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    MUSC Lung Transplant Program a lifeline for state residents

Dawn Brazell | MUSC News Center | Sept. 12, 2014


MUSC lung transplant program
 
 Sarah Pack
Dr. Danny Eads, left, and Dr. Chadrick Denlinger prepare the donated lungs for transplant while Dr. Jeffrey Griffin and Dr. John Kratz remove David Flurett's diseased lungs. Photo Gallery
 
 

Work for Jason Ferro often involves high drama, but it is the kind he likes.

Ferro, RN, and lung transplant coordinator for the Medical University of South Carolina, said the nature of his job involves life-and-death moments.

“We see patients in clinic prior to transplant, and they’re very ill.  They’re nearly on death’s doorstep, and some of these patients only have months to live.  To see them leave the hospital a few weeks after surgery without supplemental oxygen, and getting out in the community, and beginning to do the things they couldn’t do before that they loved to do, is very rewarding,” he said.

Jason Ferro MUSC lung transplant
Dawn Brazell
 
Jason Ferro checks in with patient Mark D. Parris, who has idiopathic pulmonary fibrosis, and is one of three patients awaiting a lung transplant. 

MUSC is the state’s only lung transplant center and that brings distinct advantages.  Prior to the existence of MUSC’s program, patients with severe end-stage pulmonary disease had to travel out-of-state for these services.  Now, they’re able to stay in state without having to travel an extended distance from their family and local support system.

“I really feel like I’m making a difference in patients’ lives.  Not only in the lives of our patients but also our patients’ family and friends - their entire support network. A transplant can provide amazing outcomes for the right patient and the transplant team gets to see that,” Ferro said.

Another advantage to being the only transplant center in the state is that MUSC gets first rights of refusal on organ offers from South Carolina residents.  “So for in-state organ offers our patients aren’t competing with patients on other transplant lists at other transplant centers for organs, and that translates into a relatively short wait time for our listed patients.”

Timothy Whelan, M.D., director of Lung Transplantation, came to MUSC about four years ago from Minneapolis to restart MUSC’s program. He was attracted to MUSC’s expertise in its pulmonary division and its national leaders in advanced lung disease.

“This was a great opportunity to combine the things that I was doing in Minneapolis to continue my idiopathic pulmonary fibrosis clinical research and also take advantage of the excellent procurement agency here,” Whelan said, adding that the number of lungs that are available for transplant in South Carolina is actually quite large for a small state.

That’s good news for state residents in dire need of a lung transplant. The other good news is the program just received certification this year from Medicare and Medicaid services.  That’s a big step in order to make lung transplantation more of an affordable option for patients.

“I think that this is an exciting time for MUSC and the transplant program.”

MUSC provides some of the cutting edge research and clinical trials into finding better treatments for idiopathic pulmonary fibrosis, chronic obstructive pulmonary disease and cystic fibrosis.  The transplant program as a therapeutic option really just rounds out how MUSC has become an advanced lung disease center, he said.

 
Sarah Pack
 MUSC hosted an Idiopathic Pulmonary Fibrosis Education Day July 18 to educate patients about the latest in treatments, including upcoming clinical trials.

Whelan, who has set a goal to meet every pulmonologist in the state, hopes to get the word out that patients may have more options than they realize. He also wants to address disparities outcome research, which is a valued mission at MUSC.

“We are located in a state with a large African-American population, and we do have an opportunity to be leaders in the country in providing transplants to African-Americans.”

The number of black patients who undergo lung transplants in the United States is still less than 5 percent, despite that demographic making up 13 percent of the population. MUSC’s rate is higher than 5 percent, which opens up research opportunities, he said.

“This is a great opportunity to add some diversity to that database and to share that information so we can figure out how to ensure we’re providing care to everyone. The thing that really holds us back in getting those populations to this level of care is that they just never get access to it.”

Another distinguishing feature of MUSC’s program is the community feel it has, Whelan said.

Ferro agrees.  “We work well together. We all know each other well.  All our families know one another, and we’ll even get together outside of work.  I think that strong bond has been very beneficial to the team.”

Whelan and pulmonology colleague Luca Paoletti, M.D., spend a lot of time with the patients and are very detail oriented, Ferro said.

“That’s very important.  As complicated as their management is, every detail needs to be addressed.  The team as a whole, the entire transplant team, we all have a mutual respect for one another – for our abilities, our professional background, our individual opinions,” Ferro said. “I think that creates a stronger bond as a whole for the team.  I think it results in a better experience for our patients.  I think they can sense that we’re close as a team, and the result of that is better outcomes.”

