Tag Archives: music

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.

Voices Of Hope: I Donated A Kidney To My Best Friend

Author and professional rock musician James Michael McLester was diagnosed with end-stage renal disease in his early thirties. He endured 13 years of regular hemodialysis before his best friend, Laura Suarez McCutcheon, offered to donate one of her kidneys to James to save his life. On December 9, James received the gift of life from Laura.

James Michael McLester living donor HelpHOPELive

Laura donated a kidney to her best friend, James


How did you find out that Laura was a compatible donor?


James: Laura and I were like brother and sister when we were involved in the same music scene in the ‘80s. We lost touch for twenty seven years. In June 2014, Laura sent me a message on Facebook asking about my life. I shared with Laura my new autobiography and a bit of my medical history. At the time, I was dependent on dialysis and I was coping with shortness of breath, fatigue, anxiety, hypertension and severe fluid restrictions. Laura volunteered and was tested as a living kidney donor for me at the Texas Transplant Institute in San Antonio, and she was a match.

Laura: I really didn’t think too much about it when I made the decision to get tested. I just wanted to help him. During the months that followed, I never gave it a second thought. By nature, I am a worrier, and I’d never had surgery before, but I knew this was the path God chose for me. I never had one second of apprehension.


What would your future have looked like without Laura’s gift?


James: As a professional musician, I was unable to tour overseas in several countries where dialysis is either unavailable or reserved for extremely wealthy citizens. I would have faced twenty to thirty years of dialysis three times every week. I would have had to endure continued stress and anxiety and an income decreased by 80 percent due to my dialysis schedule.

James Michael McLester HelpHOPELive

James would have faced ongoing health struggles without a donor


How did you feel knowing that she was willing to give the gift of life to you?


James: Before Laura, five different kidney donors were tested for me between 2007 and 2015, and each was unable to donate either because of medical reasons (blood type, health issues) or personal circumstances. After I enjoyed dinner and a long talk with Laura and her fiancé, Chris, we both started to feel comfortable proceeding with the kidney transplant work-up to determine her eligibility to donate. Laura exemplified unconditional love towards me. She is a giving friend to all who know her.

Laura: Once we found out I was a match, we were so excited, I think James was in shock!


Do you two share a special connection now?


James: Laura and I both love the Lord with all of our hearts and realize that He is our source for giving thanks, walking in grace and mercy, and eternally growing in compassion. Everywhere we now travel in this life, we will illustrate a divine portrait of giving and receiving.

Laura: He is my best friend, brother and confidant. Our bond is unbreakable! Our relationship is one of true, honest love and respect.


What is the most exciting part of life after transplant?


Laura: James is very happy post-transplant! He’s making plans and looking forward to his future and the possibilities it holds. I love to see him smile!

James: I can now look forward to touring with my various musical projects, traveling, starting a family, and continuing to share my story for God’s glory.

James Michael McLester HelpHOPELive

James looks forward to touring with several bands post-transplant


Do you still have medical expenses to cover with fundraising?


James: I am responsible for a Medicare supplement policy with an out-of-pocket cost of $385 per month. Thirty-six months after my transplant date, Medicare will terminate my coverage and I will be fully responsible for all transplant-related medical expenses for the rest of my life. The expensive anti-rejection medications I have to take for my lifetime are out-of-pocket expenses that will cost me hundreds or thousands every month. With that said, there’s no guarantee that I will be able to push myself to return to full time work for another few months now that the transplant has happened, so my income is still not what it was before I switched to part time work. That’s why I continue to fundraise with HelpHOPELive even after the transplant.


Laura, would you recommend living donation to someone else?


Laura: I recommend organ donation to everyone. It’s an important decision, and one that must be understood and offered from a place of pure love. It’s an amazing experience! It wasn’t until after our surgery that I really realized, I saved James’ life. Wow! What a gift God has given me! If I had to do it over, I would. Give life! There is no greater gift.

James Michael McLester HelpHOPELive

Laura and the rest of James’ community came together in support


Follow James’s recovery story at helphopelive.org.

HelpHOPELive Clients In The News October 2015

October brought us falling leaves, pumpkin spice indulgence and autumn fundraising milestones! Here are three compelling client stories featured in the news this month.


