Tag Archives: medicare

My Health, Independence and Financial Challenges 5 Years After Injury

Danielle Watson became paralyzed from the waist down in June 2011. In May 2016, Danielle completed her master’s in occupational therapy.


People are shocked all the time that I drive and live independently. I don’t blame them, because I didn’t know what people with disabilities could do either, until my injury. I have managed (with help from others) to figure out how to live independently.

Danielle Watson HelpHOPELive

“I have managed to figure out how to live independently.”

I consider my wheelchair to be an extension of myself at this point. It really bothers me to hear the terms “confined to a wheelchair” or “wheelchair bound” because the wheelchair is an awesome machine that allows me to be independent. I also rely on my NuProdx shower bench and I now have one on the toilet, too, to prevent pressure sores. My car is also an important part of my independence. It has been adapted with hand controls.

I have had increasing complications with my health over the past 5 years. Unfortunately, spinal cord injury affects many of my bodily systems, so I must continue to adapt. The average person doesn’t realize that I am not just sitting. That is the easiest part. Spinal cord injury affects all body systems. I usually keep this hidden from people and try to portray that I have everything together. However, I constantly have to think about my bladder, my digestion, my bones, my joints, my body mechanics, avoiding pressure sores, my temperature, my water intake…the list goes on!

Danielle Watson HelpHOPELive

Danielle fell 250 feet. The injury “affects many of my bodily systems”

Therapy has had a huge impact on my life. I am so grateful to have had so many good health professionals after my injury. I already wanted to be a therapist before my accident, but my injury introduced me to occupational therapy, which I had never heard of before. My hope is that I can use my personal experience and empathy to help others after a life-altering injury.

I have faced significant financial challenges since the injury. By the time I get my license to practice OT, I will have been unemployed for almost 6 years. I have student loans from undergraduate schooling that I have been unable to pay off and they have been accumulating interest. I had to decide if I would be able to live my life on social security or minimum wage or take on the loans and the hope for a better life. I am trying to do the right thing and support myself financially.

Danielle Watson HelpHOPELive

“I am trying to do the right thing and support myself financially.”

HelpHOPELive has thankfully shielded me from many of the medical expenses that go along with this injury. I don’t know how I would survive without it. There are a lot of supplies and pieces of equipment that I need that Medicare doesn’t cover. Sometimes Medicare makes errors and I get stuck with huge medical bills. I have lived in five different places within the last 5 years and I have had to renovate them all to make them accessible. When I begin to work, I will lose Medicare and I will have private insurance, but I am thankful to HelpHOPELive for helping me cover deductibles, medications and procedures through fundraising.

The HelpHOPELive campaign in my honor has been extremely important because I don’t have to agonize over purchases or costs that are medically necessary or helpful in maintaining my independence, which really contributes to my mental health. I have so many other worries with my spinal cord injury that it is really helpful to have one less worry.

Danielle Watson HelpHOPELive

Fundraising helps Danielle to live independently.

I was introduced to adaptive sports 6 months after my injury. I skied as soon as I was medically able. Oregon Adaptive Sports has been crucial to my recovery–I received scholarships for the lessons I needed to learn to ski and they have been a family to me. I met most of my friends though OAS and I continue to be a participant and an advocate for the organization. HelpHOPELive helps with the expenses that are not covered by the scholarships I get.

Danielle Watson HelpHOPELive

Danielle participates in adaptive sports, triathlons and marathons.

I love to travel now just as much as I did before my injury. Having the right equipment really helps. I have a shower chair that comes apart and fits into a small square bag. That has made travel a lot easier, and I bring it with me everywhere. I want to travel the world but currently it is easier and more accessible for me to travel within the United States because of the Americans with Disabilities Act (ADA).

Danielle Watson HelpHOPELive

Travel is easier for Danielle with the right adaptive equipment.

I look forward to being self-sufficient again. I look forward to buying a home someday that I can renovate for my needs, and I look forward to getting into a routine that will allow me to finally get my finances under control.

Thankfully, I have a degree in philosophy, so I had a lot of time to think about big questions before my injury. I believe in the power of your thoughts and your words to manifest your life. I try my best to shed the thoughts that don’t serve me well and think positively. I have gotten better at this over time and I believe it is something you can practice until it becomes more natural. Having a disability can be alright if you have access to the right equipment and support, which is why HelpHOPELive is so necessary.

Danielle Watson HelpHOPELive

“Having a disability can be alright if you have access to the right equipment and support.”


