UVA Health System Blog

Stories about the patients, staff and services of UVA

 

A Journey Without a Map: Facing Frontotemporal Dementia

On April 17, 2015 | At 8:56 am

Popular ideas about the symptoms of dementia or Alzheimer’s conjure up images of forgetfulness, a person lost in a familiar place or unable to recognize loved ones.

Chris VanNortwick

Chris initially responded to the FTD and ALS diagnosis by jumping into light weights and swimming.

This is not what it looked like when Mary VanNortwick’s husband of 20 years, Chris, started acting strangely. “If he was going to make a tuna salad, he would go buy the tuna, come home, then go to the store for the mayo; shortly after, I would see him grabbing his keys to go get the bread.”

She didn’t necessarily conclude that anything was wrong. “It was a very elusive situation. You question yourself, the other person, wonder if you are just wound too tight.”

In fact, when she took him for testing, she simply believed Chris needed some basic training in life skills like learning how to take care of his money or why he shouldn’t take phone calls from solicitors — and why he shouldn’t urinate in the neighbor’s planter. His filters on appropriate behaviors seemed to be waning.

But her husband did not need life skills. In November 2013, he was diagnosed with frontotemporal dementia (FTD). If that wasn’t enough, another evaluation five months later revealed that he also had amyotrophic lateral sclerosis (ALS). Both FTD and ALS are neurodegenerative disorders with symptoms that tend to overlap and even accelerate one another.

Mary knew something about ALS, nothing about FTD. She started reading. The disease damages the tissue in the part of the brain that regulates impulse control, planning and judgment, emotions, speech and movement. The early symptoms of FTD show up as unusual behavior. These changes start slowly, and usually show up when people are in their 50s or early 60s. No cures or treatments exist for either condition.

Strange Behavior? Get Evaluated Now

“When you see a decline in your own or someone else’s mental ability, it’s so important not to assume it’s normal aging,” Erin Foff, MD, says. “Some causes of cognitive decline are treatable. If we don’t diagnose and address them early, even these can be irreversible.”

One Day At a Time: Dementia, Decline

Needless to say, the prognosis stunned Mary, Chris and their two daughters. “It’s just not the course you thought you were going to be on,” she says.

Yet knowing what was going on helped explain what Mary was witnessing. She saw Chris losing motor skills and depth perception. He was “walking into doorways, not picking his foot up all the way, dropping things. And then there was the perseveration, when he latches onto something and won’t let it go. Not changing a pattern or getting off a thought.”

In a moment of lucidity, Chris told his wife, “I’m going to die.”

Mary says, “What can I say? Both conditions have 2-5 year lifespans, 1-3 years with both, our care providers say. So we’re just journeying through it now, taking one day at a time.”

For Mary, this means watching the two neurological diseases wreaking havoc on her husband, whose symptoms seem to leapfrog between two conditions. “We’re starting to see decline in the cells that carry language ability. In there behind his eyes, we know there is a thought to convey, but there isn’t the vocabulary to say it, the physical ability to speak. For instance, if talking about something in the holiday category, he’ll say Easter and mean Christmas. And now with ALS it’s hard for him to speak at all.”

As the diseases progress, Chris is often not in reality, but still aware. “It’s so weird,” Mary says, trying to explain. “One day, he looked at his tongue and his hands, said his nerves felt like fireflies under his skin in his cells where ALS was taking hold.”

Since Chris can no longer be alone, Mary relies on companion care to help.

Hunger for a Roadmap

The biggest struggle for Mary has been the unpredictability of how the disease will manifest. She explains:

You’re just watching this slow progression. You try to accommodate and stay one step ahead. And then it’s some other decline. There’s nothing that can tell me what will happen. And I understand; this is just life. It’s unfolding. It comes to us this way. But I hunger for a roadmap. You can prepare for anything. But not knowing what will happen? That’s the biggest strain.

Finding Support for FTD

While support groups exist for Alzheimer’s and ALS, none exist for FTD in Central Virginia, as it is a much rarer disease.

So Mary attends a support group for dementia and Alzheimer’s. “People hear dementia and think Alzheimer’s, but it’s very different. My husband’s brain is dying, much like circuitry — flickering neurons in his brain. Circuitry is firing, firing dimly, then not firing at all. It goes on and off all day long.”

