Meet PHA’s Transplant Email Group Committee

Many PH patients will consider or have questions about transplant during their PH journey. PHA’s Transplant email group is a place where patients, family members and transplant recipients can ask their transplantrelated questions and connect with people who have received transplants. The email group is organized by the Transplant Committee, consisting of three transplant recipients and one transplant social worker. Read on to meet each committee member and learn about their unique connections to transplant and PH.

Angie EldamAngie Eldam

“I was diagnosed with primary PH in 1990 and had three small children depending on me. I was on Flolan® therapy, and as my health progressively worsened, I was listed for transplant. On Oct. 6, 1995, I received a double lung transplant at St. Luke's Hospital in Houston, Texas. I currently volunteer with our local organ procurement organization, LifeGift, to promote organ donation awareness. My children are now in their 20s, and I have had many experiences and hit a few speed bumps in my transplant journey, and I would like to use my experience to benefit others. I think this group is important to open the door for PH patients to ask questions regarding transplant and also for transplant recipients to support each other like our PHamily has always done.”

Sheri LuskSheri Lusk

“My name is Sheri Lusk, and I am a licensed master social worker. I have been a medical social worker for more than 10 years and began working with people who have PAH in June 2011. I have already worked with a number of people who have gone through the transplant process. It can be a scary and overwhelming time. I feel like groups like this email group are extremely valuable to help people navigate the process before and after transplant together. And the fact that it is specific to PH makes people’s journeys even more similar, although everyone’s journey is unique. I enjoy being a part of the committee that is working to grow and improve this group and to be able to tell the people I work with about it.”

BreAnn McFarlandBreAnn McFarland

“I was diagnosed with PPH in 1994, and I was told I probably would not live long enough to celebrate my next birthday. At that time, I didn’t know where to find support or information. I couldn’t even find anyone who knew what PH was, so I was ecstatic to later learn about PHA. With the help of my pulmonary doctor and PHA, I found the hope I needed to fight for my life. I started Flolan® in 1995, but unfortunately, it did not lower my pressures. I had been on Flolan® for two years when I finally admitted to myself that I was not getting any better, and on my eighteenth birthday I was put on the waiting list for a double lung transplant.

Five years later, on Dec. 8, 2002, I received the gift of life. I remember the fear I felt and the questions I had when I was listed. As a member of the Transplant Committee, I now have the chance to help others with those same fears and questions. One of the most important philosophies that I have lived by is to take one day at a time, both with PPH and transplant. Otherwise, you will become so overwhelmed that you’ll drown in worry and fear. I am a survivor.”

Shirley CraigShirley Craig

“Twenty-one years ago, I was diagnosed with pulmonary hypertension secondary to congenital heart defects. The doctors told me I needed a heart/lung transplant. Eighteen years later, I was transplanted at The Methodist Transplant Center in Houston, Texas. Now, I am on a different journey. Now, I have the strength and energy to go places and do things I couldn’t even consider before. The best thing ... no more PH!”

The Martins, Christmas 2011Heather Martin

“I was diagnosed with PH in June 2003 at the age of 27, two weeks after I graduated from college with my master’s degree and two weeks before my wedding. It was an extremely difficult time for our family to say the least.

We began treatment right away with Dr. Murali Chakinala at Barnes Jewish in St. Louis. We worked our way through Tracleer®, sildenafil, Remodulin® (sub-q and central line) and finally Flolan®. Fortunately, I was able to continue working through this time (I am a social worker for the state of Oklahoma).

My health continued to decline and I was listed for transplant in January 2007. I went on Long Term Disability with my job and my husband and I relocated to St. Louis on New Year’s Day 2007. We received our call on February 17, 2007.

My recovery was slow and filled with many bumps in the road, but ultimately was a huge success. I was discharged from the hospital in May 2007 and was able to return home to Oklahoma in June. I have chronic rejection, but my symptoms seem to be stable and my PFT’s are stable as well. I returned to my job in August of 2007 and things have gone very well for us.

My husband and I decided to start a family and we welcomed our son on January 22, 2010. He is the joy that we always hoped for, but never dared expect with my health. My transplant saved my life and gave us the opportunity to have a family. We are so grateful to our family for their support and our extended family at Barnes-Jewish Hospital in St. Louis for the miracle that they gave to us.”

Editor’s Note: Shirley Craig served as Pathlight editor from 2000 – 2006.

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.