Kidney Transplant Newsletter - Winter 2017

February 2017

While this is the final issue of Transplant News, we’re hoping you will stay connected with us!

The print version of our newsletter is being discontinued, but moving to our website.

The newsletter for the Kidney Transplant Program began in 2008 as a letter with an emphasis to keep our patients informed about the twice yearly safety outcomes SRTR data.

Since then, we’ve expanded the content to include stories about the staff, current events and other educational health reminders.

With more than 70% of our patients reporting they have web-enabled smart phones and get much of their updates through these devices, it

seems relevant for us to create a digital edition.

Therefore, our next newsletter will release this coming summer on our website. It will be promoted with a letter and on our Facebook.

And for those folks who are not current with technology, a one-time, small batch of printed newsletters will be available by request.

Thank you for understanding our need to evolve with current expectations.

Ryan Haydu, MBA Administrative Director, Kidney Transplant Program

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Patient Story: ‘I was my father’s best shot’ says daughter who donated kidney

An only child, Dayna Morris has always been very close to her mom and dad. Every Saturday night, Morris and her husband would go out to dinner with her parents.

“With a living donor, recovery is quicker, and the organ is less likely to be rejected,” said S. John Swanson III, M.D., surgical director for the Kidney Transplant Program.

“The kidney also begins working faster and continues working longer because the kidney is usually healthier and outside the body for less time than one from a deceased donor.”

Then her dad, James Claxton, lost his appetite. After more than 20 years as a person with diabetes, his kidneys were failing. He was on dialysis three days a week. One of the side effects was an unpleasant, metallic taste in his mouth.

Claxton did not ask his daughter if she would be tested to see if she was a match.

“Nothing tasted good,” he said. “I was tired out.”

It was Morris who suggested it.

That was in 2012. Claxton’s doctors recommended a kidney transplant. He consulted with the kidney transplant team at Christiana Care, an easy drive from his home in Pennsville, New Jersey, and the only adult transplant center between Philadelphia and Baltimore.

“His color was horrible, he lost a ton of weight—and I could fix this,” said Morris, who was then 40. “As an only child, I felt that I was my father’s best shot.”

He learned that the wait for a kidney from a deceased donor could be as long as five years. A live donor would eliminate that wait. Outcomes for transplants involving live donors are significantly better.

Both her husband and her father had lots of questions regarding the safety of the procedure.

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At the transplant center, she underwent extensive psychological and medical testing.

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“They answered every single question,” Claxton said. “Everyone in the transplant program was extremely professional, as well as friendly and compassionate.”

Four years later, both father and daughter are doing well. They quickly reestablished their tradition of having dinner together each Saturday.

During her tests, Morris learned that she needed a hernia repair. The team consulted with another surgeon so that she could have that operation at the same time she was donating a kidney.

“My dad has a better quality of life. He isn’t hooked up to a dialysis machine for four hours three times a week,” she said. “It’s great seeing him enjoying his food.”

Claxton says he feels better at 70 than he did when he was 60.

Her transplant surgery was performed by Dr. Swanson. Her father’s surgeon was Velma P. Scantlebury, M.D., FACS, associate director of the Kidney Transplant Program.

“I’m back playing golf. I go to the gym two or three times a week,” he said. “My daughter gave me a whole new lease on life.”

Eight weeks after she donated the kidney, Morris was back at work as an advanced math teacher.

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Virus, Cold, and Flu after Transplant Christy Sentman, RN It is cold and flu season again. Did you know you can sometimes still get the flu even if you had a flu shot? Make sure you know the signs of sickness and know what to do if you get sick.

Problem

What to do

Diarrhea

Call transplant office if: • You have diarrhea for more than 3 days • Diarrhea causes you to lose weight You may need to have some testing or get some medicine

Cold Symptoms

Look in transplant binder at “Safe Over-the-Counter Medicines” list to find a medicine that is right for you

• Runny nose • Cough • NO FEVER

Call your primary doctor or go to a Medical Aid Unit if: • You don’t get better in 3 days • You get worse

Flu Symptoms FEVER Chills Muscle aches Cough Stuffy nose or sinuses • Runny nose • Headaches • You are extremely tired • • • • •

Call you primary doctor right away Treating the flu early can shorten how long you have it and make you feel better faster

It is important to keep germs (bacteria and viruses) off your hands and out of your eyes, nose, and mouth.

