Tag Archives: #awareness

Life On The Heart Transplant Waiting List

Patrick McEntee was diagnosed with cardiomyopathy in 1996. By 2008, he had experienced two strokes and a non-obstructive heart attack. He received an LVAD in 2014 and began fundraising with HelpHOPELive six months after being listed for transplant. In honor of Heart Month, here are Patrick’s observations after a year and a half on the transplant waiting list.

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Pat received an LVAD in 2014


The Physical Impact


I was evaluated for transplant at the Cleveland Clinic in August 2014 and again in September 2014. I was admitted to the hospital immediately upon completion of that second evaluation and was officially listed for transplant that month. My LVAD was put in two days later. It was strange because I had walked – struggling to do so, but still walking on my own – to appointments all over the Clinic’s campus that Friday, and doctors thought I would be listed as a low-priority Level 2 on the waiting list. By Monday, they wouldn’t allow me to get out of bed. I didn’t feel any different, but I went with what they told me. Things escalated very quickly.

The LVAD knocked me for a loop. I didn’t quite know what I was in for. I was sedated for three days after the procedure and I spent a few more days in the ICU. I was in the hospital for a month total. I knew I was going for transplant evaluations, but I really had no idea that I would be there for a month. I thought I’d be returning home the same day. I got the LVAD and it was clear I wasn’t going to be able to continue working and living. I had to apply for disability and prepare for transplant.


Financial Challenges


When you go for a heart transplant evaluation, you don’t just see a transplant coordinator. You also see a cardiologist, a bone doctor, a dentist, a dermatologist and more–and there are expenses associated with each. It’s $30 every time I walk up to a doctor’s desk, plus parking and travel: it’s a 3.5-hour drive to Cleveland and 3.5 hours back home every time I have an appointment. I’m there at least once a month, and I’ve been admitted to the hospital twice during regular appointments since the LVAD was put in to help prepare my body for transplant.

Pat makes a 3.5-hour drive to his transplant center.

Pat faces a 3.5-hour drive to his transplant center


The Role of Fundraising


I’m honestly overwhelmed at the support I’ve been receiving. I’ve had family members, friends, and even friends-of-friends and anonymous donors make significant donations. Most of my fundraising has happened through online sharing and word-of-mouth. The most unnerving thing financially is not really knowing what medications I’ll be on and how much they will cost. Thanks to fundraising, even if I’m looking at $1,000 per month out-of-pocket with prescriptions, I have enough built up that I would be able to cover it for quite a while.


Finding Gratitude


The realization that there are certain things I can’t do is a challenge. Seventy- and 80-year-olds say that, but here I am at 41 saying that myself. But overall, I’m very thankful for the situation that I’m in. I’d love to be completely healthy, obviously, but it is what it is. I’m happy to be able to come and go and do what I want and still have a decent level of independence at this stage.

My wife has been tremendous. She has helped me take it day by day and roll with the changes. She has to be careful now about scheduling her travel for work in case I get ‘the call’ or need her help. It’s a toll that she’s happy to deal with, but it does get in the way of her being able to do what she wants or needs to do at times. For me it’s about staying positive, because I’m surrounded by my wife, my family, my friends and even strangers who are willing to jump in and help out. If you’re a positive person, I think people around you will often respond in that way.

I am grateful for the prayers from thousands of people from all over the country – many people, including strangers, have told me they pray for me daily. It’s truly humbling. My faith has taught me to be grateful for the extra time I have been given in this life, no matter how much more I get. I could easily be dead by now, but I am alive, which I take to mean that God has more for me to learn and accomplish in this life.


Unexpected Benefits


My sister has had similar heart-related issues within the past year. One of the benefits of not being able to work was being able to look out for her and take her to appointments. Beyond that, I’ve started to volunteer with some of the medical centers, talking to patients who are considering an LVAD or have just received one. I explain my experience to them. I’ve really appreciated being able to do that. I see it as almost a ministry, talking to these patients to give them my take on it.


