UVA Health System Blog

Stories about the patients, staff and services of UVA

 

From Cystic Fibrosis to Marathon Ambitions: How a Lung Transplant Changed a Mom’s Life

On April 14, 2014 | At 8:07 am

Tina Tinsley’s dream was to be a mother, and her wish was granted after years of trying. But because of cystic fibrosis, she couldn’t do basic tasks that most moms take for granted. She couldn’t go to the grocery store or give her children baths. When she left the house, she had to take an oxygen tank along with her.

Tina Tinsley with her husband, Phillip and twins Sara and Cole

Lung transplant recipient Tina Tinsley with her husband, Phillip, and twins Sara and Cole

It wasn’t always this way. Tinsley, now 38, was a physically active child, but cystic fibrosis changed all that as she got older.

A hereditary condition that develops during childhood, cystic fibrosis primarily affects the respiratory system, pancreas and sweat glands. The body produces excess mucus that clogs the bronchi, which are the main passageway into the lungs. This leads to breathing difficulties and infections.

Infertility and IVF

Cystic fibrosis also causes infertility. Tinsley, who lives in Staunton, Va., was told she’d never have children, but she wasn’t one to take no for an answer. She and her husband, Phillip, kept trying. After numerous procedures and two in vitro fertilization (IVF) attempts over eight years, they were successful, and twins Cole and Sara were born in 2009.

Her faith in God kept her going through the long and often-disappointing process, she says. The twins were in the NICU for many weeks after their birth. “UVA took excellent care of them and made sure they were coming home,” she says.

After the birth of the babies, her cystic fibrosis symptoms worsened. “My husband says it really took a toll on my body,” she says. “But even if I knew that, if I had been warned, I don’t know if I would’ve listened. I really wanted to have kids.”

Family History of Cystic Fibrosis

Things took a turn for the worse in October 2013, when Tinsley was admitted to UVA with a lung infection and put on a ventilator and feeding tube. “I nearly left here. I almost died,” she says. For Tinsley, that was a very real possibility. Her brother died of cystic fibrosis three years ago at the age of 39. She also has two cousins with the condition, one of whom died from it.

Antibiotics controlled her infection, and eventually she was strong enough to be put on the lung transplant waiting list. Still, she wasn’t ready to admit she needed a transplant. She thought she might still get better and needed the convincing of her doctor, Max Weder, MD. “He said I wasn’t going to live if I didn’t have the transplant,” Tinsley says. “He’s by far the best physician I’ve ever had. We make a good team. The whole transplant team is just phenomenal.”

Tinsley also got support from other members of the transplant team at UVA, including social worker Bill Potts and pre-transplant coordinator Heidi Flanagan, RN.

“Heidi knew how nervous I was, and she was so compassionate. She told me to look ahead a year to what my life was going to be like.”

Potts, she says, asked her what she wanted from the rest of her life. “I told him I just wanted to be a mama to my babies. He said, ‘Transplant can give you that.’”

Lung Transplant and Recovery

While Tinsley was in the hospital, Phillip, Tinsley’s husband of 18 years, would drive 40 miles from Staunton to Charlottesville to be with her and then drive home to be with their children.

Christine Lau, MD, performed Tinsley’s lung transplant, which lasted almost 10 hours. Tinsley was removed from the ventilator the first day after her surgery. “I was up sitting in a chair the next day and walking in the hallways the day after that.”

She stayed in the MICU (medical intensive care unit) for two weeks following the surgery and worked with a respiratory therapist, physical therapist and nutritionist to regain normal function. Tinsley also takes immunosuppressants, drugs that prevent her body from rejecting her new lungs. Transplant recipients take anti-rejection medications for the rest of their lives.

Weder says Tinsley’s case is a special one. It’s not often that patients go from being near death to walking out of the hospital several weeks later. “She is a unique case and serves as a great example of how everyone on our MICU and transplant teams work together in difficult transplant cases.”

Along the way, the Tinsley family received lots of help. People in their Staunton community raised funds to help cover some of their transplant medical expenses. Another group made sure the children had presents under the tree this past Christmas when neither parent had the time or resources to go shopping. The Tinsleys’ church community donated weeks of meals during her hospitalization. The Tinsleys also received a grant from a nonprofit that paid for one round of their IVF procedure.

Tinsley, whose motto is “Live to fight another day,” says she feels better now than she’s felt since she was a child. She can give her children those baths, she goes to the grocery store and the oxygen tank is gone. She hopes to share her story with local churches and maybe write a book someday. Her new goals also include running a marathon. “I know I can do it,” she says.

