Coping with anxiety after transplant

Posted November 8th, 2018 by Be The Match and filed in Patient Stories
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Have you worried about the future? Felt anxious waiting for biopsy results? Or had persistent thoughts about graft-versus-host disease (GVHD)? You’re not alone. Sometimes anxiety is helpful. For example, a little bit of worry about infection after transplant can be a reminder to wash your hands. But too much worry about infection can slow your recovery if it limits your normal daily activities.

Symptoms of anxiety can include:

  • Difficulty falling or staying asleep
  • Dizziness
  • Feeling so restless you can’t sit
  • Irritability
  • Muscle tension
  • Nervousness
  • Trouble concentrating
  • Upset stomach

 

Explore different ways to manage anxiety to find what works best for you

There are several ways to help manage anxiety. Sometimes anti-anxiety medicines can help. There are many other types of interventions, coping mechanisms and resources that can help you as well. For example, you could:

  • Go for a walk.
  • Meditate.
  • Do short breathing or relaxation exercises. Find some on YouTube.
  • Listen to soothing music.
  • Talk to someone you trust, or even a pet, about how you feel.
  • Get support through free Be The Match Counseling Services.

If you’re not sure how to start talking about anxiety, use these conversation starters:

  • “I haven’t been feeling like myself lately. I’m concerned my anxiety is getting out of control.”
  • “What do you recommend so I don’t feel worried all of the time?”

If you’re concerned that a loved one is struggling with anxiety, you could say, “You don’t seem like yourself. How are you feeling?”

 

One woman’s experience with anxiety after transplant

Jodi, transplant recipient

Jodi had a transplant in 2017 for myelofibrosis. She described coping with uncertainty as one of the hardest parts of recovery. “There’s constant worry and recurring thoughts of what my future will look like and whether the GVHD will ever disappear. It’s like a snowball effect,” said Jodi.

Sometimes certain events triggered higher anxiety levels. For example, she was more worried anytime she needed a bone marrow biopsy. “I was anxious for the whole week,” she said. Other times, her GVHD medicine, prednisone, heightened her anxiety.

Jodi did several things to help ease her mind, including talking with a supportive group of loved ones and practicing yoga. Having a mantra, or phrase to repeat, helped her through some of the toughest parts of recovery. “Whenever my mind starts to wander, the mantra keeps me from drifting into negative thoughts,” she said.

 

Jodi’s mantra

“I am healing.

My cells are soaring like eagles to normal.

I am getting stronger every day.

I am healing.”

 

Jodi’s advice is to talk to someone. “Communication is key. If you sit in your worries and let them grow, it’s not going to get better. Be proactive. Talk to a counselor,” she said.

For free, confidential support, contact Be The Match Counseling Services:

Ideas for expressing gratitude to your caregiver

Posted November 8th, 2018 by Be The Match and filed in Patient Stories
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The season of thankfulness may be inspiring you to express your gratitude for your caregiver. Expressing gratitude helps your caregiver feel appreciated, but it also has health benefits for you, too.

Studies show giving thanks may help you cope with life after a blood or marrow transplant (BMT). That’s because it’s closely tied to your mental health, which means you’re more likely to:

  • Cope better with everyday stress
  • Show more resiliency
  • Have a quicker recovery from an illness

Expressing gratitude can help you build stronger relationships and friendships.

 

Simple, creative ways to give thanks

When it comes to your caregiver, it may feel like saying “thank you” will never be enough. “Often, people think a thank you has to be this grand thing, when in reality it just has to be simple and from the heart,” explained Heather James, who manages communication between recipients and donors after BMT for Be The Match.

Get creative! Writing a thank you note can be very impactful, but it’s not the only way to say “thanks.” Do whatever works best for you and your caregiver. If you’d like to be more creative, “a good place to start is to think about something you both enjoy,” said Hailey Hassel, M.S.W., BMT Social Worker in our Patient Support Center.