Getting (Too) Comfortable


It’s one thing to say, okay, I’m used to this and this is the new normal. But I have to keep reminding myself that I could get the call at any time. There was a time after the LVAD that I didn’t feel like I was ready to get the call. Today, I still try to imagine what I’ll be doing when I get the call and how I’ll react. Am I going to be able to drop everything and go? If I got the call right now, I’d have to grab a bag and be out the door and tell my wife to meet me up there. It’s a fine line: I want to continue with life and not end up sitting there doing nothing, just waiting.

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Pat describes the “fine line” between preparing for transplant and continuing to live life


The Role Of Humor


Some might see my wife and my sense of humor as a bit morbid, but I find that laughing about our situation is helpful. For Christmas, my wife gave me an anatomically-correct plush heart and said, “Until the real thing comes along.” She also gave me a pair of socks with gold hearts and “heart of gold” stitched on them. Friends on Facebook helped me create a cardioversion playlist with songs like “Electric Avenue,” “Kickstart My Heart,” and “We Got The Beat.” A sense of humor is mandatory in dealing with the unknown of the process of waiting for a transplant.

"Until the real thing comes along..."

“Until the real thing comes along…”


What To Do While You’re Waiting


The important thing is to keep living your life and doing as much as you can. While I’m not working, I wake up and ask, what is my purpose today? Some days my purpose is to sit on the couch and watch TV. But other days I’ll say, today I’m going to do some writing. Today I’m going to read a book. Today I’m going to the grocery store. Whatever it is that you’re able to do, do it.

Get involved in whatever ways you can in life. For example, through volunteering. I found that very rewarding and helpful. Be willing to give of yourself. A lot of people would agree with me that when you give, you receive. It’s nice to tell your story and hear the stories of others.

Lastly, I would add, stay active. It’s not unusual to gain weight with the LVAD, so exercising as much as possible is incredibly important. I know it’s difficult when you are in heart failure but it’s a way to ensure you can be as strong as possible when the call comes.


Follow Patrick’s story or make a donation in his honor on his HelpHOPELive Campaign Page. Have your own transplant story to tell? Reach out to us on Facebook.

Meet Advocacy Award Honoree Senator Pat Toomey

We present our 2015 Advocacy award to Senator Pat Toomey for organ donor awareness and disability advocacy.

Senator Pat Toomey joined the U.S. Senate in 2011. In May of 2013, he became acquainted with the story of a ten-year-old girl living in Philadelphia who was fighting for her life following a cystic fibrosis diagnosis. Sarah Murnaghan desperately needed a double lung transplant, but according to the Under 12 Rule established by the Organ Procurement and Transplantation Network, Sarah would not be able to join the waiting list for an adult double lung transplant until she turned twelve. Far fewer lungs are available for children under 12 than for adults. As Sarah’s chances of a lifesaving transplant grew slim, her parents launched a desperate online campaign to change transplant regulations to save Sarah’s life.

Senator Pat Toomey with Sarah Murnaghan

Senator Pat Toomey with Sarah Murnaghan

With only weeks left to live without a transplant, Sarah was granted a ten-day period in which she would be placed on the adult transplant list. After those ten days, she would return to the children’s transplant list. As Sarah and her family waited and appealed to their government in a state of desperation, Senator Toomey addressed the U.S. Senate to appeal to Kathleen Sebelius, the Secretary of Health and Human Services, on Sarah’s behalf.

“I rise to speak briefly about a heartrending situation in Pennsylvania,” Toomey said. “There is a brave little ten-year-old girl who is fighting for her life at the Children’s Hospital of Pennsylvania in Philadelphia. At this moment, her government is failing her…The girl is a good candidate, but she’s not on the list.”

Senator Pat Toomey

Senator Toomey addressed the Senate on behalf of Sarah.

