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Tue, Apr 17 8:54am · Q&A for Out-of-State Patients in Transplant

Patients with complex care needs often choose to travel in order to receive the care they feel is best for them. Transplant centers are accustomed to caring for patients from out-of-state and even patients from other countries. Many centers have concierge services to assist with housing and transportation needs, and international offices to help with visas and travel. Even with these resources you may have questions regarding traveling to a transplant center for evaluation and surgery. Here are frequent Q&As we often receive from out-of-state patients:

shutterstock_287556521Q: Where will I stay and can my caregiver/family stay with me?

When you’re traveling to a transplant center for your evaluation, you’ll need overnight accommodations, sometimes for several days or even a week. Most transplant evaluations include outpatient testing and consultations, so you won’t be admitted to the hospital unless it’s necessary. Patients can choose to stay in a hotel, an extended stay residence, or in a transplant house nearby if you’re receiving care at Mayo Clinic. Our transplant houses are a popular option because the cost is low, and patients can visit with others who are in their same situation. Some transplant houses don’t allow children, but your caregiver is welcome to stay with you. Check with your local facility for their policies before you make your reservation.

Q: How will I get around town and back and forth to my appointments?

Many cities that have transplant centers also have public transportation options. Some patients choose to rent a car for extended stays, but often they use a city bus or taxis to get around town. If you’re staying at a hotel or transplant house, often they’ll have shuttle services that will take you to and from your appointments. Mayo Clinic has employees who will escort you to all of your appointments, help with directions, and provide you with wheelchairs if needed.

Q: Once I am on the waiting list, do I need to relocate closer to my transplant center?

After your evaluation is complete and you’re placed on the waiting list, you should be able to return home to wait for your organ transplant. Once your doctors see that your time may come soon for transplant, they’ll let you know if you need to relocate. Depending on your current location and the organ you need, you may be able to remain at home and drive to the transplant center once you’re called for your transplant. If you’re too far away to drive, a charter flight or medical transport may be an option if your insurance plan covers it, or if you have the financial means to pay the out-of-pocket expense.

Q: How long will I stay away from home before and after my transplant?

Evaluation for transplant can take 3-5 days or more, depending on the organ you need and your current medical condition. Once you pass through that initial evaluation, you may need additional testing. Often that testing can be performed at home with your local provider, but occasionally you’ll need to travel back to the transplant center a time or two before you’re listed on the waiting list. Once you’re on the transplant list, most transplant centers will ask you to return once per year while you wait to update your testing and renew your registration on the waiting list. Waiting time on the list varies, but your care team can provide you with an average time that you may wait.

After your transplant surgery, you’ll be asked to stay in town nearby the transplant center until you have fully recovered. Recovery is different for each patient and each organ transplant, but you can expect to stay near your transplant center between two weeks and three months. During this time you’ll meet frequently with your doctor, sometimes every day, to determine when it’s safe for you to return home.

Q: Do I need someone with me the entire time during my wait and after my transplant?

Transplant caregivers are a critical part of your transplant. Most transplant centers require you to have one or more caregivers identified for the time before and after your transplant. Your caregiver can attend appointments with you, take notes, help you with activities of daily living, help with medications, and many other tasks associated with your transplant and recovery. You should plan to bring someone to each of your visits to the transplant center and have someone identified to care for you after your transplant and when you return home.

All of this sounds like a lot of work and planning, and it is, but it doesn’t have to be done alone. Your caregiver is there to help you make these plans and decisions, and your transplant center is there to help make your time before and after transplant as simple as possible. If you’re receiving care at Mayo Clinic, we want your experience to be stress-free so you can remain focused on your health.

Do you have other concerns about going out-of-state for your transplant? Comment below; we’re happy to address more questions any time!

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Tue, Apr 3 8:18am · Celebrate Donate Life Month in Transplant

April is National Donate Life Month, a month-long observance commissioned by Donate Life America intended to encourage Americans to register as organ, eye and tissue donors and to celebrate those that have saved lives through the gift of donation.

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If you’re passionate about organ donation, a donor yourself, or a recipient – we invite you to join us in celebrating Donate Life Month.

