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Lung Transplant Update | Penn Medicine

Friday, August 22, 2014

Two Steps to Staying Safe in the Sun

Summer is coming to a close, but the Penn Lung Transplant Program and Penn Dermatology remind you to continue to think of the skin you are in – regardless of the season. Because early intervention for any skin abnormality is the best way to minimize problems, it’s important for everyone to stay vigilant about skin health. For lung transplant recipients, not only is it important, it’s critical to take skin health seriously and to partner with your healthcare providers to protect yourself. You should take every step you can to minimize your risk.

The reason that careful attention to skin is so serious for transplant patients is because some of the medications prescribed to protect transplanted lung(s) increase your risk for developing skin cancer. This is particularly true for anyone who has ever had sunburn. While people with fair skin and light colored eyes are at a higher risk, even those with darker skin tones are vulnerable to skin cancer, so it’s important to take an active role in this part of your healthcare by practicing early detection and skin cancer prevention.

The good news is that it’s easy to do self exams and protect yourself from the sun all year long. If self exams for skin cancer are new to you, the American Academy of Dermatology (ADA) offers an informative three-minute video explaining the steps of an effective self exam and what specifically to look for. Another helpful tool from the ADA is a free download called the Body Mole Map – a way to record moles and track any changes you observe.

Protecting yourself from the sun throughout the year is also easy to add into your daily routine. By simply wearing protective clothing, such as a wide-brimmed hat and long sleeves, and applying sunscreen with an SPF of 15 or above, you can protect your skin from sun-related skin damage.

In addition to these sun smarts, the Penn Lung Transplant team strongly encourages its patients to see a dermatologist within the first six months following their transplant and once a year after the initial appointment. A dermatologist is specially trained to evaluate and treat disorders of the skin, including infections, rashes and skin cancer. Penn dermatologists offer special expertise in treating post-transplant patients and managing their increased risks.

If you would like to see a Penn dermatologist who specializes in caring for transplant patients, 
please call 215-662-2737 for an appointment.

Friday, August 15, 2014

The Buzz on Raw Honey and Unpasteurized Foods

By Tiffany Donahue, Guest Blogger

Tiffany Donahue, RD, LDN is a clinical dietitian at Penn Medicine. Here she gives some tips on nutrition and types of foods to avoid after transplant.
In the first few months following transplant surgery, it is crucial to follow the recommendations provided from the medical team to ensure proper healing and promotes adequate function of the newly transplanted organ. One essential aspect of the post-transplant care plan is the nutrition guideline provided by the transplant dietitian. A solid nutrition plan is fundamental to your health and is one way you can work to optimize how well the transplanted organ functions.

In general, nutrition recommendations guidelines after transplant include a well-balanced, portion and carbohydrate controlled diet. Your transplant dietitian may further personalize your diet depending on individualized needs when considering pre-existing conditions or risks due to family history.

One important area of focus in the post-transplant nutrition guidelines is to help raise awareness of potential food safety concerns while the immune system is compromised from immunosuppressants – medications that reduce the risk of organ rejection. Although these medications are an essential component of treatment, they may increase a patient’s susceptibility to infection, so it’s important to minimize risks associated with diet.

As more Americans strive for healthier diets, there has been a shift to increase the consumption of fresh and local foods and beverages. While this is a wise choice, transplant patients must choose carefully – especially in the area of unpasteurized food items.

There are several types of pasteurization and all incorporate the method of heating to eliminate potential pathogens and then cooling. The difference lies in how long a product is heated and to what temperature, and how quickly it is taken from the peak temperature to a cooled product.

One popular sweetener that’s gaining the attention of consumers seeking more local products is raw honey. Whether added to a cup of hot tea or a nut butter sandwich, a spoonful of raw honey may potentially expose a recently transplanted person to harmful contaminants or bacteria. Raw honey has not undergone pasteurization, so as part of the nutrition guidelines following transplant surgery, dietitians advise against it. This is also true for unpasteurized milk and any foods made from unpasteurized milk, like yogurt and cheese.