Always wash your hands with soap and water or hand sanitizer gel: • • • •

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After using the bathroom After blowing your nose, sneezing, or coughing into your hands Before eating or taking your medicine Any time they look dirty

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3rd Annual Delaware Donor Dash

organ and tissue donation education and programming in Delaware.

Christiana Care Kidney Transplant Program will support this event again in 2017 (exact date and location TBD) and will continue to spread the word about organ donation. The proceeds from the DASH will be used to fund organ and tissue donation and transplantation initiatives in Delaware.

Remember, without organ donors (deceased or living) there would not be an opportunity for transplant. Thank you for helping us support this worthwhile cause!

Delaware’s third DONOR DASH was held on August 6, 2016 and it was a great success! Over 340 participants, recipients, donor families, volunteers, supporters, and hospital partners came out to show their support. The DASH was a competitive run (although some of us walked) and many people from all communities participated.

Young and old enjoyed the beautiful, but very warm morning at the Riverfront.

With your hard work and dedication, we raised more than $38,000 to help support

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App Review: Apple Health app S. Sofia Gomez-Rubio

The app now encourages the act of living in the present moment through the mindfulness category.

While it does not provide meditation tools, it does allow you to sync data from third-party mindfulness apps, such as Headspace, to record your meditation minutes in one place.

University of Delaware Dietetic Intern

Calling all iPhone users! If you have an iPhone 4s or iPod Touch 5th generation or later and recently downloaded the iOS 10 software, you should re-explore the free and revamped Apple Health app.

The last category focuses on sleep. While it is not able to track your sleep cycle, it does allow you to sync it to third-party apps, such as Pillow, that follow your sleep patterns. The Health app combines this data to help you analyze your sleep cycle and make changes to optimize your health.

Along with the new software came new features.

The app now focuses on four key areas that affect health: activity, nutrition, mindfulness, and sleep. It also still allows storage of emergency medical information, body measurements, and vitals.

This app could be used very efficiently for an overview of your health; however some consider it more of a storage center rather than a useful daily health app. As mentioned above, the app doesn’t allow you to manually input certain information, such as food intake or sleep times and patterns. You would have to use other apps for that which could then sync to the Health app for review. However, for people who see different doctors often and have many tests done, it is a great place to store numbers for reference. You can also add weights, laboratory values, such as potassium and phosphorus, blood sugar levels, and other important health information. This is a great tool for them to track this data from appointment to appointment.

The activity category automatically tracks your steps, distance, and flights of stairs as long as you have your phone on you. It has the capacity of displaying your data on a daily, weekly, monthly, and yearly basis.

You can look back and see your highest step record or compare your steps week to week. It also allows you to sync exercise data from your Apple Watch or third-party apps, such as Nike+, to consolidate your activity data.

The nutrition section provides a brief background on important nutrients. While it does not allow you to actually input food intake, it does allow you to sync it to third-party apps, such as MyFitnessPal, where you can enter individual food items day by day. Using that data, the Health app provides a breakdown of your overall nutrient intake.

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Overall, Apple Health gives you a one stop place to review all of your health data collected by your iPhone, Apple Watch, and third-party apps. The activity portion is a great motivator to move daily.

The other three categories, when used alongside other health apps, are a great reminder to be mindful of eating, thinking, and sleeping patterns, which are beneficial to everyone’s health no matter their age or health status!

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It is important to have a plan for keeping your relationship with the person receiving care healthy. Most likely you decided to be their caregiver because of the relationship you had with the patient prior to becoming their caregiver. For instance you fell in love with your spouse before you decided to be their transplant caregiver, or he/she was your child before you were his/her transplant caregiver. It is essential to try to maintain that relationship you had before becoming their caregiver, and there are a few steps that can help you do that.

Resources for Caregivers

Eileen Edge, MSW, LCSW In the life of a transplant recipient, the patient and caregiver go hand in hand. The caregiver in a recipient’s life is one of the most important aspects of the long term success of an organ transplant. Caregivers need support and encouragement to do what has to be done on a daily basis, so it’s important for them to take care of themselves. The Caregiver Lifeline program has a web site with a wide variety of articles and resources to help patients and families understand and cope with the transplant process. Go to www.giftoflifefamilyhouse.org, and click on ‘Caregivers’ at the right top of the page.

