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.


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.


Life Saver: Med Student Catches Abdominal Aortic Aneurysm During Training

On January 3, 2014 | At 9:33 am

Jim Malloy was only supposed to be pretending to have an abdominal aortic aneurysm (AAA).

Jim Malloy and Ryan Jones image

During training, medical student Ryan Jones (right) caught an AAA in Jim Malloy.

This condition, where an area in the abdominal section of the aorta swells and can burst, is common in men between 65 and 75. As a School of Medicine “standardized patient,” Malloy’s role was to pretend to have the condition to help students practice diagnosing.

However, medical student Ryan Jones heard and felt the symptoms of an actual AAA. The doctor overseeing the practice session recommended that Malloy, a Crozet resident, see a cardiologist.

It turned out Malloy did have an AAA. He had stent placement surgery at UVA and is now doing well.

“Jim’s life was saved by a UVA medical student, no doubt about it,” says Louise Malloy, his wife.

Read more of Malloy’s story.

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Brain Tumor Surgery and Recovery – One Patient’s Story

On May 1, 2013 | At 8:44 am

It started off as a splitting headache that would not go away. Michelle Green tried a number of therapies: Massage, acupuncture, visiting a chiropractor. Then a neighbor suggested she see a doctor.

“Thank God for pesky neighbors,” Green says.

A brain tumor found through MRI meant neurosurgery and cancer treatment at UVA for patient Michelle Green.The tumor growing in her brain was the size of a golf ball.

The news was “absolutely terrifying.” Green was 33 years old.

Recurring Nightmare: Brain Tumor Symptoms

The surgery was successful. Green moved to Charlottesville and started a massage therapy practice in her home.

She learned that her seemingly mundane symptoms had been “big red flags. Waking up at night with a splitting headache. It’s not uncommon for a tumor growing in your brain to start showing signs of distress.”

And she knew about the other brain tumor symptoms, too — seizure, hemorrhage, stroke.

So last year when she had a seizure after being cancer-free for 10 years, she didn’t wait. She went straight to the doctor.

“One afternoon I just seized right in my kitchen. Somehow I made it over to my couch in my living room. I woke up dazed and called a good friend who came to get me. I went to my primary care physician, who announced I needed another MRI.” Within a week doctors discovered a new tumor, “a bit smaller, like an acorn.”

“World-Renowned” Neurosurgery Treatment at UVA

Green felt lucky to be in Charlottesville, with UVA and its “world-renowned neuro department just a mile away. It’s a town where a lot of people come from out of nowhere to get good healthcare.  I met people who came from Tennessee, Kentucky, Roanoke, two hours away to get radiation. It’s the best in the mid-Atlantic.”

Green met neurosurgeon Dr. Jeff Elias, who “explained to me what the possibilities were. “

Green had to undergo surgery. This time, it was trickier. “The risk involved was that the tumor was very close to the speech area in the brain, so I had to do an extensive amount of MRI screening so they could find the area.”

The risk to her speech also required “awake craniotomy.” They gave Green what she calls “twilight drugs, because you wake up in a twilight zone during the operation. You have to respond to the questions to see if they are too close to ruining your speech capacity.”

Green says you have to “mentally prepare for it, with the most courage you can. As they were attempting to bring me to consciousness, I started to have a seizure. They had to wait until I could gain control of my speech. You can’t remember anything and then you wake up. You wake up in a whole other land, with people frantically around you, 50 people all around you, busy busy. It’s a journey I don’t wish upon anyone.”

Recovery in the ICU

After surgery, Green was in the intensive care unit.

“The ICU nurses were fantastic. Not only were they confident and professional, they were very sweet to my parents who, as elderly people, were stunned, shell-shocked that they had to go through this again. Anyone who has to experience a hospital setting knows it’s so disorienting; you just want a coffee, or to know where to park in the middle of January. I worried more about them. That was the hard part, trying not to get wrapped up in caring for the people around you. Which is very common for patients.”

