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2 days ago · Meet Remy: In Need of a Second Transplant, Remy Marceau Fights On

There are nearly 100,000 people in the United States waiting for a kidney transplant. Remy Marceau is one of them, with a wait he’s had to endure twice as his body now rejects the kidney it received four years ago from a living donor. The rejection stunned family, friends and Remy’s donor.

Learn how Remy is remaining focused on the future, using positivity and humor to carry on.

Read Remy’s full story.

MarceauRemy805

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

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Tue, Nov 14 8:40am · The MELD Score: Definitions and Frequently Asked Questions

If you’re a liver transplant patient, you’ve likely heard your doctors talk about your MELD score. Having a strong understanding of your MELD score and how it’s calculated is important because it often influences how long you’ll wait for your liver transplant. We’ve put together this blog post to help answer the most frequently asked questions about the MELD score.

What is the MELD score?

MELD is an acronym for model for end-stage liver disease, and MELD score is the score provided to patients based on how urgently they need a liver transplant in the next three months. It’s used by hospitals and the government to prioritize allocation of deceased donor livers for transplant. The MELD score can range from 6 (less ill) to 40 (gravely ill). The same MELD score definition and calculation are used by all transplant centers in the U.S.

Why is the MELD score needed?

As of today, there are over 14,000 people waiting for a liver transplant, and there are not enough deceased donor livers to meet that need. The MELD score was put into place so the sickest patients get the first livers available. The MELD score helps hospitals maintain fair lists across the nation so the livers that become available can go to those patients with the most urgent need.

How is my MELD score calculated? 2017-11-13 MELD Score Calculator

Since your health condition can change frequently, your doctor will send you to the lab for updated blood work routinely, so they can assess your condition often. The results of your blood work are used to calculate your score for the waiting list. When your updated blood work is delivered to your doctor, the transplant team will calculate your MELD score using an online calculator and submit the changes to UNOS directly. You may have several changes to your score during your time on the wait list. Your care team will notify you of any major changes to your list status.

Your MELD score is calculated using four blood test results — bilirubin, serum sodium, INR and serum creatinine. These results are entered into a mathematical formula using the UNOS MELD score calculator. In some cases there may be special circumstances such as certain liver cancers that are not taken into account during your score calculation. In case of a medical condition that is not covered by the MELD score, if your care team believes your case qualifies for an exception, they can submit information to a review board and request a higher score. These exceptions rarely happen, but in some cases, the review board will grant a higher score.

I’m at the top of the list. Will I get the next liver?

Your position on the waiting list can change quickly, and your care team keeps close track of these numbers and will let you know when you are near the top of the list. Remember, not every liver goes to the first person on the waiting list. Liver allocation is a complex process, and MELD score is just one of the variables doctors use to determine who receives the next available liver.

In the case of living donor liver transplant, your medical team may still calculate a MELD score and place you on the transplant waiting list, but the time of your transplant will be determined by your doctors, not by your score on the waiting list.

Most transplant patients follow their MELD scores and have a general idea of where they stand on the waiting list. If you’d like more information about your score and position on the list, speak to your transplant team.

When you made it to the top of the list, what was your reaction to knowing that the next organ might be yours?

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Tue, Nov 7 8:15am · Meet Yasmin: A Sudden Detour for Heart Transplant, Then Back in Stride

Life dramatically changed for Yasmin in early 2016. The county prosecutor, marathon runner, exercise enthusiast, world-traveler and mentor to middle-school girls from St. Paul experienced shortness of breath just one mile into a 10 mile run. She didn’t know what was happening.

Yasmin’s local physicians were stumped, too. After several doctor and hospital visits, and a trip to the emergency room, a friend urged Yasmin to get an appointment at Mayo Clinic’s campus in Rochester. Tests confirmed her local physicians’ diagnosis of viral myocarditis, and also found that Yasmin had dilated cardiomyopathy. Yasmin needed a heart transplant – fast.

To increase the odds of receiving a heart transplant quickly, Yasmin’s care team transferred her to Mayo Clinic’s campus in Phoenix, where her wait lasted less than one week.

Today Yasmin is back to her fast paced life of working full time, running and traveling.

Read Yasmin’s full story.

2017-07-27 Meet Yasmin Blog

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Tue, Oct 31 11:50am · Eligibility for Liver or Kidney Transplant

Many people are asking questions and surfing the internet to see if they are eligible for organ transplant. We hope this post will answer some of those questions for you as a potential transplant candidate.

