Things to Know about Lung Transplants
A lung transplant is a surgery to replace diseased lungs with healthy lungs. It's a treatment option that can improve quality of life—e.g., your ability to breathe and be active—for people who have severe or advanced chronic lung conditions, such as chronic obstructive pulmonary disease (COPD), cystic fibrosis and pulmonary fibrosis. Before receiving a lung transplant, potential recipients need to go through a process that includes evaluation and scoring. Once approved, they are placed on a waiting list, followed, hopefully, by transplant surgery and life after surgery (see the five steps to lung transplant). It’s a major operation that has major risks, and there are some considerations before and after that might not be top of mind. Below are things to consider when you’re thinking about a lung transplant.
You will need help.
Now is the time to enlist the help of your family and friends.
"Anyone contemplating lung transplantation needs good support from a network of family and friends," says. Dr. Malcom DeCamp, chair of the Division of Cardiothoracic Surgery and professor of surgery at University of Wisconsin School of Medicine and Public Health.
Dr. DeCamp explains that there will be frequent visits to your transplant center during the evaluation phase and while on the waiting list to ensure you are first eligible for the transplant and then to ensure that you remain eligible. After the transplant, routine visits begin weekly to monitor you and your new lungs and are spaced out over time. Your family and friends can help you get to all your appointments and help you stay focused throughout the process on your shared goal of improving your lung health.
"Keeping a positive attitude may be challenging at times so having a team of devoted family and friends is critical to success," says Dr. DeCamp.
For Randy Cooke, an idiopathic pulmonary fibrosis patient and double lung transplant recipient, having a great support team is a must. "Spouse, family, friends... This is a battle you cannot do on your own. The more, the better. It's overwhelming to just one person. I know it took a toll on my wife and kids. I believe it was easier on me then it was on them!"
You must be in the best shape you can be going into your transplant.
"It may seem crazy to say this as you are sick and fighting for your life, but exercise as much as you can, stay as fit as you can," says Cooke, who underwent his transplant in 2011. "I went to rehab and walked on a treadmill up until the day I got the call. The stronger you are, the faster you will recover."
While every patient's recovery time is unique, being physically healthy enough to undergo a transplant is a key factor.
Your emotional health is important.
Often patients preparing for transplant have either been living with a chronic condition for quite some time or have been diagnosed with a serious illness. It’s not uncommon to experience symptoms of depression or anxiety.
"If you believe you are experiencing depression or anxiety, or have a history of either, it is important to begin treating it now to set a foundation for positive coping throughout the transplant journey," says Caryn Blanton, MSW, LCSW, a licensed clinical social worker at Rush University Medical Center. Blanton recommends connecting with your support network (e.g., a peer who has gone through transplant, support groups, psychotherapists, faith community) and talking with your doctor about exploring medications if that feels right.
"Be patient with yourself, and the process. Transplant requires close follow-up and it can take time to return to your normal day-to-day activities," she says. "Adjust the way you do things so that they continue to be safe while you recover. Tap into what brings you joy. Listening to certain music, watching your favorite movie, folding laundry. Set up your environment pre-surgery to make it easy for you to access the things you enjoy doing."
You can visit our Support and Community section to find in-person support groups, join online communities and talk with Lung HelpLine counselors.
You might have to travel (and stick around) to get a lung transplant.
Centers that perform lung transplants are located throughout the country, but it's possible you’ll have to travel to get to your transplant center. In addition to financial and insurance needs, you'll want to think about things like how you’re getting there and where you'll stay. When you're on a waiting list, you need to make sure you are close to the transplant center and always available. You never know when you might get a call and your transplant surgeons have only about 4-6 hours to complete the transplant operation after the donor lungs are procured.
After your transplant, you'll need to stay nearby for a while. "The first few weeks and months are critical after the lung transplant operation and balancing the multiple medications needed to prevent or treat episodes of infection and/or rejection is complicated. Initially, after the operation, most centers will want you to be less than an hour away as visits are frequent," says Dr. DeCamp. "Most centers will want to direct your care for the first year after transplantation. During this time, they will help you identify a provider network closer to your home to collaborate on the longer-term care needed to maintain good function of your new lungs."
You can find a list of transplant centers through the Organ and Procurement Transplantation Network (OPTN).
New techniques are being used to help address the shortage of donor lungs.
Not all donor lungs are suitable for transplantation, and right now, only about 28 percent of donor lungs meet the criteria needed to be used for a transplant.
The good news is that researchers are investigating ways to increase the pool of donor lungs. There's a novel technique called ex vivo lung perfusion (EVLP) that can improve “marginal” donor lungs (lungs that don't quite meet transplant criteria) so they can meet the standards for transplantation. Ohio State University’s Wexner Medical Center, Columbia University, and Penn Medicine are some of the programs applying this innovative therapy to increase transplants. And (thanks to donations) the American Lung Association is funding the important work of Research Team member David Hall, M.D. who is studying a medication that could help reduce constricted blood vessels in donor lungs, making more donor lungs acceptable for use in lung transplants.
Meanwhile, registering to be an organ donor and encouraging family and friends to do the same is an important step to bridge the gap and save lives. Anyone can sign up to be an organ donor.
There's an organization that oversees organ matching.
United Network for Organ Sharing (UNOS) is a non-profit scientific organization that administers the only U.S. Organ Procurement and Transplantation Network (OPTN). UNOS oversees all transplant programs in the country. A national computer system and strict standards are in place to ensure ethical and fair distribution of organs. That means things like celebrity status or income are not factors in getting matched for a transplant.
All organs are matched on certain medical factors like blood group compatibility, geography, and organ size and each organ type has some additional specifications. For lungs, it includes the predicted survival benefit, medical urgency, distances from donor hospital and pediatric status.
Common Questions about Lung Transplants
Mark Courtney, a respiratory therapist with the American Lung Association Lung HelpLine, shares answers to some common questions about lung transplants.
"Where can I find help financially, or with housing and care during and after the transplant?"
The transplant team at the facility is usually the best resource for getting all types of assistance, as they know of local, state and federal programs that can help. Usually, the social service person has the most resources. Transplant Living and 2nd Wind Lung Transplant Association also have information on financial assistance.
"What is the upper age limit to qualify for a lung transplant?"
The International Guidelines for the Selection of Lung Transplant Candidates has a “relative” guideline age limit of 65, but there is no set upper age limit, and people over 65 often have qualified for and received a transplant. People over age 75 are unlikely to be candidates, but the final decision is made by the specific transplant center.
"Can I donate a lung to a family member who needs a transplant?"
Technically, you can't donate an entire lung. Some transplant centers do "living donor" lung transplants, where the lower lobes of a lung (your right lung has three lobes, and the left lung has two) from two donors are transplanted. This was originally used for pediatric patients who may not survive the long wait for a transplant, using lobes from both parents. This type of procedure is not something every center does and not something that is an option for everyone, so it is best to check first. It also requires two donors who are both a tissue match to the recipient.
"Do they always transplant both lungs?"
No, a single lung transplant is an option for some people who may have one lung that has more disease than the other. A double lung transplant is more common, but a single lung transplant may be an option.
"Can you have a lung transplant more than once?"
Yes, this is possible, but not that common. Retransplantation accounts for about 4 percent of lung transplant procedures.
Related Topic: Health & Wellness