SEATTLE – When you walk through the door of Dianna Howell’s University District apartment, the first thing you see is a big Purell dispenser on the kitchen counter.
Visitors are expected to use plenty of hand sanitizer, and if you have a cough, you don’t come in at all.
The building’s official name is The Allegro, but many of the people who live there call it something else: Transplant House.
It’s a four-minute drive from the University of Washington Medical Center, where Howell, a 60-year-old North Albany resident, underwent heart transplant surgery on Sept. 7.
The Allegro has been her home away from home for the last three months, the trickiest part of her post-op recovery. She’s been in and out of the hospital several times since then, but she’s gradually regaining her strength.
“I’m feeling good,” she said during a recent visit. “I managed to walk two blocks with my walker, which is the most I’ve done in years.”
She was smiling when she said it. Compared to life before the surgery, every day feels like a victory.
A medical miracle
She almost didn’t make it.
Howell has struggled with serious coronary illness since her mid-30s. She suffered a heart attack in 1996 and nearly died on the operating table. Initially misdiagnosed with angina, she carried on as best she could with medication.
But something else was going on. She tired easily. Her heart would beat wildly with even mild exercise, yet she couldn’t stand still because her blood pressure would shoot up if she wasn’t moving.
After she collapsed at work in 2016, she had more heart surgery. This time doctors implanted a pacemaker and defibrillator, but she still didn’t respond as expected.
Her cardiologist referred her to the Mayo Clinic in Minnesota, one of the nation’s top medical centers. There, a specialist finally gave her a name for her condition: She had a rare form of apical hypertrophic cardiomyopathy, which causes the heart to misfire with even minimal exertion.
He also gave her a stark prognosis. If she didn’t get a new heart, she was going to die.
In July 2017 she was accepted into the cardiac transplant program at Oregon Health & Science University. That November she got a call that a suitable donor heart had become available and rushed to the Portland hospital for a transplant, but the surgery was called off at the last minute when doctors discovered Howell had a previously undiagnosed ulcer, making the procedure too risky.
Things got worse in August 2018, when OHSU announced it was suspending the program because some of its transplant cardiologists had decided to jump ship. The others quickly followed suit, leaving Oregon with no heart transplant program for the first time since 1985.
Most of the 20 patients on the waiting list for a new heart at OHSU were accepted into other transplant programs within weeks, but Howell’s condition was more complicated, making her a poor risk for surgery. Finally, in March of this year, doctors at the UW Medical Center decided to take a chance and put Howell back on the waiting list.
Meanwhile, though, her condition was getting worse, with frequent bouts of weakness and severe chest pains. After multiple trips to the hospital – including a helicopter flight to UW for emergency treatment – doctors found a way to stabilize her with medication, but she knew her time was running out.
Then came that phone call in September, the trip to Seattle for one more surgery, and a new chance at life.
Post-op protocols following heart surgery are strict. Because of the risk of rejection and other complications, patients are required to live near the hospital for at least three months afterward. They need a clean environment, they must be rigorous about taking medications, and they must have a caregiver with them at all times.
In Howell’s case, that meant renting an apartment at Transplant House, which has an arrangement with UW for accommodating patients. No long-term lease is required, and units aren’t just cleaned between tenants – they’re sanitized.
Howell’s daughter, Amber, has been coming up from Salem about once a week, but her primary caregivers are her son, Brandon, who stays with her Monday through Friday, and her husband, Jeff, who makes the six-hour drive to Seattle most every weekend.
Both Jeff and Brandon work at the family business in Albany, BlueSun Inc., a nonprofit employment service that finds jobs for veterans and people with disabilities. Over the last three months, they’ve settled into the routine of trading off Dianna’s care.
“I leave work at noon on Friday, drive up here and stay till Sunday at noon or whenever Brandon comes up to relieve me,” Jeff said. “Usually I get home about 11 o’clock.”
To make the I-5 cruise go faster, he listens to books on tape or plays the radio.
“I know all the NPR stations on the way up here,” he said. “I just keep switching.”
In addition to preparing meals and keeping his wife company, Jeff tries to catch up on laundry, cleaning and other chores when he’s got weekend duty.