Green says one nurse in particular made a deep impression she’ll never forget. “She was rushing around when I was in danger of having a stroke because I was hemorrhaging a little bit. She was very intent to make sure I was getting scans; it was a sleepless night for her watching me.

Somewhere between 3 and 4 in the morning, she woke me with a little light to make sure I was lucid and dilating. Like an angelic figure hovering around me. I said, ‘Susan, you’re so pretty. Do you like chocolate?’ She said, ‘I love it.’ So as soon as I could, I got her some Gearharts Chocolates.”

Like an “Airwalk”: A Caring Team

After her surgery, Green had to have extensive and very specific brain tumor therapy to make sure the cancer was gone and didn’t recur. Dr. Elias told her, “Dr. David Schiff will be the quarterback of your team now.”

According to Green, it was “really an outstanding team. I was carefully and lovingly carried along. Like a mosh pit when you do the airwalk — everyone carries you along.”

But it wasn’t just the medical care that impressed Green. “What is so good about UVA is they assign you a nurse coordinator and a social worker. The nurse coordinator was very helpful, and the nurse from neuro-oncology. They were very helpful, doing things like reminding me to come in every week to get blood work.”

Green also felt confidence because “I know I’m in the system. They know my patient number, my blood type. They know me. They’ll have my history. Nowadays with MRI scans in real time, I can get my answers quickly, and that is the most important thing.”

Brain Tumor Therapy and Recovery

Green started chemotherapy and radiation at the Emily Couric Clinical Cancer Center on Valentine’s Day 2012.

“Emily Couric — love it,” she says. But it was hard. She had six weeks of radiation, every day, Monday through Friday.

“I was so exhausted. I had to stay on top of my meds. Keep myself fed. Try to keep it together. In the evening, take my chemo meds. And then six more cycles. It’s been a long year, taking medication on regimented cycles.”

Jaunt, a regional transportation system, also turned out to be a life-saver, since Green was officially disabled and couldn’t drive herself to the hospital. “The folks at Jaunt were really sweet. It was an incredible service; people don’t realize it’s so critical to this community.”

Green’s therapy also included physical and speech therapists.

She explains, “The physical therapists were concerned about me going in and out of the bathtub. So much of the deficit from surgery, chemo and radiation is a real loss of short-term memory and balance.” A year later, Green still experiences some cognitive deficiency. “It happens casually now. I may get so excited about a topic and forget what I was talking about. It’s like word recall and memory recall.“

After Cancer: Moving Forward

Green still gets screened every three months, but it’s become routine for her. And she’s grateful to have been given a clean bill of health and for the care she received.

“You’re not going to get any better in this region than UVA. Stunningly smooth system for patient care. I’m going to stay in Cville for a while, because I feel so confident in this system.”


Mindfulness and Antioxidants: The 10 Most Popular Blog Posts of 2012

On December 27, 2012 | At 10:00 am

Mindfulness and Antioxidants: The 10 Most Popular Blog Posts of 2012

This year’s most popular blog posts are a wide-ranging group, including everything from myths and facts about multivitamins to how to avoid Lyme disease and other tick-borne illnesses.

We hope you enjoy this look back at the 10 most popular blog posts of 2012.

