Sometimes the best support for a patient comes from a person who has been there, too
By Laura Mize
Confronting a health challenge can affect every part of one’s life. Sometimes, the best support comes from people who have tackled their own significant medical crises, who know the nuances of procedures, treatments and tests, and the pain of bad days. Here are three stories from pairs of UF Health patients who’ve found that on their journeys to health, they are better together.
Finding health and each other
As boys, identical twins John and James Olsen attended the same schools and always had the same friends.
Then, they reached adulthood. John Olsen joined the military and worked abroad, while James Olsen stayed in the United States. Their tight childhood bond loosened considerably.
Now in their senior years, the brothers live in Florida and are becoming close once again because of a shared battle with heart failure and a treatment that has helped them both.
At 80 years old, the two each suffer from a weakened left ventricle of the heart. This chamber is supposed to pump oxygen-rich blood into the aorta, which then delivers it to the rest of the body. A dysfunctional left ventricle causes inadequate blood flow throughout the body, leading to fatigue and difficulty breathing.
Although their approaches to the disease were different, both brothers struggled with left ventricle problems for years. John was first diagnosed with congestive heart failure in 1998. He took medications prescribed by a cardiologist in Clearwater, received a defibrillator in 2002 and had a stent implanted in 2011.
He also received a referral to see UF Health cardiologist Juan Aranda, M.D., to discuss a left ventricular assist device, a mechanical pump implanted into the heart to improve blood flow. Aranda agreed John could benefit from the pump, called an LVAD for short.
His symptoms worsened while he was on a cruise in late 2012.
“I started to feel bad all of a sudden,” John recalls. “I lost my appetite and my energy and was having shortness of breath.”
In May 2013, he underwent surgery to receive an LVAD.
After the surgery, John spent some time recovering at UF Health Shands Hospital before undergoing physical therapy. Almost a month after the operation, he returned to his home in New Port Richey.
He says he felt normal again just nine months after the surgery.
While all this was going on, James was having his own battle with heart disease.
“I was very weak,” he says. “I had no energy whatsoever. I could not breathe well, many times at night, and I’d have to sit up to breathe properly.”
In December 2013, inspired by his brother’s successful LVAD implantation, James consulted with Aranda. At this point, he was unable to even load groceries into his car after a trip to the supermarket.
A few months later, Charles Klodell, M.D., a cardiothoracic surgeon, a professor of surgery and director of the LVAD program at UF Health, implanted an LVAD into James’ heart, just as he had done for John.
Within a few months of the operation, James says he was feeling like his old self again. By late summer, he had resumed exercising at L.A. Fitness. And, he jokes, he no longer gets away with asking his wife to load groceries into the car.
“I just can’t say enough about (UF Health) Shands and the care I received,” he says. “I just probably wouldn’t be here if it hadn’t been for them. That was the only solution to my problem … that procedure. Otherwise, I would’ve ended up lying in bed and just fading away.”
With nearly identical hearts, James and John have been brought close again by their matching health struggles.
“It’s the only time I know of that twins have been implanted,” said Klodell. “Fortunately, they were separated by (about) one year for implantation, so the second had the advantage and the support of his brother having already gone through it.”
For James it has meant a lot to have someone who literally knows exactly what he’s going through.
“I got my defibrillator before he did and he got his LVAD before I did,” he says. “But otherwise — he and I were following the same path.”
The brothers see Aranda for follow-up every six months. James says living in the same state again, the experience of having the same operation at UF Health and their respective journeys back to health have helped return them to a closer relationship.
John’s home is a perfect pit stop for James’ trips to Gainesville.
“We’re together and do different things together while we’re there — dinner and spending the evening and so on,” James says. “It’s much closer than we were before, just because of this issue.”
Not a match, but just what she needed
Dawn Longo already had endured one kidney transplant, but she desperately needed another. Focal segmental glomerulosclerosis had destroyed her original kidneys by creating scar tissue in their blood-filtering structures.
The first donated kidney she’d received had failed after 12 years, and a series of obstacles had prevented her from obtaining a second. High levels of antibodies, which Longo acquired through three blood transfusions, had eliminated three would-be matches for her much-needed second transplant. A complication in the operating room had stopped one attempted transplant surgery before it could take place. A fibroid on her uterus required her to undergo a hysterectomy to clear space for the transplant surgery to take place. She was on dialysis for the second time in her life, to keep her alive. Dawn was in trouble.
Her daughter-in-law, Dana Longo, decided to do something about it. The two weren’t a direct match, but through the nationwide kidney paired donation program, the 38-year-old Alabaman could help her mother-in-law become eligible to receive a new kidney donated by someone else.