More Transplant Information

Find out more about UVA’s lung and other transplant programs.

Meet Dr. Weder

Learn more about his interests and research.

 
 

Finding a Kidney Donor Faster: Paired Donor Exchange

On April 8, 2014 | At 8:30 am

UVA has a new way to help people who need a kidney transplant find an organ donor.

UVA has started participating in “paired donor exchanges,” where a friend or family member who wants to donate a kidney to a loved one but isn’t a match for the recipient can instead be paired with another matching recipient. The original patient in need of an organ is also matched with a willing donor.

Emily Lyster; Anita Sites, RN; Brigid Wonderly, RN; Kenneth Brayman, MD

Emily Lyster; Anita Sites, RN; Brigid Wonderly, RN; Kenneth Brayman, MD

These exchanges are complicated and often involve a large amount of cross-country coordination, but the payoff is a much wider pool of potential kidney donors for patients.

“The purpose of the swap is to expand the potential donor/recipient combinations to try and find a compatible match,” says Kenneth Brayman, MD, division chief of transplant surgery at UVA, who oversees between 80 and 100 kidney transplants each year.

In December, the paired exchange in which UVA participated connected five patients in five states with compatible kidneys.

Importantly, these paired donor exchanges can mean dramatically shorter wait times for patients who may otherwise be looking at a years-long wait for a new organ.

Learn about UVA transplant services.

Find out how you can get involved in organ donation.

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Growing Organs for Transplant: A Major Step Forward

On April 4, 2014 | At 7:27 am

April is Donate Life Month, and the heartbreaking stories of people on long waiting lists for organs are abundant. And if you’ve been thinking about becoming a donor, we strongly urge you to sign up.

Image of Chris and Bernard Thisse, who grew a zebrafish embryo from stem cells

Chris and Bernard Thisse

But what if, one day, scientists could grow organs instead of exclusively relying on donors?

UVA School of Medicine cell biology researchers are one step closer: They manipulated embryonic stem cells to develop into a zebrafish embryo. “We have generated an animal by just instructing embryonic cells the right way,” says Chris Thisse, PhD, who led the research with her husband, Bernard Thisse. “If we know how to instruct embryonic cells, we can pretty much do what we want.”

The research provides a framework for future studies looking at growing tissues and organs from cells.

Read more about the zebrafish and the science behind his development.

Listen to a WINA podcast where the Thisses discuss their research.

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7 Quick Questions: Meet Lung Transplant Doctor Max Weder

On April 1, 2014 | At 1:17 am

Ever wonder what your doctor or health provider does outside the exam room? Our 7 Quick Questions series gives you a personal glimpse into the people of UVA.

April is Donate Life Month. Max Weder, MD, is medical director of UVA’s lung transplant program. image of lung transplant doctor Max Weder

What did you want to be when you were little?


I knew pretty early on that I wanted to be a doctor, although I thought I wanted to be a surgeon when I was younger. That changed in medical school.


Where’s your favorite place to travel?


Two very different places: Tuscany and the Outer Banks.

What’s one thing you always have in your fridge?


Ben & Jerry’s ice cream.

What’s the most unhealthy thing you eat?


See above!


What’s the most exciting thing/research happening in your field right now?


I think that the research on ex vivo lung perfusion is pretty cool. This is a technique where a lung that has been taken out of the donor patient is kept ventilated and perfused under a glass cylinder instead of being transplanted immediately. They could demonstrate that this technique allows lungs to be re-conditioned and successfully transplanted that would otherwise be rejected. This is not considered standard practice yet, but I think it may help to overcome some of the issues that we are having with shortage of suitable donor lungs.


Why lungs?


My first job after graduating from medical school in Germany was at a hospital that specialized in lung disease, and I just stuck with it. Then I met a couple of people during my residency who were real role models, and they were pulmonary and critical care docs. That’s when I decided that I really wanted to do this.

Lung transplant sort of combines the best of pulmonary and critical care. You get to work with really good people, and to see someone who wasn’t able to breathe go back to having a fairly normal life again is absolutely amazing. Not very many people are as lucky as I am.

Who’s your inspiration/hero?

I get inspired by all the wonderful people on my transplant team. They give their absolute best every day. Many of our ICU nurses are heroes for me. Despite all the sickness that they see every day, they haven’t lost their humanity, their compassion and the enthusiasm for what they are doing.

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One UVA Employee’s Kidney Transplant Story

On April 23, 2012 | At 8:30 am

Mike Miller was a healthy 23-year-old. He never got sick. But that all changed suddenly when what he thought was a routine illness put him on a decade-long journey that ended with a kidney transplant at UVA.