Another trending group of products are juices and smoothies that advertise a “gentle pasteurization.” The gentle pasteurization process is similar to pasteurization in that products are heated and cooled quickly, but the temperature during the heating phase and the total length of the process differ.

One reported benefit of this method is that the fruits and vegetables are able to retain more of their healthy properties; however, it’s not clear whether enough of the potentially harmful bacteria are eliminated in this method. After reaching out to a leading manufacturer of “gently pasteurized” manufactured beverages, a definitive answer has not been offered as to whether these products are without risk for immune-compromised patients. For this reason, it’s also advisable for post-transplant patients to avoid gently pasteurized beverages.

So when putting together a grocery list or making on-the-go food selections in convenience stores, think about the nutrition recommendation guidelines and remember that unpasteurized foods could lead to unhealthy side effects.

I often remember the words of a post-transplant patient who I met with a few days after their transplant surgery. After learning about some changes required to their diet to care for their transplanted organ well, the patient said, “I have been given this gift, and I will do whatever I have to, to say thanks every day.”

Following nutrition recommendations and partnering closely with your healthcare team are two ways to “say thank you every day” and steward the gift of a donated organ well. Please contact your transplant dietitian if you have questions about foods that are safe after transplant.

Find out more about organ transplant programs and services at Penn Medicine.

Thursday, August 7, 2014

John’s Story: The Life in Your Years

My name is John Lucchesi. I'm a 50-year old guy with cystic fibrosis (CF), and I received my second double lung transplant at Penn Medicine.

My life has been changed by transplant medicine in that I can continue my journey of self-discovery, continue to be with the people I love and continue to inspire those I come into contact with. For me, life was never about waiting until "one day" or ever having to say "should've, could've, would’ve." I sang in a rock band and snowboarded while working through my illness. I adopted a relationship with my illness that gave me power and weakened the grip my illness wielded over me. My desire to live overcame my illness’s power to take my life. The lessons I learned and the knowledge I've gained on my journey have led me to a certain strength, which got me through two double lung transplants.

I think we are constantly bombarded by our health care teams with talk about the importance of diet, cleanliness, precaution this and precaution that. We are told a lot about what not to do, but what helped me most was focusing on “what I should do.”

What I found is most inspiring is focusing on the reason people get transplants. The real reason! For me, it is not to live life in a bubble, or to be fearful of contracting some strange bug if we touch the railing at the train station, or to be afraid to hug our best friend or to take a 14-hour flight across the globe. Don’t we get transplants to continue our personal journeys, to be with loved ones and to forge our lives and lead by example? It’s probably a little different for everyone, but those are my rules of how I want to live my life after transplant.

I want to inspire and raise awareness of this gift, and I can't do that in a bubble; I can't limit that to my town, my own state or my own country. How can I inspire people who need that extra push to overcome whatever demons they are trying to slay sitting by staying safe at home and being hermetically sealed? What works for me is being in the world meeting people, sharing my story, showing my scars, laughing, loving and making meaningful connections, and being inspired by their story. Even Michael Jordan needed inspiration!

My first transplant surgeon was an amazing man, and one day while roaming the hospital corridors looking for the new PFT lab at the University of North Carolina, we bumped into one another. I had had a complication during my first transplant that left me temporarily blind. No one knew for how long, but I was blind for a reason. When I bumped into the surgeon, he asked how I was, he said I looked great, and we chatted for awhile about life.

I told him of all the things I was able to do since the transplant. He smiled. He then apologized for the mishap that led to my temporary blindness. This kind and caring apology, brought to mind something he had said during the long evaluation process. What he said rang clear and true: "Well, you know that we can't offer you quantity, only quality."

That stuck with me during the ensuing years. It's not about the length of time you are afforded by transplant but the quality you are given during that time, which we all know varies from patient to patient.

So now when I meet people who want to compare, or who want to quantify their time and how long they have lived with this dreaded disease, I tell them, "I would rather live to 20 having climbed Mount Kilimanjaro, than live to 50 and have done nothing."