Here are five ways to participate:

  1. Update your social media images. Donate Life has Facebook, Instagram and Twitter photos and frames that you can use in place of your social media images throughout April. This year’s artwork was inspired by the image of a rainbow and Maya Angelou’s quote, “Be a rainbow in someone else’s cloud.” Head over to Donate Life’s website to check it out!
  2. Dress for the occasion. National Donate Life Blue & Green Day is Friday, April 13. Wear blue and green to spread awareness of the nearly 115,000 people on the transplant waiting list. Looking for some organ donation swag? Visit this page to get decked out. We’d love to see your photos!
  3. Participate in a local event. Scan your community calendar for local events recognizing Donate Life Month. If you don’t see any, plan your own! The Katie Ride for Life in Amelia Island, Florida, and the Timmay 5K are two events taking place near Mayo Clinic campuses.
  4. Share your story. Why are you passionate about organ donation? Tell your story to those around you, whether it be via a Facebook post or through a one-to-one conversation. Personal testimonies are a powerful way to help others understand the difference they can make as an organ donor.
  5. Join our social media campaign. Throughout April, the Transplantation at Mayo Clinic Facebook page will be drawing attention to the need for organ donors, and promoting our goal of registering 200 donors using this link throughout the month. We encourage you to like, comment and share these posts with the people in your network.

Ninety-five percent of Americans are in favor of being an organ donor, but only 56 percent are registered. Help fill the gap by educating those around you about the incredibly easy and critically important step of becoming an organ donor.

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Tue, Mar 20 9:30am · Celebrate National Kidney Month in Transplant

March is National Kidney Month and it’s a great time to give this vital organ some extra attention. When your kidneys are working well, they rid your body of excess fluid, electrolytes and wastes. When they aren’t working like they should, you can end up with chronic kidney failure.

Treatment options can include medications and dialysis, but for some patients, kidney transplant might be the best option. Compared to dialysis, kidney transplant gives better quality of life, lowers risk of death, has fewer dietary restrictions and a lower treatment cost.2018-03-20 Kidney

A pre-emptive kidney transplant is a kidney transplant that takes place before your kidney function deteriorates to the point of needing dialysis. Right now, only about 20% of the kidney transplants performed in the U.S. are performed pre-emptively, but living donor transplant and paired donation kidney transplant can help more people get their new kidney before dialysis is necessary. By getting a pre-emptive kidney transplant, patients can have lower risk of rejection, improved survival rates, improved quality of life and can avoid the health complications associated with dialysis. A transplanted kidney performs 100% of a kidney’s function, whereas dialysis only performs 10%. After recovering from surgery, transplant patients are able to return to their normal schedule and activities. Dialysis patients have 3-4 treatment sessions per week taking several hours each.

What can you do to help enhance people’s knowledge of kidneys and kidney transplant during National Kidney Month? First, help us spread the word about pre-emptive kidney transplant so it can become an option for more patients facing kidney failure. Second, educate your friends and family about organ donation. Our toolkits can be a helpful resource, especially to learn more about living donation. Finally, share your story with friends and family. Maybe you’ve signed up to be a donor, maybe you’re a recipient or donated an organ to someone in need. No matter your story, use it to spark discussion about how to keep organs healthy and how to navigate transplant if you end up with organ failure one day.

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Tue, Feb 20 1:55pm · January 2018 Program Summary Report Highlights in Transplant

The Scientific Registry of Transplant Recipients (SRTR) is a key resource for transplant patients and their caregivers. SRTR’s mission is to provide advanced statistical analyses on solid organ allocation and transplantation. The organization delivers on that mission by producing three key reports: an annual report, organ procurement organization-specific reports, and transplant program-specific reports (PSRs).

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PSRs are available on every transplant center in the United States, including for all three of Mayo Clinic’s transplant centers located in Jacksonville, FL; Phoenix, AZ; and Rochester, MN. The most recent PSRs released in January feature a number of excellent outcomes at our sites, giving confidence to transplant patients choosing Mayo Clinic.

If you’re unfamiliar with SRTR and the PSRs they produce, we encourage you to dive in. Evaluating outcomes data should be a key step in choosing the transplant center that’s right for you or your loved one. Here are three key definitions and outcomes for Mayo’s most recent reports.

