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Signs of Spring

In the past few years, we at The LLF have seen a significant increase in the number of organ donors who have died as a result of a drug overdose. In the last year alone, we have seen our percentage of donors from drug overdose almost double. Nationally, 1 in 11 organ donors has died of an overdose – here in Maryland, that number is 1 in 6. We are eternally grateful to the donors and their families who choose to give life in moments of tragedy. We also recognize our responsibility as members of this community to do what we can to fight this epidemic.

Drug addiction is one of the greatest health epidemics of our time. Overdose deaths have more than doubled in the past 6 years and continue to rise, especially deaths attributed to opioid overdose. More Americans die from drug overdoses than in car crashes. You may think this issue doesn’t affect you, but the truth is that 1 in 10 Americans over the age of twelve have a substance use disorder. Many of those suffering don’t get treatment because they feel judged, stigmatized, and worthless.

But you can help. By changing the way you talk about, think about, and treat people with addiction, you can help to create an environment and society in which those suffering from this disease and their families feel empowered to get treatment for recovery.

 

How To Talk About Addiction

  • Avoid the word “choice.” Addiction is not a choice, a moral failing, or a result of “bad decisions” – it is a medically proven disease, just like diabetes, cancer, and heart disease. And it’s just as life-threatening if left untreated.
  • Reject the word “drug addict,” “drug abuser,” and other harmful labels. It’s disrespectful to describe a human being in one or two words, especially ones with such overwhelmingly negative connotations. You would never say, “my mother the cancer,” you would say “my mother has cancer,” and that would surely not be the only way you described her. Please keep in mind that people with addiction are people first.
  • Leave stereotypes behind. Addiction knows no boundaries. People of all backgrounds, races, ages, genders, and geographical locations are susceptible to this epidemic.

 

How You Can Help End the Epidemic

  1. Educate yourself and those around you, especially kids. Learn the facts and the impact of addiction and the opioid epidemic. Talk to family, friends, coworkers, and neighbors and encourage them to learn the facts as well. Talk to children very early on (even at 9 years old) about drugs and addiction.
  2. Don’t let stereotypes and discrimination slide. If you hear someone using harmful stereotypes and perpetuating addiction stigma, speak up. You’ll be glad you did, and odds are, others around you will be too.
  3. Support people in recovery or those seeking recovery. Recovery is rarely easy, it may take multiple attempts. Help those you encounter reach recovery by being understanding, non-judgmental, and supportive.
  4. Get trained to administer Naloxone. Naloxone is a safe, effective medication that, when given in time, can reverse the effects of an opioid overdose. This training is essential if you or a loved one uses opioids, be they legal prescription drugs or illicit. Even if you think you don’t need it, training may allow you to save the life of a stranger.
  5. Properly dispose of unused medication. Prescription drugs left in the home can end up in the wrong hands, including children and elderly family members. Take advantage of the many “drug drop boxes” in Baltimore City, Baltimore County, and many other Maryland counties. If a box is unavailable, use the Deterra pouch, a drug deactivation system that prevents misuse and protects the environment.

 

Additional Resources

 

Grief Recovery After a Death from Substance Use:

www.grasphelp.org

 

Know the Signs of Addiction:

http://drugabuse.com/library/symptoms-and-signs-of-drug-abuse/

 

How To Help Someone With Drug Addiction:

http://www.hazeldenbettyford.org/articles/what-can-i-say-to-get-you-to-stop

 

Help End the Heroin Epidemic:

http://www.drugfree.org/can-help-end-heroin-epidemic-find/

 

Find Help & Treatment for a Substance Use Disorder:

http://www.samhsa.gov/find-help

 

Learn More and Help Fight the Stigma:

www.overdoseday.org

http://www.mass.gov/eohhs/gov/departments/dph/stop-addiction/state-without-stigma/

 

In the previous post of this series, we discussed how The LLF receives referral calls for potential donors and how our Donor Service Coordinators (DSCs) initially decide if donation is possible. In Part 3, we will continue to explore the referral process.

 

Potential Organ Donors

You’ll remember that a patient MUST be on a ventilator in order to be an organ donor. Organs are only suitable for transplant if they are being kept healthy by a flow of oxygen from a ventilator. If a patient is on a ventilator and does not have active cancer, the organ referral process may continue.

Gamechanger: The HOPE Act

Up until March 2016, an HIV positive patient was also an automatic rule-out for organ and tissue donation. Thanks to the passing of the HOPE Act in 2013, it is now legal for HIV positive donors to donate to HIV positive recipients. This will save hundreds of lives every year and reduce the transplant wait time for everyone listed! The first HIV positive to HIV positive transplant has already been performed at The Johns Hopkins University.

