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.


“Werewolf Amoeba”: New Research on Deadly Parasites

On April 11, 2014 | At 3:03 am

USA Today has dubbed Entamoeba histolytica the “werewolf amoeba.

Werewolf amoeba nibbling on mouse intestines.

Entamoeba histolytica parasites ingesting bites of intestinal cells in a mouse. Credit: Katherine Ralston and David Zemo

And Christopher Huston of the University of Vermont College of Medicine is calling the discovery a ”technical tour de force.”

As published in Nature this week, UVA researchers have discovered that the deadly parasitic amoeba doesn’t engulf the human cells it kills but chews them to death instead.

This amoeba causes a potentially fatal diarrhea common in the developing world.

William A. Petri Jr., MD, PhD, chief of the UVA Division of Infectious Diseases and International Health, sees this research as having clear potential to providing “an avenue to explore how best to prevent and treat this parasite that infects up to one of every three children by their first birthday in Bangladesh.”

Amoebic trogocytosis eating T cells

Entamoeba histolytica parasites (green) ingesting bites of human T cells (pink). Credit: Katherine Ralston

Read more about the nibbling amoeba and the team behind the research.


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Recipe Review Thursday: Crispy Oven-Fried Chicken

On April 10, 2014 | At 8:31 am

We’re trying new heart-healthy recipes every month and will share the results with you. All recipes are from Club Red, UVA’s heart health club for women.

Crispy oven-fried chickenCrispy Oven-Fried Chicken

I’ve said it before: While I like to cook, I don’t have much time to spend in the kitchen these days. I need foods that are quick to prepare, and a recipe that gives me lots of leftovers is a plus. This is an easy, versatile recipe that takes very little prep work. The crushed red pepper flakes add a nice heat, and you don’t taste the corn flakes, which are really just a vehicle for the seasonings.

I only made a minor change to the recipe by mixing in minced garlic instead of garlic powder, but I think this recipe could be changed depending on your mood. For instance, to add a more Southwest flair to your chicken, try replacing the poultry seasoning with chili powder and add some cumin to the seasoning mix.

One note of caution if you do try this recipe: I ran out of breading mixture halfway through and had to make a new batch. Make sure you have some extra corn flakes and spices on hand just in case the same thing happens to you.

Stars: 5 out of 5

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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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Poetry Contest! Just What the Doctor Ordered

On April 2, 2014 | At 2:00 am

Celebrate National Poetry Month with us!

Writing a poem can help you stay healthy.You might be wondering… why would a hospital blog hold a poetry contest?

As we learned from a past interview with UVA’s own Daniel Becker, MD, doctor and editor of the journal “Hospital Drive,” research shows that creative writing is healthy for both patients and doctors alike.

Becker will judge the contest.

So: Ready, set, write!

 How to Enter

  1. Write a poem or poems that fit in one of the three categories listed below.
  2. Submit poems via email. uvahsblog@virginia.edu
  3. Make sure to tell us which category your poem is for.
  4. Deadline for submissions: April 15.
  5. Submit as many as you like! No previously published poems, please.
  6. Winners will be announced at the beginning of May.

Prizes: Get Published, Win a $50 Gift Card

The top three winners in each category will have their works published on this blog.

Two winners will be selected to receive a grand prize: A $50 Visa gift card. Use it to purchase writing materials, poetry books, medical guides, or anything else you would like.

All winning poems will be considered for publication in the journal “Hospital Drive.”

Poetry Submission Categories

Category I: Bedside Manners

Enter your praise for the best doctor, nurse, other healthcare provider experience you’ve had.

Category II: How Sick Did You Get?

What’s the worst illness you’ve ever suffered? Most painful accident? Worst scrape, rash, virus, tear?

Send us your worst in your best limerick or haiku form.

Category III: Grab (the Black) Bag: Miscellaneous Medical Moments

Submit any healthcare-themed poem of any form.

Contest Rules
No purchase necessary to enter or win. A purchase or payment of any kind will not increase your chances of winning. Void where prohibited. To enter, email your poems to uvahsblog@virginia.edu by Tuesday, April 15, 2014. Open to legal U.S. residents 18 years or older who live in the Commonwealth of Virginia. Odds of winning are dependent on the number of entries received. Winners will be notified via email. Winner is responsible for complying with any applicable federal or state laws pertaining to taxes, Medicaid and Medicare. Winner agrees to have his or her name shared via this website and other UVA Health System websites.
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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.

Filed under : Surgery,The People of UVA,Transplant | By
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Caring for a Teen with Cerebral Palsy: A Parent’s Story

On March 28, 2014 | At 1:13 am

Helena Frischtak, a third-year medical student working in different clinics and parts of the hospital as part of her training, contributed this post.

In the hospital, people come and go. Rooms take on new patients, and doctors take on different rooms. When you start to know a patient better, he or she is ready to go home, often never to cross paths with you, the medical student, again.