Transplant rate is a measure of how frequently patients on a program’s waiting list undergo transplant. Programs with higher transplant rates tend to perform transplants more frequently than programs with lower transplant rates. The transplant rate is given as a number of transplants per 100 patients listed per year. So a value of 20 would mean for every 100 patients listed for one year at this program, 20 would be transplanted.

The January PSR for Mayo Clinic’s kidney transplant program in Rochester showed a transplant rate of 33.7, which is statistically better than the expected average of 25.

Patient survival is a measure of the likelihood that a patient will be alive at a certain time post-transplant. The January PSR for Mayo Clinic’s heart transplant program in Arizona reported a one year patient survival of 97.86%, which is statistically better than expected. This result places Mayo Clinic’s campus in Phoenix as the top heart program in the country for this report.

Graft survival reports the likelihood that a patient will be alive with a functioning transplanted organ at a certain time post-transplant. According to the January PSR for Mayo Clinic’s liver transplant program in Florida, the one year graft survival is 92.80%, which is statistically better than expected. This result places Mayo Clinic’s campus in Jacksonville among the top 4% of liver transplant programs in the country.

SRTR truly holds a wealth of information that can benefit you on your journey to transplantation. If you’ve used  data from SRTR before, please share! What tips and tricks do you know that can help others use this data to make decisions about their transplant care?

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Tue, Feb 6 11:12am · National Donor Day: Celebrating the Gift of Life in Transplant

Today in the U.S. more than 114,000 people are in need of an organ transplant. Even though 2017 was the biggest year in history for organ transplants, we still fell short – by a lot – with 34,768 transplants performed last year. In order for more people to benefit from a lifesaving organ transplant, we need more donors.

Organ donation is the process of giving an organ or a part of an organ to another person who has been diagnosed with organ failure. Both deceased and living organ donation begins with a person who recognizes an opportunity to save someone’s life. February 14th is National Donor Day, an observance day originally designated in 1998 to raise awareness for organ, eye, tissue, marrow, platelet and blood donation. In the United States, people aren’t required to be donors. They give of themselves because they have a strong desire to help others. Let’s learn more about the process for both living and deceased organ donation.

LIVING ORGAN DONATION2018-01-29 National Donor Day Blog Post

Living donation is a wonderful act of generosity and courage. People can donate part of their liver or one of their kidneys while they’re still living. Living donation not only saves the life of the recipient, it can also relieve pressure on the waiting list for others. We can break down the living donation process into six steps:

Consider and Discuss. Take time to think about living donation, learn everything you can about the process, and discuss with a trusted advisor. Discussing with another person might give you an outside opinion you haven’t considered. Consider the possible outcomes and make sure you understand the time commitment to go through the process.

Provide your Information to the Transplant Center. Some centers will record your information in a telephone call; some have an online form; some might send you paperwork to complete. At Mayo Clinic, our online questionnaire will provide our nurses with all the information they need to determine if you’re a potential living donor candidate.

Talk with Experts. The transplant center staff can answer your questions about the process and help ease concerns. Nurses and social workers are some of the first people you’ll speak to about your desire to donate. They become part of your transplant team when you decide to proceed to evaluation.

Tests and Examinations. As a potential donor, you’ll have an evaluation similar to that of the recipient. Bloodwork, radiology, and consultations with doctors, surgeons, social workers, and nurses will be just some of the testing and consultations you’ll undergo as part of your donor evaluation.

Surgery to Save a Life. Your surgery for kidney donation is typically a minimally invasive surgery that leaves you with small incisions and a relatively quick recovery. For liver donation, a portion of your liver is removed and given to the recipient. The liver regenerates to normal size within a few months after surgery.

Recovery. Most people are in the hospital from 2 to 7 days depending upon the organ they donated. You can expect to return to normal activities in 6-8 weeks after surgery. You’ll visit the clinic a few times after surgery and a few times after you have been sent home to be sure you’re recovering well.

DECEASED ORGAN DONATION

Signing up for deceased donation takes very little time and requires no preliminary physicals or doctor visits. There is no age limit for deceased donations. The planning on your part is simple and quick compared to living donation, and there are just a few steps for you to follow.