Goodpasture’s Syndrome

Miller thought he had a cold. But when he started coughing up blood, he saw a doctor. He was diagnosed with a rare autoimmune disease called Goodpasture’s syndrome, which affects the lung and kidneys.

UVA employee Mike Miller, left, recently had a kidney transplant at UVA. His friend Paul Watson, right, donated the kidney.

UVA employee Mike Miller, left, recently had a kidney transplant at UVA. His friend Paul Watson, right, donated the kidney.

“I had a complete body shutdown. I couldn’t function,” Miller says. He was admitted to UVA, where he was sedated in the MICU (medical intensive care unit) for five weeks. He had dialysis. A similar process called plasmapheresis removed the harmful antibodies from his body, and immunosuppressive drugs inhibited his immune system “so my body could stop fighting itself.”

There’s no known cause for Goodpasture’s, though exposure to chemicals and viral infections are possible causes, according to the National Institutes of Health.

After five weeks in a hospital bed, Miller had to relearn how to walk, hold a phone and do other everyday activities, so he spent three weeks at UVA HealthSouth for rehabilitation.

But that wasn’t the end of the journey.

A Cure But a Kidney Transplant Ahead

Miller’s Goodpasture’s disease was cured, but his kidneys were permanently damaged. He knew he’d need a kidney transplant some day.

That some day turned out to be 12 years later. Meanwhile, Miller, a project coordinator in the Health System’s Nursing Governance Office, was monitored by doctors at the UVA Kidney Center.

His kidney function decreased over time, causing hypertension and high cholesterol. He also developed glomerulonephritis, a disease in which the small blood vessels in the kidneys are inflamed and less able to filter fluid and waste. “It’s basically just a downward progression over time,” Miller says.

The Kidney Center team checked his blood every three months, looking at his kidney filtration rate and creatinine levels. Over time, the creatinine levels increased from 1.5 to 5.3 (a healthy level is .6 – 1.2 for adult males).

The decreased kidney function affected his energy level. Just going to work was all the activity he could handle for one day. “I had to save up my energy and time.” In December 2010, his Kidney Center team decided it was time for a transplant.

An Organ Donation from a Friend

In January 2011, Miller had his first appointment with UVA’s Transplant Clinic. His mother went with him to take notes and be a second set of ears (a good idea for anyone with a serious diagnosis).

Miller got his name on the waiting list for a kidney. The estimated wait time was seven years.

He told a select group of friends about his situation and his friend Paul Watson, a former UVA employee, volunteered right away. “He said, ‘I’m doing it and there’s not really a choice,’” recalls Miller.

The choice was a simple one, according to Watson: “I said, ‘I’m just going to do it. I’ve got an extra one, and I want you to have it,’ I’m a fixer and I could do this. It’s the easiest thing I’ve ever done, but the most important,” he says.

Miller and Watson were each assigned a separate transplant team with their own transplant coordinator. Watson went through a number of tests to make sure he could donate a kidney to Miller. At each step of his testing, UVA’s Transplant Board evaluated Watson’s results, and after 10 months, he was approved to donate.

Kidney Transplant and Recovery

Miller and Watson went to the hospital for their surgeries on September 22, 2011. Miller’s transplant surgery lasted about three hours and he was in the hospital for one week. He and Watson both were up and walking the next day, which helps with the recovery process and healing.

Miller wasn’t nervous, he said, because he was well prepared by the people of UVA. He took a class and read his transplant handbook. “There was nothing to be surprised about. I wasn’t scared.”

Watson wasn’t nervous, either. “I’ve been around this place my whole life,” he says. “I was convinced because of the care I’ve received here over all of my life. I was born here. I got all of my medical care here growing up. If you’re going to have a transplant, you’re going to have it here.”

Recovery wasn’t easy for Miller, though, and there were setbacks. “It took a whole lot more out of me than I thought it would,” Miller says. “I was living a fairly normal life, working mostly full-time, before the surgery.” But post-surgery, he found himself wondering when he would feel better. “It was a big shock,” he says.

But Miller did start feeling better — gradually. After two months, he realized it wasn’t as difficult to walk up the two flights of stairs to his apartment.

“Now I feel better than I did before my surgery and I’m starting to feel hopeful again,” he says.

Miller still goes in for blood work every week for a full report on how his body is doing. “It’s neat to be so connected, to know exactly what’s going on inside.” He hopes to reach the point where he only needs blood work once a month.