Yet some patients never actually leave you. That is perhaps my favorite thing about medicine: Doctors learn a lot more from patients than patients learn from them.

A Story About a Mom

This article, however, isn’t about patients. It is about those who are right next to the patient’s bed, who aren’t talked about in rounds when doctors discuss diagnoses and treatments, and whose names aren’t in our electronic medical record. But who – in my book – are big heroes, right next to the doctor. I’m talking about the patient’s caregivers.

Here in the pediatric unit, I have met many types of caregivers. They are mothers and fathers, grandparents and aunts, friends, social workers and shelter nurses. They are there every step of the way, living and breathing each patient’s progress and setbacks.

During my first week rotating at the UVA pediatrics unit, I met Mrs. West — a kind, resilient woman who you immediately know can teach you a lot. Her son, Spencer, has cerebral palsy, epilepsy, intellectual disability and severe scoliosis; he cannot speak, understand speech, walk or move his arms in a coordinated fashion.

Image of Spencer and Wanda West. Spencer is a Children's Hospital patient with cerebral palsy.

Spencer and Wanda West

One crisp Saturday afternoon in March, a few days after Spencer had been discharged from the hospital, I drove up the long, winding road to Mrs. West’s home to chat with her about taking care of Spencer. I was curious about it all: The daily hardships and fears, the lessons she had learned along the way and the big, existential questions brought on by life’s challenges (the “why?”). Our interview, transcribed below, showed me how Mrs. West’s love and devotion, as well as her faith, provide her with the strength she needs to face these significant challenges.

Mrs. West, tell me about Spencer.
Spencer is a 14-year-old special needs child; he has cerebral palsy, epilepsy and scoliosis. He’ll easily get sick: The common cold puts Spencer in the hospital, and it can often lead to pneumonia. Winter is a bit hard for us. The heat of the summer time can sometimes induce his seizures.

His favorite thing in life is eating! He has a 17-year-old sister, Jaz, who is very protective of him. She gets upset every time he is hospitalized. She knows the older he gets, the more his health declines, and it concerns her. We all love him. (Life expectancy of children with cerebral palsy is highly dependent on functional ability; only about 50 percent of seriously disabled children with cerebral palsy live past their 20s.)

Do you think he can feel the love?
Oh yes! He feels the love. He will grunt or make little sounds when he hears my mom or my daughter walk into the room and not speak to him. He is so spoiled!

You mentioned the other day that you aren’t only a mother, but a nurse, a lawyer, a doctor…
I am a doctor when it comes to his health, a lawyer when it comes to his rights, a nurse because I take care of him, a cook because I provide for him. Everything I do for myself, I also do for Spencer. I am two people in one; I’m a 52-year-old adult and a 14-year-old male. I don’t have a written degree; I didn’t go to school for all those things; but I live it— I live it every day.

Image of Spencer West, a UVA Children's Hospital patient with cerebral palsy

Spencer West

What has Spencer taught you?
He has especially taught me patience. I have to be on his time. You cannot rush someone who has special needs, not when he is eating and less so when he is recovering from an illness. When I prepare him for a doctor’s appointment or our religious service, I have to prepare 3-4 hours ahead to get us there on time.

Do you ever ask yourself “Why me?”
I don’t ask that because I know if it wasn’t me it would have been someone else, and because of my faith, I understand we live in an imperfect world. I took care of myself during my pregnancy; I never smoked, drank or did drugs. I had genetic testing done on Spencer, and he was one of 4,000 males with this particular epileptic gene. So I don’t ask myself why, I know it’s just a part of life.

When you think back to how much your life has changed since he was born and your husband passed away, would you take any of it back?
No. Even if I knew that my husband would die, that Spencer would be disabled, and I would be left a single parent, I still would repeat that life. Because I had a good husband and my children had a good father. He was a good provider; he was loving and he was kind… but he was short-lived. We almost made it to our 10-year anniversary – he had booked a cruise for us— but he died one month before.

Yet I had nine years and 11 months of true marriage, true love; some people are married 40-50 years and still haven’t experienced that. I would rather take what I got and know it was real, than have more years and not experience that at all.

You stopped working when your husband passed away to take care of Spencer. How do you support yourself?
Yes, Spencer is my full-time job. For the past 14 years, my husband’s social security benefits are all we have, and it is how I’ve supported my family. It’s a very tight budget; I know where every penny is going. If I had more money we would live in a more handicapped-friendly house. Because he’s getting bigger, the wheelchair is getting bigger, but the walls aren’t getting any bigger.

Do you ever think about who will outlive whom?
I do, and I wonder how long Spencer’s lifespan may be, especially with the health issues that will come along. I pray to God to let me live to take care of Spencer and Jaz. I hate to say it, but if he expires first, I’m okay with it because I know he was taken care of by me. But if I die … I do think about it, but I don’t dwell on it.