  1. Medical TV Shows: Do Doogie Howser and Dr. House Work Here? This light-hearted look at scripted hospital work reminded us just how many shows about hospitals there are!
  2. Are Multivitamins Necessary? And Other Frequently Asked Questions. This post discussed what exactly multivitamins are and whether most of us actually need them.
  3. Protect Infants (And Yourself) from Whooping Cough. This post introduced readers to 7-week old Jack Jordan, a spirited young boy who has struggled with the illness. Since this post ran, Jack has been doing very well!
  4. Not Just Lyme Disease: Tick-Borne Illnesses in Virginia. Nobody likes to find a tick crawling on his or her skin, and with good reason! A bite from these insects can cause a host of dangerous diseases.
  5. Antioxidants and Vegan Diets: The Role of a Cancer Center Dietitian. Can a vegan diet help fight breast cancer? This post introduces us to a woman who thinks it may help.
  6. Want to Lose Weight? Neuroscience and EBT Can Help.  Can “emotional brain training” play a role in weight loss? A UVA counselor believes it can.
  7. Prenatal Vitamins: When, Why and How. It turns out prenatal vitamins are very important for most expecting mothers.
  8. Pay Attention: The Medicine of Mindfulness. Learning that you are living with cancer is understandably difficult for most people. There are way to manage the stress while managing the disease, however.
  9. Flu Vaccine Facts: Who Should Get It, Who Shouldn’t and Why. This winter’s flu season looks like it may be a rough one. Get the facts on protecting yourself.
  10. Save Your Knees: Pay Attention to the Pain. Our knees can be among the first joints to start feeling the years. Learn how to protect them.

Breaking the Language Barrier: Interpreters Play Key Role in Patient Care

On October 10, 2012 | At 8:38 am

Fifteen percent of Charlottesville residents speak a language other than English at home, according to the U.S. Census Bureau. For them, understanding diagnoses and following care instructions would be nearly impossible without the help of interpreters.

Liz Cook (left) interprets American Sign Language for patient Wanda Biser (center) and LPN Cynthia Napier during a dermatology appointment.

Liz Cook (left) interprets American Sign Language for patient Wanda Biser (center) and LPN Cynthia Napier during a dermatology appointment.

UVA has eight full-time employees who can interpret Spanish and hires local experts for other languages as needed. Some of the most common are:

  • American Sign Language (ASL)
  • Russian
  • Chinese
  • Arabic
  • Nepali

UVA, like other federally funded organizations, must provide interpreters at no charge for patients who aren’t proficient in English. But this service is about more than fulfilling a requirement. Interpreters are necessary for “the safety of everyone involved. We’re dealing with medicine and the patient’s health, and it’s crucial to get everything right,” says Jerry Brooks, one of UVA’s Spanish interpreters.

How Medical Interpretation Works

The interpreters are available for any patient who isn’t fluent in English, and they’re trained in medical terminology. Non-English-speaking patients make appointments at UVA in a few different ways:

  • Patients call the clinic and an over-the-phone interpreter facilitates the conversation.
  • An English-speaking family member or a friend contacts UVA for them.
  • The International Rescue Committee’s Charlottesville office refers people to UVA and helps them set up appointments.
  • Patients who speak some English make the appointment themselves, and they or a staff member request an interpreter for the appointment.

Once patients make the first appointment, employees put notes in their registration information and electronic medical record so they’ll know to request an interpreter for future appointments.

When an interpreter goes to a doctor’s appointment, the conversation is still between the healthcare provider and the patient, explains Liz Cook, an ASL interpreter. Her job is to interpret the languages, not add to the conversation.

The interpreters also work with patients staying in the hospital. If one isn’t available in person, the healthcare provider accesses one through a video chat or phone system.

Feeling Safer: One Patient’s Story

Cook recently worked with Stuarts Draft, Va., resident Wanda E. Biser, who had a basal cell carcinoma (a form of skin cancer) removed at UVA. Biser and her husband are deaf and communicate in ASL.

When Biser was interviewed for this story, she signed as Cook interpreted her words into English. Biser said UVA’s use of nationally certified interpreters made her “feel safer.”

During a recent dermatology appointment, Biser also had a chance to try out UVA’s new Video Remote Interpreting (VRI) service, which connects patients with interpreters through an online video chat system.

Wanda Biser (right) tries out a new American Sign Language video interpreting system as she talks with dermatologist Mark Russell, MD.

Wanda Biser (right) tries out a new American Sign Language video interpreting system as she talks with dermatologist Mark Russell, MD.

She said that was a “good experience, but you have to get so used to it. … Especially for last-minute appointments, I think it’s good.”

She’s been in emergency rooms before where there was no interpreter at all.

“I’d rather have the VRI than a nurse trying to work out finger spellings,” she says.