Even though the conditions don’t present the same way, Mary says enough similarities exist to make the group worth her while. “The underpinnings are common: we’re all making adjustments. Helping them still live meaningful lives in whatever capacity they can. We have to pare things down and streamline communication to be better understood.”

It was at one of these meetings that Mary got advice she finds most valuable:

A new friend said to me, ‘Your job is to keep him safe. If he’s making you crazy because he has to do something one way and only that way, it doesn’t matter if it doesn’t matter.’ This advice has saved me. Makes me able to adjust to the decline. This is maddening, frustrating, but it doesn’t matter. It’s okay. That would have robbed me of all my wellness.

UVA Neurology

And at UVA, Mary found a team she calls “amazing” and “fantastic” in their efforts to help her prepare for the challenges ahead. “Of course, they provide excellent care. But they provide equally great personal care.” She gives examples of the warm nurses and front-desk receptionist who make their visits seamless.

“And at the beginning, Dr. Ted Burns said, ‘Tell me how your husband does life.’ I said, ‘The cup runneth over. Never just half full.’ And Burns said, ‘Then let him do ALS that way. Now, how do you do it.?’ I said, ‘Batter up.’ ‘So if you need information, get it,’ Burns said. ‘Talk to people. Do this the same way you do everything.’

Self-Care

A wellness professional, Mary knows the value of taking care of herself so that she can take care of Chris. “I go to bed, I get my sleep, I walk, I eat super well. I do things I enjoy, so when I’m with him I’m with him, fully present. If you’re not well, you’re not there, and nobody wins. So I try to make it first things first.”

A go-with-the-flow approach has helped Mary manage the constantly shifting landscape of her husband’s illnesses:

It’s a challenge and source of joy: Leaving as much in place as possible until it has to be taken away. The emphasis is on the afflicted as much as the caregiver. We can’t make their world prematurely small so that we can handle it better. I believe the best adjustment is one made from both ends at the same time giving consideration to all involved, preparing for the end while savoring the journey.

The Gift of Humor

Mary, Chris and their daughters have found using humor to sometimes be the best medicine when dealing with symptoms like delayed hearing, word-processing and reaction time.

This delay can be as much as 10-20 seconds, and it’s definitely increasing. We simply added, “Wait for it. Wait for it…”. Everyone laughs, including Chris. And there’s the misinterpretation of instruction. I’ll ask him to fill the dog’s bowl with dry food and he’ll get out the milk. Again, humor is invoked. “Really, Chris? Really?” He laughs and we start over. It’s impossible to respond with humor every time, but when we can pull it off, it never fails to make it better for everyone.

When Mary talks about Chris, her voice lilts with respect and pride. “He lives to serve other human beings,” she says. Even now, he volunteers, and she is grateful for the people he works with. “They’re trying to keep him engaged. He’s very valued. “

On top of that, Mary tells us that when he dies, Chris wants to donate his brain to FTD research at UVA.

Mary and Chris VanNortwick seizing the moments and the days.

Frontotemporal dementia and ALS mean Mary and Chris VanNortwick live every moment to the fullest.

As for herself, Mary faces the future with an unflinching bravery that also includes helping others. “I want to start a support group for FTD,” she says. “And bring people together to talk, especially since what’s really hard is how this disease manifests differently and at a different pace for everyone.”

Mary encourages others to reach out, and continues to do so in the lives of others around her. She speaks reassuringly: “Don’t face FTD alone.”

Get Help

Join a clinical trial: While there’s no cure and no FDA-approved medications for FTD, behavioral therapy can help minimize symptoms and UVA researchers are testing an experimental medication in a clinical trial.

Read a book: Mary recommends “The 36-Hour Day” by Mace and Rabins and “Dementia” by Susan Kiser.

Find online support from the national Association for Frontotemporal Degeneration.

Learn more about UVA’s expertise with dementia and ALS.

 

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Infographic: All About Organ and Tissue Donation

On April 16, 2015 | At 9:57 am

Organ transplants, organ donation and Donate Life Month

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Podcast Tuesday: Treating Pulmonary Hypertension [AUDIO]

On April 14, 2015 | At 10:24 am

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Maternity Monday: Prenatal Genetic Counseling FAQs

On April 13, 2015 | At 9:27 am

Pregnancy — or even planning a pregnancy — comes with a lot of questions.

