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Monday, April 21, 2014

2014 Organ Donor DASH A Success!


Congratulations and Thank You to the DASH for Organ Donor Awareness Team Penn Medicine!

Thanks to the support of Penn patients, caregivers and staff, it was a record-breaking year for Team Penn Medicine at the 2014 DASH for Organ Donor Awareness. In addition to winning both Gift of Life contests and earning two tents and two port-o-potties, here are some highlights of the Team Penn Medicine’s accomplishments at the 2014 DASH:
  • #1 healthcare organization for online registration
  • Largest DASH for Organ Donor Awareness Team
  • Raised nearly $10,000.00*

“This year’s team was truly remarkable,” said team captain Rebecca Farrell, BSN, RN. “Every year we continue to be inspired by our patients and by the incredible generosity of donor families who make transplant a possibility.”

At last count, there were approximately 226 team members – a number that will likely increase when the on-site registrations are tallied. Interestingly, the top two fundraisers this year for Team Penn Medicine this year shared quite a bit in common. Both are cardio-thoracic transplant recipients who were transplanted less than 14 months ago. Each of them raised more than $1,000.00 for the DASH and, not only did they both do the 5K race, they both surprised themselves with their race times.

Stephen Orloff, first-place fundraiser
First-place fundraiser, Stephen Orloff, a bilateral lung transplant recipient who received his transplant in June of 2013 explained that his intention with fundraising was to do his best to “pay it forward.” Stephen raised $1,670.00 in online donations for the DASH and expects that number to go up when the onsite donations are calculated.

“I just couldn’t believe that 10 months after transplant I beat the goal I set for myself by six minutes!” Stephen said. “I’ll have to give Ed Cantu [Surgical Director of the Lung Transplant Program] – a big hug the next time I see him.”

Navaz Mehta, heart transplant patient
Navaz Mehta, a transplant recipient who received her new heart in April 2013, raised $1,195.00. She was equally as surprised with her 5K race time.

“One year ago, I would have never expected to be able to run a 5K,” said Navaz. “In November, my mile was taking about 14 minutes; at the DASH, it was down to 11.04 minutes. It was so exciting to see how many people came out to support Team Penn Medicine and this important cause.”

Navaz went on the say that she extends her thanks and appreciation to the ICU staff, VAD Team, and the nursing and clinical staff on Founders 10 and Silverstein 10 who took care of her during her 7-week stay at Penn. She added, “I will also be eternally grateful to the Cardiac Transplant Team for all they have done to help get me back to my normal life. I look forward to having them oversee my progress in the many years to come."

We’ll provide an update when the final numbers become available. If you’d like to share your story about the 2014 DASH for Organ Donor Awareness, please contact Margaret Leid at 215-298-3929.

* final numbers released in 4-6 weeks

Monday, April 7, 2014

Pre-Transplant Planning: Helpful Hints for Assessing Your Prescription Plan

As you prepare for a liver transplant, understanding your prescription drug coverage is critical. Because many medications are necessary to ensure a successful transplant, and some will be required continually for the rest of your life, it’s important to take the time to learn which medications are covered under your prescription drug plan and what co-pays may be required.

To help guide you and your caregivers through the planning process, Transplant Pharmacist Erin Ticehurst, Pharm. D., BCPS shares three steps to help you and your caregivers assess your current prescription plan coverage:

  1. Check the formulary
  2. Learn the co-pays
  3. Call Penn with questions

Does my plan cover my medications?

First, check to see if your prescription plan covers medications that are frequently prescribed after liver transplant. Prescription plans call the list of medicines covered for their members a formulary. If a medicine is not on the formulary of your prescription plan, the cost of the medicine is your responsibility.

Co-payment and formulary information can be found:
  • on your insurance company’s website
  • on paperwork provided to you by the insurance company; or
  • by calling your insurance company directly.

Before you check your prescription plan’s formulary, be sure to have ready the following list of medicines and supplies that are commonly required after a liver transplant.