Vickie Marsh, interim manager of Language Assistance Services, says having a live interpreter is ideal, but the video and phone services fill a much-needed gap when patients need an interpreter quickly or there is no local interpreter who speaks the patient’s language.

Help for Refugees: A UVA-IRC Partnership

Each year, the Charlottesville IRC office helps about 200 refugees start a new life in central Virginia. That includes helping them find a primary care doctor.

“What we don’t want is for our clients to have to use the emergency room as their primary care provider,” says Terri DiCintio, IRC’s community relations coordinator.

Refugees sometimes have medical problems such as malaria that U.S. doctors don’t usually see, DiCintio explains. So the IRC often refers refugees to UVA’s International Family Medicine Clinic. Fern Hauck, MD, started the clinic in 2002 to serve refugees in Charlottesville.

In turn, UVA relies on the IRC’s 50 interpreters, some of whom know less-common languages such as Nepali and Kirundi, to ensure all patients can communicate with their health care providers.

Otherwise, patients may try to rely on a family member or a friend, and “there are all kinds of problems that can result from that,” DiCintio says. “Let’s say a pregnant woman has to go to an OB/GYN appointment, and the only person she has to bring with her is her 12-year-old child. It’s not appropriate. It’s uncomfortable. Is the patient going to be open and honest?”

Need an Interpreter? Want to Work as an Interpreter?

If you or your family member need an interpreter for your next doctor’s appointment, let our staff know when you schedule the appointment.

  • To reach our over-the-phone Spanish interpreter, call 877.297.2366 and enter the access code 4044.1905.7434. An interpreter will help you make your appointment.
  • For any language-related concerns, please contact Language Assistance Services at 434.982.1794.

We’re looking for nationally certified Spanish and ASL interpreters with medical training to work as contractors on an as-needed basis. If you’re interested, contact Language Assistance Services.

Also, Charlottesville’s IRC office is looking for people fluent in:

  • Arabic
  • Burmese
  • Karen
  • Karenni
  • Swahili

If you’re interested in working or volunteering as a community interpreter and are willing to take a language test, send your resume to Eugeniya Haas.

Learn more about UVA’s initiative to make culture and language resources easily available for staff.

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“A Special Heart:” Meet A Little Girl with a Congenital Heart Defect

On August 16, 2012 | At 9:00 am

When Christy Davis was 20 weeks pregnant, she and her husband went to her ultrasound, full of anticipation like any expectant parents.

UVA heart patient Sydney Davis, right, with her big sister Aubrey in Richmond, Va.

UVA heart patient Sydney Davis, right, with her big sister Aubrey in Richmond, Va.

“It was a planned pregnancy and we were excited to find out that we were going to have a baby. We were excited to find out the baby’s gender,” she says.

But on that visit, they found out the little girl they were expecting had a structural heart defect—an underdeveloped heart ventricle.

Davis, who lives in Richmond, was referred to a cardiologist and then a perinatologist (an obstetrician-gynecologist who specializes in the management of high-risk pregnancies).

“They told us that UVA was the best place to go,” Davis says.

Birth and Surgery at UVA

Sydney Davis was born on December 4, 2006, at UVA, and eight days after her birth, she underwent the first of three surgeries to repair her heart.

Sydney’s condition is called tricuspid atresia. Babies with the condition have a missing or abnormally developed tricuspid heart valve. It’s a type of heart disease that’s present at birth (also called a congenital heart defect), and according to the National Institutes of Health, tricuspid atresia affects around 5 in every 100,000 live births.

Sydney’s first surgery included a Blalock-Taussig (BT) shunt placement, an atrial septectomy and pulmonary artery ligation.

“She actually had a rough go, but she was only in the hospital three weeks,” Christy Davis says. The new addition to the family made it home for her first Christmas. “That was a fantastic Christmas,” Christy says.