Join us as we journey through preconception, pregnancy, childbirth and beyond in a series we call Maternity Monday.

Join us as we journey through preconception, pregnancy, childbirth and beyond in a series we call Maternity Monday.

You may have heard that the older you get, the higher your baby’s risk of Down syndrome. Maybe one of your relatives has sickle cell anemia or cystic fibrosis. How do you know how high your baby’s risk is? Are the screening tests you’ve read about worth it?

We sat down with prenatal genetic counselor Logan Karns, who frequently sees couples wrestling with these issues, and asked her some common questions.

What is prenatal genetic counseling?

Genetic counseling is a process of gathering information and evaluating the risk for a woman to have children with certain genetic conditions. I look at the couple’s family history and, if they are already pregnant, we discuss any screening tests they may have had.

If they are at a higher risk to have a child with a specific genetic condition, or if they have already had a screening test that indicates a birth defect, we talk about the next steps. This helps them to decide if they want to have more testing.

What are the chances of a significant birth defect in a low-risk pregnancy?

The background risk for any couple to have a child with a birth defect is 2-3 percent. The risk increases if the mother:

  • Is over 35
  • Has a family history of birth defects
  • Had a previous child with a birth defect

Many birth defects happen by accident, with no known cause. When they do happen, most women wonder whether the birth defect happened because of something that they did. We try to reassure women that this is not the case.

What are the more common conditions you’re looking for?

  • Spina bifada
  • Cystic fibrosis
  • Down syndrome
  • Heart defects
  • Sickle cell anemia

“Common” is, of course, a relative term, and everyone needs to look at a number and decide whether it feels like a high risk or a low risk to them.

When should a couple see a genetic counselor?

what is prenatal genetic counseling

Prenatal genetic counselor Logan Karns

Usually I see couples in their first trimester. But it’s also not uncommon for me to see women in their second trimester, after they have received abnormal results from a screening test or procedure.

The best time for us to see people is before they are pregnant. We go through their family history, answer questions and talk about different approaches to screening based on either their family history or their ethnic background.

It is helpful to hear the information and make choices ahead of time. It can be more complicated when couples come in and they are already pregnant, and they have to make choices in a timely way. If we review the family history and identify something that requires testing, then timing can be a critical element.

What prenatal screenings and tests detect genetic conditions?  

First trimester screening

Type of test: Blood test and ultrasound

When performed: Weeks 11-14

Recommended for: All pregnancies

Screens for: This test gives you your baby’s risk for certain chromosomal abnormalities, including Down syndrome. However, as it’s not a diagnostic test, you’d need more testing to determine if your baby has these conditions.

Non invasive prenatal screening (NIPS)

Type of test: Blood test

When performed: After 10 weeks

Recommended for: High-risk pregnancies, women over 35

Screens for: Specific chromosomal abnormalities. Like first trimester screening, this is a screening test and you’d need a diagnostic test to be completely sure. 

Chorionic Villus Sampling (CVS)

Type of test: Placental cells collected either by using a catheter that goes through your cervix or by inserting a needle through your abdomen (similar to amniocentesis)

When performed: Weeks 11-13

Recommended for: High-risk pregnancies, women over 35

Screens for: Chromosomal abnormalities and genetic disorders

Amniocentesis

Type of test: Amniotic fluid cells collected through a needle inserted into the amniotic sac through your abdominal wall.

Timing: Weeks 15-22

Recommended for: High-risk pregnancies, women over 35

Screens for: Chromosomal abnormalities and genetic disorders.

QUAD Screening

Type of test: Blood test

Timing: Weeks 15 to 21

Recommended for: All pregnancies, offered to women who haven’t already had a screening test

Screens for: Down syndrome, trisomy 18 and spina bifada, but like FTS and NIPS, you’d need a diagnostic test if your results are abnormal.

A lot of these tests are recommended for women over 35. What’s so special about 35?

Because amniocentesis and CVS are considered invasive tests, there is a risk of complications, including miscarriage. The chance to have a miscarriage depends on which test you choose. At 35, the odds of having a baby with a chromosomal abnormality like Down syndrome or Trisomy 18 are about equal to the odds of having a complication from one of these diagnostic tests.

Why is NIPS only recommended in high-risk pregnancies?