Matt Collura: Annual 5K Provides Financial And Emotional Benefits

Matt Collura 5K Run/Walk

In March of 2011, the Collura family, of Monroe Township, N.J. was rocked by a shocking accident: a snowboarding injury left then-28-year-old Matt Collura reliant on a wheelchair for mobility as he coped with a life-threatening traumatic brain injury. From acquiring specialized accessibility equipment that would keep him safe in his home to pursuing intensive rehabilitative therapy, Matt was facing a long emotionally and financially draining road to recovery. His friends and family members turned to HelpHOPELive for support. With Matt’s passion for athletics and running, a friend suggested planning a 5K fundraiser in his honor to rally community members to help cover the uninsured expenses as a result of injury.

Matt Collura 5K Run/Walk 2015

The Matt Collura 5K Run/Walk celebrated its 5th anniversary on October 11, 2015. The event draws hundreds of supporters who enjoy the opportunity to give back to their friend and neighbor as he continues to pursue recovery with dedication. For Matt and his family, the event is far more than an opportunity to offset vital medical expenses; the run provides a powerful dose of emotional support that keeps him striving forward. “This is a chance for [us] to participate in a day that Matt refers to as the best day of the year,” his supporters wrote on his HelpHOPELive Campaign Page. Since the accident, funds raised from the Matt Collura 5K Run/Walk have helped Matt to pursue the rehabilitation he needs to speak, walk with minimal assistance and pursue a greater degree of independence by moving out of his parent’s house and into a group home. (5K supports Monroe man’s recovery from accident)


Patrice Penny-Henderson: ‘Angel’ Aids Music Teacher With Rare Disease

Patrice Penny-Henderson Elkhart kidney transplant

A rare blood cell disease severely reduced Patrice Penny-Henderson’s kidney function, forcing the elementary school music teacher to receive dialysis three times each week to stay healthy. Despite Medicare coverage, out-of-pocket costs of $20,000 or more made a kidney transplant seem out-of-reach for Patrice. That is, until a chance encounter blossomed into an unexpected lifeline.

In 2015, seven years after she was diagnosed with end-stage renal failure, Patrice reconnected with a former co-worker, Susan Law, who was stunned to hear about her medical ailments. Susan sprang into action, connecting Patrice with HelpHOPELive and helping her to plan community fundraisers to cover her medical bills. Susan and Patrice “chose HelpHOPELive over other popular sites like GoFundMe” in order to secure a tax-exempt donation option for her contributors and expert insights from a HelpHOPELive Fundraising Coordinator. Patrice calls Susan “an angel” for stepping in to support her efforts to secure a lifesaving transplant. (Longtime Elkhart music teacher…needs kidney transplant due to rare disease)


Michael Carns: Military Vet Puts Difficulties On Display To Fundraise For MS

Michael Carns veteran MS multiple sclerosis Marine National Guard

After dedicating himself to years of service in the U.S. Marine Corps and National Guard, Michael Carns was attacked by an enemy of a different kind: multiple sclerosis (MS). The 46-year-old father of three began to rapidly losing his independence and his mobility, struggling to provide for his three children as daily tasks like cooking and using the bathroom became formidable obstacles.

That’s when Michael learned about a treatment trial in Chicago that offered hope for potentially halting the progression of his MS in its tracks. He would need to raise $150,000 to be eligible for the potentially life-changing course of treatment. Michael knew he had to do something to show his community why he needed their emotional and financial support. He reached out to a local news station and offered them a chance to film the impact of MS on his daily life.

In a video interview, Michael shows viewers what life with MS really looks and feels like, from painstakingly transporting himself to his son’s football games to coping with fears that he will not be there to walk his daughter down the aisle on her wedding day. For Michael and his children, fundraising with HelpHOPELive has come to represent a second chance – an opportunity for Michael to pursue advanced treatment that could give him back his independence. “Believe that there is hope, still, because there always will be,” affirmed his son Mikey. (Military veteran hoping for treatment to fight MS)


Get your campaign in the news! If you need help with press releases and media outreach, contact your HelpHOPELive Fundraising Coordinator today.

 

How Creating Art Can Help Your Recovery

Art can be a career, a therapeutic exercise, a stress reliever, a way to connect with loved ones or a healthy dose of ‘me-time’ in the midst of a hectic schedule.

In this post, artists identify the health benefits of creativity and explain how you can get involved in art, starting today.

colored pencils


HelpHOPELive client Gail Foster is a professional painter who is fighting spinal cord damage. In this article, Foster explains how art can be used to explore and express intense emotions during a time of medical difficulty.

Foster is joined by Dr. Pooky Knightsmith, a freelance mental health advocate, guest speaker and poet, who delivers her insights on the connection between creative expression and personal wellbeing.

art health benefits Pooky Knightsmith Gail Foster

Artists Gail Foster and Pooky Knightsmith.


 

What are the mental and physical benefits of art?

