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Thu, Sep 14 11:45am · One Liver, Two Lives

Nearly 15,000 Americans are waiting for a liver transplant. Sadly, many may never get the call saying that an organ — and a second chance at life — has been found. Living organ donation is a promising alternative for those waiting for a liver transplant from a deceased donor. It’s an amazing act of generosity and courage.2017-09-13 One Liver, Two Lives Blog

Most people don’t know about living organ donation and the fact they can save a life by sharing a portion of their liver. The liver has the amazing ability to regenerate itself and grow back to its full size in a matter of weeks. Mayo Clinic is dedicated to raising awareness about the power of living organ donation. Explore our toolkits, share our posts on social media, and talk to friends and loved ones about the impact that can be made through living donation.

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Living Donor Toolkit
Most living liver donors are family and friends, and the hospital stay for a donor is typically less than a week. Visit our living donor toolkit to learn what living donors can expect with tests and screening, the procedure, risks, recovery, financial information and more.

 

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Recipient Toolkit
If you’ve been told you need a liver transplant, we’re here to help you learn about living organ donation. In our recipient toolkit, we’ll provide you with all the details, from finding a donor to recovering from your operation.

 

FAQs

Is organ donation against my religion? What is the cut-off age for being a living donor? Is it normal to have doubts about becoming a living organ donor? Visit our FAQ tab to get these answers and many more.

 

Spread the word! One Liver, Two Lives

Raising awareness about living donation is important. Reading and sharing living donor information educates yourself and others on the need, process, and life-saving gift of organ donation. Share our recipient toolkit and living donor toolkit with your family and friends.

 

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Tue, Sep 12 10:05am · Meet Scott: Brothers Bond Over Kidney Disease, Transplant

Scott was diagnosed with IgA nephropathy 15 years ago. The disease causes inflammation of the kidneys, limiting the organ’s ability to filter waste, excess water and electrolytes from the blood. While Scott didn’t have any major symptoms at first, the disease progressed over time, bringing Scott close to kidney failure.

When Scott’s care team started discussing dialysis and a kidney transplant with him, Scott’s brother David quickly volunteered to be tested as his living kidney donor. The two were a match.

Learn how David’s kidney donation to Scott brought these brothers closer together.

Read Scott’s full story.

2017-07-27 Meet Scott Blog

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Wed, Aug 30 8:03am · Top Transplant Hacks: Patients Share Their Best Tips and Tricks

2017-08-14 Transplant Hacks Blog Post

Your doctor gave you a list of do’s and don’ts to minimize your risk after transplant, especially due to your weakened immune system, and slowly you’ve begun to learn some tricks that help you in your recovery. Beyond this great information and experience, what if you could also get some tips, or life hacks, from other transplant patients who have been there, done that?

In Mayo Clinic’s online community, Mayo Clinic Connect, members share exactly that — their best post-transplant hacks — in a discussion thread called Living Life after Your Transplant. We thought you might enjoy them brought together in a handy list.

Rosemary, a transplant recipient at Mayo Clinic’s campus in Rochester, Minnesota, had the following to say about her hacks: “I remember being told that it is all about choices and risks involved. I want to assure you that my choices as to how to live after transplant are just that: mine. We can become friends, chat, share ideas on how to live our lives — but ultimately your own post-transplant care team is your primary judge and jury on your important issues. You will find what is comfortable and what works for you as you move forward.

Here are some of the top hacks Rosemary and other Mayo Clinic Connect Transplants Group members identified, in hopes it will help make your life easier after transplant:

Maintaining a Healthy Diet

  • Avoid unpasteurized foods, such as dairy, juice and cider.
  • Wash food before preparing.
  • Make most of your meals at home.

Taking Your Meds

  • Write out and keep a schedule for taking your medications.
  • Create a daily medicine reminder so you don’t forget.

Flying on an Airplane

  • Wear a face mask.
  • Bring your own beverages.
  • Do not touch equipment belonging to the airline, such as blankets.
  • Get up and walk every half hour or so.

Keeping Fit

  • Wear a fitness tracker.
  • Go walking.
  • Attend water exercise class.
  • Practice yoga.
  • Consider working with a trainer.