Toomey stressed the importance of making a permanent change to the rule, not a one-off exception for Sarah. “What we want is a system that works,” he said. “I think that any child who is a viable candidate for the adult transplant and who has sufficiency urgency ought to be able to go on the adult list. We’re not suggesting that we make an exception for Sarah…stop making exceptions that exclude Sarah. We’re asking for a change in a policy that is flawed.”

Senator Toomey’s appeal on behalf of Sarah worked. The Organ Procurement and Transplantation Network not only allowed Sarah to be placed on the adult waiting list, they agreed to allow children under 12 to be given case-by-case exceptions based on their eligibility and health condition.

Sarah Murnaghan

Today, Sarah is breathing on her own thanks to the Senator’s efforts.

Today, after a successful double lung transplant with adult lungs, Sarah is breathing on her own for the first time in years. Senator Toomey took a stand on the Senate floor, and his advocacy saved Sarah’s life and impacted dozens of other families in need.

Senator Toomey’s advocacy initiatives extend to multiple areas that impact HelpHOPELive clients. With Senator Bob Casey, he supported the bipartisan Achieving a Better Life Experience bill, proposed to help families to save funds for their loved ones living with disabilities.

Senator Toomey ABLE Act

Senator Toomey advocates on behalf of people with disabilities and their families.

The Advocacy award will be presented to Senator Toomey at this year’s HelpHOPE-Live It Up! benefit on October16.

HelpHOPE-Live It Up! logo Live It Up! Live It Up 2015 annual event charity galaEach year at HelpHOPELive’s annual signature fundraising event, HelpHOPE-Live It Up!, we honor community heroes who prove why our mission matters with the Help, HOPE and Live awards. In 2015, we’re also giving out an Advocacy and Volunteer of the Year award.

Meet HOPE Award Honoree Jim Melwert

Each year at HelpHOPELive’s annual fundraising event, HelpHOPE-Live It Up!, we honor community heroes who prove why our mission matters with the Help, HOPE and Live awards. In 2015, we’re also giving out an Advocacy and Volunteer of the Year award.

This year, the HOPE award will go to KYW’s Jim Melwert for his selfless gift of life through living kidney donation.

Jim Melwert gold medal

We honor Jim Melwert for giving the gift of life.

In 2006, Jean DelMuto was struggling with the painful effects of polycystic kidney disease. Facing at least a 5-year wait for a kidney transplant, Jean’s health deteriorated so rapidly that her manager established an in-office cotthat she could use for the naps she needed to take just to make it through each workday. As Jean was entering some of the most challenging health circumstances of her life, her nephew Jim, made her a stunning offer: the gift of life.

Jim Melwert KYW news organ donation transplant Jean DelMuto organ donor kidney

Jim Melwert with his aunt and recipient, Jean.

Jean’s nephew, Jim Melwert, is the Suburban Bureau chief for KYW Newsradio 1060. When he heard about his aunt’s struggles to secure the transplant she so desperately needed, Jim made the selfless decision to donate one of his kidneys to save her life. He made the life-changing donation on February 27, 2006, a date that he and his aunt will never forget.

For many, a transplant represents a “second chance” that can inspire recipients to make commitments to maintain their health and make the most of their future. Jim turned his gift to Jean into his own “second chance”: he began giving serious consideration to his own health, making a decision to start training for and participating in a series of impressive athletic challenges. Since giving a kidney to his aunt in February 2006, Jim has participated in competitions including Ironman events, the Transplant Games, 5k swims and Donor Dashes to honor other organ donors and recipients.

Jim Melwert Transplant Games gold medals

Jim, left, began participating in athletic competitions like the Transplant Games after giving the gift of life.

In 2013, Jim delivered a powerful address as the keynote speaker for the Gift of Life Donor Program’s Living Donor Recognition Ceremony. “As a reporter, our personal experience helps shape who we are and how we see the world,” said Jim. “Being a living kidney donor, I see the triumph of the human spirit, science and the human body. Every single donor [has] the courage, the love and the desire to make a difference. There are no words to explain how it feels to see the difference we’ve made.”

