University of Pennsylvania Health System

Lung Transplant Update | Penn Medicine

Thursday, August 27, 2015

Papal Visit Plans: Appointment Changes for Friday, September 25 and Monday, September 28

The week of September 21, 2015, Philadelphia will host an international conference, the World Meeting of Families, which culminates with a three-day visit from the leader of the Roman Catholic Church, Pope Francis.

We share in the City’s pride at having been selected to host these events. At this time, Penn Medicine is taking steps to plan for the impact of approximately two million attendees at the event, as well as the high level of security required for a world dignitary. It is expected that travel on major streets will be heavily restricted.

For these reasons, outpatient transplant appointments for Friday, September 25 and Monday, September 28 are being rescheduled. In the next few weeks, you will receive a letter noting the need to reschedule your appointment. Please feel free to contact the team in advance to reschedule for another appointment time that will be convenient for you.

We apologize for any inconvenience this may cause. Your transplant coordinators are available to answer any questions or concerns you may have about this appointment change.

The Penn Kidney Transplant Team would like to thank you for understanding the circumstances that have created the need to reschedule. We look forward to seeing you soon!

Wednesday, August 19, 2015

Karen's Story: A Second Chance for a New Beginning

There is no specific reason why Karen got the inflammatory disease, sarcoidosis. It’s idiopathic, meaning doctors haven’t been able to pinpoint a definitive cause. For the majority of people with sarcoidosis, they don’t suffer any symptoms and the disease clears up by itself. For Karen, it was different: It led to the complete deterioration of her lungs and heart. This is her story.

A Diagnosis of Sarcoidosis

When Karen was 40 years old, she noticed the skin in the area of her appendix was no longer supple and seemed to be hardening. She’d had her appendix removed nearly 30 years prior, and there didn’t seem to be anything else that was wrong. Rightfully concerned, she went to her dermatologist, who took a biopsy.

The dermatologist found that Karen had sarcoidosis, a disease in which inflammation occurs in certain organs of the body, most commonly in the lungs or lymph nodes. Karen saw the inflammation through the hardening of her skin.

Doctors think that sarcoidosis may be an immune reaction to an infection that then persists even after the infection is cleared from the body. In most cases it goes away on its own, but in some cases sarcoidosis can get worse and become life-threatening.

Karen’s doctors decided to wait and see if it went away, but years later she experienced mucus in her chest and had trouble breathing. She went to Penn Medicine pulmonologist, Morris Swartz, MD, at Penn Presbyterian Medical Center. Dr. Swartz took a chest x-ray and found that the sarcoidosis had spread from her skin, and she now had scar tissue growing in her lungs. Because of its effect on her lungs, she needed to start wearing oxygen.

A Diagnosis of Pulmonary Hypertension

Three years after she went on oxygen, Karen felt very sick and went to the emergency room. Doctors discovered that the scarring and lack of air getting to her lungs had resulted in pulmonary hypertension. Pulmonary hypertension is abnormally high blood pressure in the arteries of the lungs. It starts when tiny arteries in your lungs become narrowed or blocked, making it harder for blood to flow through your lungs. As the pressure builds, the right side of the heart has to work a lot harder than normal to pump blood through the lungs. The pressure caused Karen’s heart muscle to weaken and fail.

“I was told by the specialist that one more day and I probably wouldn’t have woken up the next day,” says Karen.

After being hospitalized for two weeks, Karen left with a catheter in her chest, a canister that she had to wear to administer medication, and an oxygen cart.

Her quality of life significantly declined.

“I was on 10 liters of oxygen and, for anyone who doesn’t know, to be on two liters is a high level,” explains Karen. “To be on 10 meant that, basically, I couldn’t go out of the house 'cause the pushcart canister ones only go up to six. … It was arduous even to go to the bathroom with all of this equipment hooked up to me. … If I went out, I couldn’t do anything; I couldn’t walk anywhere. I had to get back home and mix the medicine 'cause you have to have that on 24 hours a day. If you run out or if the canister breaks, you have to hurry up and change it. I had to retire from my job as a real estate agent.”

Her lung transplant pulmonologist, Vivek Ahya, MD, told Karen that her five-year prognosis didn’t look good and encouraged her to get a transplant, but she refused.

It was when she went to Good Shepard Penn Partners for rehabilitation that she saw the light.

“One of the things they encourage you to do [after you have a transplant] is to stay healthy and to exercise. When I went to rehab, I saw people [who had just had a transplant] come in. They were maintaining themselves well after the transplant, and I thought, ‘I'm getting more sick, and the [rehab’s] not helping. There's not going to be a cure for pulmonary hypertension yet.’”

She decided to go on the waiting list.

The Transplant

“Mommy’s awake! Mommy’s awake!” were the first words Karen heard.

She had been on the waiting list for a lung transplant for two years before she received the call to come in to Penn and have surgery.

The transplant had complications. Karen experienced internal bleeding; her body was swelling and holding water. Doctors placed her on a machine called extra corporeal membrane oxygenation (ECMO) that oxygenates the lungs, giving them a chance to recuperate while they’re trying to get rid of fluid and swelling. On ECMO, with doctors working to save her life, Karen slept in an induced coma for 16 days.

When she finally woke up, her family surrounded her.

Her lung transplant surgeon, Edward Cantu III, MD, told her, “Karen, I did everything I could. You were not going anywhere. I was going to make you all okay.”

And she was okay.

A New Beginning

After her transplant, Karen had a long road to recovery with a lot of therapy. Atrophy had set in from the coma. She also had to relearn how to do daily tasks – things most people take for granted like how to make a bed, turn on a stove to cook, walk up the stairs.