Congenital heart surgery on babies at UVA is performed in a particular operating room, where the goal is teamwork. The unique needs of babies with heart defects requires a set group of experienced people who specialize in treating these conditions, according to Daniel Schneider, MD, director of UVA’s Fetal Heart Program.

The program specializes in detecting, managing and treating fetal heart conditions and fetal heart rhythm disturbances.

The team at UVA starts work before the parents’ first visit. Carol Tatum, RN, a fetal cardiac nurse specialist, coordinates and supervises input from all members of the team.

“She rocks,” Davis says of Tatum. “She was always available via email to help with any questions we had.”

At UVA, fetal echocardiograms are performed by a group of four sonographers who have special training in imaging of congenital heart disease and advanced skills in identifying heart defects. The parents meet and get to know the entire UVA team so they are well prepared for the birth and the surgeries that will follow.

Two More Heart Surgeries at UVA

Sydney’s second surgery, the Glenn shunt came when she was just 4 months old. It made a big difference, Christy says. Feeding little Sydney was a long process for Davis. The baby needed to be fed from 6 a.m. until midnight each day. Each time she tried to feed, she would tire out and have to stop for a break.

But right after the Glenn procedure, the baby had more energy to drink a full bottle. “It was the first time she cried for food, and she guzzled that bottle down after surgery. She felt just so much better.”

There was still one more surgery to go. At 3 years old, Sydney underwent a Fontan procedure. Before the surgery, her blood saturation levels (the level of oxygen in the bloodstream) were low and she was literally blue, according to Christy. That’s normal for babies with Sydney’s condition.

But the Fontan procedure changes the blood flow in the body so babies can get that pink glow that most parents are familiar with, says Dr. Schneider. Fontan surgery separates virtually all of the deoxygenated blood (blue blood) returning from the body from the oxygenated blood (red blood) returning from the lungs. The oxygen saturations in the body are near normal and the child is no longer blue, but instead has the pink glow parents are familiar with, he says.

“When she came out, it was one of the prettiest pinks I’ve ever seen. Pink toes, pink tongue, pink fingers,” Davis recalls. Sydney’s saturation levels were in the 90s (normal is 98-100).

For Sydney, though, a case of swine flu three weeks after her surgery slowed down her progress, according to her mom. She spent a month in the hospital and was put on sildenafil citrate (commercially known as Viagra), which opens up the vessels and treats pulmonary hypertension. Her oxygen levels were down in the 40s at that point, Christy says. Doctors also inserted a pacemaker. It’s not placed in her shoulder, like it would be for an adult. Instead, it’s underneath the left side of her rib and she can feel half of it. Wires are attached to the outside of her heart.

Sydney refers to her pacemaker as her “computer.” The device allows doctors at UVA to review Sydney’s information remotely over the phone. The little girl even has a model of her implanted pacemaker. “Sydney shows it to everybody. She could not be prouder,” Christy says. In about 8 years, Sydney will return to get her pacemaker replaced.

Mended Little Hearts

Christy is active in the Mended Little Hearts Richmond chapter and previously served as the group’s co-coordinator.

She attended her first Mended Little Hearts meeting when she was 8 months pregnant. “I wanted to meet people in my same situation. It was such a lonely feeling. I didn’t know anyone with a child with a heart defect.

“I walked in that room and I got surrounded. It was the best thing ever. I knew after that meeting that there would be light at the end of the tunnel. It was uplifting.”

Mended Little Hearts also helps families in other ways. The Richmond chapter puts together care bags for families that have to travel for treatment and surgery. The bags contain items like phone cards, toothpaste and toothbrushes, gas cards, games and magazines. The group holds fundraisers to pay for the bags and to donate to research. They’ve also lobbied in Washington, D.C., for a bill that would make pulse oximetry tests mandatory for all infants before they leave the hospital. This test can spot congenital heart defects that might otherwise go undetected. (All babies born at UVA Children’s Hospital already receive pulse oximetry screening.)