Practicing Good Hygiene

  • Wash your hands frequently.
  • Keep hand sanitizer with you at all times.
  • Carry along a face mask to use if you feel the need.
  • Maintain general cleanliness personally and in your home.
  • Clean hands after touching money or other items many members of the public may have handled.

Managing Your Interactions

  • Avoid sick people, school children and those who’ve traveled abroad recently.
  • Encourage your family members, coworkers and others with whom you associate regularly to cover coughs or sneezes.
  • Stay away from crowds. Consider, for example, going to the 1 p.m. matinee movie instead of the evening showing.
  • Stay in a transplant patient lodging facility when traveling for transplant-related care.
  • If you have workers in your home, use disinfectant aerosol or wipes on all surfaces after they leave.
  • Try some alternatives to handshakes: American Sign Language hand sign for peace, bumping elbows or simply smiling and nicely saying, “I’ve had a transplant and my doctors ask me not to shake hands.” If you really want to shake hands, follow it with hand sanitizer.

Listening to Your Body

  • Allow yourself time to heal.
  • Don’t overdo it. Consider saying “no,” even to activities you’d enjoy, to avoid exhaustion. Know it is okay to pass on some functions.
  • Take time for yourself. Stay home, relax and take it easy.
  • Ease up on physical activities for a while.
  • Treat yourself to a nap — doze on the couch while “watching” TV.
  • Return to your hobbies as you feel interest and ability, or perhaps pursue new ones.
  • Consider whether your career is appropriate to your recovery, especially if it’s very demanding. Think about whether it might be helpful to make some changes or even retire.

Dining Out

  • Request special treatment of your food at a restaurant.
  • Set eating utensils on an extra napkin to avoid leaving them on the table.
  • Avoid eating foods that have dropped on the table or that you observe a server touching inadvertently.
  • Look out for food bits on the edge of your plate, as this may indicate where the chef touched the eating surface.
  • Drink your beverage from a straw to dispel any doubts about the cleanliness of the glasses, or take along your own water bottle.
  • Choose restaurants that have menus or menu sections for various restrictive diets.
  • Use hand sanitizer after handling a menu, condiment bottles or salt and pepper.
  • At a buffet table or salad bar, only eat food where you can observe food safety measures. Limit food you take to only those served steaming, frozen or commercially prepared, such as individually-wrapped items. Alternatively, consider reducing your visits to buffets or salad bars.
  • If you are concerned about eating food in a certain environment, eat something before you go, take your own food along or try drinking coffee instead.
  • If you are eating out at someone’s home, explain to the hosts beforehand that you have special diet needs.

We hope these hacks, which patients in the discussion group have found helpful, will be useful for you following your transplant. At the same time, however, please be sure to consult your own transplant care team if you have any questions about which tips and tricks are right for your situation.

What post-transplant hacks have worked for you?

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Tue, Aug 22 8:16am · Meet the Expert: Raymond Heilman, M.D.

2017-08-14 Heilman Blog Post

Dr. Heilman climbs a glacier in Alaska

As a college student, Raymond Heilman, M.D., nephrologist at Mayo Clinic’s campus in Arizona, started down the path to be a professional chemist, until a philosophy professor his junior year stopped him in his tracks.

“You don’t want to go to grad school in chemistry,” the professor remarked. “Think about something else.”

A resulting re-evaluation of his future led Dr. Heilman to medical school. During his time there, he considered different medical specialty areas for a couple years till a nephrologist he worked alongside in one of his rotations sparked his interest in internal medicine. Dr. Heilman went on to pursue training in internal medicine, which further honed his particular interests.

“At the end of my training, I was really in love with nephrology,” he says. “It’s a discipline where you can use chemistry.”

After residency, Dr. Heilman pursued a fellowship at Mayo Clinic’s campus in Rochester, where he met dynamic people who spurred on his pursuits. Most notably, Jorge Velosa, M.D., an emeritus nephrologist there, significantly influenced Dr. Heilman both clinically and scientifically.

