobody’s admitting what went wrong, why they weren’t prepared for this,” Jeff Howell said.
“The question I ask everyone is, how the hell did you let this happen? And none of them have any answers.”