Fannie Utz, RN, is Miller’s post-transplant coordinator. “I’ve been here for almost 30 years, and I’ve taken care of a lot of employees. I treat all of my patients as if they were a family member or how I would want to be treated,” she says. “You develop a bond with them because they feel like they can call on you for anything.”

Support From Fellow UVA Employees

Miller was out of work for three months for the surgery and recovery. His manager, Holly Hintz, coordinated an effort by his coworkers to give him their unused vacation time (short-term disability benefits only paid a portion of his salary). “We have such a culture of doing this [donating vacation time] at UVA,” says Miller. “It’s different to be on the receiving end of it. It’s a big deal.”

Miller works with many UVA nurses as part of his job, and they are the reason he chose UVA, he says.

“It’s why I had my surgery here,” he says. “I trusted in the care I was going to get because I work with so many nurses, so it just made sense to come here. I was looking forward to seeing these people I work with do their job.”

More About Organ Donation: Find out more about organ donation and one man who gave a kidney to a stranger.

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Organ Donation: The Gift of Life

On April 12, 2012 | At 9:18 am

Eighteen people die each day because there aren’t enough organs available for those in need, according to the U.S. Department of Health and Human Services.

Laurie Miller of Harrisonburg donated a kidney to a stranger in need.

Laurie Miller of Harrisonburg donated a kidney to a stranger in need.

Eighteen.

And there are more than 100,000 people on the waiting list for organs nationwide, including 759 UVA patients. For many of those waiting, time is limited.

Organ Donation: What Can You Do?

Many people agree to donate their organs when they die. It’s called a deceased donation, and it’s as easy as checking a box when you apply for a driver’s license. Some even donate a kidney or a part of their liver to a friend or family member. That’s called a living donation.

Laurie Miller of Harrisonburg donated one of his kidneys as part of a living donation. But Miller donated to a stranger. It’s called an altruistic (or non-directed) donation and it’s fairly uncommon, according to Anita Sites, RN, who coordinates and manages care for patients in UVA’s Living Donor Program. There are about one or two altruistic donations a year at UVA, she says. (more…)

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A Young Mother’s Story of Liver Transplant and Survival

On November 1, 2011 | At 9:14 am

Leah Yetzer, 30, was 37 weeks pregnant with twin boys in 2009 when doctors discovered she’d developed HELLP syndrome, a rare but serious condition that occurs during pregnancy or just after delivery. HELLP reduces red blood cells and increases liver enzymes. Leah was airlifted to UVA, where she had a liver transplant that saved her life. Leah, who lives in Blacksburg, shared her story with us.

Liver transplant receipient Leah Yetzer and her family

Leah Yetzer with her husband, Nate, and her twins, Nick and Jack

In May of 2009 I experienced a tragic sequence of events that led to my life almost ending at 27 years of age. I was 37 weeks pregnant with twin boys and I loved almost every week of it. But in my 36th week I felt incredible discomfort throughout my body, especially in the abdomen area, as well as headaches, swelling in my feet and fatigue. This was to be expected, I thought, given my condition and that I was carrying over 12 pounds of extra weight on my small 5-foot-2-inch frame.

I was never advised to be on bed rest and was told by my primary obstetrician in Blacksburg that non-stress tests, which monitored my contractions and their effect on my boys’ heart rates twice a week for 2 hours starting at 32 weeks, were a waste of my time. My husband and I trusted the OB’s knowledge and discontinued those tests (recommended by a previous OB seen at the same establishment) after one week. We then trusted his knowledge when we were sent back home on a Monday with a prescription for muscle relaxers, despite how I felt toward my 36th week — that it was time and my body could not handle anymore. We were told that an induction would not be possible with my doctor until at least two days later, a Wednesday, when I would be in my 37th week. (more…)

 
 

Heart Failure: Are You At Risk?

On May 24, 2011 | At 8:27 am

Tony was only 53. But he was often short of breath and too tired to play with his kids or enjoy golf. We often think heart failure only happens to older people, but younger adults like Tony with other (sometimes undiagnosed) heart conditions or other risk factors can also develop it. According to the American Heart Association, about 5.7 million Americans have heard failure, including 10 percent of people over 80. In some cases, you might not even know you have heart disease until you begin having heart failure symptoms.

Do you know the signs and symptoms of heart failure? You can learn more about heart failure at our community lecture Thursday, May 26, 6:00-7:30 p.m. at UVA Alumni Hall. Dr. James Bergin and nurse practitioners Carole Ballew and Nita Reigle will discuss the latest treatment options. We talked to them to get some more information before the event. (more…)