The majority of studies involving NIPS have so far only looked at high-risk women.  At this time, there is not enough information about the ability of the test to be helpful to low-risk women. The current recommendation from the American College of Obstetricians and Gynecologists is therefore not to offer NIPS to women considered low-risk. UVA has chosen to follow those recommendations.  This may change as more published data become available.

I’m adopted and don’t know my family history. Should I still see a genetic counselor?

Genetic counseling isn’t just about going through your family history. We can still talk to you about your risk factors, including your ethnicity and the chances of a birth defect based on your age.

What happens if screening does reveal a significant birth defect?

When a birth defect is diagnosed during a pregnancy, support services are available to help parents decide how to manage their pregnancy. This is obviously a very painful and complicated time. We work with pregnant women and their families to outline all the options, help them choose how they would like to proceed and get them the support that they need.

Interested in meeting with a prenatal genetic counselor? You can:

 
 

Organ Donation: Setting the Record Straight

On April 9, 2015 | At 10:05 am

Twenty-one people die each day waiting for an organ transplant. The shortage of available organs contributes to these deaths. Because common misconceptions about organ donation stops many people from becoming donors, we’re here to provide the facts so you can make an informed choice suitable for your life.

Organ Donation: The Basics

The U.S. Department of Health and Human Services defines organ donation as “the surgical process of providing one or more organs to be used for transplantation into another person. Organ donors can be deceased or living.”

Organ transplant at UVA

Click to view larger size

Deceased donors can provide:

  • Kidney
  • Pancreas
  • Liver
  • Lungs
  • Heart
  • Intestines
  • Tissue (bones, skin, heart valves, veins)
  • Corneas

Living donors can provide:

  • Kidney
  • Portion of the liver
  • Portion of the lung
  • Portion of the intestine
  • Portion of the pancreas

At UVA, only two kinds of living donations are performed: kidney and liver. The donor can be a family member or a non-related community member. An altruistic living donor is an individual who wishes to donate to a stranger in need without previous knowledge of the recipient. Generally, adult organs get transplanted into adult patients and children to children. However, in circumstances where size isn’t a factor, adult and pediatric organs can be used for larger or smaller recipients.

Doriane Perkins, RN, has held several different positions within UVA for almost 30 years. Currently, she is one of the managers for transplant services and part of a one-of-a-kind team that includes surgeons, nurses, nutritionists, social workers and others.

She strongly believes in public education regarding organ donation and spoke with us to dispel common myths about the donation process.

Organ Donation Myths vs. Facts

Myth: If I’m a donor, the hospital staff won’t work as hard to save my life.

Fact: Regardless of your donation status, the hospital staff focuses on saving your life. Your care team is made up of different clinicians from the transplant team, so there’s no possibility of influence by your donation status. As the transplant surgeon isn’t involved in your care, he/she won’t know anything about you until donation consent has been obtained.

Testing to confirm brain and/or cardiac death is extensive and always completed prior to any organ donation surgery.

Myth: Organs from ethnic minorities aren’t needed.

Fact: Organs aren’t matched according to race or ethnicity. However, transplant recipients have a better chance of receiving one if there is a large population of donors of the same race and/or ethnicity. Compatible blood types and tissue markers found among members with similar genetic backgrounds lessen the chance of rejection after transplant.

Myth: My family will be charged if I donate my organs.

Fact: There’s no cost to donors or their families for organ or tissue donation. Your medical care, and therefore your expenses, stop as soon as you or a family member passes away. The organ procurement organization, the transplant center and the recipient’s insurance assume responsibility for all transplant-related expenses.

Myth: I don’t need to tell my family that I’d like to be a donor because it’s already in my will.

Fact: By the time your will is read, it will be too late for you to be a donor. Donation is very time-sensitive. The longer deceased individuals are artificially sustained, the more susceptible they are to infection and other medical complications. If infection occurs, the organs won’t be viable for donation. If your family doesn’t know about your wish to donate and they do not consent to the donation process, the donation won’t occur.

Myth: I’m too old or too young to donate.

Fact: Anyone, regardless of age or medical history, can sign up to be a donor. At the time surrounding death, the organ procurement organization and the transplant center will determine if donation is possible and if so, which organs might benefit a potential recipient. Eyes, corneas and tissue age differently than the heart and lungs and have greater viability.

Why Should I Donate?

There are numerous motivations for becoming an organ donor.