A Normal Little Girl With a Special Heart

Sydney has follow up visits with her local cardiologist in Richmond, who communicates with specialists at UVA, but she’s living the life of a normal 5-year-old, her mom says. She’s in preschool and takes ballet and tap classes. She does need a lot of fluids to help with her blood flow.

“She runs around like most kids. She will slow down when she’s tired.” Dance is a great activity for her, Christy says, because it’s not high aerobic activity the entire time.

Her big sister, Aubrey, just finished second grade. And like most little sisters, Sydney wants to do everything her big sister does, like join the swim team.

“We do the best we can do to treat her as normally as possible,” Christy says. “Our little motto is, ‘We didn’t save her life for her to not have one.’ We tell her she’s got a special heart.”

Find out more about Mended Little Hearts and congenital heart defects:


Protect Infants (And Yourself) From Whooping Cough

On July 27, 2012 | At 10:56 am

Whooping cough has been all over the news. So far this year, almost 18,000 cases of this contagious disease, also known as pertussis, have been reported to the Centers for Disease Control and Prevention, CNN reports. Nine babies have died from the disease.

Why are babies more at risk? Babies can’t get the DTaP vaccine that protects against whooping cough, diphtheria and tetanus until they are 2 months old. Until then, they can catch whooping cough from adults who haven’t had a Tdap booster recently. (Learn more about whooping cough vaccines.) And infants are more likely to develop life-threatening complications, according to the CDC.

Some of the kids who have gotten sick are adolescents who have already been vaccinated. However, health officials still agree that getting vaccinated is the best way to prevent whooping cough and, in turn, prevent passing it onto an infant.

One Family’s Whooping Cough Story: “This Is Not How We Thought His Second Month of Life Would Be”

At 7 weeks old, Jack Berkley Jordan of Staunton is a local example of why these vaccinations are so important.

Jack Jordan of Staunton, Va., came down with whooping cough when he was 4 weeks old.

Jack Jordan of Staunton, Va., came down with whooping cough when he was 4 weeks old. Photo courtesy of Lauren Jordan.

Jack coughed twice on July 2. His mom, Lauren Jordan, knew even a slight cough could be serious, so she called the doctor. A pertussis test came back positive, and over the next three weeks, Jack was hospitalized twice. He went home July 21 but had to go back in the hospital a day later under the worst of circumstances:

“Jack completely stopped breathing at home. … We had to call 911; my husband and I had to give him rescue breaths on our way to the fire station. He was not breathing when we arrived there. Having my newborn lying in my lap unresponsive was a nightmare to say the least. A very special fireman, who is a father himself, saved Jack’s life. My husband also deserves credit because his safety plan and rescue breaths got us help and kept Jack going.”

Jack was admitted to UVA and may not be ready to go home until early August.

“Jack is fighting hard,” Jordan writes. “The doctors tell us he will beat this and be OK. He has good days and bad days. His coughing episodes are very scary. He turns red, blue and purple during some of them and even stops breathing/holds his breath. Pertussis is relentless and so hard on his little body. It really wears him out. Luckily, he is eating and growing well.”

The Jordans aren’t sure how Jack caught whooping cough. He wasn’t old enough for his DTaP vaccine, but his only outings in his first few weeks of life were to go to the doctor and the grocery store. “The grocery store trip was only a few days prior to his diagnosis,” Jordan writes. “Small babies like Jack get sick because people fail to immunize themselves and their children.”

Jordan hopes sharing her son’s story will prevent other cases. “While we are thankful that Jack is as healthy as he is, this is not how we thought his second month of life would be,” she adds. “As a mother, this has been so hard for me. I have often felt helpless. No one wants to see a tiny baby sick. Pertussis is called the 100-day cough. We hope by our hundredth day in October that this will just be something in the past that reminds us how blessed we are to have our sweet boy!”

Protect Yourself and Prevent Whooping Cough

If you’re in the Charlottesville area, you can get the vaccine from:

We blogged about whooping cough last December. Learn more about whooping cough and how to prevent it.