If a potential donor is not initially ruled out by active cancer, the DSC sends a notification to the Organ Recovery Coordinator (ORC) on call. The ORC will call the hospital unit and speak with the patient’s nurse to gather more information. ORC’s ask about the reason for admission, current clinical course, lab work, medical history, and anything else that will help them determine if the patient is suitable for donation. If the ORC determines that organ donation is possible, one of two things will happen: If the donor needs immediate attention, the ORC will head on-site to continue evaluation and donor management. If the donor is stable, the ORC will send a Donor Service Technician (DST) on-site to continue the evaluation.

MYTH: I cannot be a donor due to pre-existing medical conditions.

FACT: Every potential donor is evaluated on a case-by-case basis. We encourage everyone to sign up as donors if that is their wish, regardless of medical conditions.

 

Potential Tissue Donors

The process for potential tissue donors is slightly different. If a patient is not a candidate for organ donation, but is a candidate for tissue donation, then the DSC will continue the referral process by gathering medical information. A patient does not have to be on a ventilator to be a tissue donor. The only requirement is that tissues must be recovered within 24 hours of the time of death.

Due to the nature of tissue donation, there are more diseases and medical conditions that would rule a patient out for tissue donation than for organ donation. However, we still encourage everyone who wishes to be a donor to register regardless of any pre-existing conditions. Not only are many conditions still acceptable for tissue donation, but considering the rate at which health care advances, a condition that is a rule-out now could be completely accepted in the future.

Once a DSC has determined tissue donation is possible they will activate the Tissue Recovery team to go on-site and continue the evaluation.

 

Next time…

We will continue with our DST’s and recovery teams and break down the on-site evaluation of donors. We will also explain the different types of donors and the ways that organ and tissue donors can save lives.

For Mental Health Awareness Month in May, we’d like to take some time to discuss the importance of mental health and ending the stigma associated with mental health issues.

Mental health is equally as important as physical health, yet there is still great stigma around seeking mental health treatment. The truth is, nearly 44 million American adults, and millions of children, experience mental health conditions each year, including depression, anxiety, bipolar disorder, schizophrenia, and post-traumatic stress. 1 in 5 Americans will deal with mental health issues in their lifetime. For those living with mental illness, it can be very difficult to deal with the stigma and judgement of others who do not understand the experience of mental illness. May is Mental Health Awareness Month, during which we recognize those Americans who live with mental illness and substance use disorders, and we pledge solidarity with their families who need our support as well.

 

The Importance of Self-Care

Whether you have a clinical diagnosis or not, taking care of your mental health is an important part of taking care of yourself. This doesn’t mean that everyone needs to see a psychotherapist or psychiatrist, but it does mean that everyone should think about and try safe and healthy outlets for stress and other strong emotions. This can include the experience of counseling, where you have a relationship with a therapist who is there to support you and listen, but it can also be a wide array of other things, such as journaling, exercising, spending time with a pet, or coloring. Taking care of our mental health should be a priority for all of us and self-care can be as individual and unique as all of us.

 

Warning Signs

If you or a loved one is struggling with mental illness, there are some key signs that it is time to ask for the help of a professional.

  • Thoughts of self-harm or suicide
  • Thoughts of harming another person
  • Difficulty functioning and completing day to day tasks
  • Long term difficulties with sleep and appetite
  • Worries that are intrusive and make it difficult to concentrate on anything
  • Difficulties with substance or alcohol use

It is never wrong or too early to seek help for yourself or someone you care about. Think of it as preventative maintenance for your brain, kind of like brushing your teeth.

 

Ending the Stigma

Working with a mental health professional can be incredibly helpful during highly stressful or emotional times, or even when things in your life are going well. There is no shame in taking care of yourself in this way; it is no different than visiting a doctor for an annual physical or when you start to feel ill. Encouraging others to take part in this kind of health care is an important part of ending the stigma that surrounds mental health. If someone confides in you their struggles with mental health, do your best to be supportive, non-judgmental, and loving. Know that it is not your responsibility to “fix” anyone’s problems, just as it is not your responsibility to “heal” someone when they are sick. The best thing you can do for someone struggling with mental illness is to love them, support them, and encourage them to get help.

 

Seeking Support

Seeking support around grief is so important, be it in online forums, blogs, support groups, or individual counseling. Finding a safe and healthy outlet for grief helps when the surges of strong emotions come and is very important if you are predisposed to any mental health conditions such as anxiety or depression.