Below please see the article, Keeping your Relationship with the Patient Healthy, an article from the web page written by the social worker. Check back often to the page for helpful hints throughout the year.

1.Identify what you can and can’t do for the patient.

2. Identify what caregiving responsibilities cause you distress. You may not be able to be a caregiver 24 hours a day due to other responsibilities, don’t forget those other responsibilities, and let the transplant patient know that during those times you are unable to provide care. When you are able to determine what specific times you can and can’t provide care, it will set up boundaries which can help you avoid becoming overwhelmed. Similarly there may be some caregiving responsibilities that are distressing to you. Determining what those are and asking for help to provide that care can be very helpful. When you are doing something for someone you love and you are distressed by the task, you may become resentful or stressed due to caregiving.

3. Make a careplan. This may seem time consuming. A care plan is somewhat like a journal that documents your daily tasks and appointments. You can do it as frequently (daily) or infrequently (monthly) as there is a need. A careplan will help you organize your days and allow you to see what days/weeks you will need help and what days you have more free time for yourself.

Keeping your Relationship with the Patient Healthy Talia Giordano, MSW, LSW Gift of Life Family House Social Worker

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patient. There is a transplant social worker to assist with tough issues related to the transplant process. Respite care for time off is an option, an aide or in-home nurse is also an option, even individual, family, or couples counseling may be helpful. There are many resources available so you don’t have to feel alone and you can feel happy being a caregiver for your loved one.

4. Take time for yourself.

5. Take time together. It is important for any caregiver to take time for themselves so they don’t forget what makes them happy. It is also important to take time with the patient unrelated to caregiving. If it’s your spouse have a date night every so often, or make a play date with your child. You don’t want to forget why you love yourself and why you love the patient.

6. Ask for help. Sometimes we need help from others, like family, friends, social worker, or the transplant team. Don’t be afraid to ask for help, sometimes we cannot do everything on our own. If you try to do everything alone you could become fatigued, burnt-out, stressed, or depressed, which could cause resentment towards the

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Afraid to ask?

Let a Living Donor Champion Help

After all, Living Donor transplants typically result in significantly better outcomes.

Invite possible Living Donors to visit our website at: www.christianacare.org/kidneytransplant to learn more about living donation and they can potentially fill out the web form to get the evaluation process started.

We hope you’re excited about this new approach. We’re taking these steps to shorten your time to transplant.

After speaking with many patients and members of the team, I realize it’s difficult to ask possible Living Donors to help. A Living Donor Champion can be your partner in this process and help you.

I look forward to seeing you at one of the upcoming sessions.

Be well,

I encourage you to attend one of our free training sessions to learn how to find a Living Donor.

This training program provides you and your champion with new skills and tools to help you find more possible Living Donors.

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Ryan Haydu, MBA Administrative Director, Kidney Transplant Program

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February 1, 2017

Dear Patient: The United Network for Organ Sharing and the Centers for Medicare and Medicaid Services require that we inform you of our program’s post-transplant outcomes on a routine basis. The outcomes for the Kidney Transplant Program at the Christiana Care Health System follow in the data below.

Graft Survival means that the transplanted kidney continued to work. Patient survival means that the transplant recipient is alive. Graft survival is less than patient survival because some patients have had a second transplant if the graft failed (so the graft was lost but not the person).

07/01/2013 – 12/31/20151

Christiana Care Kidney Transplant

1-year Adult Graft Survival rate2 1-year Adult Patient Survival Rate 1

Kidney Transplant Nationally

94.72%

Expected Outcomes Based on Patient Characteristics 94.18%

96.98%

96.50%

97.34%

95.04%

Most recent timeframe analyzed.

2 18

years of age and older

If you would like additional details on this data, or would like to see additional information, please visit the “Program and Hospital Data” page on the Scientific Registry for Transplant Recipients online at www.srtr.org. Also, feel free to call us at 302-623-3866 or 1-866-682-6792.

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