Brandon is in charge of keeping his mother on track with her post-op recovery regimen – and there’s a lot to keep track of, starting with medication.
Watching him in action, it’s clear that Brandon Howell takes his responsibilities very seriously.
Every Monday morning, he dons a pair of blue surgical gloves and fills his mother’s pill box for the week. Nearly the size of a cafeteria tray, it has 28 compartments – four for each day.
Brandon refers to a thick three-ring binder as he doles out the week’s allotment of meds, a process that takes about 30 minutes.
First come two different anti-rejection drugs, which have to be taken twice a day. Then prednisone, a steroid, twice a day; acyclovir, an antiviral, twice a day; and clotrimazole, a big lozenge that takes 30 minutes to dissolve under the tongue – that one has to be taken four times a day.
There are other prescriptions, too – for cholesterol, for blood pressure, for heart rate and heart rhythm, and over-the-counter supplements such as Tums (for the calcium) and prenatal vitamins (for the folic acid).
Altogether, Dianna is taking nearly two dozen medications – more than 40 pills each day. Each one has to be taken on time, and each one has a different schedule. Brandon makes sure she takes them all exactly as directed.
“He’s so precise,” Dianna said. “He has alarms for everything. I never miss a pill.”
He’s also there to remind her to do her breathing exercises – she has two devices she uses each hour – and to take her hourly walk. She has to use a walker, and she still can’t go far – usually just a short jaunt up the hall and back – but she’s slowly building up her strength.
Dos and don’ts
Still, even the simplest exercise requires caution. During transplant surgery, nerves that let the heart communicate with the extremities must be severed. There’s a fair chance Dianna’s will grow back – it happens in about 70% of patients – but until then she has to do an elaborate series of warmup exercises before standing up. If she forgets, she quickly grows lightheaded and short of breath and has to sit down again.
There are other things to keep in mind as well.
“After taking her pills, there’s a time period when she can’t have any food or drink,” Brandon said.
Some foods are off-limits entirely because of potential drug interactions, he added: “She can’t have grapefruit, passion fruit or pomegranate.”
Salmonella is another constant worry, and Brandon is a stickler for cleanliness, with Purell and disinfectant wipes ever at the ready, especially in the kitchen.
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“Soup or anything out of a bottle or can, you have to clean off the top of it,” he said.
Because of the anti-rejection medications, Dianna’s immune system is always suppressed, which makes her vulnerable to any sort of infection.
“For six month I’ll have to wear a mask anytime I’m out in public,” she said. “Right now I can go into a restaurant, and if I’m not too close to people and nobody around me is coughing, I can take the mask off and eat.”
But she has to remember to ask for clean silverware – anything left sitting out on the table could have germs.
Hope for the future
The staff of the UW Heart Institute has kept close tabs on Dianna Howell since her Sept. 7 transplant. They kept her in intensive care for about 10 days after surgery, finally discharging her from the hospital on Sept. 23.
After two days at Transplant House, however, she was back in the hospital with atrial fibrillation. She’s been hospitalized several times since then with various complications, but now she seems to have stabilized.
More recently she’s been going to the Heart Institute two or three times a week on an outpatient basis for blood draws, echocardiograms and other tests.
The one she hates the most is a biopsy to make sure her body isn’t rejecting her heart. The procedure involves inserting a catheter through her jugular vein. She’s had six of those since her transplant and is looking forward to the day when she won’t need to do them as often.
“What they’re doing is taking a little piece of your heart – well, three or four pieces,” she said. “They go in through your neck.”
Dr. Daniel Fishbein, who heads the transplant program at UW, said the results have been encouraging. The level of antibodies in Dianna’s system has been coming down in response to the anti-rejection drugs, and he hopes to be able to start weaning her off some of her medications.
“People get a (big) package of pills after transplant, but it’s pretty impressive how we can reduce those over time,” he said. “Right now she’s doing really well.”
The UW Heart Institute performed 87 transplants last year, making it the third-busiest in the nation, Fishbein said. On average, half the program’s patients are still alive 17 years after transplant surgery, and some are still going strong more than 30 years after the procedure.