Jim Melwert Jean DelMuto Donor Dash transplant living donation donate life

Jim and Jean celebrate the gift of life together at a Donor Dash event.

HelpHOPE-Live It Up! logo Live It Up! Live It Up 2015 annual event charity galaOn October 16, 2015, HelpHOPELive will honor Jim Melwert for giving the gift of life with our signature HOPE award. Join us to celebrate the power of transplantation, selfless giving and second chances.

HelpHOPELive Clients In The News September 2015

Our clients work hard to engage their communities in fundraising, and the media is taking notice! Here are three standout stories.


Wade Smith: 8-Year-Old Needs Transplant

Wade Smith, Wes Smith, fundraising, Williams Syndrome, illness, chronic illness, catastrophic illness, childhood illness, HelpHOPELive, genetic illness, transplant, transplant fundraising, fundraising for transplant

Wade Smith is an 8-year-old boy in Belington, West Virginia who has experienced more medical emergencies than most of us will ever face. Diagnosed with Williams Syndrome, a genetic condition that causes cardiovascular issues and developmental delays, Wade was born without a right hand. He underwent open heart surgery at 3 months old and was diagnosed with FSGS at age 4. Today he receives daily peritoneal dialysis treatments while he awaits a kidney transplant.

Wade’s story has moved local families and businesses, including the McDonald’s in Philippi, which has agreed to donate 50 cents from every small fry order to HelpHOPELive in Wayne’s honor every Sunday throughout October. (Philippi McDonald’s helping boy with medical expenses)


Sarah Carr: Selfless Mom Seeks Accessible Van

Sarah Carr, Carol Amore, fundraising, fundraising for illness, catastrophic illness, chronic illness, disability, caregiver, awareness, HelpHOPELive

Carol Amore of Beverly, Massachusetts has been the primary caregiver for her daughter, Sarah Carr, for 33 years. Sarah is unable to walk or talk and has been enduring debilitating seizures since she was 5 months old. Now 60, Carol is fundraising for a wheelchair-accessible van that would ease the burden of transporting Sarah to her daily activities and specialty medical appointments.

Carol credits Sarah’s life with teaching her about patience, strength and unyielding compassion. (Beverly family seeks help acquiring handicap van)


August Murphy: 5K Run for Lungs Honors CF Fighter

August Murphy, 5k Run for Lungs, 5k, run, running, marathon, training, marathon training, coach, marathon coach, fitness, health, gym, workout, health, HelpHOPELive, CF, cystic fibrosis

August Murphy will run her first nonstop mile on September 13 at the 5K Run for Lungs event in Portland, Maine. Diagnosed with the genetic disease cystic fibrosis at 4 months, August is fundraising with HelpHOPELive for the double lung transplant she’ll one day need. August’s trainer, Brian Ligotti, plans to run alongside her every step of the way, ready to provide oxygen from a tank if August needs it to finish the race.

August and her medical team hope that fundraising now will limit the amount of additional stress placed on August as she grows stronger in preparation for a transplant. (Maine woman will run for a new set of lungs)


Want your HelpHOPELive Campaign to make headlines? Reach out to your Fundraising Coordinator for assistance with press releases and outreach.

Making Connections After A Spinal Cord Injury Can Change Your Life

At age 13, a spinal cord injury changed Reveca Torres’s life. She began working with HelpHOPELive to fundraise for injury-related expenses in 2008. Now the executive director of the spinal cord injury support community BACKBONES, Reveca devotes her time to helping others discover vital SCI resources and find joy and connection after injury. Here are her insights on connecting with others, fighting stigmas and learning to embrace your new life.


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Do spinal cord injuries create both physical and emotional challenges?


Definitely. Physically, your body is entirely different post-injury. You have to re-learn what your body can do. All of your internal systems are affected, from bowels and bladder to body temperature and your sense of touch. Everything is so different. It takes years to be self-aware and understand the new feelings, signals and reactions in your body.