We are lucky to have a caring team of Family Services Coordinators here at The LLF who have backgrounds in bereavement and mental health to support our donor families through the death of their loved one. We also have a Community Grief Counselor to serve and support our donor families and the community at large through the experiences of traumatic grief. Please let us know if we can help you. You can reach us at familyservices@thellf.org.

If you are living with a mental illness or have a loved one who is, know that you are not alone and please consider sharing your story. The more we talk about mental health, the easier it is for those in need of help to seek it without fear of the judgment of those around them. Mental Health America currently has a campaign called #mentalillnessfeelslike for Mental Health Awareness Month, where people are sharing stories on social media of how it feels to live with mental illness. See these shared stories at:  www.mentalhealthamerica.net/feelslike

This article was written by Grace Wo, a first year student pharmacist and initiator of Donate Life Month at the University of Maryland School of Pharmacy in Baltimore.

 

At the University of Maryland School of Pharmacy, students are consistently involved in improving patient care and raising awareness about public health topics. Throughout Donate Life Month in April, a group of passionate pharmacy students collaborated with The LLF to raise awareness about the gift of organ and tissue donation to the public.

To kick off the month, the students held a lightning-round question competition on Facebook, where every day a question was posted about organ donation and students accrued points by answering the question quickly and correctly. Reaching over 500 people via social media, this competition conveyed the impact of organ donation. “I couldn't believe that one individual can give life to up to 8 other people through organ donation!” said Leena Doolabh, a first year student pharmacist and winner of the competition.  

The team reached out to very diverse populations through tabling events at the Pharmacy Hall, the SMC Campus Center, the Spring Festival in West Baltimore, and the University of Maryland Baltimore (UMB) campus. In addition to answering a question about organ donation for a prize, current donors shared why they chose to be organ donors. Others signed up as donors if they felt ready to commit to that decision. From the tabling events it became apparent that many people are impacted by organ donation and transplantation. One woman at the Spring Festival shared a heartbreaking story of her daughter’s best friend who lost her transplanted kidney from rejection and subsequently passed away. “It was the unexpected moments like these that made everything in Donate Life Month worthwhile,” said Teny Joseph, a first year student pharmacist and coordinator at the Spring Festival.

The American Pharmacist Association Academy of Student Pharmacists (APhA-ASP) general body meeting marked the midpoint of Donate Life Month. Members were handed a picture of an organ or tissue to represent the organ or tissue they "received." Through this exercise, each participant was able to gain a tangible understanding that of the over 120,000 people on the waiting list, every individual is somebody’s mom, dad, child, or friend, and that one donor can save over eight lives through organ donation and more than 50 lives through tissue donation. Following a video about the process of organ donation, Dr. Idris Yakubu and Dr. Jacqueline Clark, pharmacy residents for Solid Organ Transplant from University of Maryland Medical Center (UMMC), joined the meeting to address the students’ questions about organ donation. 

One of the month's ongoing displays was a story booth in the School of Pharmacy atrium. The "Superhero Story Station" celebrated the stories of Morris Murray and Morgan Yoney. Murray is a HIV+ liver recipient. Yoney was diagnosed with cystic fibrosis at a young age and is still waiting for an O+ lung donor. (Morgan’s whole story can be found on Facebook under Morgans Army.) For Paul Algire, a first year student pharmacist, this opportunity was precious. “My partner's liver transplant three years ago was the catalyst for my pursuing a PharmD degree. It was great to see so many reminders of that this past month.”

On April 27, a stormy Wednesday was transformed into a Hawaiian paradise at Pharmacy Hall. Students showed up in their most festive Hawaiian shirts in honor of Matt Gabriel. Matt was a close friend of Ashley Fan, a third year student pharmacist and coordinator of the event. Hawaiian Shirt Wednesday was a goofy tradition that Matt started during college. Matt was heavily involved in the Goucher College community and also a member of the men’s lacrosse team. Unfortunately, on his way home one night, he was hit by a drunk driver and rushed to UMMC. Despite the medical team’s best efforts, Matt passed away on April 14, 2014. During this tragedy, a Family Services Coordinator from The LLF asked Matt’s family if they were willing to honor Matt’s wishes to be an organ donor. They agreed and because of their generosity, Matt saved the lives of four people. “Hawaiian Shirt Wednesday is one of my favorite memories from pharmacy school,” said Ashley. “It meant so much to me that my friends and peers helped celebrate Matt’s life and spirit. Together, we were able to raise awareness and funding (over $300), while having a great time.” 