Foster: Studies have shown that art and music can decrease anxiety, improve emotional balance and even heal your immune system. Art can be a way to commemorate milestones or celebrate your recovery journey.

Knightsmith: Sometimes poetry can be used to express things which are too difficult to say out loud. The act of taking difficult thoughts and feelings and turning them into a poem can feel quite cathartic and can allow us to move on from the things that hold us down.

Gail Foster Golden Wing art

‘Golden Wing’ by Gail Foster.


 

What if I am too busy to fit art into my schedule?

Knightsmith: Art doesn’t have to be something that takes up a lot of time.  I write a poem every day: it usually takes about ten minutes…it can be very beneficial just to have a few minutes each day which are truly your own. Many people find they enjoy those few minutes and can readily find them when they begin to look.

Foster: There are always distractions in our day-to-day lives: “I have dishes to do, I can’t do art right now…I have to finish running errands, I don’t have time to paint.” My best art happens when I make time for it, no matter how small a window of time I’m working with. Give me just ten minutes of that in an afternoon and, wow, that is a great day!

New Page Pooky Knightsmith poetry poem

The poem New Page by Pooky Knightsmith.


 

What are your tips for getting started?

Foster: Whether you are starting out for the first time or getting back into art after an injury or illness, one way to get motivated is to get a group of friends together. Getting together as a group, regardless of the location, can be a motivating factor, even if your chosen mediums are different! Hobby painters, screenwriters, poets, novelists, fine artists…it’s exciting to be together and focus on a common interest.

Wish In Flight Gail Foster

‘Wish In Flight’ by Gail Foster


 

Can art help with healing after an injury or illness?

Knightsmith: While it depends on the individual, many people find that writing, in its many forms, can help them to explore difficult thoughts and feelings that surround their injury or illness. It can help simply to put our thoughts to paper – sometimes the act of writing, whether it’s a list or a play or a story or a poem, can help us to crystallize our thoughts.

Any time I’m unsure about something, I explore it in writing. There are also lots of difficult thoughts and feelings that go hand-in-hand with being a caregiver. Some are positive, some are negative and some are simply tiring. Being able to explore these feelings in words or with art can be hugely therapeutic.

Not all artistic endeavors need to be about exploring difficulties!  Sometimes, art can simply be about celebrating positive moments in your life.

Pooky Knightsmith Recovery Shines poetry poem

The poem Recovery Shines by Pooky Knightsmith.


 

What if I’m not creative or artistic?

Foster: From time to time, everyone asks themselves, ‘Can I do this?’ or ‘Is this possible?’ This inner dialogue occurs over and over and over. It’s really important to find a way to remind yourself (maybe physically) to put those negative or stress-filled voices away. About 17 years ago, I put a blue piece of tape down on the threshold of my art studio. Every time I cross the blue tape, I remind myself to leave my concerns and insecurities at the door. Put yourself there! That’s all it takes! Don’t let your internal dialogue (or thoughts about your potential or lack of potential) drive the process. Be open to everything.

smiley face ball relax zen art

Find a way to remind yourself to let go of your worries before you begin creating art, says Foster.

Knightsmith: If you feel like you don’t have what it takes to create, I’d recommend starting with adult coloring. You end up creating something really beautiful in the end without needing to have an artistic bone in your body.

HelpHOPELive: Our client Kathe Neely is a lifelong doodler and the publisher of a coloring book for adults. She adds, “I think coloring is a fantastic way to test and explore your interest in a creative outlet.  It can be budget-friendly and is wonderfully mobile. I think that the ability to start with a design that is not overwhelming and allows to you see a result fairly quickly can be very satisfying and fulfilling. You would probably find that coloring that first tester page, whether it brings out further interest or not, was a nice mental break — even if it involved just a small portion of your day.  That is an immeasurable “benefit of creativity.” ”

Kathe Neely Late Night Doodles adult coloring grownup coloring book

Sample images from Kathe Neely’s adult coloring book.


 

Do I have to share my art with other people?

Knightsmith: Sharing your work is a personal choice that depends on what you’ve created and why.  Sometimes we create things just for ourselves to help us explore and manage. Sharing art and poetry can also feel like a very intimate thing and can, for that reason, be a great way to develop trusting, caring relationships.

Foster: Whether or not you plan to share your work, put your heart in it, and do it for yourself, not for anyone else. You can give your art away as gifts, share it with the public, share it with just a close circle or keep it for your eyes only. It’s up to you.

friends

Keep your work to yourself, or share it with others. The choice is yours.


If art has impacted your life, share your story with us on Facebook or on Twitter!