Learn more about Danielle and make a contribution in her honor at helphopelive.org. Follow her blog for ongoing insights on life and possibilities after injury.

6 People Who Inspire Us With Courage, Strength and Selflessness

Our signature fundraising gala Live It Up! kicks off at 6 p.m. on Friday, September 23, 2016 with a VIP reception for our generous sponsors and this year’s Live It Up! Awardees. Doors for the main event open at 7 p.m. Get your tickets today!

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Each year we honor individuals who have impacted our organization and their communities with their bravery, selflessness and strength with our annual Help, HOPE and Live Awards.


This year’s Help Award goes to…The Zeldathon Team for excellence in fundraising.


In December 2015, a group of avid video game players and live streamers joined forces for a 150-hour “The Legend of Zelda” gaming marathon. Streaming their activities live, the gamers collected donations for HelpHOPELive throughout the course of the marathon. Gamers encouraged donations from viewers at home by initiating “donation trains” and incentives, turning watching gameplay into an interactive and collaborative philanthropic experience.

Zeldathon Hope raised over $250,000 for HelpHOPELive through the generosity of contributors in over 40 countries. The funds raised were used to meaningfully contribute to HelpHOPELive’s mission to support community-based fundraising support for people with unmet medical and related expenses due to cell and organ transplants or catastrophic injuries and illnesses and to provide one-time emergency assistance grants for families facing an immediate financial need due to a medical crisis.

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“We pursued HelpHOPELive because we wanted to work with a charity that could make a direct impact through donations,” explained Zeldathon executive director Matthew Moffit. “We’re creating something more than just a marathon – it’s a real community, dedicated to the forces of good.”

Moffit, Zeldathon assistant director Liz and spokesperson Brooke are among the dedicated gamers who devoted their personal time to planning, managing and streaming the nonstop gaming marathon. They hope to support HelpHOPELive’s mission again during a future Zeldathon.


The HOPE Award goes to…Maria Weaver-Hollowniczky and Elizabeth Casperite for living donation and organ donor awareness.


Liz Casperite was diagnosed with polycystic kidney disease in 2005. Her kidneys grew from fist-sized to football-sized. She joined the transplant waiting list in 2013, facing an average wait time of 4 or 5 years.

Liz and her family initiated a social media push to help Liz cut her wait short by finding a living kidney donor. Maria Weaver-Hollowniczky, a friend of a friend, saw Liz’s social media efforts and felt moved to step forward as a potential living donor.

Liz received the gift of life from Maria on September 17, 2015. Liz and Maria became inseparable during transplant preparations and have stood by each other ever since, partnering to share their story and lobby Congress in support of living donor protection legislation. They attended the 2016 Transplant Games in Cleveland, Ohio.

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Fundraising with HelpHOPELive will be an ongoing effort for Liz, who still faces post-transplant medical expenses from co-pays and travel for follow-up appointments to a lifetime of expensive antirejection medications. Liz must maintain Medicare A and B coverage until 2018 to financially protect Maria in case of post-transplant complications—something they hope to change for future living donors through their advocacy of the Living Donor Protection Act.


The Live Award goes to…John Michael LeMoine for inspiration after injury.


In July 2014, John Michael LeMoine was an Air Force airman enrolled in a firefighting technical school. On a day off, John was goofing around on the beach with his buddies. To avoid hitting a child playing on the beach, John jumped into the air to try to flip over him. He kept the child safe but shattered his cervical spine in the process.

It took six weeks of intensive therapy before John could wiggle his big toe.

John devoted himself to exercise-based therapy. Once insurance stopped covering his physical therapy, he turned to HelpHOPELive to fundraise for a lifetime of out-of-pocket medical and related expenses. In March 2015, John was able to stand independently for the first time since his injury.

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John and his mother, Lori, document his progress and his post-injury adventures, including skydiving, off-roading and adaptive sports with support from the Air Force Wounded Warrior program. “He can now make a sandwich,” Lori wrote in February 2016. “It seems so simple, but this was an impossible task before. These small achievements give him his independence back.” John embodies what it takes to build an engaged, motivated and multi-faceted new life after injury.


This year’s awardees will be honored at Valley Forge Military Academy’s Mellon Hall on September 23 from 7 to 11 p.m. among HelpHOPELive’s generous local supporters, board, staff and friends. Join us to celebrate the incredible milestones clients, volunteers and donors achieved in 2016!