One organ donor can save up to eight lives. Currently, 123,329 people are waiting for an organ — that may be your spouse, child, parent, friend or stranger. Regardless of the donor or recipient, every donation makes a difference.

“Donation is a life-changing and lifesaving gift,” says Perkins. “There are still people who don’t trust the process, but we need to balance fear with facts, and we do that with education.”

Some individuals believe there’s no need for their organs after death, so they want someone in need to have them. Others find organ donation can help loved ones through the grieving process, in that a piece of the deceased individual still lives on.

Other donors find satisfaction in giving people a gift they can’t easily or readily receive. “The reasons people donate are just as different as the people are,” says Perkins. “Humans have some fundamental need and desire to help others.”

UVA’s Collaboration With LifeNet Health

Transplant Team

UVA works with LifeNet Health and UNOS to match viable donations with recipients.

A Virginia-based organ organization, LifeNet Health, has experience in organ procurement, transplant solutions and bio-implant technologies. UVA’s partnership with LifeNet Health helps ensure our patients receive the highest form of care and consideration through the organ donation process.

Anytime a death occurs, there is a period of crisis, confusion and disbelief. Although the deceased may be an organ donor, there is no rush or push for the family to consent to the donation process. LifeNet provides grief counselors and family support coordinators to explain the process in detail and dispel any myths the family might have.

Once death is pronounced, the care team at UVA will work together with LifeNet Health and the United Network for Organ Sharing (UNOS) to place all viable donations with a matching recipient.

Interested in Becoming a Donor?

Every state provides access to a donor registry where residents can indicate their donation decision. There are three steps to becoming a donor:

  1. Register with your state donor registry.
  2. Designate your decision on your driver’s license.
  3. Talk to your family and help them understand your wishes about organ and/or tissue donation.

It’s vital that you tell your family about your wishes to donate. They can serve as your advocate and give consent or provide medical information to your care team. You can be a donor without preregistering with your family’s permission. But if you wish to be a donor with no record of consenting and your family doesn’t consent, the donation process won’t occur.

Transplants at UVA

Researching organ donation and transplants? Learn more about UVA’s transplant program, doctors and staff.

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Podcast Tuesday: A Breakthrough Stroke Treatment [AUDIO]

On April 7, 2015 | At 8:48 am

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Maternity Monday: Unusual Conditions in Pregnancy

On April 6, 2015 | At 9:33 am

Soon after the Royal Family announced Kate Middleton’s pregnancy, hyperemesis gravidarum began making headlines. Many had never heard of the condition before, but women who get it experience such severe nausea and vomiting that they may need to be hospitalized.

Join us as we journey through preconception, pregnancy, childbirth and beyond in a series we call Maternity Monday.

Join us as we journey through preconception, pregnancy, childbirth and beyond in a series we call Maternity Monday.

Hyperemesis is rare, but knowing the symptoms and communicating with your doctor can lead to a healthier and happier pregnancy.

Strange Symptoms in Pregnancy: What to Do

Many pregnancy-related conditions have no risk factors, so it can be hard to know if your lower back pain or itchy hand is normal or something more serious. “This is why patient education and regular contact with your provider ends up being so important,” says Christian Chisholm, MD, a specialist in high-risk pregnancies.

Talk to your provider about symptoms that concern you. At UVA, maternity patients can call a doctor or nurse 24/7.

Cancer During Pregnancy: One Mom’s Story

Two weeks after learning she was pregnant with her third child, Amber Young found out she had thyroid cancer.

She had no symptoms. Instead, Young, 36, sought out her dermatologist for a painful mole. He referred her to a plastic surgery specialist, who found a nodule on the right side of her thyroid and promptly scheduled an ultrasound.

That nodule turned out to be benign, but she had another one on the left side. It was a small tumor.

Fortunately, it hadn’t spread to other parts of her body. Doctors believed it had developed recently and had no link to her pregnancy. Her surgeon, John Hanks, MD, operates on several pregnant women a year and worked closely with Young’s obstetrician.

In her second trimester, Amber had a thyroidectomy, surgery to remove her thyroid. Five months later, she gave birth to a healthy baby boy, Elijah.

Amber had thyroid cancer while she was pregnant

Amber Young battled thyroid cancer during her pregnancy, but she gave birth to a healthy baby boy named Elijah. Photo courtesy Marcy May Photography.

