University of Pennsylvania Health System

Lung Transplant Update | Penn Medicine

Thursday, October 30, 2014

Happy 40th Birthday, Gift of Life!

Look who’s turning the big 4-0: The Gift of Life Donor Program! As our region’s federally designated, non-profit, organ procurement organization, Gift of Life continues to set national records for the number of organ donors per year, as well as the number of organs recovered per donor – making it one of the busiest and most successful organ procurement organizations in the country.

As we celebrate Gift of Life’s exciting milestone and ongoing successes, the Penn Lung Transplant team thought it would be the perfect time to share some helpful information about the organ donation and transplant system in the United States and the critical role played by organ procurement organizations (OPOs).

When did OPOs begin to connect donors and recipients?

To answer that question well, we’ll need to take a quick look back to understand the beginnings of donation and transplantation. In 1967, when Penn surgeons were among the first in the country to begin doing kidney transplants, kidneys were only recovered from living donors. When brain death protocols came into practice and organs from deceased donors became an option, organs recipients were identified from a small geographic area – in very close proximity to where the organ donor died. This made transplantation an option for a small percentage of people who needed transplants.

As advances in transplant surgery evolved and the first medicine to stop organ rejection was approved by the Federal Drug Administration, more organs were able to be transplanted. Transplant continued to become an effective treatment for end-stage organ failure; it became clear that a national system was needed to fairly distribute deceased donor organs to those who needed them.

In 1984, the National Organ Transplant Act (NOTA) was signed into law. This law created the Organ Procurement and Transplant Network (OPTN) for matching donor organs to waiting recipients and is administered through the United States Department of Health and Human Services Health Resources Administration. NOTA also called for the responsibilities of the OPTN to be carried out by a private, non-profit organization under federal contract. The United Network of Organ Sharing (UNOS) was awarded the contract in 1986 and continues to administer the OPTN today.

What does UNOS do?

The primary goals of UNOS are to:
  • Increase and ensure the effectiveness, efficiency and fairness of organ sharing in the national system of organ allocation 
  • Increase the supply of donated organs available for transplantation
In addition to developing national allocation policies, UNOS manages the Unet, a complex computer system that matches donated organs to transplant candidates by connecting all transplant centers and all of the organ procurement organizations in the country.

To effectively and efficiently allocate donated organs, UNOS divided the country into regions. Here’s the map of UNOS regions:

UNOS regions are served by one or more organ procurement organization and states can also be served by more than one organ procurement organization. For example, Penn Transplant is in state of Pennsylvania, which is in UNOS region two and there are two organ procurement organizations serving the state of Pennsylvania – Gift of Life Donor Program (serving eastern Pennsylvania) and the Center for Organ Recovery and Education (serving western Pennsylvania).

The local area served by an organ procurement organization is called its “service area”. Gift of Life’s service area is eastern Pennsylvania, southern New Jersey and the state of Delaware. In New Jersey, northern New Jersey is served by an organ procurement organization called the NJ Sharing Network.

What exactly does an OPO do?

An organ procurement organization (OPO) serves as the bridge between acute care hospitals – where families are offered the opportunity to donate – and transplant centers where people are waiting for organs.

The OPO serving our region, Gift of Life, has a two-fold mission: to serve families who are making end-of-life decisions and to advocate for those who are waiting for a life-saving organ to become available. Gift of Life accomplishes this mission in several ways, and the process begins with education. To help increase the awareness of the critical need for organ and tissue donation and dispel the myths and misinformation that keeps people from saying “yes” to donation, it provides ongoing public and professional education.

In addition to offering critical education, Gift of Life coordinates the organ donation and transplantation process by providing evaluations at acute care hospitals that determine whether or not donation is an option. When donation is an option – which occurs less than two percent of the time – it partners with hospital staff to discuss the donation opportunity to the family.

If the family says “yes” to donation, Gift of Life adds the donor’s information into Unet and then contacts the transplant centers whose patients are on the list generated for that specific organ donor. Once a recipient has been identified, it manages the entire organ recovery process including the transportation for all of the transplant teams – which can be up to seven different teams, and the surgical recovery of specific tissues and organs the family has donated. If you’re interested in learning more about the organ donation process, this video gives some additional information.

The work of Gift of Life Donor Program continues after donation takes place. Through the organization’s family support services, donor family and recipient letters are coordinated and donor families are offered free counseling to support them through the first year after donation. In addition, ongoing support is provided through special events, such as the Annual Donor Family Recognition ceremony. 

Celebrate Gift of Life

The Penn Lung Transplant Team would like to congratulate Gift of Life on 40 years of compassionate care for donor families and excellent clinical donor management. Thank you, Gift of Life, and happy 40th birthday!

Friday, October 24, 2014

Chas's Story: From Heart and Lung Failure to 80-Mile Bike Rides

Chas Devlin is a double transplant -- heart and lung -- recipient. On Saturday, September 27, 2014, Chas finished the Bike MS: City to Shore Ride. This was the fifth straight year that he and his wife participated in the 80-mile bike ride. Prior to that, he was on oxygen 24/7 for three years. He couldn't walk 100 yards without stopping to catch a breath. Here is Chas's story and his advice for those awaiting transplant. 