Now, as a nephrologist at Mayo Clinic’s campus in Arizona, Dr. Heilman’s special interest in patient care includes all aspects of kidney transplant. His research focuses on post-transplant infection, complications and long-term outcomes for kidney transplant patients. In addition, he and colleagues are investigating techniques and innovations for increasing utilization of deceased donor kidneys, some of which are described for medical professionals here.

“There’s a tremendous shortage of organs: almost 100,000 are waiting, and 17,000 transplants are done per year,” he notes. “Certain groups of organs are not being used from deceased donors due to perceived risk. Our group is looking closely into these ‘risky’ organs and finding some of those thought not to be able to be utilized are actually useful for transplant.”

Dr. Heilman also is researching new tools to improve immunosuppression therapy for kidney transplant recipients.

An average day for Dr. Heilman primarily involves patient care: seeing patients before transplant to prepare them and counsel them on their risks, or taking care of kidney transplant patients right out of the hospital, adjusting for immunosuppression as well as any complications. He also serves on the hospital inpatient service 25 percent of his time.

Dr. Heilman indicates he is able to form long-term bonds with his patients, as he follows them for many years post-transplant, along with their community providers.

Three key aspects of kidney transplant care particularly motivate Dr. Heilman in his work, he explains. He is excited about the immunology of transplant and how to use medications to convince a person’s immune system not to reject a foreign organ. Beyond this scientific interest, Dr. Heilman indicates there is a strong interpersonal motivator for kidney transplant medicine.

“What thrills me about transplant is how excited patients are,” he says. “You can have an incredible impact on patients’ quality of life, and not only for the patient, but for the whole family. People are so grateful. It’s extremely rewarding, because they really are appreciative.”

Dr. Heilman also points to the impetus of being part of a close team working with kidney transplant patients.

“Teamwork is absolutely critical in transplant—maybe more than in anything else I’ve done,” he says. “It’s also why I like Mayo Clinic—the teamwork, the collegiality and the primary focus on the needs of the patient.”

In his interactions with work colleagues, Dr. Heilman notes that others often make fun of him for being a neat freak and leaving his desk spick-and-span.

“I’m just neurotic and don’t deal well with clutter,” he says, smiling through his words.

Significant administrative roles also comprise Dr. Heilman’s time at Mayo Clinic. He not only serves as chair of the Division of Nephrology, but he also provides leadership to the entire Mayo Clinic campus in Arizona as a member of the Executive Operations Team, to which he was appointed in 2014. In addition, he is the founding medical director, dating to 1999, for the kidney transplant program at Mayo Clinic’s Arizona campus.

In his time beyond the workday, his hobbies, or “way of getting steam off,” include mountain biking and skiing. Family life is also fundamental for Dr. Heilman, and he and his wife, Carie, have been married for 38 years.

Overall, Dr. Heilman feels very fortunate to be involved with kidney transplant patients and research to improve their lives in his work at Mayo Clinic’s Arizona campus.

“I feel lucky and blessed to be coming to work,” he notes. “It’s lucky to be coming to work and it not really feeling like work. Ninety percent of the time, it doesn’t really feel like work.”

Have you met Dr. Heilman?

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Tue, Aug 15 8:18am · Meet Richard: Liver Transplant Gives Jacksonville Man New Hope, Twice

Meet Richard. Richard’s path to transplantation began when he started experiencing problems related to hepatitis C. When Richard’s liver became too damaged to function, he was placed on the organ donation waiting list and moved from his home in Maine to Jacksonville to increase his odds of receiving a liver more quickly.

In Jacksonville, Richard became a Mayo Clinic patient and received his first gift of life in 2007. But that’s only half of the story. Read about Richard’s journey to a second transplant, and how he’s doing today.

Read Richard’s full story.

ParkerRichard1080

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Tue, Aug 8 9:56am · Transplant Resource: Using the Scientific Registry of Transplant Recipients

Your journey to organ transplantation will include many important decisions, including where to receive your transplant care. The Scientific Registry of Transplant Recipients (SRTR) is a critical resource that can empower your research into the various transplant centers that perform the type of transplant you need.2017-07-28 SRTR Blog post Here are five things to know about using SRTR:

1. SRTR provides statistical analysis to the Organ Procurement and Transplantation Network, and Department of Health and Human Service. The purpose of their reporting is to evaluate organ allocation and other OPTN policies, and assist in policy, performance metrics, economic analysis and preparation of special reports to Congress. SRTR data is publicly available and for anyone to use, including you.