  • Mycophenolate mofetil (Cellcept®)
  • Azathioprine (Imuran®)
  • Prednisone
  • Tacrolimus (Prograf®)
  • Everolimus (Zortress®)
  • Acyclovir
  • Intravenous Ganciclovir
  • Nystatin
  • Fluconazole (Diflucan®)
  • Sulfamethoxazole/Trimethoprim (Bactrim®)
  • Novolog®
  • Ranitidine
  • Mepron
  • Blood glucose meter
  • Testing strips
  • Lancets

While the above list covers the medicines and supplies that are most commonly needed after a liver transplant, it’s important to remember that some conditions, such as high blood pressure or infection, may add to the medications listed above.

How much do they cost?

After you’ve confirmed the medicines are on your prescription plan’s formulary, the next step is to look at the monthly co-payment for these medications and think about whether the cost is within your monthly budget or whether it is more than you expect to be able to afford.

If the monthly co payments are more than you expect to be able to afford, or the medications are not covered by your insurance, let your liver transplant social worker know and they can help you come up with possible solutions to issues you’ve identified.

If your prescription plan is through Medicare Part D, the gap in prescription coverage called the ‘donut hole’ is an important issue to consider. Although this issue is expected to resolve in the future, it won’t be entirely solved until 2020 so it is important for you to keep track of your prescription medication spending so you can plan accordingly. If you are in the donut hole around the time of your transplant, you will need to have money set aside to ensure that your medications can be paid for.

Let Penn help

Once you’ve assessed your prescription plan, if there are any changes to your plan or your health insurance, it’s important to contact your transplant coordinator to let them know about any changes.

If coordinating this part of your pre-transplant plan feels overwhelming, remember, the Penn Liver Transplant Team is here to help. With one of the most experienced teams in the greater Philadelphia region, our team is often aware of resources that can address prescription medication issues.

If you have questions about the information you learn from your prescription drug provider, call your liver transplant coordinator, or send them a private message through the myPennMedicine online portal, and together we’ll work with you to explore the options and resources available.

Friday, March 21, 2014

What the Dash for Organ and Tissue Donor Awareness Means to Me

Guest blogger Laurie Shulte, a liver transplant recipient, talks about her transplant journey and what it has meant to her.

As I prepare for the upcoming annual Dash for Organ Donor Awareness in April, I think about what the Dash means to me. People say the Dash is a celebration of life. It is when thousands of people come together near the infamous steps of the Philadelphia Museum of Art to celebrate the lives of the angels that generously donated their organs and/or tissue and the lives of the people that were saved and/or enhanced as a result of these heroes’ courageous gifts.

But what does it mean to me to “celebrate life?" I have learned through my transplant experiences that there is a big difference between being alive and living. True, our lives were saved and we are thankful just to be alive. But to me, the Dash is a celebration of what it means to live. We were given a gift, not just to wake up another day, but to experience life as we otherwise wouldn’t have without the help of our donors. This meaning became clearer to me when I became “a recipient.”

Eight years ago, when I was only 24 years old, I couldn’t walk. I grew so sick in the months leading up to my liver transplant that my muscles atrophied. In fact, I couldn’t even lift my hand from the bed. After transplant, I lay in bed watching other patients make their walks around the floor, wondering when and if I would be able walk again. I knew I had a very long road to recovery ahead of me. Nevertheless, I made a vow to myself that I would do anything and everything I could to endure the endless physical and occupational therapy. I would take advantage of this new gift in every aspect of my life. From that point on, I was on a mission to be healthy.

So, not long after my transplant, when I was healed and able, I did something I never liked doing growing up. I started running. I ran because I could. It made me feel alive. As I ran, I thought back to my sickest moments, when I couldn’t move without someone’s help. I thought about my donor and what he had given me. And when I found out I needed another transplant, I ran some more. Just as someone would train for a marathon, I trained for my second transplant.

