Tag Archives: tips

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.

Your Next Selfie Can Make The World A Better Place

During the holiday season, it’s easy to get caught up in the hype and become fixated on shopping and spending. #GivingTuesday is meant to counteract those rampant indulgences by encouraging all of us to donate to worthy nonprofit causes.


What is an #UNselfie?


An #UNselfie is a picture of you showing how you support worthy causes during the holidays or all year round. An #UNselfie could explain why you support a particular cause, highlight your #GivingTuesday plans or even reveal a random act of kindness that you took part in this year.

Little by little, your #GivingTuesday actions and #UNselfies can help to perpetuate a massive movement that encourages all of us to give just a little bit more during the holiday season.

#UNselfie #GivingTuesday

You can also use your #UNselfie to highlight a HelpHOPELive Campaign that you support in order to gain traction for #GivingTuesday on December 1, when there are no credit card fees on all donations to HelpHOPELive Campaigns.


What does an #UNselfie look like?


Here are a few examples from our staff. Find additional #UNselfies on our Facebook page.

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How can I join the movement?


You can join the #UNselfie movement in three easy steps:

  1. Download and print the #UNselfie template
  2. Write down an act of kindness, a charitable cause or a selfless wish for the holidays
  3. Share on social media with the tags #UNselfie and #GivingTuesday. Add #HelpHOPELive and #GiveHOPE if your #UNselfie involves a HelpHOPELive Campaign!

Visit our website for additional #GivingTuesday tips and suggestions.

Love, Commitment and the Honest Life of a Caregiver

For National Family Caregivers Month this November, we’re profiling individuals who have taken on a caregiver role to support their loved ones. We interviewed Rich Reedy, who has been supporting his wife since a 2014 accident left her with an incomplete spinal cord injury that requires constant care.


Do you consider yourself a caregiver?


I absolutely do consider myself a caregiver. We are fortunate enough in our household to have many people in our circle who we consider caregivers, including a young woman, Judy, who comes in twice a day to support [my wife] Eileen; and Patrick, Bridget and Jacquelyn, our three children, who help out significantly. I serve as a caregiver coordinator, in a manner of speaking: I’m not a boss and not a commander, just a “keeper of the schedule”!

Eileen Reedy HelpHOPELive

Rich Reedy (left) with Eileen Reedy (center) and family.


Is emotional support as important as physical support when you care for someone with an injury?


In my experience, emotional support is a vital part of overall healing. If my wife is not in a good place or if one of our caregivers is unhappy, that attitude is definitely contagious. It’s important to me to try to keep people happy. We want people to support Eileen because their hearts are in it 100%, not because they feel like they NEED to be there. If their hearts are not in it, we do whatever we can to get them there, so that emotional connection is maintained.


What helps you to find relief when you are stressed or upset?

I find my own ways to relieve tension but, in all honesty, when a bad mood starts, it often has to clear on its own. Eileen continues to impress us with her commitment to therapy and progress. Seeing that progress in action is a great motivator and encourager. To me, it’s important to reinforce the good, for my own benefit and for the benefit of other caregivers. I play a role in helping others by reminding them that they are doing a great job and are making an important contribution. Just like in life itself, in caregiving it can make a big difference to be positive and to look for ways to ease the stress and the repetition, so you can continue to take on challenges day after day.


What is the best part of caring for a loved one? The most difficult part?


The best part is loving Eileen and supporting her on her healing journey. Caregiving really can change who you are. I was a man of no patience – now, I am a man of SOME patience, at least! I’ve still got a long way to go.

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The worst part is struggling to find time to unwind and clear your mind and finding ways to avoid self-criticism. My day is composed of getting up early and making good use of every spare moment in the day. I run my own business out of my house, so I’m fortunate to be able to work in between assisting Eileen and supporting the rest of the care team. By 6 p.m., I have no brain left! Sometimes I just like to take a few minutes to sit and unwind at the end of a day. I honestly struggle to remember what my life was like before I took on this role!


Which words would you use to describe caring for a loved one?


The two words I’d use to describe caregiving would be love and commitment.


Do you have any advice for other families who are learning about caregiving after injury?


First, I would advise them to lean on professional support. While Eileen was in the hospital, the staff really showed me what my life would look like, even though I didn’t realize at the time that they were preparing me for that reality! I didn’t know that it was going to be a life-changing experience that would last longer than weeks or months. Professional support like that can really help.