Right now more than 115,000 people are waiting for an organ transplant, and every 10 minutes someone new is added to the waiting list. Unfortunately, there are not enough organs donated each year to transplant everyone waiting, so transplant centers have an obligation to use these precious available organs in the most responsible way possible. Most centers have criteria to evaluate each potential candidate to be sure their transplant is safe and successful.

The majority of patients who complete a full evaluation at a transplant center become candidates for transplant, yet not everyone who needs an organ is placed on the national waiting list. You can read more about what it means to be listed in our previous blog post. There are several factors that the care team considers when determining if patients are eligible for transplant. As patients, some of these factors we can control and some we can’t, but all are important in assuring you a quality outcome after transplant.2017-09-14 Eligbility Blog Post

Age 

There is no official age cutoff for transplant. At Mayo Clinic, we have successfully transplanted some patients in their 70s, but age can play a factor in being approved by your transplant center. As we age, our bodies become frail, and we often experience more medical issues. Transplant centers evaluate patients for their degree of frailty and their potential to recover well and improve their quality of life after transplant. If you are an older patient, you may need more extensive testing to determine if transplant is right for you.

Major Medical Conditions 

During your transplant evaluation, all of your body systems will be evaluated. Doctors choose patients for transplant who have no heart or lung issues, no active cancers (outside of the liver or kidney), and no other major health conditions, because the immunosuppressive drugs you take to suppress your immune system could cause other medical conditions to worsen.

Social Support 

During your transplant evaluation, you will meet with a social worker to help you understand the support system needed for transplant. They will explain to you why it is important to have one or more caregivers who can be with you throughout the transplant process. Having friends and family around to help you before and after transplant is critical to your success. A caregiver is usually required to be listed on the waiting list.

Substance Abuse

If you have issues with substance abuse, to be eligible for transplant your care team will likely ask you to stop substance use such as cigarettes and alcohol. Even if your care team doesn’t ask you to quit smoking, your recovery and time in the hospital could be far more pleasant if you do. If you are looking at a transplant down the road, consider quitting any substance use prior to your evaluation.

Financial Support

If you are undergoing evaluation for transplant, it is important to understand your insurance coverage and your financial situation. Time away from home and work can be expensive, and insurance doesn’t always cover everything we need. If you are being considered for transplant, your care team wants to be sure you have the resources to cover the medications and care post-transplant to ensure you don’t encounter financial hardship.

These are just a few topics to consider when researching your eligibility for transplant surgery. If you are in need of a transplant, be sure to connect with a transplant center for more information about their requirements and processes.

Have you had your transplant evaluation? What were some criteria you had to meet in order to be listed for transplant?

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Tue, Oct 24 1:55pm · Safeguard Your Health This Flu Season

2017-10-24 Flu shot blogIf you’re like many people, your “to do” list is growing longer and longer now that the warm months are behind us. Maybe your list involves packing away the beach supplies, pulling out your warmer clothes, or doing yard work to prepare for that dreaded white stuff. Does your list of to dos also include getting a flu shot?

The Centers for Disease Control and Prevention (CDC) recommends that everyone 6 months of age or older be vaccinated annually against influenza. Mayo Clinic recommends annual influenza vaccination to all transplant candidates, transplant recipients, their caregivers and other close contacts. As a transplant patient, you should not receive the FluMist, nor should any of your caregivers or close contacts. The FluMist is a live virus vaccine and could cause you to become ill. The flu mist has also officially been determined to be less effective than the vaccine for the 2017-18 flu season. Although not 100% effective, getting a flu shot is worth the needle stick. Flu shots are the most effective way to prevent influenza and its complications.

If you are a transplant patient at another facility, contact your care team to ask about their recommendations for the flu season.

What you can do

In addition to getting your flu shot, remember to practice good hygiene as another safeguard against flu season.

  • Wash your hands often and thoroughly with soap and water
  • Use an alcohol-based sanitizer on your hands if soap and water aren’t available
  • Avoid touching your eyes, nose or mouth whenever possible
  • Avoid crowds when the flu is most prevalent in your area
  • Get plenty of sleep, exercise regularly, drink plenty of fluids, eat a nutritious diet, and manage your stress

Do you get your flu shot every year? Tell us about your experience.

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Tue, Oct 17 9:05am · Weight Gain After Transplant: Where Does it Come From and How to Get Rid of It

Many factors can contribute to unwanted weight gain after your transplant. However, carrying around excess weight is unhealthy for post-transplant patients: it can hinder your recovery following surgery by slowing down healing, and it also may put you at higher risk for diseases or complications that stem from being overweight, such as diabetes, heart disease, hypertension, non-alcoholic fatty liver disease or even certain cancers.