2.  SRTR data is released twice a year, in January and July. Program Summary Reports (PSR) are available on every transplant center in the United States. PSRs provide three main sections: program summary, waiting list information and transplant information. Don’t be overwhelmed by all the information the PSR contains. The key is to becoming savvy with what to look for.

3.  The first key is to take notice of the PSR user guide and table of contents, which take up the first few pages of the report. The user guide will orient you to everything the report contains and the table of contents will tell you how to get there.

4.  As you research a specific transplant center, look for their transplant rate. This 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 number of transplants per 100 patients listed per year. So a value of 20 means would mean for 100 patients listed for one year at this program, on the average 20 would be transplanted. As an example, we can look at the July 2017 kidney transplant PSR for Mayo Clinic’s campus in Rochester. On page 5, we see the transplant rate is 33.0 which is statistically better than the expected rate of 19.1.

5.  Two other data points to look at are patient and graft survival. Patient survival is a measure of the likelihood that a patient will be alive at a certain time post-transplant. Graft survival is similar, but reports the likelihood that a patient will be alive with a functioning transplanted organ at a certain time post-transplant. We can look at the July 2017 liver transplant PSR for Mayo Clinic’s campus in Jacksonville as an example. On page 24, we see that 94.03% of patients are alive with a functioning graft one year after receiving a liver transplant. It’s important to look at the number below that, “Expected probability of surviving with a functioning graft at 1 year” because it takes into account the unique characteristics of that center’s transplant patients. You can see the expected survival rate with a functioning graft was 91.09%, so this transplant center performed well above the expected outcome. In fact, this outcome puts the liver transplant program at Mayo Clinic’s campus in Jacksonville in the top 4% of programs in the country.

There are countless other insights you can pull from SRTR PSR reports. We encourage you to explore!

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Tue, Aug 1 9:30am · Post-Transplant Mental Health & Well-being: Q&A with Shelia Jowsey-Gregoire, M.D.

Receiving an organ transplant is a major, life-changing event. Often we think of the physical changes patients experience after transplant. Patients slowly go from being sick to being well again; they’re adjusting to new medications; routines they previously required to stay alive may no longer be needed. But transplant patients also undergo significant emotional and psychological transitions following transplant. To better understand what transplant patients can expect, we spoke with Shelia Jowsey-Gregoire, M.D., psychiatrist in the transplant center at Mayo Clinic’s campus in Rochester, Minnesota. Here’s our Q&A.

Jowsey Gregiore

What can transplant patients expect to experience emotionally following their transplant?

Transplant patients can experience a variety of emotions following their transplant. Often there is an immediate feeling of relief that the transplant is over. Despite the fact they are recovering from a major surgery, many patients notice a change in their physical well-being right away, which impacts their identity. They go from someone who was sick, debilitated and frail, to someone with increasing strength and vitality.

One thing we watch for is any changes to sleep or mood as a result of new immunosuppressive therapy. If there are any negative side effects, we work to address those right away.

What are some tools you recommend to patients as they adjust to life after transplant?

My favorite tool to recommend to patients was developed by Dennis S. Charney, M.D., and Steven M. Southwick, M.D., and published in the book Resilience: The Science of Mastering Life’s Greatest Challenges. The two studied what it takes for people to cope well with stress, and determined there are 10 behaviors that generally help. They are:

  1. Positive attitude
  2. Having a resilient role model
  3. Establishing a support network
  4. Embracing a moral compass
  5. Facing fears
  6. Problem solving
  7. Helping others
  8. Having a sense of humor
  9. Being flexible
  10. Attending to physical well-being

The reason I like this tool is because it’s free. There’s no copay, no side effects. These behaviors can be done anytime, anywhere.