Here are some ideas to spark your creativity:

  1. Cook a nice meal
  2. Create a playlist or piece of artwork
  3. Give a gift card to a coffee shop or favorite book store
  4. Contribute to their favorite charity in their honor
  5. Set aside time to do something you both enjoy

“Gratitude can be very helpful as you and your caregiver cope with and navigate life after transplant,” Hailey said. So consider new routines for you and your caregiver to express your thankfulness for each other even after November.

For free information and support to help you thank your caregiver:

 

Studies cited:

  1. Emmons, R. A., & Stern, R. (2013). Gratitude as a Psychotherapeutic Intervention. Journal of Clinical Psychology,69(8), 846-855. doi:10.1002/jclp.22020
  2. Lambert, N. M., Clark, M. S., Durtschi, J., Fincham, F. D., & Graham, S. M. (2010). Benefits of Expressing Gratitude. Psychological Science,21(4), 574-580. doi:10.1177/0956797610364003

Governor Dayton proclaims Sept. 21 Jason Carter Clinical Trials Program Day

Posted September 24th, 2018 by Be The Match and filed in News, Patient Stories
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To celebrate the legacy of Jason Carter, and his drive to make a difference, Governor Mark Dayton has proclaimed Sept. 21, 2018 as Jason Carter Clinical Trials Program Day.

After living with leukemia for more than four years, and participating in two clinical trials, Jason Carter passed away in May 2016 at the age of 28. Jason loved fishing, skiing the mountains of Montana, perfecting recipes and taking photos of his outdoor adventures.

To continue Jason’s legacy by helping to get more people to participate in clinical trials, the Carter family created the Jason Carter Clinical Trials Program with a generous donation to the Be The Match Foundation®, the fundraising organization that supports Be The Match®.

The program has many free and confidential services for patients and their families, including: One-on-one nurse support with assistance in finding clinical trials; an easy-to-use online clinical trial search tool; and easy-to-understand clinical trial descriptions.

Please join us in celebrating Jason Carter’s life-saving legacy.

Returning to work after transplant: Tips for success

Posted July 9th, 2018 by Be The Match and filed in News, Patient Stories
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Doctors usually suggest transplant recipients wait at least 1 year before going back to work after transplant. That’s because it can take a year or more for your immune system to recover.

When, or if, you return to work after transplant should be up to you and your doctor. You may want to return to work as soon as possible because you want to regain a part of your life before transplant. Or, maybe you need the income from a job. Whatever the reason, we have tips on how to ease yourself back into the working world.

Dealing with an “employment gap”

Because you didn’t work during your transplant recovery, your résumé will show a length of time when you were not employed. This can be difficult to discuss during a job interview.

Remember, federal law prohibits your health history from being used against you when you return to work or look for a new job. And if you’re looking for a new job, companies can’t ask about your health history and you aren’t required to tell them about it unless you choose to do so.

Still, it can be a difficult decision. Karen, a transplant recipient, has struggled with what to say during interviews. Would her story of recovery show strength and how she had overcome so many obstacles?

Karen chose to fill the gap in her employment by highlighting her volunteer work ─ and in fact put that at the top of her résumé. “There are keywords that say ‘volunteer work’,” says Karen. “It’s what I’m doing, it’s where my skills are at, and it’s my experience.”

Preparing for physical and emotional demands in the workplace

It can be physically and emotionally difficult to return to work after an extended leave after transplant.

“Work is demanding and patients often worry about whether they will be able to respond to the pace and requirements,” says Katie Schoeppner, MSW, LICSW, and Supervisor of Be The Match® Counseling Services. “Many patients describe symptoms of ‘chemo-brain’ that can affect short-term memory or make it hard to organize thoughts.”

To help manage those issues, Katie recommends “coping ahead of time” by thinking of situations or aspects of work that may be difficult and prepare for them. “For instance, come up with a plan for setting reminders (post-it notes, a calendar, an alarm) if you’re concerned about managing a lot of demands,” she says.

For Herschel, a transplant recipient who returned to his previous job, it was important to take things slowly at first. “When you return to work, you need to take your time,” he says. “You don’t have to impress anyone. Give yourself permission to take it easy, and one day, you’ll begin to see that you’re accomplishing tasks in a very real and effective way.”