It’s not about the years in your life but the life in your years. It’s a lesson humanity needs to learn, but more importantly we, as transplant patients, need to learn it at the outset so we can fully enjoy the lives we have been given. And there lies another gem of wisdom: Don’t let fears prevent you from living your life as you see fit. There's an amazing world out there waiting for you.

Wednesday, July 30, 2014

Thinking About a Move?

By Bethany Sprague, Guest Blogger 

Bethany Sprague was a healthy mom of two working as a physical therapist in St. Louis when she started experiencing a dry cough that wouldn’t go away for months. She was diagnosed with idiopathic pulmonary fibrosis in 2010 and soon began her lung transplant journey. Here, she shares tips for moving, before and after having a transplant.

As a pre- or post-lung person, a major move can cause some anxiety even if the move is for a better life. I think it is especially difficult leaving the lung team that has been following you. They know you from head to toe and have been your life line.

I do not proclaim myself to be an expert on this topic. However, I did do a major move from St. Louis to Philadelphia after my first year post-transplant and am in the process of completing another major move to San Jose, California.

After having these experiences, I can suggest some things I thought of before the move and actually some things I didn’t think about that I should have.

Why are you moving? A move could be for medical care or services, a warmer climate, being closer to family, or leaving a bad situation among others.

Before moving, check out the location of the nearest lung transplant center . This is important. Who is going to follow up on your care? You want a facility that knows what special care a pre- or post-transplant person needs. Getting into too rural of an area can be problematic. You might have to commute too far if you have complications. I had a friend who opted to live in a very rural area and had to drive an hour and a half for her specialty labs.

Also, do your research about the Transplant Center you will be close to. What is its reputation? How much experience has it had with transplant? Much of this information can be found on Check in with your present lung team and discuss your plans with them. Most lung transplant centers have close relationships with other centers and do collaborative research. Ask for recommendations.

Look seriously into the area you are moving to. What is the climate? What services are available in the state for disabled or people on Medicare? Where will you exercise? Are there gyms or parks close to your destination? What things do you enjoy doing and can you do these without too much of a hassle?

Have a budget. This is important as most of us are on a limited budget. Look at your annual cost for medications not covered by insurance and your co-pays. Include what you can afford for rent, utilities, insurance, food, and perks. Some areas may provide you with money to spare. Other areas may cause you to reduce your level of living. Are you willing to do that to move where you want to?

Estimate costs for the actual move. Every move costs money. Do you have family and friends who can assist you to reduce the costs?

Moving to be closer to family is wonderful. It is important to have a support system, especially if you are single. Keep in mind that your children may be close for a while, but the new 20 to 40 age group is very mobile. With today’s economy, our children are forced to go where the jobs are. So, when making your location decision, factor in the reality that family may move. Will you still be happy in your location? Decide on a move and location that will be better for you even if this happens.

Leaving a bad situation is rough. But your happiness and feeling of well being is important to your health. We don’t decide to get a new lung and then live in unhappiness. If you have a home situation that you think is affecting your emotional or physical health, let your team know. They can help you sort out what to do and will give you the support you need to be strong in making some major decisions.

When your decision is made as to where you are going, let your lung transplant team know. When I moved from St. Louis to Philadelphia, I was so scared about continuity of care. Would I have my medications on time? Would I be placed into the new system smoothly?

My transition was smooth. My team coordinated with the Penn team weeks before my move. I had my first appointment within the first two weeks after my move. My medication prescriptions stayed intact and I immediately felt cared for.

New things can provoke anxiety. But, new things can be the joy you need to stay healthy and happy. Before you know it you will feel comfortable in your new home. You will easily get to your appointments, know the roads, know what is around you and adapt.

I encourage anyone thinking a move to go about it systematically and make it work for you. After all, life is to enjoy!

Originally published in the St. Louis Second Wind Transplant Association Newsletter.

Find out more about organ transplant programs and services at Penn.