Mayo Clinic did research a few years ago on the impact optimism had on heart transplant patients. If people reported themselves to be optimistic pre-transplant, they had better quality of life following transplant than the patients who identified themselves as pessimists did. Our findings were published in the medical journal, Progress in Transplantation. It’s important we don’t underestimate the impact our mind can have in physical healing.

Another tool I’d recommend is walking. Walking reduces stress – the brain actually grows in response to exercise! Taking a walk outside helps us put our worries aside and be in the present moment in a peaceful and calm way.

Caregivers can and should use these tools too.

What type of support can patients seek from others?

Patients often worry about being a burden to others, and it’s important they let that worry go. As human beings, we’re designed to help each other out, so that we can be strong enough to help others in the future. This is a time when it’s okay to accept help from other people.

Let others help with the practicalities of life, it’s important you don’t overextend yourself too soon. Perhaps a family member who is good with computers can maintain a CaringBridge website about your recovery so you don’t have to take calls from everyone. Try keeping a list of things you need help with so when people offer a hand, you have something for them to do. And of course, be sure to find a caregiver or caregivers to join you at appointments, keep track of medications and information.

Are there any new routines you’d recommend patients adopt post-transplant to help maintain positive mental health and well-being?

I think giving back to the transplant community can have a really positive effect on patients. Perhaps this means supporting the national effort to gain organ donors, or giving your time, creativity or financial support to an organization that helped you. Look for volunteer opportunities with your local organ procurement organization, transplant house, or at a national foundation like the American Heart Association or National Kidney Foundation.

Another new routine patients can adopt is honoring their donor each year on their “transplantiversary.” This is a special time to reflect on the gift you’ve been given. Perhaps write a letter to your donor’s family if they are open to having contact with you, or share your story with transplant patients who are waiting for their gift of life.

What other advice would you share?

There is often an unspoken guilt that patients feel after receiving their transplant. It’s important to free yourself from this guilt. Your organ donor didn’t die so you could have life, they died because that is the circle of life – we will all die. Your donor was just generous enough to give life through this process.

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Tue, Jul 25 1:20pm · Getting Listed for Transplant

A key step in your journey to transplantation is getting listed for transplant. If you’re wondering how to begin, we’re here to help!

2017-07-07 Getting Listed

When a transplant candidate has been evaluated and approved for transplant, they’re added to the national waiting list managed by the United Network for Organ Sharing (UNOS). As donors are identified, they are run through UNOS’ national computer matching system to identify a recipient that matches their unique characteristics. Once you’re officially listed, you can be considered for a deceased donor organ that comes available, provided it matches with you and your need. The computer system will categorize your listing based on many variables including your blood type, size, and current medical condition.

There are several steps to being placed on the UNOS transplant waiting list:

First you’ll have a transplant evaluation at a transplant center

This evaluation will likely include several days of testing and consultation with various transplant professionals. Each person on the team will consult with you and determine if you’re a suitable candidate for transplant.

Some patients think they’re automatically listed once their transplant evaluation is complete, but that’s not the case. While the evaluation is a major milestone in the process of getting listed, there are two more important steps.

The transplant team meets to discuss your case

Each member of the multidisciplinary transplant team presents their findings about your evaluation. Once your medical information is reviewed by the multidisciplinary team, a consensus is given to either place you on the list, to defer your listing pending more information, or deny you for transplant. A defer or deny outcome needs to be discussed with your care team. There could be alternative treatments for you other than transplant, or your care team might need more information before they are able to decide when you should be listed.

If approved for listing, you’ll be added to the UNOS database

Once you have been approved for listing, a member of the team, an RN Care Coordinator if you’re being treated at Mayo Clinic, will add your information to the UNOS national database. Your hospital will send you a registered letter in the mail to let you know you have been listed and the RN Care Coordinator may notify you via telephone, as well. Once you receive this letter, it’s official – you are LISTED for transplant.

Your listing process is regulated by UNOS. Any hospital where your evaluation takes place needs to follow the steps above to get you properly listed on the transplant waiting list. Understanding these steps can help alleviate concerns or questions you might have about being listed for transplant and begin your waiting time for that lifesaving organ. If you have questions about this process or when you will be listed, contact your transplant center.

Are you currently listed for transplant? What surprised you about the process?

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