Dianna Howell is living on borrowed time.
A 59-year-old North Albany resident with end-stage heart failure, Howell was accepted into the Oregon Health & Science University heart transplant program in July 2017.
At that time, doctors told her she had about 18 months left to live without a new heart.
That grim milestone came and went around the end of last year, and Howell is still alive and kicking — no thanks to OHSU, which was forced to pull the plug on its heart transplant program last August, when all four of the program’s cardiologists decided to leave for reasons that have never been fully explained.
Like the other patients on the waiting list for a new heart through OHSU, Howell was forced to scramble to find a new transplant program that would take her in. After repeated visits to the University of Washington Medical Center in Seattle and the Mayo Clinic in Phoenix, she was finally accepted into the UW program in February.
Even then, however, she still wasn’t added to the transplant list. That didn’t happen until Friday, after a final round of test results came back showing that Howell met all of UW’s criteria for transplant candidates.
After spending the last seven months in medical limbo, Howell said, the news came with an enormous sense of relief. But she knows she’s not out of the woods yet.
All she can do now is hope and pray that a suitable donor organ becomes available before her own badly damaged heart gives out on her.
“It’s up to God now,” she said.
A turn for the worse
Howell almost didn’t live long enough to get a second chance at a new heart.
There were 20 people on the wait list at OHSU when the Portland medical center abruptly announced that it was suspending Oregon’s only heart transplant program indefinitely.
Most of the others were picked up relatively quickly by another transplant program, but the sudden influx of patients from OHSU strained resources elsewhere in the region. Plus, Howell’s case was complicated, with some additional risk factors other patients didn’t have.
Even though she was getting maintenance care locally and through the Providence Heart Institute in Portland, months went by and she still had not been admitted into an accredited transplant program, a necessary first step before getting on the waiting list for a donor heart.
Her husband, Jeff, remembers vividly what that felt like.
“We thought Seattle was going to be perfect,” he said. “And then we thought Mayo (in Phoenix) would work.”
Each time, however, after going through a rigorous series of tests and interviews, they would be told that Dianna’s case was different, that she just didn’t quite fit the program’s criteria for transplant candidates.
“Basically, it would be a week of going from appointment to appointment to appointment to appointment for five days, and then, ‘Nah,’” Jeff recalled.
“It’s been frustrating and a little depressing,” he added. “But you deal with it and keep going on.”
Early this year, Dianna Howell’s health took a dramatic turn for the worse.
Her heart condition — she has something called apical hypertrophic cardiomyopathy, or AHCM, that sometimes causes her heart to beat erratically with exertion — was growing more severe. She started experiencing frequent, crippling bouts of weakness and was afflicted with excruciating chest pains.
She spent most of January and February in the hospital, bouncing back and forth between Good Samaritan Regional Medical Center in Corvallis and the University of Washington Medical Center in Seattle. At one point, she had to be taken to UW by Life Flight for treatment.
“It was getting pretty scary,” she confided. “We kind of thought this is it, because it wasn’t getting any better and I still wasn’t listed.”
A miracle, but no cure
Then her doctors decided to try something different to stabilize her wildly beating heart — disopyramide. The drug was well established for use in heart patients, but there were significant concerns that it would interact badly with Howell’s other medications.
With few options left to choose from, the doctors decided to roll the dice.
The gamble paid off.
The chest pains subsided. Howell regained some of her old strength — she’s still confined to her home for the most part, but now she can get out of bed, go to the bathroom by herself, go up and down the stairs without assistance.
Early this month, she even got out her wheelchair and portable oxygen tank and left the house long enough to attend an Oregon State baseball game with her husband. It wore her out a bit, but it felt wonderful to be out in the world again for a couple of hours.
“I fell asleep, put my head on his shoulder, but I woke up for the win,” she said. “That was pretty exciting. For a couple of years I wasn’t well enough to go.”
Howell calls the drug “miraculous” — she’s a woman of deep faith, and she uses the word literally — but she knows it’s not a cure.
She still needs a new heart.
“This is a temporary fix,” she acknowledged. “But it’s buying me time.”
A life that counts
Time is something Howell thinks about a lot.