Katie also has suggestions on how to tactfully deal with co-workers who may ask a lot of unwanted questions about your disease and treatment. As part of a “coping ahead” strategy, Katie recommends that you think about the kinds of questions you may be asked about your time away. “Then, come up with an ‘elevator speech’ that you can use to move quickly through those conversations,” she says.

Benefits of returning to work

For many people, work not only provides financial stability, it also gives a sense of purpose, identity and belonging.

This was especially true for Karen. At her first job after her transplant, she says that it felt so good just to get up and shower and have a place to go. “It’s a first step,” she says. “If it takes baby steps, one day at a time, get out there as soon as you can before you get seized by paralysis.”

Work provides structure to our days, plus social interaction that plays a major role in a person’s self-esteem. “It speaks to identity,” says Karen.

When work seems out of reach

Even if you want to go back to work, it’s not always easy to find the right job for you. Karen, who’s seeking work after transplant now, says “before transplant, I had a sense of pride in my work. Now, people don’t see that side of me or that my skin is covered with GVHD. They don’t know my story.”

If you’re struggling to find work after BMT, Katie recommends “seeking out volunteer and networking opportunities in their community.” They can be a great way to build up a résumé and open doors to possible employment.

Sometimes life after transplant can be an opportunity to consider a new type of work. Take stock of your relationships and values – think through what and who is most important to you now. Use that list to guide how you spend your time. “Then, consider doing some informational interviews with people in jobs that seem interesting to you,” says Katie.

For Karen, the experience of illness, treatment and recovery has changed her focus of what she wants to do. “I feel drawn to non-profit and service oriented jobs.”

Practical tips on going back to work

Our Living Now series of newsletters have additional tips on life after transplant. View or download Living Now, Issue 3 to find an article on going back to work or school on pages 6-8.

In addition, the Be The Match Patient Support Center can help you find resources and cope with job-seeking and work after transplant. Some resources include:

Coping with body image changes after transplant

Posted July 9th, 2018 by Be The Match and filed in News, Patient Stories
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There are many side effects of a blood or marrow transplant (BMT) that can impact your body image. These include hair loss, skin and muscle changes, and weight gain or loss. Some side effects, such as fatigue (feeling tired), aren’t visible, but can still affect your body image.

What is body image?

Your body image is how you see your body and how you feel about it. After transplant some people may see the changes in their body and feel embarrassed or self-conscious. Others may see the strength it took to get through treatment and feel proud of their body.

Worrying about body image can happen because of the changes to your body and because the changes remind you of the disease and treatment.

Watch for signs of body image concerns

If you don’t feel good about your body after transplant, you’re not alone. You may have body image concerns if you:

  • Are very unhappy with your physical appearance
  • Feel worried about physical changes in your body
  • Avoid social situations due to your appearance
  • Are stressed about or avoid romantic relationships due to changes in your body

If you or your loved one has any of these signs, help is available and there are ways to cope.

Talk about your body image with a trusted person

While it may not seem easy to bring up with your health care team, talking about your body image is important.

“In busy clinics, health care providers may not see your distress about body image and the impact on your life,” says D. Kathryn Tierney, Ph.D., RN, Clinical Assistant Professor from Stanford Health Care. So it’s important to tell them about any body image concerns you have. Don’t wait for them to ask. Say something like, “I know you’re focused on my physical health, but I’m really concerned about my appearance and how it’s changed since transplant. Can we talk about that?”

Many transplant centers have support groups that can help you cope with body image changes. Your social worker or nurse coordinator can help you find resources near you.

Dr. Tierney also recommends a program through the American Cancer Society called Look Good Feel Better. This free program offers resources for men, women and teens to help cope with appearance-related side effects of chemotherapy and radiation.

In the future, Dr. Tierney says researchers may “compare talk therapy to support groups or other approaches to help people regain a healthy body image.” But in the meantime, her advice is to simply talk. She says, “A discussion with your doctor, a close friend or loved one can help.” Find a trusted person and tell them how you’re feeling.