07-14-17 weight loss post-transplant resized

“Unwanted or unneeded weight gain is common, though the reasons why and amounts vary based on the organ transplanted,” says Heather Bamlet, RDN, LD, transplant clinical dietitian at Mayo Clinic’s campus in Rochester, Minn. “I think based on the numbers, it is safe to say many transplant patients gain between 10-20 pounds—but this does not have to happen. If it does occur, patients can successfully lose weight, if they are committed.”

Causes of Weight Gain

Here are some factors that may contribute to putting on pounds following transplant:

  • Reducing activity level due to recovery or feeling afraid of hurting the new organ
  • Not needing as many calories with a healthier body that works more efficiently post-transplant
  • Experiencing medication side effects, such as fluid retention or decreased metabolic rate
  • Seeing an increased appetite after surgery due to overall feeling better
  • Rewarding yourself with foods that were restricted before surgery, such as ice cream
  • Choosing more fattening “comfort foods” to make yourself feel better as you heal from transplant
  • Experiencing more opportunities for overeating as you become more social again, such as eating out, celebration events and traveling
  • Exceeding your weight-gain goal if you’ve been advised to put on weight due to losing too much weight pretransplant

Typical Weight Gain Patterns

Here Heather shares with us common patient experiences as well as the numbers for weight gain, by transplant type:

Heart: Weight gain often occurs after heart transplant, which is likely due to feeling better and a less restricted diet. A small, retrospective study on 200 heart transplant patients showed recipients had gained an average of 22.7 pounds one year out from transplant.

Kidney: A small study including 35 post-kidney transplant patients showed that more than half, or 19 of 35 of the study participants, gained weight following kidney transplant, while the others maintained or lost weight after transplant. For those who gained weight, the average increase was 19.58 pounds. Those who ate more fruits and vegetables, however, tended to experience less weight gain. Another study showed average weight gain of about 9 percent three years post-transplant.

Liver: Though liver transplant patients are likely to see some weight loss initially, weight gains can start around four months after surgery. Patients are told to eat to help with the healing process, and some even need to gain weight and muscle mass lost prior to transplant. Often they feel so much better post-transplant, however, with food tasting good and appetite increasing, that they put on pounds. One study showed a median weight gain of 11.24 pounds at one year after liver transplant and a 20.94-pound weight increase three years after transplant.

Lung: This patient group tends to be more diverse in terms of weight gains and losses. Some may have lost significant weight and muscle mass before transplant, and so their providers encourage regaining these after surgery. Others gain weight due to changes in activity levels. In the longer term following lung transplant, some patients see weight increase, while others see muscle mass losses due to steroid use. Researchers found the median weight change after transplant was 10 percent.

How to Lose Post-Transplant Weight

Do transplant patients have a unique situation for weight loss? Yes and no, Heather says. Though their circumstances surrounding weight gain may be distinct, the basics of weight loss are similar to others needing to lose excess pounds.

“Our transplant patients have been through a lot—and likely a dramatic life change after surgery and recovery,” Heather says. “However, when you break it down, if someone is gaining weight, they have reached a point where too many calories are going in and not enough calories are being burned off.”

Regardless of your transplant type and how you may have gained weight after it, here are some tips on how to see the scale go down:

Cooking and Meal Planning

  1. Plan meals ahead of time.
  2. When designing a meal, follow the MyPlate method.
  3. Use cooking methods that will keep the foods out of reach for snacking, such as a slow cooker.

Eating

  1. Be aware of your portion sizes.
  2. Eat more fruits and vegetables.
  3. Choose whole grains, lean meats and low-fat dairy products most often.
  4. Keep treats like cake, candy, cookies, chips or soda to a minimum.
  5. If still hungry after meals using the MyPlate method, reach for more fruits and vegetables.
  6. Make sure you are drinking enough noncaloric fluids.

Exercise

  1. Get active. Aim for at least 150 minutes of exercise weekly. It is better to split this up and do at least 20 minutes most days of the week.
  2. Do weight training. Add this in to boost your muscle mass after your surgeon clears you to do so, since muscle burns more calories at rest than fat does.

Accountability, or having someone to whom you report your weight loss progress, is also an important component of success.

An ideal body mass index target is 18.5-24.9, though Heather points out Mayo Clinic dietitians look at each patient individually and may aim for a different goal based on each patient’s history, muscle mass and strength, as well as personal goals.