Amber isn’t done with her treatment. She continues to see her oncologist, James Boyer, MD, at UVA Hope Cancer Care Charlottesville. She’s waiting until she finishes breastfeeding before receiving a radioactive iodine treatment, a form of radiation therapy where she becomes radioactive and won’t be able to be around her children. And she’ll be taking medicine for the rest of her life.

Meanwhile, she’s enjoying life with Elijah and her two older children and husband.

Amber’s cancer had nothing to do with her pregnancy, but you may be surprised by other pregnancy-related conditions. Here are a few more to be aware of:

Preterm Labor

Preterm labor occurs before the 37th week of the pregnancy. It’s “the leading cause of infant mortality, and about 50 percent of women who deliver preterm don’t have any identifiable risk factors,” Chisholm says.

Teens are more likely to have premature babies. Other risk factors include:

  • Previously having a premature baby
  • Excess amniotic fluid (the fluid surrounding the fetus)
  • Being pregnant with twins or other multiples

Symptoms of premature labor include:

  • Contractions
  • Bleeding or a mucousy discharge
  • A vague sensation of pressure in the pelvis
  • Lower back discomfort

Preeclampsia

If you have hypertension, also known as high blood pressure, prior to pregnancy, you’ll work with your doctor from the start to manage it. But some women develop preeclampsia, a combination of hypertension and protein in the urine, in the third trimester. (Read one mom’s preeclampsia story.)

Preeclampsia may progress into eclampsia, or seizures during pregnancy, and is associated with poor growth of the fetus, placental abruption (separation of the placenta from the uterus, which causes bleeding from the placenta) and damage to the mother’s kidneys, liver and other organs.

Doctors must monitor patients with preeclampsia carefully to avoid eclampsia and other complications. In some cases, the baby may need to be delivered early.

HELLP Syndrome

HELLP syndrome is a form of severe preeclamsia. It can destroy the mother’s red blood cells, damage her liver or cause severe bleeding.

According to Chisholm: “It’s associated with a higher rate of severe complications for both mother and baby, including premature birth and blood loss at the time of delivery.”

Cholestasis

“Profound generalized itching without a rash.” That’s how Chisholm describes cholestasis. The itching is often on the palms of your hands and soles of your feet.

This uncomfortable condition occurs when the expecting mother’s liver isn’t processing bile normally, leading to increased bile acids in the mother’s blood.

“Mainly we worry about the baby because there are reports that stillbirth occurs more commonly when the woman has cholestasis of pregnancy, for reasons that are not fully understood,” Chisholm says. “In more severe cases, permanent liver damage could also occur.” Doctors manage the condition with medication and careful fetal monitoring.

PEP/PUPP

Some people call it PUPP, others PEP, but both terms refer to an itchy, slightly raised rash. Doctors don’t know the cause, but the rash doesn’t cause any other problems for the mother or baby and doctors prescribe antihistamines to treat.

Even with treatment, “for some women the itching can be almost disabling,” Chisholm says. The itching and rash may continue after delivery for six months or even longer.

Pica

Expecting moms with pica crave non-food substances such as ice, clay, powdered laundry starch and dirt. Chisholm says often the woman has an underlying iron deficiency, but this condition is not well understood.

Tell Us Your Story

Did you develop one of these conditions while pregnant? Leave a comment below to share your story.

 
 

Hate Cancer, Love Babies: March 2015 Roundup

On April 3, 2015 | At 9:26 am

Breaking news: We officially have a new blog name — Healthy Balance! Thank you all for voting, and please stay tuned for our new redesign to come!

In March, we kicked off our Maternity Monday series! Follow the series every week as we journey through preconception, pregnancy, childbirth and beyond. Our currently published Maternity Monday stories:

Join us as we journey through preconception, pregnancy, childbirth and beyond in a series we call Maternity Monday.

Join us as we journey through preconception, pregnancy, childbirth and beyond in a series we call Maternity Monday.

It’s been an exciting time for cancer research and development:

UVA In the News

Some of our stories made the news:

 
 

Transplant Coordinators: With You Through the Journey

On April 2, 2015 | At 9:00 am

When choosing a place to get your organ transplant, you’ll want to weigh factors like survival data, surgeon experience, research innovation and hospital reputation for delivering high-quality care.

how transplant coordinators help you through the transplant process

Transplant coordinator Doriane Perkins, RN, MSN

Along with above-average outcomes, excellent surgeons, a robust research program and extensive experience, the UVA Transplant Center has another key ingredient you should consider: their transplant coordinators.