How much she may or may not have left.
How best to spend however much remains to her.
“When I had my first heart attack, I could have died,” she said. “So I figured I should make my life count.”
That was in 1996, when she went into the hospital for an angiogram to try to figure out why, as an otherwise healthy woman in her 30s, she was experiencing chest pains, shortness of breath and other worrisome symptoms.
During the procedure an artery was severed, and Howell went into cardiac arrest. The doctors saved her life, but they still couldn’t tell her what the underlying problem was.
Howell took the episode as a sign.
If her days were numbered, she reasoned, she was going to make the most of them.
Although she still had symptoms, they weren’t too severe and she tried not to let them slow her down. She joined boards and committees. She was active in service groups. She started her own company, BlueSun Inc., an employment and job training service for veterans and individuals with disabilities.
And then one day in 2016 she collapsed at work.
This time doctors implanted a pacemaker and defibrillator, but her symptoms continued to mystify. Finally a specialist at the Mayo Clinic in Rochester, Minnesota, was able to trace the cause to an unusually severe case of AHCM.
He gave her two options: Get into a transplant program or check into hospice care.
Time is a funny thing. It sometimes seems to move at very different speeds, depending on circumstances.
After her 2016 collapse, Howell found herself confined to her home for the most part. Unable to do all the activities she was used to doing before, time seemed to slow to a crawl.
At first she read a lot, but eventually she got to the point where even reading left her exhausted. Her daughter began bringing her books on tape, which helped to while away the hours.
Although she’s never been much of a television viewer, she started watching baseball games and “The Price Is Right.” She signed up for Hulu so she could stream reruns of cop shows she’d enjoyed in her youth, programs like “Adam 12” and “Dragnet.”
“It’s been a long time since I’ve had what most people consider a normal life,” she said.
After OHSU cut her loose and she had trouble getting enrolled in another transplant program, Howell thought her time was running out. The days seemed to be slipping away.
Now that she’s on the wait list again, she’s thinking in terms of time management.
When an organ donor dies, an alert goes out to transplant programs in the region. If the donor’s heart is a good match for a transplant candidate on the waiting list, the candidate is notified and the surgical team is activated. After that, it’s a race against time to get the organ and the patient to the transplanting hospital while the heart is still viable.
“I have to have my phone with me all the time, have it turned on and charged, even in church,” Howell said.
“Now we’re on 24-hour call for that. We have to have everything prepared and ready to go.”
It’s a tight window. From the time the Howells get the word that a suitable heart has become available, they’ll have about three hours to get to the UW Medical Center. The couple’s insurance company has two jets on standby just for transplant patients, but even so they’ll be cutting it close.
“They’ll meet us at the Corvallis airport,” Jeff said. “We pretty much have to be within an hour of Corvallis to do it.”
And getting back on the wait list has had another sort of impact on the couple. For the first time since either of them can remember, they’re making plans for the future — a future in which Dianna, God willing, has a new heart.
“We’re planning a trip to Disneyland in December,” she said. “We can change the date if we need to.”
‘A huge difference’
On March 14, OHSU made headlines by announcing plans to restart its heart transplant program — on the same day the Providence Heart Institute announced it was going to start a program of its own.
Suddenly, after being without a heart transplant program since last August, Oregon is about to have two of them. But it will take months to recruit transplant surgeons and other specialists and obtain the accreditation needed to start performing the procedures again in the state.
Howell can’t afford to wait that long. A transplant at the University of Washington Medical Center is probably her last chance at getting a new heart — assuming a match becomes available in time.
If she does get the procedure done at UW, she’s hoping to be able to get her three months of intensive post-op aftercare through Providence. The Portland-area hospital is close enough that she could live at home and drive in from North Albany for appointments during her recovery period, rather than having to rent an apartment in Seattle and arrange for a caregiver to be on hand around the clock in case something goes wrong.
Beyond that, the news that OHSU and Providence are gearing up to do transplants doesn’t affect her directly.
Still, Howell was glad to hear that Oregonians in need of a new heart will once again be able to get the procedure done close to home.
“Even if it’s not in time for me,” she said, “it makes a huge difference to a lot of people.”