Mending A Broken Heart: Love And Transplantation

Rick Brittell was diagnosed with congestive heart failure in 2011. In April 2014, Rick and his wife, Susie, moved from their home in Boise, Idaho to a trailer in Salt Lake City, Utah for 2 ½ months so that Rick could receive a left ventricular assist device (LVAD) as a bridge to a heart transplant—his only option for a healthy life. Rick and Susie returned home to Boise but left their home once again in April 2015 to move into a Salt Lake City apartment. Rick received his transplant in September 2015. Rick and Susie will finally be able to return home in March 2016 after a full year spent away from home. They have been fundraising with HelpHOPELive since January 2015.

Rick and Susie Brittell HelpHOPELive

Rick and Susie Brittell.


Why did you make the decision to wait before getting Rick listed for a transplant?


Rick: I could have been listed for transplant right after I received the LVAD but I chose to wait until April 2015 when my Medicare took effect. Had I proceeded right away with being listed, the procedure would have been covered but not the post-transplant medications, leaving me to cover $7,000 to $14,000 out-of-pocket each month. Once Medicare took effect, the surgery and the medications were both covered and the post-transplant monthly medication costs dropped to $400 to $600 per month.

Once listed, multiple factors influence how long a candidate waits for a transplant, including the candidate’s health and the number of organs available in a particular region. According to the United Network for Organ Sharing, “you may receive an organ that day, or you may wait many years.”

LVAD heart transplant

Rick lived with an LVAD until his transplant.


How did you feel when you found out you would have to relocate?


Rick: It was a shocker. When we skyped with our 3-year-old grandson, he would ask, ‘Why did you leave me?’ I couldn’t even talk to him because it tore me up. We were suddenly cut off from our family and friends and we had to make a whole new life for ourselves.

Transplant candidates must be able to leave home and come to a specific medical facility as soon as they receive word from their medical team that an organ is available. That’s why some candidates are asked to relocate close to that medical facility while they wait for “the call.”


How has the waiting process affected you emotionally?


Rick: I couldn’t drive for 2 years after I got the LVAD. I became completely dependent on my wife to take me everywhere for everything from a medical appointment to a simple trip to the store. After 40 years of employment, I had to stop working cold turkey. I had to deal with feelings of guilt and worthlessness associated with that. My freedoms were being taken away.

Susie: It was a sobering experience to discover who our true friends were and how our family would support us. We had to learn to do it on our own and figure out how to make it work with little support.

Rick: It’s stressful, but we have chosen not to hold onto animosity. But now when I tell someone, ‘I’ll be there for you,’ I take it very seriously.

The average wait time to receive a heart transplant is six months to one year. A transplant candidate can be removed from the waiting list if his or her health significantly improves or deteriorates.

 

Pie Night HelpHOPELive fundraiser

Support groups helped Rick and Susie find solace and community.


What advice would you give to another family waiting for a transplant?


Rick: Talk to someone who has gone through it. Learn about the procedure, the medications you’ll be taking and the side effects, and prepare for them. Don’t think that life will be perfect after the transplant. My body was torn up for weeks as I adjusted to the medication, and I pushed people away from me and felt mentally foggy. When you get that call, you will go from sky-high feeling lucky to get a heart to rock-bottom feeling guilty, sad or angry that someone had to pass away for you to get the transplant. You will swing back and forth, but you WILL level out again.

Rick Brittell heart transplant

Rick after his lifesaving transplant.

Susie: Do not think that you can shoulder the burden alone. As a caregiver, be patient and know that the person you love might get belligerent, angry or moody, but that is not the same person you love. The person you love will be back after a while. Find someone to unload onto so you don’t take out your frustrations on your loved one.

72 percent of American adults experience financial stress at least some of the time, and 26 percent experience financial stress most or all of the time. Start fundraising for a transplant as soon as possible to reduce the amount of financial stress you’ll have to deal with as you prepare for transplant.


What is life like after transplant?


Susie: I’m just so glad the waiting part is over. We are different people from when we first left for Salt Lake City. It has made us less self-absorbed and has opened our eyes to how narrow-minded you can become.

Rick: Hot dog, I’ve got a new lease on life now. I can look forward to seeing my family and my grandkids again. Before the LVAD, I could walk about 50 feet per day on oxygen before I was exhausted. Now I can walk 2 to 3 miles. I have realized that I can do this, and I see the light at the end of the tunnel. The journey is not over but there’s a lot more hope than there used to be.


Rick and Susie continue to fundraise with HelpHOPELive for post-transplant expenses including relocation, medical appointment co-pays and a lifetime of immunosuppressants.