He thinks Dianna has a good chance of living for many more years with her new heart.
“Our goal is for people to get years, even decades of good quality of life,” he said.
“I’m optimistic about her prospects. I think she’s got a great chance of doing very well long term.”
In the short term, Dianna Howell’s focus is on getting back home to Albany. She was hoping to get the all-clear at her last visit with Dr. Fishbein, on Dec. 3. But he was concerned about the antibody levels in her latest biopsy. He told her she needed an intravenous immune globulin treatment to bring the antibodies down, and that would have to be done at the UW Medical Center.
As a compromise, he allowed Dianna to come home for a few days starting last Thursday, with the understanding she would return to Seattle on Monday for her treatment. She’s trying to be philosophical about it.
“It was a big disappointment, but, you know, they’re being cautious, and I can’t argue with that,” Dianna said.
“After everything I’ve been through, I wouldn’t want to do anything to jeopardize that. A few more days won’t kill me.”
Still, she’s looking forward to making the transition back to Albany permanently. She’ll need ongoing follow-up care, but she should be able to get that through the newly started transplant program at Providence Heart Institute in Portland instead of traveling all the way to Seattle. (OHSU has also taken steps to restart its transplant program.)
She’ll never be able to go back to work, but she’s been told if she keeps taking her medications, continues to exercise and takes precautions to prevent infection, she’ll gradually get stronger and can get back to something resembling a normal life.
“My biggest thing is just going to be learning to walk and breathe again,” she said.
But she’s getting there. She’s already ditched the oxygen tank and wheelchair that have been her constant companions for the last two-plus years, and she’s getting stronger day by day.
She’s looking forward to cooking on her own stove and putting her dishes where she wants them in the kitchen – simple things she’s been too weak to do since moving into her North Albany home a few years back. She’s looking forward to going shopping with her daughter, having friends over to the house and walking her shih tzu.
And she’s looking forward to attending more Oregon State sporting events – the family has season tickets to Beaver football, baseball and basketball games.
“If I have to wear my mask the whole time, I don’t care,” she said. “I’m so excited to just try to have a normal life.”
Money is an issue for the Howells, but they’re managing.
Heart transplants don’t come cheap – the national average is nearly $1.4 million, according to a 2017 report in Forbes magazine – and post-surgery medications can run up to $22,000 a year.
“You have to have the money for all the drugs or they won’t do the transplant,” Dianna said. “They tell you that up front.”
Insurance covers most of those costs, but most years they’ve maxed out their deductible before the end of February.
One expense insurance doesn’t cover is the cost of staying at Transplant House, but OHSU has picked up that bill.
“They’ve done everything they can to make things right,” Jeff said. “They messed up, but they’ve tried to make it right.”
Dianna Howell says she’s grateful for all the people who have helped her get to this point: the doctors and nurses who cared for her broken body, the friends and family who make up her support network, the people from her church who prayed so diligently for her health to be restored.
“I don’t know if I can possibly thank everybody,” she said, “but I’m going to try.”
Perhaps most of all, she’s grateful to the stranger whose heart now beats calmly and quietly in her chest. She’s been told the donor was a 45-year-old woman, but she doesn’t know anything else about her – her name, where she lived, how she died, who she loved.
People who get a heart transplant are encouraged to write a letter to the donor’s surviving family members. Transplant recipients aren’t told who the donor was or the names of the people they’re writing to; it’s up to the donor’s family to decide whether they want to make contact with the person who now has their loved one’s heart.
“They give you a form with some questions the donor might have,” Howell explained.
“I hand-wrote a letter … and I said, ‘If you want to know more, I’ll be happy to talk to you.’ I just wrote how grateful I was, that I hoped that was a comfort to them, that I hoped to make good use of my life,” she added.
When she thinks about the fact that someone else had to die so she could live, Dianna said, it makes her want to cry. After living so long with a death sentence hanging over her head, she knows she’s been granted a reprieve.
It was her Christian faith that sustained her through those years, the belief that her fate was in God’s hands. The donor heart she received was a perfect match, and she takes that, too, as a sign of divine intervention.