Close to Home: UVA Dialysis Clinics Offer Safe Treatment Throughout Virginia

On July 10, 2012 | At 9:46 am

Harold Skinner and Tony Turner both spend about 12 hours a week hooked up to a dialysis machine, but neither complains.

Reclined in comfortable chairs in front of a window looking out at the nearby mountains in rural Stanley, Va., the men say that if you need the treatment, this is where you want to be.

Dialysis clinic in Page

Tony Turner, left, and Harold Skinner spend about 12 hours a week at the UVA Dialysis center in Page.

“If you’ve got to do this, it’s great to be within a few minutes of your house,” Skinner says.  “Fifteen minutes and I’m here.”

The closeness to home is a big deal given the time needed to complete a dialysis session, and it helps to explain the concern that rippled through the community when the UVA Dialysis center in Page was slated for potential closing in 2010.

Patients on dialysis are often unable to drive, and the ability for many Page residents to get to clinics in Harrisonburg or Charlottesville was uncertain.

It’s likely many would have stopped treatment altogether.

“The community really rallied behind this clinic when the word came out that we could be closing,” said Susan Lucas, RN. “It’s very fortunate that UVA listened to the demand for the clinic and the need for it.”

Unsurpassed Dialysis Safety

The Page clinic is one of the eight dialysis centers in the UVA Health System. All eight were recently honored by the Mid-Atlantic Renal Coalition as 5-Diamond Patient Safety Facilities, meaning more than half of the 15 centers in Virginia with 5-Diamond status are UVA affiliates.

UVA Renal Services cares for 800 patients throughout central Virginia.

Debbie Cote, RN, the dialysis administrator at UVA, says factors behind the designation include a number of patient safety initiatives, ranging from making sure everyone is washing their hands to taking extra care to prevent slips, trips and falls.

“It’s extra work,” Cote says of making the effort to make the grade. “People always say we have too much to do, but it’s good for the staff and it’s good for the patients.”

Seeing a Difference in Page County

The clinics do not really tout the designation, but in Page County, Skinner says the commitment to safety is evident.

Skinner says he’s used other dialysis clinics where it seemed that “corners were cut.” That’s not a feeling he gets in Page County, which he calls the best clinic he’s been in, mostly due to the staff.

“I think it’s just the fact that they take their job so seriously,” Skinner says. “It’s a safe environment.”

Kathy Chappell, a social worker at the clinic, says developing a close relationship with the patients she sees so often is one of the happy by-products of the work.

“We refer to this as our dialysis family,” says Chappell.

In addition to the clinic in Page County, UVA operates the Kidney Center in Charlottesville and outpatient clinics in:

There are no announced plans for additional facilities right now, but Cote said additional facilities are likely needed to meet a growing demand.

She says, “We are always looking at where there’s a need and where we need to go next.”

Learn more about Kidney Care at UVA.

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Skipping Sunscreen? A Skin Cancer Patient’s Story

On June 12, 2012 | At 9:37 am
Using a broad-spectrum sunscreen can prevent skin cancer like melanoma and basal cell carcinoma.

Did you know? One person dies of melanoma every hour, and it’s the most common form of cancer in adults 25-29 years old.

Every spring, we begin seeing the magazine articles and public service announcements reminding us to wear sunscreen to prevent skin cancer.

But if you’re a fair-skinned 20-something like me, you might be tempted to disregard that information. Those same magazines that warn us about skin cancer tend to run the threatening articles next to ads with attractive, tan models. We’re told getting a tan could lead to deadly melanoma, yet pale skin seems to only be considered attractive if you’re a character in the “Twilight” series.

Then I met 81-year-old Dennis Hassel. Hassel, who lives in Stanardsville, Va., estimates he’s had 75-100 basal cell carcinomas, a common form of skin cancer, including about 30 spots on his face. He has a standing appointment with UVA’s dermatology clinic every three months to have cancerous spots removed.

And like me, Hassel used to think he looked good with a tan. “I wish I had known years ago, when I thought I was a sun god out there, what was going to happen.”