Free support is available

The Be The Match Patient Support Center can help you cope with body image changes after BMT. We offer:

  • One-on-one counseling services with licensed clinical social workers. They can help you cope with emotional concerns, including body image issues. Each session takes place weekly, by phone, for up to 8 weeks. Learn more at: org/Counseling
  • Connections with another transplant recipient or caregiver volunteer. Our trained volunteers can listen and share personal experience by phone or email. Request a connection at: Borg/PeerConnect

Just for teens

Watch “Does this transplant make me look fat?” to hear teens and young adults talk about their body image concerns after transplant. Ask your transplant center if there is a teen group or program you can join to talk with others your age about your experiences.

Ed Plass and his impact with Be The Match

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In December of 2011, at age 68, Ed underwent an unrelated cord blood transplant to treat acute myelogenous leukemia, a life-threatening blood cancer.  Transplant is a rigorous treatment that requires a lengthy hospital stay and months to years of recovery. As a survivor of this intensely difficult treatment, he has dedicated much of his life to helping others going through the same process.

Ed’s wife Kate was his primary caregiver and a huge part of his transplant and recovery. She has stood by his side throughout this journey, and has also dedicated much of her time to advocating for Be The Match® with Ed. “Our oldest grandchild was 6 years old and the youngest was just 9 months when I had my transplant,” says Ed. “I’ve been able watch them grow up and they’ve had the chance to know their grandfather as a person, not a picture.” Many of Ed’s experiences with transplant, recovery, and advocacy have been a family effort.

Ed is part of the Be The Match peer-to-peer counseling program for transplant patients, helps edit educational and support material, and was on the Leadership Council for several years, helping with legislative advocacy, donor recruitment and tabling events. He speaks to other patients who are anticipating transplant about his own experience and helps ease their fears, answer their questions and provide the kind of encouragement that only a transplant recipient can give. Kate has also spoken at these events from a caregiver perspective. He meets with social workers and other staff members to ensure that they know how best to support patients going through the same treatment that he did.

It is difficult to explain the impact that Ed makes on the patients who look to him for support, except to say that in this volunteer role he uses himself and his experience with transplant to connect with people who desperately need support.

Ed says his transplant has given him the gift of life and the gift of time. And he’s making the most of it. In addition to spending time with family, he is very active in his church and has volunteered more than 400 hours with Be The Match, connecting with patients, transplant centers and legislators. He and his wife have been very generous with financial gifts to Be The Match as well, as they understand that supporting patient assistance, recruitment and research is so important.  “After my transplant, I’m more aware of the issues which people [like me] can face, and I’m trying to give back,” Ed says.

We need more people to make an impact like Ed, and support patients like him. You could make an impact by signing up for a monthly gift. A reliable monthly gift will help more patients receive marrow transplants, expand the Be The Match Registry ®, and provide financial resources to patients and families in need Join us in our life-saving mission and give a monthly gift today.

My Sickle Cell Warrior Story: Memories of living with sickle cell disease and a life-changing decision

Posted June 19th, 2018 by Be The Match and filed in Patient Stories
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I have lived sickle cell free for nine years.

When I think about my life with sickle cell (SC), I remember my first day of kindergarten–closing my eyes to check if I was feeling pain anywhere in my body. I did not. I was feeling completely normal. That was the last time I would have that feeling for a long time.

My second memory was a nurse giving me a shot, and being surprised I didn’t cry or even flinch.

I told her there was no point in crying over the things you cannot change. I was resigned to living with pain from SC for the rest of my life.

In high school, every morning started with turning off the alarm, rolling over and taking a bunch of pills: hydroxyurea, penicillin and oxycodone. I even took the painkillers to school, to deal with the pain.

The pain was like slamming your finger in a door: the initial sharp pain, followed by a dull ache. The dull ache was my daily life. The sharp pain was a pain crisis.

When I was 16, I remember sitting down to dinner with my family. My dad said, “Your doctor told me about a doctor in Pittsburgh who is curing people with sickle cell disease. I want you to have a transplant.”

I didn’t know what a “transplant” was. I was looking forward to graduation, and applying to colleges. I had a life. I didn’t want to interrupt my plans for a “transplant.”