“From the moment you come into the clinic, referred by your doctor to see if transplant is even an option for you, you are assigned a coordinator,” says Doriane Perkins, RN, MSN.

Perkins and her colleague, Ben Beitzel, manage the over 40 transplant coordinators at UVA, and she’s explaining the crucial role they play for every transplant patient. “It’s a very complex and multifaceted position.”

Shepherding You Through the Journey

Perkins likens a transplant coordinator to an advocate or an ambassador, a person ensuring your needs are met throughout the transplant process. They educate you and your family about the evaluation process, getting on the organ wait list and your responsibilities before and after surgery. They will also help you through what can be a complex system of appointments, paperwork, financial matters and diagnostic tests.

Transplant coordinators help you:

  • Understand what transplant means for you and your family
  • Learn about your medical condition
  • Gather and complete paperwork
  • Deal with finances
  • Prepare for tests
  • Understand test results
  • Monitor your medications
  • Make sure your whole care team is kept up to date, serving as the contact person for your doctor or dialysis center

Not to mention, there’s a lot of information to digest.

“We educate our patients constantly. They may talk to the doctor, get overwhelmed, go home and have a lot of questions. We help you put the whole picture together.”

And the transplant coordinator team takes questions any time. “We have 24/7 call system,” Perkins says. “An 800 number, available every day of the week. For any questions along the way, we are here.” 

Phases of Care: The Transplant Journey

Transplant coordinators serve as the primary contact person for their patients – before, during and after transplant, on an ongoing basis. 

Before Transplant: Determining Eligibility

Once you’re referred to a transplant center by a primary care doctor, an evaluation process takes place. A thorough one. “We have more people who need organs than organs available,” Perkins explains. “So we as a team have to be good stewards of a scarce resource; we only want to put an organ in someone who will be successful and end up with a better quality of life.”

So the exam process is lengthy and comprehensive. Transplant coordinators, doctors, surgeons and nutritionists assess various medical and personal factors.

“Everybody on the team has a say; the whole team has to agree that transplant is a good treatment option for each patient,” Perkins says, “Because transplant affects every aspect of a person’s life. It’s not just a matter of if you’re going to get through the surgery safely — it’s life-changing.” 

During and After Transplant

If and when an organ becomes available, your pre-transplant coordinator hands you off to the hospital transplant team. After transplant, you are assigned another coordinator who will work with you from that point on.

In this role, the coordinator “follows your labs closely in order to help you maintain your transplant organ function. We will see you in clinic on a regular basis. We will help you with adjusting your medications and do anything we can to help you adjust to all the changes in your life after transplant.”

Even after the surgery recovery process, the transplant coordinator remains a patient’s lifeline.

Perkins explains, “If you wake up on a Sunday morning and have a fever, saying, ‘I don’t feel good,’ you can call their coordinator, and we will do an assessment right then and there,” determining the next best steps.

“We help people through the whole experience, through the highs and lows.” In the end, Perkins concludes, “We want, not just a great experience for our patients, but a successful outcome. “

Who are the Transplant Coordinators?

All transplant coordinators are experienced nurses.

Perkins looks for coordinators with “an ability to make a lot of independent decisions, work with a multidisciplinary team and form long-term relationships with patients.”

The relationships transplant coordinators develop with their patients are uniquely close and often long term. “We connect with a patient, through thick and thin, help them through the birth of their children, the marriage of their kids, a really strong bond, you see them over years. It’s a special relationship.”

The coordinators form long-term connections with coworkers, too. “The transplant team works closely together and know that for better or worse, we have each other. This makes a strong team. People tend to come work with transplant patients and then stay. We love our jobs, and we believe in transplant. We are committed, and that comes through to our patients.”

More on the Transplant Experience

Are you a candidate for liver, kidney, lung, heart or pancreas transplant?

Learn more about how we help you through and what the stages are of the transplant journey.

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The New Blog Name Is…

On April 1, 2015 | At 10:18 am

Thanks to all who voted for the new blog name! Between the two options, Healthy Balance and Healthful, Healthy Balance won with 70 percent of the votes.

We’ll be redesigning our blog in the coming months. Stay tuned by signing up for email updates.

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