You told me you always wonder about what Spencer would say if he could talk.
He would say: ‘Mommy, I love you, and thank you for taking care of me.’ He would be a Momma’s boy. He would love our family. We do a lot of bird watching, so maybe he would be an outdoors person.

Do you have any words of advice for other families of children with disabilities?
It’s a big responsibility (taking care of a disabled child), but it’s just my life, and I don’t know it any other way. I’m not going to say I don’t get sad or that I don’t cry. But not enough to get me down that I can’t move, that I can’t live and that I can’t take care of my family. Personally, I find that reading Rev 21:3,4 in the Bible helps me through hard days.

For everyone who has special needs children: appreciate them, because whether you know it or not, they’re teaching you something. They are teaching you love, kindness and patience, even without a word.


Gene Points to Increased Risk of Stroke

On March 27, 2014 | At 2:39 am

New research from the School of Medicine suggests a gene variation may play a key role in risk of stroke.

The gene discovery comes as part of an investigation into how the body converts the enzyme methionine into the amino acid homocysteine. While researchers have previously found evidence to link increased levels of homocysteine to stroke, cancer and dementia, among other diseases, it’s been unclear why some people produce elevated levels of the amino acid.

The new research sheds light on the question, explained postdoctoral fellow Stephen R. Williams, PhD. The researchers believe that it may be possible to reduce stroke risk by targeting the methionine conversion process with drugs before the homocysteine is created.

Also, as part of their work, the UVA researchers have developed a test that can predict which people are at risk for producing too much homocysteine.

UVA researcher Brad Worrall, MD, noted that the discovery could have far-reaching implications.

“This could potentially be the key to understanding how the gene for this enzyme and this enzyme regulate gene expression much more broadly,” Worrall said. “This might not only be important for the pathogenesis of stroke and cardiovascular diseases but potentially other diseases as well.”

Learn more about the stroke research.

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7 Quick Questions: Meet Dr. Robert Sinkin

On March 19, 2014 | At 9:05 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.

Robert Sinkin, MD imageRobert Sinkin, MD, MPH, is medical director of UVA’s neonatal intensive care unit and the Newborn Emergency Transport System.

What did you want to be when you were little?

I have distinct memories of wanting to be a math professor at a college. Prior to puberty, I wanted to be a singer but my voice didn’t fare well when I started to shave.

Where’s your favorite place to travel?

A beach destination — I miss the ocean and the waves, having grown up on Long Island. Any warm tropical climate that has a sandy beach requiring suntan lotion and frequent thirst-quenching interventions will do.

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

Bold Rock Hard Cider — Virginia Draft variety.

What’s the most unhealthy thing you eat?

Jellybeans. All flavors and varieties, although licorice is my least favorite. A close second favorite candy is Goetze Caramel Creams.

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

Non-invasive physiologic monitoring. By utilizing the many streams of data being collected from the bedside, including heart rate and rhythm, respiratory pattern and oxygen saturation levels, efforts are being made to develop algorithms that may provide early warning that a baby is developing an infection or one of several other complications common in the neonatal intensive care unit related to his/her prematurity or underlying illness.

These data are readily available, downloaded from the cardiopulmonary and oxygen saturation monitors to which our patients are routinely connected. From these data, complex mathematical models that correlate with clinical outcomes are derived in the form of a readily available index score at the baby’s bedside.

Why babies?

Once I was convinced that the field of pediatrics suited my personality, I found the fast-paced, intensive care and procedure-driven aspects of neonatology best aligned with my desire to work in a field that offered promise of cutting-edge science and discovery both in the laboratory and in the clinical arenas. Translational research at its finest.

Who’s your inspiration/hero?

In childhood, Superman of comic book fame occupied my fantasy life.

In reality, I had excellent role models and mentors within the field of neonatology. As a trainee and junior faculty member at the University of Rochester, Don Shapiro taught me how to balance science, curiosity and medicine with one’s home life. Through his tutelage, I had firsthand experience in the cutting-edge science of surfactant replacement therapy for premature babies while facing attendant ethical and moral challenges inherent in caring for babies born on the cusp of viability. (Gestational age limits have continued to decrease as our discoveries within the field have given us the technology, medications and appreciation for the developmental aspects of interventions allowing extremely premature babies not only to survive but to achieve normal outcomes.)

At the University of Virginia, I have had the great privilege of working with John Kattwinkel, a pioneer in the field of neonatology. John’s discoveries in the field of pulmonary physiology with the use of CPAP and surfactant, along with his leadership on the national stage in the “Back to Sleep” program, which led to a significant decrease in the incidence of SIDS, to name a few efforts, have been inspirational.

Filed under : Children's Hospital,The People of UVA | By
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