Then one day I had a pain crisis that landed me in the hospital. My doctors told me I had to be on blood thinners for the rest of my life. Then they couldn’t find a vein. I thought about a life in and out of hospitals, all the needles, all pills, all the pain.

That’s when I began to seriously consider a bone marrow transplant.

When I arrived at the transplant center to meet my doctor and the rest of the team, I thought they’d tell me how great transplant was and how fabulous I would feel afterwards. But they kept talking about what it involved, chemotherapy, isolation, and potential side effects. It sounded horrible. But they wanted me to understand what to expect. I just wanted to feel better. All I cared about was, can you fix my sickle cell and can you reverse the damage that it has done already?

Fortunately for me, my sister was a perfect match for me.  I went ahead and had the transplant. It was difficult, but the hardest part came afterward. I was immune-compromised on my 18th birthday. I had a huge chocolate cake I couldn’t eat. I had gifts I didn’t care about. I was worried about losing my insurance coverage because I turned 18. My mom had lost her job in Chicago because she spent so much time caring for me. Financially, it was very challenging, but our social workers helped us find grants and resources and our family helped fundraise. On top of all that, I was missing college interviews.

It took about a year after my transplant to accept that I no longer had SCD. It had been part of my life for so long, I had to figure out who I was without the disease. I had to unlearn old habits. Recovery was gradual, but eventually, my siblings were able to stop being careful around me, and my parents could breathe a sigh of relief.

My one regret is that I did not freeze my eggs before treatment, but having children was not my priority at 16.

Learning to adapt to life without sickle cell has been difficult, but life continues to get better. Sharing my story helps. I’m grateful for the experience and thankful to be alive.

 

 

 

 

 

Tips for traveling well after transplant

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No matter what the length of your trip ─ a short road trip or a global adventure ─ the key to traveling well after transplant is careful preparation, including having plans in place to access medical care should you need it.

Managing your special medical needs

Chris, transplant recipient

Tell your transplant doctor or primary care doctor about your travel plans. It’s a good idea to talk to your doctor before you schedule your trip to make sure they think you’re healthy enough to travel.

Experts also recommend that you take a letter from your doctor and a list of your current medicines with you.

“I always travel with a letter from my doctor that explains my health history, my condition, the list of medicines I’m on and my most recent blood test results,” says Chris, who began to travel again about 2 years after her transplant.

If you’re traveling to a different country, have the letter and list of medicines translated into the language of the country you’ll be visiting.

It’s also a good idea to carry emergency contact numbers with you, along with an after-hours phone number for your medical team. If you wear a medical alert bracelet, be sure that information is up-to-date. And don’t forget to bring your insurance information with you.

Help your immune system do its job

Even if you are years out from your transplant, your immune system may not be at full strength. Ask your doctor what precautions you should take if you’re flying, staying in a hotel room, or visiting a beach.

The first time Chris took a long flight, she wore a mask and gloves as a precaution. And when she arrives in a hotel room, Chris also wipes down all of the hard surfaces ─ like faucets, sinks, toilet seats, countertops and desks ─ with disposable sanitary wipes.

Chris says that when she travels with a tour group, she contacts them ahead of time. “I’ll explain that my immune system is weak and that there are certain restrictions I have, especially with food,” she explains. “They’re really good about making sure that everything is okay for me to eat.”

Medicines and medical emergencies

Make sure you have enough medicine with you to last the whole time you’ll be away. Take all medicines with you in their original containers, and if you’re flying, pack your medicines in your carry-on bag.

Traveling on a cruise ship is not recommended because medical services onboard can be very limited. And even the medical services available when the ship docks at a port may not be enough to meet your unique medical needs.

Also, consider buying 2 types of travel insurance:

  1. Trip cancellation insurance. Because complications can develop even years after a transplant, it’s wise to buy trip cancellation insurance in case an unforeseen medical issue forces you to cancel your trip.
  2. Supplemental medical insurance. This can help in case you need care outside of your home country. And even if your trip doesn’t cross a border, medical care outside of your health insurance company’s designated network is expensive.

Do some research and find out where the nearest hospital or transplant center is at your destination, in case of an emergency. Mike, another transplant recipient and frequent traveler, needed to go to the hospital while he was on a trip to Florida. His pre-trip preparation helped him quickly get the medical help he needed.