I'm 56 years old and have been married to my wife, Maryann, for the past 33 years. We have three children: Tom, who teaches high school and coaches; Megan, who is an operating room nurse; and Rob, who is a PhD candidate in engineering at Harvard University. Thanks to my donor, I've been allowed to experience many milestones in my children's lives -- high school and college graduations, marriage, the birth of two grandchildren -- as well as attend many extended family events.

My journey to transplant began in 1974, at age 16. During a routine physical for my driver’s license, it was noted I had an irregular heartbeat. I followed up with a cardiologist at the Hospital of the University of Pennsylvania (HUP), and a heart catheterization confirmed that I had cardiomyopathy, atrial fibrillation and blood clots. It was idiopathic, and I was asymptomatic.

For many years I was followed by my local cardiologist and lived a fairly normal existence. However, when I was in my 30's some minor heart failure issues began to appear. Each time it happened it was a little more severe, and I was treated with an increase in medications and/or additional new medications.

In 1997, I was referred to HUP for a possible heart transplant. Testing showed that my heart was sick, but not sick enough, as yet, to make the list. Nevertheless, I was pretty much assured I would need a heart transplant in the near future.

In the fall of 1999, I was again evaluated at HUP for a heart transplant. This time, doctors determined that my weak heart was taking a toll on my lungs. I was now suffering from pulmonary hypertension (PH), and I would need to be evaluated for a lung transplant as well. I was placed on oxygen 24/7 and began the lung transplant evaluation process. The following year, I was cleared for transplant by both the heart and lung transplant teams and placed on the transplant waiting list.

My wait was a little over three years, with one dry run and one stand by. In April of 2003, I finally received "my gift" and my second chance.

My health, and my life, have been fantastic post transplant. I returned to the working world one year post transplant and have been working ever since. I'm currently a full-time retail store manager.

My advice for those who are waiting for an organ to become available: Don't get discouraged; keep your spirits up. Better times are ahead. Keep yourself as active as your doctors will allow. The better condition you're in pre-transplant, the easier the transplant recovery process will be.

Chas at the 2014 Bike MS: City to Shore Ride

Thursday, October 16, 2014

A Quick Guide to Understanding PFTs Results

Pulmonary function tests (PFTs) provide information about how well the lungs are working and give the healthcare team many different measurements that help to determine what treatments will be most effective. By testing the lung function in different ways, different types of information can be gathered. Your healthcare team will explain your PFT results in detail, and, of course, they are available to answer any questions you may have.

For times when you’re looking over your PFT results on your own and need a little reminder to help decipher the alphabet soup created by the abbreviations, we’ve put together a quick list of the common measurements taken during pulmonary function tests. Take a look and keep this handy as a reference.
  • Tidal volume (VT): the amount of air inhaled or exhaled during normal breathing
  • Minute volume (MV): the total amount of air exhaled per minute
  • Vital capacity (VC): the total amount of air that can be exhaled after inhaling as much as you can
  • Functional residual capacity (FRC): the amount of air remaining in lungs after breathing out normally
  • Forced vital capacity (FVC): the amount of air exhaled forcefully and quickly after breathing in as much as you can
  • Forced expiratory volume (FEV1): the volume of air exhaled during the first second of the forced vital capacity (FVC) test
  • Forced expiratory flow (FEF): the average rate of flow during the middle half of the forced vital capacity (FVC) test
  • Peak expiratory flow rate (PEFR): the maximum volume during forced exhalation

Friday, October 10, 2014

October Support Group Update

Katie Stratton, RD, LDN
Date: Monday, October 13, 2014
Time: 1 to 3 pm
Location: 21st Floor, Ballam Conference Room
Penn Tower, 399 S. 34th Street, Philadelphia, PA 19104
Topic: The Role of Nutrition Before and After Lung Transplant

The next lung transplant support group is on Monday, October 13 from 1 to 3 p.m. Unlike usual, it will take place in Penn Tower, on the 21st floor in the Ballam Conference Room -- not the 4th Floor Gates Conference.

Moreover, oxygen will no longer be provided at the lung transplant support groups. Please plan to make appropriate arrangements for your oxygen requirements.

The topic for this support group is "the role of nutrition before and after lung transplant." While good nutrition is an important issue for everyone, for lung transplant patients, it’s a critical step in all phases of transplant: preparing for transplant, recovering from the transplant surgery, and living a full and healthy life after lung transplant.

To help patients and caregivers understand more about how food choices impact lung transplant, we’ve invited lung transplant clinical dietitian, Katie Stratton, RD, LDN, to be our guest speaker.

We look forward to seeing you on October 13! If you’d like additional information about the session, please contact lung transplant social worker, Christopher Erickson, MSW, LCSW, at 215-662-4575 or