Eileen Reedy HelpHOPELive

Eileen with a service dog, Moose.

I’d encourage people who are about to become caregivers to take a look at caregiver resources like books and manuals. Having a guide helped me a lot – I turned to a book called Taking Care of Yourself While Providing Care. The book is written for caregivers who care for people with spinal cord injuries, but its lessons are relevant to any caregiver. Managing self-care is something that professionals and books will always emphasize; it’s as important as ever to take care of yourself when you become a caregiver, if not more important. If you’re not in a good spot, you can’t help anyone else.

My last piece of advice would be to consider accepting outside help. Our twice-per-day caregiver, Judy, has become like a part of our family, but she still has her own life and her own world outside of us. That means we can chat, talk and laugh with her and those interactions don’t overlap with the rest of our family life. It can be a really nice diversion, and that person also comes in with a “clean slate” and not a host of other worries and long-term concerns to bring to the table. She can give Eileen her full concentration, which is helpful for all of us.


We’ll be celebrating caregivers all month. Have a caregiving story to tell? Reach out to us and you could be featured in an upcoming Blog post!

Finding Joy After Injury: 11 Quotes From Dan Gottlieb

Here are 11 powerful quotes from Dr. Dan Gottlieb on love, loss and recovery after a spinal cord injury. Dr. Gottlieb became paralyzed from the chest down in a car accident in 1979. Having survived years of struggle and personal loss, today, Dr. Gottlieb maintains a private psychology practice, lectures and trains health care professionals, and hosts WHYY Philadelphia’s Voices in the Family broadcast.

Dr. Dan Gottlieb, Voices in the Family, NPR, WHYY

All content provided courtesy of the Christopher & Dana Reeve Foundation via the Foundation-hosted webinar “Dr. Dan on Finding Joy,” August 5, 2015.


On Redefining Joy After Injury:

The definition of joy can change based on an individual’s abilities and circumstances. With a broken neck, I could no longer be the person I thought I should be or the person I would have been or wanted to be. I had no choice but to be the person I am today. When you give up the battle to be someone or something else, you start to look at the world differently. You can lower the bar to what gives you joy; you lower that bar low enough and pure joy is easy to find.

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Take time to appreciate small blessings.

When you’re no longer pursuing an artificial definition of happiness, all of a sudden, the air smells cleaner. At this moment, perhaps you can breathe without coughing. Joy is right there, in that moment.


On Finding Joy By Helping Others:

Joy happens most often when we’re not thinking about ourselves. We are hardwired to help each other. That’s why when someone suffers or is crying, our hearts open. When you want joy and want to feel good, help another feel good, whether that being is a child, an adult, or an animal. The act of expressing care and compassion brings joy. If you don’t feel it, help someone else feel it, and then you will feel it yourself.

caring for child

Caring for others can help you feel joyful again.


On Finding Joy Through Gratitude:

I find joy whenever I: realize that this day is precious; appreciate the fragility of life, knowing deep down that this might be our last day, our last year or our last summer.

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Viewing life as precious can improve your outlook.


On Accepting Love:

Fear and resentment interfere with our ability to experience love. Let love contribute to the healing in [your] heart. Love is the only vehicle that can help us find peace. On my deathbed, I want to be surrounded with love and be able to love until my last minute. I want to feel that love until my last breath.

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Fear can make it difficult for us to accept love.

The most difficult and the most generous part of love comes when someone you love suffers. Be with them. When I find myself in a deep, dark place, I want to be with someone who loves me enough to sit there with me, not a cheerleader to tell me there’s light at the other end. Sit with me in my helplessness and then I will feel your love.


On Overcoming Judgment From Others:

Too many of us see ourselves based on our wheelchairs. We have to see ourselves as complete people. All of us have been [judged] based on the color of our skin, or what we believe, or where we pray, or what we’ve done. Very few people are able to look into our eyes and see our heart and soul. Make a heartfelt commitment to never place that kind of judgment on someone else. When you encounter another, look into their eyes, acknowledge their humanity. That alone will make you feel better.

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When you meet someone, look in their eyes and acknowledge them.


On Discovering Self-Love:

There’s an old Sufi saying: ‘When the heart weeps for what it has lost, the spirit laughs for what it has found.’ Put your hand over your heart and see if you can find kindness, compassion and even love for this [person] whose life has been torn apart.

mirror reflection

Can you find love for the person you see in the mirror?