Initially, I thought of my body as broken. Now I know that my body is still alive. It’s still working. I won’t ignore it. You have to learn to stay healthy or you risk being stuck in bed healing from issues and other injuries.


What can you learn through connecting with peers?


I think it’s really important to get to know other people with spinal cord injuries so you can begin to understand how they handle their daily lives. Connection is a great way to learn from others and discover some self-acceptance, too. Getting comfortable with your situation is one of the biggest hurdles when you are first injured. You need to see that others in your situation are making it work.

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Connect with others with SCI and learn how they make it work.

Knowing that someone else understands exactly what you’re going through is powerful. It’s wonderful to not have to explain yourself or what you’re feeling. You can talk, ask questions and learn from each other. There’s a lot of relief knowing that someone else knows what it’s like to be you. I hear that when I talk to people on the phone: the conversation starts with a lot of questions, nerves and anticipation. By the end of the call, there’s a sound of relief in the caller’s voice.


What helped you to make a breakthrough after injury?


I didn’t have a lot of friends with injuries after I was injured at 13. I had to learn how to conquer a lot of physical challenges on my own. Acceptance was a big part of that – I was coping with SCI AND being a teen! At college, I met other people with injuries who were playing sports, dating and traveling. That community gave me the confidence to try new things.

moving airplane sky clouds skyscraper city

Moving away from home helped Reveca find her independence.

I had a lot of support from family and friends and they were behind me all the way after I was injured, but ultimately they couldn’t show me how to build a life for myself. I had to see other people make it happen to get there myself. Moving away from home made a big difference for me. Going away to college was intimidating, but when I got there, other people would approach me and start conversations and we’d become friends. Give yourself those opportunities, whether that means putting yourself out there or moving to an area that gives you access to a stronger SCI community.


Is it tough to make connections if you are nervous or naturally shy?


It is always intimidating at first to connect with others or ask questions. Those physical and emotional challenges after injury can make you feel like you need someone else to advocate for you. Someone close to me gave me a really good piece of advice: become your own advocate. Family members provide as much as they can for someone they love and they want you to get better and get to a good emotional place, but that support can hinder your growth.


Do you have to embrace the “disabled” label to be a part of the SCI community?


Initially, I didn’t want to hang out with other people who used wheelchairs. I didn’t want to identify as “disabled” – I wanted to believe I was still the same person. I was the same person in some ways, but I was also very different after injury, and I had to learn to embrace that. Being part of the disability community doesn’t stop you from participating in the able-bodied world. You can have both!

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“There shouldn’t be a line between ‘us’ and ‘them.'”

Being injured is not something any of us asked for or want to be a part of, but the SCI community is a great group of people. We have all gone through something life-changing and we have learned how to adapt. These communities are essential not just for people who are injured but for their friends and family members as well. Our events are open to people with and without disabilities. There shouldn’t be a line between “us” and “them.” We are all human, and we can all relate to one another on different levels.


 

BACKBONES splash wheelchair beach disability spinal cord injury Reveca Torres


To connect with other people with spinal cord injuries, visit BACKBONES online. If you need help covering uninsured injury-related expenses, reach out to us.

An Injectable Spinal Cord Injury Prevention Drug?

Researchers are working on a medication that can be injected immediately after an accident to limit or prevent spinal cord injury damage.

spinal cord injury drug sci prevention medication drug injection new zealand research science

What You Need To Know:

  • The project was started in 2011
  • The medication could stop inflammation and limit spinal injury by up to 50 percent
  • The injection could be carried by EMTs as well as specialized responders
  • Clinical trials are difficult to carry out because of the traumatic nature of the injuries

Key Quotes:

“Previously we were delivering [the medication] to the cord…now we know that we can deliver it into the bloodstream and still see the same effects.”

“It would be no different than delivering any other kind of drug [via injection].”

–Dr. Simon O’Carroll, researcher at the University of Auckland

 Read the article at Radio New Zealand

What Can Spinal Cord Injury Therapy Do For Me?