Discuss with Family. Your decision to donate is a personal one, but including your family is an important step. Letting your family know your wishes gives them peace of mind and eases their burden when you pass away.

Sign Up. You can sign up to be an organ donor in a couple of ways. First, when you get a new driver’s license or renew your license, you can sign up in most states through the Department of Motor Vehicles (DMV). Just check the box. It’s simple and could save a life. You can also sign up through Donate Life in your state. You can search Donate Life America for your state registry and fill out a simple form online to register, or you can simply go to Register Me to fill out the information quickly online. At the time of your death, doctors will determine if you’re able to be a donor and which organs you’re able to donate. You don’t need to re-enroll in the list or remove yourself from the list when you reach a certain age. You might be able to save a life no matter your circumstances.

Everyone has their own reason for signing up to save someone’s life. Maybe you know someone in need of transplant, maybe you’ve lost someone to organ failure or maybe you’re just a giving soul – no matter your reason, you’re contributing one of the greatest gifts someone can receive. Recipients of organs, tissue, blood and bone marrow often say they can never properly thank their donors for the gift of life. Some say the best way they can repay their donor is to live life to the fullest and take great care of the gift they were given. For donor families, often the opportunity to meet their loved one’s recipient and watch them live a full and happy life is the thanks they need to heal and move on in their time of grief.

Mayo Clinic shows gratitude to donors by making safety and quality of care for transplant recipients and donors our highest priority, and by being the best stewards of the gift that was given.

On this National Donor Day, please join us in thanking the thousands of donors, both deceased and living, who out of generosity and courage, have given the ultimate gift.

If you’re signed up to be a deceased organ donor or you have been a living organ donor, what can you say to teach others about donation?

 

 

 

 

 

 

 

 

 

 

 

 

 

Tue, Jan 23 9:23am · Meet These Incredible Transplant Patients in Transplant

Everybody has a story. No matter your age, what you’ve been through, or where you are today, you have a story. And it’s remarkable!

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This is especially true of people who have overcome a health crisis. Consider transplant patients. There’s a story and life before transplant, as well as after. A story about “getting the call.” There’s a story to be told around recovering from surgery, and how patients are using their gift of a second chance at life. Remarkable, right?

Today we introduce you to three incredible transplant patients, and encourage you to read and be inspired by their remarkable stories.

Meet Jennifer. A diagnosis of IgA nephropathy at age 21 left Jennifer’s kidneys functioning at only 7 percent. She was receiving dialysis for 10 hours at night and two more sessions during the day, leaving Jennifer with little time for friends or a full-time job. Due to the severity of her condition, Jennifer was added to the waiting list for a kidney transplant, and listed with two medical centers; one in Miami and one in Houston. She waited for 12 years in Miami and nine years in Houston. Then, one day, someone at Jennifer’s dialysis center approached her and suggested she contact Mayo Clinic’s Arizona campus. She did, and that’s when everything started to change. Here’s Jennifer’s full story.

Jennifer

Meet Kent. Kent’s symptoms began in January 2016. He was weak, his legs were swollen, and his blood pressure was low. By September that year, he was in liver failure and in need of a new liver, but his MELD score was not high enough to put him on top of the waiting list. As his wait for a liver transplant continued, his health got worse and Kent went into kidney failure. Then, on April 22, 2017, he got “the call.” Here’s Kent’s full story.

Kent

Meet Maksim. It was New Year’s Eve, and parents Jerimiah and Rachael were in a pediatric intensive care unit with their 4-year-old son, Maksim, who had been hospitalized for severe lethargy and dehydration caused by an E. coli infection. Even though Maksim was discharged from the hospital after a three month stay, the infection had caused kidney failure, and Maksim would need a transplant. The events leading up to his transplant were a whirlwind. Here’s Maksim’s full story.

Maksim

What’s your story?

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Tue, Jan 9 8:05am · Meet the Expert: Bev Hansen, M.S.W., L.M.S.W. in Transplant

When asked about how she made her career choice, Bev Hansen has a clever response.

“I’m a social worker ‘cause I work at being social,” she says.