No one is going to understand your suffering as well as you do. Take a half hour a day to connect with [yourself].


On Pushing Through Pain:

Pain is a demanding companion. You try to look outside, and the pain says, NO – you’re paying attention to ME. If we can sit with that pain and have a heartfelt wish for compassion and kindness for everybody in the world who feels more pain than we do in that moment, it helps us get out of our heads. It changes the story, and that is everything.

ocean gray cloudy gaze

Send out a wish for compassion to combat your pain.


On Humor:

If I were asked to consult on the second edition of the Ten Commandments, one of my commandments would be, ‘Thou shalt not take thyself too seriously.’

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“Thou shalt not take thyself too seriously.”


Want to share your favorite quotes about disability or injury? Share your thoughts with us on Facebook or on Twitter.

25 Medical Fundraising Tips You Can Use Today

Need to give your campaign a boost? Here are 25 powerful fundraising tips from HelpHOPELive Fundraising Coordinators that you can start using right away.


Asking For Auction and Raffle Items

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1. Think about the local businesses you visit on a regular basis, like bakeries, family-owned grocery stores, restaurants, hair salons, boutiques or even your dentist’s office. Ask each for a gift certificate donation.

2. When asking for item donations from local businesses, bring your HelpHOPELive Appeal Letter and Gift In Kind Form to help explain your story and the tax advantages of donating to your HelpHOPELive campaign.

3. Ask local organizations to sponsor your next fundraising event. You get reduced-cost products or services, and local businesses get exposure!


Getting More Donations

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4. Engage former classmates for donations.

5. Update your HelpHOPELive Campaign Page regularly, and edit the About section of your Campaign Page if you reach a major medical milestone. Pictures and updates help contributors feel more connected to your cause.

6. Create a YouTube video that explains your personal journey and asks viewers for donations.


Improving Events

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7. Coordinate your fundraisers with upcoming holidays. How about a first day of summer car wash, or a Father’s Day outdoor barbeque?

8. Sell chocolate bars with a custom HelpHOPELive label at outdoor events. Set up a table at your town’s next community fair or summer festival.

9. Add bonus events! Add a bake sale to your garage sale. Add a silent auction to your spaghetti dinner.

10. Sell HelpHOPELive wristbands at your next event. Ask your Fundraising Coordinator for details.

11. Use customized HelpHOPELive materials like flyers and brochures to spread the word. Your Fundraising Coordinator can show you how.

12. Turn a fundraiser into an eating competition. Bump up your next fundraising barbeque with a burger eating challenge! Charge admission for teams or individuals and offer prizes for the winner(s).


 Uniting Your Community

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13. Create a t-shirt for your supporters that includes a shortened link to your HelpHOPELive Campaign Page.

14. If donors have questions about HelpHOPELive, send them a helpful infographic.

15. Share your Campaign Page with extended family members so they stay in the loop.

16. Personalize thank-you notes for people who donate to your campaign. A small gesture goes a long way.

17. Thank event attendees and sponsors in social media posts. On Twitter or Facebook, use the @ sign to “tag” businesses or friends in a post.


 Fundraising On A Tight Budget

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18. Create a donation coin bank with the HelpHOPELive logo on it. Ask local businesses to display it. You Fundraising Coordinator can give you a customized coin bank label to support your HelpHOPELive campaign.

19. Auction off time instead of items! Ask friends to donate tax preparation help, house cleaning, babysitting or even piano lessons.

20. Share event registration pages on Facebook and Twitter so your friends can easily RSVP.


 Getting Help

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21. Engage your local Moose Lodge, Elk Club, Masonic Temple or Knights of Columbus organization for volunteers to serve as event staff if you or someone you know is a member,

22. Ask National Honor Society students, Boy Scouts and Girl Scouts to volunteer as staff members at your event.

23. Check in with your Fundraising Coordinator if you are planning an event. We can provide customized HelpHOPELive materials, press releases, creative event ideas and much more!


Thinking Big

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24. If an event is successful, make it an annual affair! Ask your Fundraising Coordinator for tips.

25. Through pictures, videos or updates, show donors exactly how they have improved your life with their contributions.


Find more campaign-boosting tips from HelpHOPELive’s expert Fundraising Coordinators on Facebook and on Twitter. Fresh tips are posted every Tuesday.