These events were made possible by the dedicated work of students committed to a noble cause. Every step of the journey was motivated by both the heartwarming and the heartbreaking stories from donors, recipients, and their friends and families. With generous support from The LLF, the passionate students reached over 700 people through tabling and social media, met 83 existing donors, and helped 11 new organ donors sign up. But beyond the numbers, the students hope their impact goes far beyond the quantifiable and continues to impact and inspire people to save and enhance lives through donation.

Every April for National Donate Life Month, The Living Legacy Foundation joins with Donate Life Maryland, hospitals, MVAs, donor families, recipients, and donation advocates to raise awareness for organ and tissue donation and celebrate generous donors.

As April approached this year, it got us at The LLF thinking: WHY do we do what we do? WHY do we believe so passionately in our mission of saving and enhancing lives through donation? Ultimately, WHY did we say "Yes" to registering as an organ and tissue donor?

We believe that the decision to donate life is an important, impactful, and unique decision for all of us. For some of us, that "yes" is to give hope to a loved one waiting on the transplant list. For some, it is in honor of a family member who gave the gift of life as a donor. And for many more, it is simply about exemplifying the values that we believe in; generosity, compassion, community, etc.

Our #In1Word campaign for Donate Life Month explores these unique reasons for supporting donation. Read on below as we share a few of our favorite reasons. What's your reason for supporting donation? Visit www.thellf.org/in1word to print and share your #In1Word sign. Not registered? You can save lives #In1Word: "Yes!" Visit your local MVA or sign up at www.donatelifemaryland.org.

 

Michelle Bowers – Family

"The immediate word that came to mind when asked “Why am I a Donor?” is "Family." We as a society share a kinship that goes beyond the biological sense of the word. Family has many definitions to me. Members of a family include kinship of those extended in my community, those I have never met, but share a bond of connection to help another in need. Being a donor is part of the continuum of life."

 

Ieesha Johnson – Dreamer

"My #In1Word is "Dreamer." Deciding to be an organ donor is a way for me to paint the canvas of my life and for someone else. It's my decision to be invested in creative dreaming for another individual who may stop dreaming for themselves."

 


Dan Ricks and Mary Ballard – Teamwork

"Organ donation isn't about an individual, it's about a team! This team starts with YOU designating yourself! And knowing that you're part of a team that has the ability to save multiple lives. There are no words that can express how awesome that is."

 

Ann Bromery – Exponential

"As I hear stories about how one donor can save up to 8 lives and enhance more than 50 people with their gift, I think of how exponentially (expanding at a rapid rate) that one donor affects an entire community. Each recipient has a community they belong to...school, church, work, friends, volunteering, etc. So the life that is given back to the recipient is truly felt by an entire community...and when there are multiple recipients, then there are multiple communities that are affected by just ONE donor."  

 

Kenny Knight – Courage

"Choosing to give the gift of life takes courage; courage to designate yourself and the courage to make your wishes known to your loved ones. Every organ donor is a hero and that takes courage."

 

Kara Petrosky – Humanity

"Humanity to me means treating people in a kind and selfless way. What is more selfless than organ and tissue donation?!"

 

Ralph Davis – Transformational

"Organ donation is transformational for both the donor families and the recipient. The act of donation can help transform some of the grief into something positive by knowing that something good has happened as a result of a truly sad death. There is a sense that their loved one lives on.

For the recipient, transformation occurs on multiple levels. The most obvious is a change from being gravely ill to once again being healthy… moving from a state of despair and uncertainty to one of hope for the future. Beyond that, recipients experience a shift of perspective. You reevaluate what is important in life. Things that seemed important or difficult before transplant seem less so after transplant.  You change perspective, refocus your life and activities on what is truly important. The word “impossible” becomes obsolete!"

 

Erin Gillard – Unity

"Organ and tissue donation is such a profound way to recognize our connection as human beings. To be a donor is to recognize that alleviating another person's suffering, even if that person is a stranger, is the right thing to do. Donation brings people together through an act of bravery and compassion and connects not just the donor and the recipients, but their friends and loved ones, as well as everyone who hears the story of such kindness and generosity."

 

Rick Kolovich – Ko’Den

"Ko’Den loosely translated from Japanese to English means “condolence gift.” Traditionally, the word relates to providing the family a “gift of food or flowers” who has recently had someone in their household pass away. I believe that the gift can flow in both directions, that a family who donates a loved one’s organs and tissues are providing Ko’Den to recipients. In essence, a gift of life."

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