When I awoke from that surgery, the first thing I wanted to do was walk. When the nurse came in my room and wanted to see me get out of bed and into a chair, I happily obliged. Only sitting in the chair wasn’t enough. I wanted to (needed to) walk. When she wanted me to stop at the end of the hall and turn around, I insisted on continuing. I was going to be the patient that made her routine walks around the floor and not the one that watched from the sidelines. I thought to myself, “I am alive.” But even better than that, “I am living.” What a feeling!

Each time I run, I celebrate every moment I have been blessed with. This includes a fairy tale wedding, the purchase of my first home, a puppy, and, the biggest gift of all, the birth of my daughter. I run for all these moments, and the small ones in between. I run for the future and everything that is in store for me. But mostly, I run to honor my donors. The more I run, the healthier I am, and the longer I can keep this liver, a piece of my donor, alive. Every single step I take is a miracle that they have given me.

I look forward to standing on the starting line on April 13, a very proud participant of the Penn Transplant Team, surrounded by other people who share in this appreciation of life and who believe in the cause of promoting organ and tissue donor awareness.

Hopefully I will see you all there!

Friday, March 14, 2014

Team Penn Medicine ties for First Place in the 2014 DASH for Organ & Tissue Donor Awareness Online Registration Contest

Congratulations to Team Penn Medicine for winning the DASH for Organ Donor Awareness online registration contest! Thanks to the support of patients, caregivers, staff and friends of Penn Transplant Institute, the team tied for first place by registering 50 people online in two weeks.

“It’s so exciting to watch our team come together, set a goal and reach it,” said Team Captain Rebecca Farrell, BSN, RN CCTC. “We are already about one-third of the way towards our $7,000 fund raising target and our hope is to set another Team Penn Medicine record by exceeding that goal.”

The prize is a dedicated Team Penn Medicine Port-o-Potty at the team tent. For newcomers to the DASH, a port-o-potty may not sound like a prize to be excited about, but come DASH morning - when thousands of DASHers are at the Philadelphia Art Museum and hundreds are lining up at rows of port-o-potties before start time - that special Penn port-o-potty becomes a prized possession. It’s especially important with Team Medicine membership goal of 250 DASHers!

Currently, the official Team Penn Medicine roster is at 85. Team captain Rebecca Farrell notes that it’s common for registrations to increase about two weeks before the event, as people’s plans for the DASH weekend come into focus.

“This year we are encouraging early registration,” Farrell said. “The online registration contest is definitely a big help but now we need to get out into the community and spread the word. With 18 people a day dying on the transplant waiting list, and people saying ‘no’ to donation based on myths and misconceptions, raising money at the DASH to support community education is absolutely critical.”

If you’ve already registered with Team Penn Medicine: thank you! If you haven’t yet jumped online to register, fair warning: it can be a bit tricky to make sure you are signing up with Team Penn Medicine. To help simplify the process, we have a step-by-step guide to the DASH registration site. 

For questions about Team Penn Medicine, please contact Team Captain Rebecca Farrell at Rebecca.farrell@uphs.upenn.edu .

Friday, March 7, 2014

2014 Essay Contest - Transplant Nurses Day

In 2006, the International Transplant Nursing Society (ITNS) officially named April 16th as Transplant Nurses Day. This year, ITNS invites patients to submit an essay highlighting how an ITNS nurse offered exceptional care and support to you and your caregivers in your transplant journey. The nurse could be your transplant coordinator or a nurse who cared for you while you were in the hospital.

The theme for the essay is "My Transplant Nurse: A Perfect Match" and the winning essay will be featured in the ITNS Insider publication. In addition, the nurse will receive a recognition award, a letter sent to their supervisor, and acknowledgements on the ITNS website and E-Updates membership e-mail.

The essay competition is open to any transplant patient currently or formerly under the care of an ITNS-member transplant nurse. If you're not sure if your nurse is an ITNS member, touch base with them to find out.