Because Mike was going to be away from home and his transplant doctor for several months, his doctor connected him with another transplant doctor in Florida. “He gave him all of my files and asked him to be my doctor if needed,” Mike says. “It was a good thing we had done that because I had some severe respiratory issues and needed treatment.”

Take it slow

Although you may be tempted to let your guard down and “just have fun” while you’re away from home, continue to follow your doctor’s advice. Take your medicines on schedule, and eat and drink according to your doctor’s recommendations.

Also be sure to protect yourself from the sun and bug bites. If your immune system is weak, avoid dirty and crowded locations as well as lakes, pools and hot tubs. If you’re headed to a beach location, wearing shoes may help protect your feet from cuts or scrapes when you walk along the shoreline.

Ask a traveling companion to support you in making good choices so you can have fun without taking unnecessary risks with your health.

A pre-travel checklist

When you’re packing for your trip, make sure you have:

  • A summary of your medical condition and treatment
  • Your vaccination records
  • Enough of your medicines to last your whole trip
  • Copies of your prescriptions
  • Your insurance information/card
  • Emergency contact information

Questions to ask your doctor

Before you make any travel plans, ask your doctor:

  • Am I healthy enough to travel in this country? In another country?
  • What specific precautions should I take because of my stage of recovery?
  • How do I reach my transplant team while I’m traveling?
  • What clinical documents should I take with me?

For more information:

Summer Safety: Take Steps to Take Care of Yourself

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With all you’ve been through, or are going through, it’s important to enjoy the simple pleasures of life after transplant. The warmth of the sun, the fresh summertime air, an outdoor barbeque with family and friends.

By taking a few special precautions, you can enjoy the summertime and protect your health. Read on to learn about ways to stay healthy this summer.

Ines, transplant recipient

Reducing your exposure to UV rays

The strong summertime sun can damage anyone’s skin. But as a transplant recipient, a sunburn is a much bigger deal for you than it is to others. That’s because sunlight can trigger graft-versus-host disease (GVHD), even years after transplant.

To lower your risk of GVHD, you’ll need to avoid the sun as much as possible. But that doesn’t mean staying indoors all the time. Just following these common sense steps:

  • Wear a hat, sunglasses, long sleeves and pants when you go out
  • Apply sun protection factor (SPF) 50 or higher sunscreen on any exposed skin before heading out
  • Wear sun-protective clothing (Note: Not all clothing gives you the same protection. Look for clothing that has a high Ultraviolet Protection Factor (UPF). Learn more.)

“Avoiding sun exposure should be life-long,” says Dr. Linda Burns, Vice President and Medical Director, Health Services Research at the National Marrow Donor Program®/Be The Match®. “We know, in addition to burning the skin, that sun exposure increases the risk of certain types of skin cancer.”

And don’t forget that even on a cool, overcast day the sun is just as harmful as on a hot, bright day.

Avoiding food-borne illnesses

Foodborne illnesses increase in the summer months because bacteria can multiply faster at warmer, more humid temperatures. Also, safe food handling is more difficult when food is prepared outside, as it often is at a summertime picnic or backyard party.

Be The Match’s JJ Barten, a Registered Dietitian, offers these tips to help decrease your risk of getting a foodborne illness:

  • On hot summer days above 90° F, prepared foods should not be left out for longer than 1 hour. Getting foods back into the refrigerator or freezer within 2 hours is recommended when the temperature is under 90° F.
  • When you’re getting the grill ready to use, make sure raw meats stay below 40° F until they are ready to be cooked.
  • Use a meat thermometer to make sure that beef, pork and fish are cooked to 145° F, ground meats to 160° F, and chicken and turkey to 165° F.
  • Avoid cross contamination when packing a cooler by using different containers to keep raw meats, poultry and fish separate from all other foods.

JJ says that careful planning is a good way to stay safe. For example:

  • Be one of the first people to eat. This helps make sure the food is at a safe temperature and there is less risk of cross contamination.
  • Bring your own food to events. Then you can be sure food was prepared safely.
  • Bring an alcohol-based hand sanitizer with you if you’re not sure there will be a place to wash your hands with soap and water before eating.