The success in managing lung transplant patients is dependent in large part on the involvement of a very large interdisciplinary team that includes pharmacists, therapists, doctors and nurses from a variety of different specialties.  “Without that strong interdisciplinary team, the patients’ outcomes would not be what they are.” 

Ferro said the pulmonologists often will stay during the time of the surgery to provide insight during the procedure if needed, and then they are there as soon as the patient comes out of the operating room to begin to take over the medical management of the patient.

“To see our physicians here at two o’clock in the morning, and then I come back at 5:30 or 6 and see them still here, I think that speaks volumes about their dedication to our patients.”


Sarah Pack
 
Penny Mitchum, RN, clockwise from left, assists Dr. Chadrick Denlinger as he and Dr. Jeffrey Griffin transplant the donated lungs into patient David Flurett (see his story). 

Whelan recalls when he and transplant surgeon Chadrick E. Denlinger, M.D., set up the program, they both were adamant that the attending physicians would take care of the patients and be the ones actively making decisions.

“I think that’s extremely important, particularly for a program that’s starting, so that leaders can be identified easily by all of the medical team, no matter who they are.  I think it’s very important for instilling confidence in patients as well as the medical team.  One component of that is if there’s a sick person, and it’s very late at night, Dr. Paoletti or Dr. Denlinger or I will not leave the hospital.  We’ll stay here and sleep here overnight.”

Whelan said the median survival after lung transplant in the United States right now is about 5.5 years. 

“That number is not where we’d like it to be,” he said of research efforts nationally. “We’re working on making that number better. It is the only organ that is exposed to the environment.  You do a kidney transplant and it’s not exposed to the air.  All the things that we breathe in and out every day have potential impacts on the lungs.  So that’s the biggest challenge to it.”

MUSC is part of a consortium of multiple transplant centers called the Lung Transplant Outcomes Group that plans to pool data to push forward clinical trials that can improve outcomes. Whelan hopes MUSC will become a regional transplant center and lead the way in lung disease research that could open up other treatment options.

“I think one of the coolest things about transplant is you can take people who can’t breathe and make them breathe again.  That is the whole reason that we do this.  I think the lung diseases that these individuals have are very frustrating  because in essence there are no good therapies for them.”

One of those diseases in particular is idiopathic pulmonary fibrosis (IPF), which is a progressive, unrelenting scarring of the lungs that typically has a median survival rate of about three to five years.  “MUSC is one of the leaders in clinical research for idiopathic pulmonary fibrosis.  We are consistently one of the largest enrollers into novel therapeutic trials.  For the first time, we’ve identified just this past year two drugs that clearly have an impact on the disease.  Unfortunately neither of those drugs is a cure, so we’re still going to have to have other options.”

IPF was the diagnosis of recent transplant recipient David Flurett (see his story here), who is a good example of someone who was very appropriate for a transplant and who sought help early.

 David Flurett
Sarah Pack
 David Flurett and wife Deborah enjoy a moment together May 17 before he undergoes a double lung transplant.

Whelan said individuals who have continued declines in their breathing tests, such as Flurett, are at high risk to die.  “The amazing thing about David is he was exercising and working really hard, but he’d literally have an oxygen truck with him to get enough oxygen while he was exercising.  Within a day of the transplant, he was off the ventilator, off of oxygen, and he doesn’t need to use it at all while he was sitting at rest and interacting with people in the ICU.  Within two weeks, he was out of the hospital walking on a treadmill, and he didn’t use oxygen at all.  That’s pretty cool.”

It’s that “cool” factor that keeps the team bond so strong. Denlinger said transplants tend to happen on nights and weekends, so it’s not conducive to a great social life as a transplant surgeon. It’s an occupational hazard but well worth the sacrifice, he said. He and colleagues love the patient stories and like to keep tabs on them post-transplant.

He recounts how fun it was to go to one of the concerts of  lung transplant patient and singer Jimi Beauston and how he likes to hear of the race stories of patient Lorcan Lucey. Both of them were in intensive care on end-stage pulmonary support before their transplants.

“The survival for that is very dismal outside of transplant. We were able to do their transplants, and they are able to enjoy life to the fullest. What’s miraculous to me now is seeing the changed lives – just seeing both of those guys being normal guys – enjoying their family and lives.”

 

 

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