“Definitely we are targeting a BMI less than 35, preferably less than 30,” she says. “I tell people to figure out their calorie needs based on age, weight, gender and activity levels—your dietitian can help you—and to stick with it. You can track your food intake using an app or online program.”

What to Expect from Your Weight Loss

As a rule of thumb, losing 1-2 pounds per week is a realistic expectation, Heather says, pointing out that faster weight loss leads to more muscle mass losses and is likely not sustainable over the long term.

“The key to weight loss is making lifelong lifestyle changes with regard to food and physical activity,” she says. “Diets don’t work, as people do them for a short time and then return to their old patterns.”

It’s also important to keep in mind that each transplant—the organ and the recipient—is different, and that what works for one person’s weight loss might not work for another, Heather explains. She feels strongly, though, that all patients are capable of losing weight after transplant, especially if they make SMART goals and a solid promise to themselves to make changes.

“With commitment to goals, transplant recipients can reach them,” she says.

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Wed, Oct 11 7:40am · Meet the Expert: Jeff Welch, M.S.W., L.M.S.W.

Jeff Welch, M.S.W., L.M.S.W, living donor transplant social worker and one of the pioneers of the Hispanic Transplant Program at Mayo Clinic’s Arizona campus, has always been known to care for people, animals and even insects.

“If I see a bug, I’ll scream,” his wife says. “Jeff, on the other hand, will catch it and take it outside rather than killing it. If it’s a bug that’s scary looking, Jeff will even go to the effort to drive it away from the house.”

“Of course, there are always exceptions,” Jeff jokes.2017-09-14 Meet Jeff Welsh

Jeff’s caring nature, along with a tapestry of other life, career and educational experiences, have interwoven to make his position ideally-suited for him.

He explains, however, that “it wasn’t a direct path” to his social work career at Mayo Clinic.

A Southwest native, Jeff completed an undergraduate degree in psychology at Northern Arizona University. During his studies, Jeff also participated in two student exchange programs, studying in New Zealand and Mexico.

Jeff spent time in the workforce after graduation, and then pursued a master’s degree in Latin American Studies at University of New Mexico. Following his master’s program, Jeff worked for a behavioral health non-profit trying to keep kids off drugs and alcohol in the Maryvale area of central Phoenix. Among other strategies, he and colleagues worked with the local community to put together cultural programs such as an alcohol-free quinceañera, or Latin American 15th birthday celebration for girls. In this setting, Jeff received guidance from a professional social worker, his supervisor, and was inspired.

“After four years of working at the non-profit, I really felt like social work was the direction I wanted to go,” he says. “The alcohol-free quinceañera was one of my first projects where I really was involved in the Hispanic community.”

That supervisor, who held a doctorate in social work, served as a model and ultimately a catalyst for Jeff to go back to school again and complete dual master’s degrees in social work and public administration at Arizona State University. After finishing these degrees, he spent the next four years serving as a medical social worker in Arizona hospitals.

Though Jeff grew up an English-speaker, he gradually built the Spanish language abilities he now uses regularly in his social work position at Mayo Clinic.

“I knew maybe 20 words when I went to Mexico as an exchange student, and after nine months I came back at a conversational level in Spanish,” he said. “The most valuable part of my undergraduate education was learning Spanish.”

While in Mexico, Jeff went to language school for three months and then spent additional months immersing himself with the Mexican community and making friends. During his master’s studies, Jeff took Spanish classes, and then he met and married his wife, who is from Peru, which further boosted his language learning.

Jeff started in social work at Mayo Clinic’s Arizona campus in May 2016, working exclusively in outpatient transplant care. He serves in the living donor program for kidney and liver transplantation. Since its January 2017 launch, Jeff also has been doing outreach with the Mayo Clinic Hispanic Transplant Program, a role anticipated since his hire.

When Jeff is on the Mayo Clinic campus in Phoenix, his days involve conducting initial psychosocial evaluations for liver or kidney living donors, and then following them before and after their surgeries. He tends to practical and emotional needs for these patients before and after surgery, such as coordinating travel, lodging, meals or financial help from outside organizations or arranging for counseling for anxiety and depression. He visits living donors in the hospital on their first postoperative days, congratulating them, making sure they are ready for recovery and offering help with any needs or concerns.