As Mobility Awareness Month continues, we look at how physical therapy can help to boost your body and mind following a spinal cord injury.

Robert Mudge became a C5/C6 quadriplegic after an accident in 2001. Physical therapy and adaptive athletics have helped Robert to maintain a positive mindset and keep his body strong.

Robert Mudge quadriplegic rugby adaptive athletics

Robert, did your injury influence your interests and hobbies?

Growing up, I tried any sport or activity that grabbed my interest thanks to my supportive parents, including baseball, football, working out, bowling, BMX racing, surfing and fishing.

After my injury, I thought all of these hobbies and others were lost to me. However, over the years I’ve learned that I can still take part in similar sports and activities, just in a different manner. It wasn’t until 2007 that I discovered I could play a team sport again: quad rugby, with the Brooks Bandits in Jacksonville, Florida. In order to surf, instead of standing on the board I can lie on my stomach on the board, propped up on my elbows.

There are countless sports that can be played with a little adaptation: playing pool, swimming, table tennis, tennis, fishing, cycling, bowling, basketball, hockey…the list goes on.

Robert Mudge surf quadriplegic wheelchair surfing

Were you hesitant to get involved in adaptive athletics?

I was a little apprehensive at first when I gave these new activities a try, because I knew I wouldn’t be able to engage at the same caliber I was used to. I tried not to let that fear limit me or prevent the growth that I could experience by participating.

What helps you maintain your peace-of-mind?

Hope and faith both help me keep my sanity: hope that I can get better, and faith that I will. There are no guarantees that either will happen, but I believe both of those forces are very powerful. Combining those elements with relentless effort, goals, support from family and friends and a determination never to give up helped me get to where I am today.

How do you cope with injury anniversaries?

When I am faced with injury anniversaries or times when I feel like my progress is stagnant, I reflect back on how far I’ve come and celebrate the things I CAN do rather than harping on the things I still can’t do.

Robert Mudge walk stand quadriplegic

What did physical therapy do for you?

Thanks to a HelpHOPELive fundraiser, I was able to afford my first trip to Project Walk in Carlsbad, California. I realized I had found what I was looking for. It was so refreshing to be treated as a ‘normal’ person and to be moved and rehabilitated outside of my wheelchair.

[Project Walk] had me doing things I knew I couldn’t do, and that approach was frustrating at first. The staff recognized that one day, with repetitive training, I could get there. That’s exactly what happened over the years. I’ve continued working on rehabilitation in my home gym and at Project Walk Orlando year-round.

Do you find your hobbies therapeutic?

I think moving in general is therapeutic. Whether you’re engaging your mind or your body, staying active and in motion is a great thing. Just like they say, things in motion stay in motion.


Brian Keeter was left paralyzed from the waist down after a near-fatal car accident. Brian works out and advocates for spinal cord injury research to stay perpetually engaged in recovery.

Brian Keeter advocacy spinal cord injury SCI

Brian, did your injury change your participation in sports?

I played sports my entire life, and even played basketball in college. Leading up the accident, I had been playing in recreational league game with my friends and I played basketball several times every week, including Saturday mornings at 7 am. I have spent a lot of time working with exercise specialists to get stronger, stay fit and maximize my physical functioning. I’ve stayed on top of the research being done to find cures or improve rehabilitative therapies. I started my own foundation to identify and support spinal cord injury research.

Walk On Foundation spinal cord injury research tech rehab physical therapy

What do you like about working out?

I try to do all I can do to maximize what I have and prepare my body for the treatments and therapies that will be available in the future. Working out is therapeutic: you get to see that there are others dealing with the same or similar circumstances and, in some cases, worse circumstances. When I work out, I feel like I am physically working to do something about my physical limitations.

I have gotten stronger, particularly in my upper body and core, and I have gained movement in my hip flexors and gluts. My body feels better after working out because the exercises loosen me up and let me stretch out. When I have been traveling or have otherwise been unable to work out for a few days, I experience more pain, most likely because of increased tightness in my body.

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