Today, she is careful not to expose herself to certain agents so she doesn’t get the flu or a cold. She worries about lung rejection. She works hard to keep herself healthy. But it’s worth it.

Karen and her granddaughter
“I can do just about everything I could before I got sarcoidosis,” she says. “I can go up steps, walk, hold my grandbaby. I just became a grandmother four months ago – my first grandchild.”

Karen’s advice to others considering going on the waiting list:

“Be proactive. Keep yourself in good shape and eat correctly. If you’re afraid, speak to someone. Penn's Harron Lung Center and Lung Transplant Program have a wonderful support system from the doctors to the nurses to the support groups to the patients. Speak to a specialist there. And take the chance because you won't regret it.”

An empty oxygen tank sits in Karen’s house as a reminder of the past and as a motivator to keep herself healthy.

If you're suffering from lung disease, make an appointment with Penn's lung program.

Thursday, August 13, 2015

Congratulations, Dr. James Lee!

We are excited to announce that James Lee, MD, has been appointed the medical director of the Penn Lung Transplant Program.

The Lung Transplant Program has been fortunate to have Dr. Lee on staff since 2008, when he first joined the team to serve patients as a transplant pulmonologist. In 2011, he was appointed to the leadership position of associate medical director of the Lung Transplant program. 

If you haven’t yet had the opportunity to meet him, check out this video where he talks about his view of the Lung Transplant Program.

In addition to his commitment clinical excellence, Dr. Lee's academic accomplishments include more than 30 publications and numerous invitations to speak locally and nationally.

He earned a Bachelor of Science degree from Harvard University and completed medical school at the Perelman School of Medicine at the University of Pennsylvania. His education continued with the Internal Medicine Residency at Johns Hopkins Hospital. He then returned to the University of Pennsylvania in 2004 to complete the Pulmonary/Critical fellowship training.

It's an exciting time of growth for Lung Transplant's clinical and research programs. As medical director, Dr. Lee will partner closely with surgical director Christian Bermudez, MD, and director of clinical practice Nancy Blumenthal DNP, CRNP, to lead the Program.

After a decade of service as the medical director, Vivek Ahya, MD, will be turning his focus to new administrative responsibilities in the Pulmonary Allergy and Critical Care Division and the Harron Lung Center. Dr. Ahya will remain clinically active in the Lung Transplant program and continue to work closely with Dr. Lee.

Friday, August 7, 2015

National Minority Donation Awareness Week

During National Minority Donor Awareness Week, we wanted to share some information about why it's critical to increase the number of African American, Hispanic, Asian American and Pacific Islanders who say “yes” to organ donation.

According to the U.S. Department of Health and Human Services (HRSA), donors from the same ethnicity are more likely to be compatible. While organs are not specifically matched based on ethnic groups, HRSA notes that tissue markers and blood types are more likely to be found among members of the same ethnicity.

This is especially important because African Americans, Hispanics, Asian Americans and Pacific Islanders currently comprise 58 percent of the United Network of Organ Sharing (UNOS) transplant waiting list. According the Organ Procurement and Transplantation Network, last year 12,205 people of color received transplants, while 4,582 people of color went on to become organ donors.

The number of people of minorities waiting for an organ to become available, combined with the difficulty in finding compatible matches and the disproportionate number of African American, Hispanic, Asian American and Pacific Islander donors significantly contributes to the tragic reality that 18 people a day die in the United States waiting for an organ to become available.

In addition to this sobering statistic, many of the conditions leading to the need for a transplant — such as diabetes and hypertension — occur with greater frequency among people of color.

While research shows that the decision to donate is complex — with several different factors influencing families deciding about the opportunity to donate — experts agree that myths and misconceptions continue to keep people from all ethnicities from adding donor designation to their driver’s license and saying “yes” to donate a loved one’s organs.

Gift of Life Donor Program offers helpful myth busters to help people make decisions about organ and tissue donation based on facts instead of misinformation or fears. Here are a few misconceptions about organ donation followed by the facts from the Gift of Life web site:

Myth: If I'm in an accident and the hospital knows that I am designated as a donor, the doctors won't try to save my life.

Truth: Doctors, nurses and paramedics will do everything they can to save your life. In fact, an individual must be in a hospital, on a ventilator and pronounced brain dead in order to donate organs. Gift of Life Donor Program is not notified until life-saving efforts have failed. The transplant team is not notified by Gift of Life until permission has been given by the deceased’s family.

Myth: If I am a registered donor, doctors may remove my organs before I have passed away.

Truth: Brain death (when the brain dies due to lack of blood and oxygen) is a medically, legally and morally accepted determination of death. To determine brain death, more than one diagnosis of brain death and a series of tests over a period of time are required before the donor's family is presented with the opportunity to donate.

Myth: Organs can be bought or sold on the black market.

Truth: These stories are untrue and have become harmful urban legends. Due to the complexity of transplantation, the necessity of involvement from highly trained medical professionals, the process of matching donors with recipients, the need for modern medical facilities and the support necessary for transplantation make it impossible for this to actually happen. The buying and selling of organs and tissues is illegal, as part of the National Organ Transplant Act.

Myth: I am too old to be a donor.

Truth: There is no set age limit for organ and tissue donation. At the time of death, trained medical professionals will evaluate patients on a case-by-case basis to determine which organs and tissues are suitable for donation. Therefore, people of any age wishing to become organ and tissue donors should indicate it on their driver’s license and inform their family of their wishes.

Check out the Gift of Life Donor Program’s web site for more organ and tissue donation myth busters. If you’d like to learn more about what you can do to increase organ and tissue donation in your community, contact the Community Relations team from Gift of Life Donor Program at 1-800-DONORS-1.