Skin Cancer: The Most Common Form of Cancer

More than 3.5 million U.S. residents are diagnosed with skin cancer each year, according to the Skin Cancer Foundation. That includes several thousand diagnosed through UVA’s dermatology clinic.

There are three common types of skin cancer. The vast majority of cases are basal cell carcinoma, a slow growing cancer, says Mark Russell, MD, vice chair of UVA’s Department of Dermatology. Squamous cell carcinoma is the second most common, while melanoma, the most deadly form, is the rarest of the three. Melanoma is more likely to spread and harder to treat, Russell says.

Hassel says his basal cell carcinomas are usually oval-shaped red spots, one-fourth of an inch or a little longer. They sometimes bleed and don’t heal, one of the symptoms of skin cancer.

He often undergoes a treatment called Mohs surgery, where the doctor cuts out his spot, sends it to a lab and gets the results while Hassel waits. If all the cancer is gone, the doctor stitches up the spot where it was. But sometimes the doctor has to go back multiple times to get it all out.

Afterwards, Hassel says, if the spot was on his face or neck, he has to sleep sitting up.

“That doesn’t bother me,” he says. “I think I’m very fortunate to have it done, and they catch it all and it’s fine.”

But not everyone who gets skin cancer will be fine. One person dies of melanoma every hour, the Skin Cancer Foundation says. It’s the most common form of cancer in adults 25-29 years old.

Basking in the UV Rays

Skin cancer happens like this: The sun produces two types of ultraviolet (UV) rays that reach the earth’s surface, UVA and UVB. The rays damage the DNA in skin cells, which can then turn into cancerous cells.

Hassel believes his skin was initially damaged when he was in his 20’s and had X-ray treatment for acne and rashes. But he lived in California and spent several hours outside every day, often just in shorts or a bathing suit, “laying down in the sun and baking,” he says.

He started to get the cancerous spots when he was about 30. Now he wears 100 SPF sunscreen, and he encourages others to remember to put it on their noses and ears.

“I can’t say enough about getting the word out to people who think they’re immune to the sun,” he says. “They’re not.”

Preventing Skin Cancer

Keep an eye on moles and other spots on your skin. The American Academy of Dermatology has a step-by-step guide for performing a self-exam.

See the doctor if you notice:

  • Moles or spots that change
  • Any of the ABCDE’s of melanoma
  • A growth or sore that bleeds sometimes and doesn’t heal

You can see more warning signs and images of specific skin cancers at the Skin Cancer Foundation.

It’s not enough to just put on sunscreen with a high SPF at the beginning of a day outdoors. SPF stands for Sun Protection Factor, and it indicates how much longer you could stay outside in the sun with the sunscreen versus if you have no sunscreen on. For example, if you could be in the sun for 10 minutes before you begin burning, a sunscreen with an SPF of 15 should, in theory, protect you for 150 minutes. But it’s not that simple, Russell warns.

Sunscreen breaks down, wears off, washes off and sweats off. And regardless of what the label may say (the FDA set new regulations about how sunscreens can be labeled, but they aren’t in effect yet), no sunscreen is really waterproof or sweatproof, Russell says.

So he recommends that you:

  • Apply sunscreen 15-20 minutes before going outside
  • Use a broad-spectrum sunscreen that protects against both UVA and UVB rays
  • Don’t skimp on it. You need about an ounce to cover your body — the amount it would take to fill a shot glass
  • Reapply every 1-2 hours, regardless of the SPF
  • Check the expiration date – sunscreen can expire and become less effective, but the FDA mandates it has to last three years
  • Seek shade when possible and avoid sun exposure between 10 a.m.- 4 p.m., the hottest part of the day

Russell also recommends you wear a wide-brimmed hat. His patients who come in with baseball caps still have sunburned necks and ears.

Get Screened and Checked

Have a suspicious spot on your skin? Find a dermatologist.

UVA’s dermatologists hold a free skin cancer screening every May. Like us on Facebook or follow us on Twitter to get the dates for this and other events.