Though Bev, oncology/transplant social work manager at Mayo Clinic’s campus in Arizona, really does enjoy socializing and throwing parties and celebrations, her true motivations for pursuing social work run much deeper and are rooted in her faith.

Bev Hansen

“It was kind of a faith-based thing,” she says. “I wanted to be able to help people who have a difficult time helping themselves: the poor, the underserved,” she says. “In any way I could, I wanted to help others, in any plight they were going through.”

Prior to her social work position at Mayo Clinic, Bev worked with kids just getting involved with gangs in Chicago; as an intake social worker for Child Protective Services; as a pediatric counselor for the pediatric psychiatry unit at Phoenix Children’s Hospital, and then stayed at home full-time with her children for 10 years. She returned to work in an interim role in transplant social work at Mayo Clinic’s campus in Arizona. She fit so well with the team there that she was hired to stay on in transplant social work after her three-month stint.

“Other prior jobs were great, but transplant is definitely my love,” says Bev. “With transplant, there is always a hope.”

Sharon Wickner, the only other transplant social worker when Bev started at the Arizona campus, became one of Bev’s key mentors, particularly for assimilating into the Mayo Clinic culture. Sharon radiated joy to be able to work at Mayo Clinic and love for her patients; Bev found both of these qualities infectious.

Today Bev manages a team of more than 30 inpatient and outpatient social workers, 15 of whom focus on transplantation. “I still find myself heavily involved in transplant, “she says.

As a manager, most of her day is spent in meetings and responding to emails. What she really enjoys the most is time spent with her staff, helping them excel in their roles.

Another facet of her Mayo Clinic work she appreciates is the professional atmosphere. “If you’re hired at Mayo Clinic, you’re excellent at what you do,” she says. “People are very dedicated — you see it all the time.”

Bev also enjoys the new beginning a transplant offers patients. “It’s so much fun to see patients so sick get a new lease on life,” she says.

Within the transplant arena, Bev’s favorite part is donation, indicating her heart is with the donors. In fact, her passion for donation and desire to help others even propelled her to donate her own kidney to her cousin when he reached kidney failure and siblings were unable to donate. Due to an opportunity to participate in a research study on half-matched donation, or donation where only half of the donor and recipient’s human leukocyte antigen (HLA) matches, the transplant took place in California in 2012.

Even though recovery spanned weeks, Bev feels grateful for the experience. “Being a donor was more of a privilege — it was truly amazing,” she says. “Of course, I’d thought about this and asked myself ‘Would I do this?’

“I thought that if someone I knew needed a donor, I would.”

As a tribute to Bev, when her cousin and his wife later gave birth to twins, the little girl was given the middle name “Beverly.”

Today, Bev says she cannot tell she has only one kidney, and she can downhill ski and keep up with her college-aged boys. The donation experience broadened her appreciation for both transplant patients and their caregivers.

“It’s interesting being on the patient end,” Bev says. “Just a small taste of it made me empathize more with all they go through. It gave me more compassion for our patients and gave me a heart for nurses and all that they do. Definitely, without a doubt, I’d do it again.”

When she’s not at work, Bev enjoys sitting in the backyard with her husband enjoying a glass of wine, going out to coffee with friends and traveling. She also enjoys a good joke, though sometimes she finds herself appreciating it solo.

“My boys give me such a hard time ‘cause of my sense of humor,” she says. “I crack a joke, and I’m the only person laughing. I crack myself up all the time.”

Wouldn’t you like to have coffee with Bev?

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Dec 19, 2017 · Meet Tom: Halfway Around the World and in Need of a New Liver in Transplant

In May 2017, 25-year-old Tom laid in a hospital bed in Osaka, Japan, his health declining fast due to liver failure caused by alpha-1 antitrypsin deficiency. The next month, he was home in Florida and receiving a life-saving liver transplant.

If you’re finding that your hope needs to be restored this holiday season, we encourage you to read Tom’s story. Tom’s journey reminds us that hope and healing is possible, even when you’re halfway around the world.

Read Tom’s full story.

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Generosity is often abundant during the holidays. This season, educate those around you about becoming an organ donor.

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