And finally, JJ suggests that if there is any question on whether a food item or a beverage is safe, throw it out.

For more information about summertime food safety, visit FoodSafety.gov.

Other summertime hazards to avoid

There are other outdoor risks in the summer, too. Dust and dirt from building sites, fields, gardens, and lawns can increase your exposure to harmful molds.

“Regarding dust and dirt, it’s best to avoid it in the first place,” says Dr. Burns. “Stay away from construction sites and farm lands, and ask your doctors when it’s safe for you to mow grass or work in the garden or flower beds.”

Swimming in pools or lakes could also be risky, because these may be contaminated with harmful bacteria such as Cryptosporidium, and E. coli. Dr. Burns says it’s best to avoid swimming in pools or lakes until your doctors gives you the go-ahead.

Finally, Dr. Burns recommends taking simple, common sense precautions and being aware of your surroundings. “Carrying a broad-brimmed hat, ample sunscreen, a face mask, and water with you during your daily activities can help keep you prepared for the unexpected.”

Questions to ask your doctor:

  • When is it safe for me to work in the yard or garden? To go swimming?
  • Are there any special precautions I should take if I’m going to the beach, pool, farm or woods this summer?

Want to learn more about safe eating and good nutrition after transplant? Register now for the free Living Now telephone workshop on nutrition 1+ years after transplant.

Date: Wednesday, June 13, 2018

Time: 12:00 p.m. to 1:00 p.m. Central

To register:

Visit: BeTheMatch.org/patient-workshops

Email: patientinfo@nmdp.org

Call: 1(888) 999-6743

A donor-recipient meeting helps raise awareness among D.C. lawmakers

Posted April 3rd, 2018 by Be The Match and filed in Donor Stories, Patient Stories, Volunteer Stories
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On March 20, in Washington, D.C., a first-time meeting between a marrow transplant recipient and her donor brought about tears of joy and forged a life-long connection between two women. But the meeting also raised awareness about how Congressional support is vital to help future patients get the marrow or cord blood transplants they need.

Be The Match arranged the first-time meeting between transplant recipient Kate Jauch and her donor, Kyndess Eaggleston, who was identified as the best match for Kate from among the more than 19 million volunteer donors listed on the Be The Match Registry.

The day after their emotional meeting, both women shared their experiences with Members of Congress at several legislative briefings arranged by Be The Match. Kyndess and Kate each spoke about the importance of advocacy, program funding, and access to transplant for Americans with blood cancer and other blood disorders.

“I was fortunate to have found a match, and we must continue to grow the registry for those who will need a transplant in the future,” said Kate. “This is why we are urging policymakers to protect access to transplant through increased program funding.”

At the briefings, both women spoke to Members of Congress and their legislative aides about how increased funding is needed to optimize access to marrow transplantation and to improve outcomes, particularly for Americans who might have difficulty finding a match or for patients where a transplant is their only chance for a cure.

“It was very moving to meet Kate in person and know that this is someone I will forever be bonded to through the Be The Match Registry,” said Kyndess. “I encourage anybody eligible to sign up to be a donor. They make the process easy and knowing you could potentially save a life is incredible.”

How you can advocate to help patients who need transplants

The first-time meeting between Kyndess and Kate raised awareness among the many Member of Congress who attended the briefings that for Medicare beneficiaries, funding for bone marrow transplants fall short of the actual costs of care.

Advocates such as Kyndess and Kate are urging Congress to act swiftly to pass HR 4215, legislation to ensure that future Medicare payment for cellular transplant reflects the true costs of treatment, including cell acquisition, transplant and recovery for older Americans diagnosed with blood cancers or other disorders.

As described on the Be The Match legislative advocacy webpage, HR 4215 will reform reimbursement to hospitals for the cell acquisition costs using a methodology similar to that used for solid organs. This policy would have a very small impact on Medicare’s total spending, but would ensure patient access to life-saving care.

Learn more about how you can advocate on this and other issues affecting access to live-saving transplants.