“I love my mother-in-law, and I would do anything for her. I wanted her to be able to live,” Dana says. “They told her that if she didn’t have a kidney, that she would not be able to live much longer or only have several years, and I would rather her have 10, 15 more years.”
If a donor-recipient pair matching the Longo women could be found through the kidney paired donation database, Dana could save someone else needing a kidney and also help save her mother-in-law. Through the program, Dawn would receive a new kidney from a volunteer paired with the recipient of Dana’s kidney.
The nation’s kidney paired donation system is just starting to take off. Supporters have worked for years to overcome legislative and logistical hurdles. Although only time will reveal the program’s effectiveness, it may significantly increase the number of healthy kidneys available from live donors.
Kenneth Andreoni, M.D., a UF Health transplant surgeon, was the 2013-2014 president of the board of directors for the Organ Procurement and Transplantation Network/United Network for Organ Sharing. He also led the kidney paired donation workgroup that spearheaded efforts to standardize kidney paired donation procedures.
Andreoni and other UF Health surgeons have taken part in several kidney paired donations, starting in 2013, connecting people in Florida and five other states.
While Dawn remained on the national waiting list for a new kidney, she told the team at UF Health that she and Dana wanted to participate in a kidney paired donation.
By June, the women received word of a possible match. After further testing, they learned they had been matched with another donor-recipient pair. The surgeries would take place in September.
During the wait, Dawn and Dana supported each other emotionally.
“We prayed for each other and we spoke often,” Dawn recalls. “People took up a love offering for us. We made sure Dana got her month’s wages that she was going to miss by being out (of work). So, we were there for each other.”
In September, the surgeries were a success. Andreoni and Elizabeth Thomas, D.O., an assistant professor in the UF department of surgery’s division of transplantation, took out Dana’s kidney for donation, and when Dawn’s new kidney arrived, Andreoni and Ivan Zendejas, M.D., also an assistant professor in the division, implanted the organ.
Five months after surgery, the Longo women were recovering well, and Dana was back at her job as a receptionist in a medical office. Both are excited to someday connect with the other patients involved in their kidney paired donation.
And, they say, their bond has only strengthened.
“Other than gratitude — more than I already had — our relationship really hasn’t been affected, because we just were really close to start with.” Dawn explains. “(Of) course, we just have something new that bonds us together. I tell her all the time that she’s a hero to both me and the woman in Michigan.”
Life after spinal cord injury
From an adolescent boy’s challenges with a recent spinal cord injury to those of a married man with a career, Mark Brisbane knows the obstacles such injuries impose.
At 17, Brisbane was injured in a diving accident that left him with partial use of his arms and hands but no use of his legs. Since then, he has accomplished much, including graduating from high school, learning to drive and sustaining a career. He works at the Center for Independent Living of North Central Florida.
“I’m married and live independently and I’m doing good,” Brisbane says. “There’s no reason why you can’t be productive once you have an SCI.”
That’s why he pitches in to help guys such as Brent Fout, 18, deal with spinal cord injuries and the myriad ways life changes after one. Brisbane visits newly diagnosed spinal cord injury patients at UF Health rehab facilities to offer guidance and encouragement and also attends a peer mentoring support group that meets monthly at Gator’s Dockside, a local sports bar.
When male patients he has mentored leave Gainesville to return home after their hospital stays, Brisbane tries to keep in touch.
“I’ll get their cell phone number and just text back and forth just to encourage them, ask them how their day’s going,” he says. “If they have any questions, to ask me and I’ll tell them, give them some pointers of what they can do and just some motivational advice.”
His tips range from the practical — such as dealing with urinary tract infections, nerve pain and other physical challenges that come with a spinal cord injury — to relationship guidance for young guys with girlfriends.
Brent Fout was injured in an all-terrain vehicle accident in March 2014. He and his mother, Caren Fout, like to attend the meetings and soak up the advice Mark and others offer. Therapists from UF Health rehab facilities also attend.
Although he’s not much of a talker, Brent Fout agrees that seeing Brisbane’s own progress is helpful.
The high school senior says friends have aided him in his return to school. He plans to graduate, attend college and possibly pursue a career in welding. He’s also gotten back to activities he loves.
“I’ve been hunting and fishing,” he says.
Focusing on education and hobbies fits right in with Brisbane’s advice.
“When I talk to somebody, it’s to motivate them to keep pushing, stay independent,” Brisbane explains. “Getting back into a routine of school, if you’re still in high school, or work, try to go back to work, just basically taking care of yourself. Do and stay in tune with as many things as possible that are positive.”