The deadline for essay submission is Friday, March 16th. The essay should be 300–500 words, formatted to fit on one page with the following information in the top right corner of the essay:
  • First and last name
  • Phone number
  • Email
Each essay must be authentic, unpublished and the sole property of the entrant. The essay should be submitted with the entry form.
For more information about the contest, contact Rebecca Farrell at rebecca.farrell@uphs.upenn.edu or view the ITNS entry form.

Monday, February 24, 2014

Is it the Flu or a Cold?

The tough winter may be taking a toll on your immune system. If you’re feeling a bit under the weather, it can be difficult to gauge how serious your condition is. For liver transplant patients, it is important to distinguish between cold symptoms and flu symptoms--while both are respiratory illnesses-- they are treated differently.

Here are common symptoms of the flu and the cold that may help determine which “bug” you have:

Flu symptoms
  • Slow onset of illness (over a day)
  • Fever over 100.5F
  • Extreme fatigue
  • Dry cough
  • Terrible headache
  • Achy muscles
  • Chills
Cold symptoms
  • Slow onset of illness (over a day)
  • Low or no fever
  • Mild fatigue
  • Productive cough and runny or stuffy nose
  • No headache
  • No muscle aches
  • No chills
Whether it's a cold or the flu, the best treatment for both is getting plenty of rest and drinking lots of fluids. Before taking over-the-counter medicines, be sure they are safe for liver transplant patients.

The complications of the flu are more severe than those of a cold so if you suspect that you have the flu, please call your transplant nurse coordinator before coming to the Penn Transplant Institute. To minimize the potential spread of the virus, you may be asked to wear a mask and to sit separately from other patients waiting for appointments or we may request you to re-schedule your appointment.

Friday, February 7, 2014

Jessica Beth Schwartz Memorial Scholarship Opportunity for Young Transplant Recipients

If you are a young transplant recipient planning on college or trade school in 2014, a $2,500 scholarship is available to support your pursuit of learning and knowledge. Administered by the Gift of Life Donor Program, The Jessica Beth Schwartz Scholarship was established by her family and friends to honor her spirit and drive to continue her education.

Jessie’s Story

Jessie's Art
Jessie's Painting
Just a few days after she was born, Jessie was diagnosed with congenital heart disease, a condition that led her to need a heart transplant at the age of 14. In September of 1994, she received a new heart. An avid student and artist, Jessica lived for eight and half years after her transplant and participated in many volunteer activities supporting organ donation. In March 2003, she passed away at the age of 23. At the time of her passing, she was in college and planning a career in journalism. Young transplant recipients who share Jessie’s dream of higher education are encouraged to apply.

 

Scholarship Details

To qualify for the Jessica Beth Schwartz Memorial Scholarship, applicants must meet the following criteria:
  • Solid organ transplant recipient, under the age of 25
  • Senior in high school or presently enrolled in a 2 or 4-year college, university, or trade/technical school
  • Reside in the Gift of Life service region (eastern half of Pennsylvania, southern New Jersey, or Delaware)
  • Use the scholarship award for continuing education at an accredited college, university, or trade/technical school certificate program during the 2013-2014 academic year
  • Have not received the Jessica Beth Schwartz Memorial Scholarship in the past
In addition to completing this scholarship application, to be considered for the award, the following documentation is required:
  • Personal statement describing your transplant story and extracurricular and/or volunteer activities (500 words or less)
  • Essay describing an educational initiative to promote organ and tissue donation and transplantation awareness in high school or college students (200 words or less
  • Current transcript and letter of acceptance from a college or university
  • Two letters of reference from a non-relative (i.e.: transplant center, professor, employer)
Applications must be postmarked by Wednesday, February 26, 2014. The Gift of Life Donor Program and the Transplant Foundation will contact winners in early March. Winners will be invited to an acceptance ceremony that will be held on Sunday, March 23rd. For more information, please contact Jillian Stahl, Community Relations Liaison, Gift of Life Donor Program at 215-557-8090.