On two days per week from 8 a.m. to noon, Jeff drives to other Arizona locales to hold “Lobby Days” at dialysis clinics identified for high Hispanic patient population and interest in coordinating with the Mayo Clinic program. On these days, he sets up a table in a lobby or other visible area in the clinic where he can talk to patients in English or Spanish about kidney transplant. He’s visited clinics in Gila River, Casa Grande and other communities in Arizona. In the future, Jeff hopes to spend more time at these clinics as well as extend the outreach to New Mexico.

“I try and meet them where they are at in the community, reducing barriers they may have to transplantation and trying to increase the number of Hispanic living donors from their family, friends or social networks,” Jeff says. “I ask them if they have thought about transplant and talk to them about being evaluated, surgery and the recovery period. We also talk about living donation.”

Jeff also helps Hispanic patients and families he meets at the clinics dispel any misunderstandings about transplant that may have arisen due to language barriers or insufficient information, such as what it means to be on a wait list for an organ, where they can go for a transplant and any misconceptions about age or future fertility for living donors. For those interested, he helps to initiate a referral for an evaluation at Mayo Clinic, working with the patient’s nephrologist.

Twice monthly, Jeff and colleagues provide the Hispanic Transplant Program at Mayo Clinic’s Arizona campus for Hispanic patients and families interested in kidney transplantation and living donation. At these sessions, Spanish-speaking transplant providers provide education and information, as well as emphasize cultural concerns that Hispanic patients may have in pursuit of kidney transplant, myths about transplantation, and expectations about life as a kidney transplant recipient or living donor. The program also includes a one-hour caregiver education program in Spanish to let patients’ caregivers know what is expected of them and provide critical information for this role.

Some of the patients who participate in the Mayo Clinic Hispanic Transplant Program come in through Jeff’s outreach, he notes, and others hear about the program through their doctors or their dialysis social workers.

One aspect of his job Jeff really enjoys is getting to know the patients, assessing where they are emotionally and what practical needs they may have, in addition to presenting possibilities for living donation.

“There is a lot of job satisfaction in meeting someone and having the resources and ability to help them get to a better point in their life or help them achieve what they are trying to achieve, whether it be donating an organ or receiving an organ,” he says. “I know I’m just one member on the team, but it’s an important role we have in social work to make sure that each patient is in the right place to be a donor, or if they are trying to receive an organ, that they have everything they need for a successful surgery and recovery.”

Jeff also is thrilled to be able to use the language skills he’s worked so hard to learn and work with patients who are part of the Hispanic culture, to which he’s been drawn for many years.

“The fact that I’m able to continue using my Spanish in this workplace setting, is wonderful — I love it,” he says. “It just encompasses the complete job role for who I am. It’s exciting to me to offer the services we have here at Mayo Clinic to the Hispanic population, speaking to them in Spanish — their own language.”

Jeff also really enjoys working with family members of patients, noting that for those participating in the Hispanic Transplant Program meetings, knowing the language is critical to building relationships and trust.

“When patients come in and receive their initial education in Spanish, it really is powerful for that patient and their family and it helps them buy in to the transplant evaluation process and builds their own enthusiasm for the potential of receiving that organ,” he says. “It also gives the family members education on whether they can be a living donor.”

When Jeff is not at work, he and his wife enjoy spending time with their children, ages 9 and 3, going to the pool or taking weekend trips to places like Rocky Point, a beach town over the Mexican border on the Sea of Cortez, or to the southern California coast. He enjoys spending time outdoors, such as hiking, camping and time near the water, noting that he and his wife hope to involve their kids in more outdoor activities as they grow older.

Whether with family or with patients, caring and concern for others are high priorities for Jeff. It seems his wife’s description of his insect nurturing is indeed quintessential Jeff.

Have you met Jeff Welch yet?

 

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Tue, Oct 3 1:30pm · Meet Matt: ‘You Never Think About a Living Donor Until Someone You Love Needs One’

Jairus “Matt” Pierce’s journey to transplantation began at age 13 following a diagnosis of kidney disease. By age 44, the disease had become debilitating. Matt was receiving daily dialysis and forced to take a light-duty assignment in his job as a shirt commander for the Gila River Fire Department in Arizona. The only long-term solution was a life-saving kidney transplant.

A local news station covered Matt’s story, which was seen by Nicole Bayne, an accountant from Phoenix. Nicole wanted to help. She contacted Mayo Clinic’s campus in Phoenix, where Matt was being treated, and asked to be tested to be a living kidney donor. She figured if she could save one firefighter, Matt, in turn could save many more lives.

Learn how Nicole was the ultimate hero Matt had been waiting for.

Read Matt’s full story.

2017-07-27 Meet Matt Blog

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