Tag Archives: bills

Touched By Transplant: What It Feels Like To Get A Heart

In August 2015, John “Skeeter” Coleman was diagnosed with end-stage heart failure. In October 2015, Skeeter and his family began fundraising with HelpHOPELive to prepare for a lifesaving heart transplant. This is the story of how Skeeter received his new heart.

touched by transplant full


I was the “best of the worst,” the doctors said when they put me on the heart transplant waiting list. They said I’d have a heart within seven days. Fourteen days later, they told me to “keep up the positive attitude.” They told me my heart was coming.

John Skeeter Coleman HelpHOPELive heart transplant hospital

In the hospital with grandson Maxson

On the 21st day of waiting, a committee got together at the medical center to work out how to get me an LVAD as a bridge to transplant. No sooner had they convened, someone came into their meeting and said, “We just found a heart for Skeeter.” All the doctors I had worked with came running down to my room. I thought, “What is going on? This looks bad.” Then one of them came forward and said, “We found you a heart.” We hugged; it was a joyous moment.


The average wait time for a heart is about four months.


That night, the anesthesiologist came in with two orderlies to wheel me to the operating room. I said, “Let’s go. I’ve been waiting for this.” They took me to the elevator, and wouldn’t you know it, the bed got stuck and they couldn’t get it out! They kept trying and trying until I said, “This is crazy. Y’all just stop right here.” I got up, no shoes, no socks, rear end flapping in the breeze, and I said, “This is my last walk with this old heart. Leave that bed right there. We have a heart to transplant.”

They followed me right to the operating room. The doctors in the operating room were speechless, and then they all burst out laughing. That’s the last thing I remember before the operation.

Skeeter Coleman HelpHOPELive

With niece Tricia

The operation lasted six hours. When they brought me out into the recovery room, the doctor noticed I was passing a lot of blood, more blood than he had anticipated. They took me right back into the operating room, opened me back up, found a leak, repaired it, stitched me up, and I was put on a ventilator in the recovery unit for three days.

When I woke up, I couldn’t really move or see because of the anesthesia. All I saw was white. I thought I was dead. Then I heard a voice and the voice said, “Daddy!” It was my daughter’s voice.

“I can’t see you,” I said.

My daughter said, “It’s okay. You’re doing okay. But the Cowboys lost.”

And I said, “That’s terrible. But I’m alive?

She said, “Yes, you’re alive.”

Skeeter Coleman HelpHOPELive

With daughter Kelly

Five hours later I came out of the anesthesia fully, and I was alive. It was just wonderful. All my doctors came back in and told me I was doing okay. I still had in my breathing tube. The next day, the doctor just reached over and ripped it right out and said, “Take a deep breath.” That was like a miracle. I could breathe again. It was the greatest feeling in the world.

My daughter walked into the room with a stethoscope. I don’t even know where she got that thing from. She said, “How would you like to listen to your new heart?” That was amazing, just sitting there listening to the new heart beat.


62,754 people have received heart transplants since 1988 thanks to organs from deceased donors.


Fundraising For A Heart Transplant

I stayed in the hospital for almost a month as they adjusted my meds and looked for signs of rejection. When I left the hospital, I was still getting blood drawn every week. I started a new medicine after a rejection scare that cost $1,000 out of pocket for one week’s supply–it wasn’t covered by medical insurance. That right there is why you need HelpHOPELive

first time outside after 60 days

Skeeter stayed in the hospital for almost a month post-transplant

Today, I still have to return to the hospital every three weeks for heart biopsies and every two weeks for med adjustments and blood tests. That’s where HelpHOPELive donations have been incredibly helpful, for medications and doctor’s visit co-pays that are out of pocket, plus the cost of transportation. I go to cardiac therapy three days per week and physical therapy three days per week.

You never know from day to day what expenses you will get hit with. In therapy, for instance, they may recommend a special sling that isn’t covered by insurance, so you have to buy it outright. It costs $100. Then they say, well, you’re going to need this other special piece of equipment, too. That’s another out-of-pocket expense. These expenses can add up to the point that they eat you alive.

10th heart biopsy Facebook

Skeeter at the 10th biopsy of his new heart

Doctors may advise you to switch to different medications, or they may even double up on medications. Sometimes medical insurance only pays for a 30-day supply once a month, and they will not increase that to twice a month even if the doctors recommend it. Other times, you’ll get hit with a bill for something unexpected. I got a bill the other day for $38,675 for X-rays. You sit around and wait for answers, and you think, “How can I pay these bills? I can’t do it.” You just never know what’s coming. Insurance can’t pay for everything and neither can supplemental insurance. That’s why HelpHOPELive is important to me.

with old heart

“You just never know what’s coming,” said Skeeter, pictured with his old heart


According to data from 2012, 76.8% of heart recipients are still living five years post-transplant.


“I’m Glad They Kept Me Alive”

My advice to others is to stay positive and get rid of negative people. Concentrate on making other people aware of all of the good things that organ donation can do. I’ve got a positive attitude, and I try to stay busy fundraising, managing my finances and doing my exercises. I’m looking forward to figuring out how I can help people to be more aware of organ donation and what it means to be willing to donate their heart.

I woke up today. I can breathe. I can walk. I’m alive. I’m healthy. I have friends like all of you.

I’m glad they kept me alive. Life is good. Here I am, and I can see the sun shining.

With son Alan Coleman


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Follow our Blog to learn what happened when Skeeter met the wife and children of his heart donor!

CEO David Bakelman Challenges NY Times Crowdfunding Article

This week, we covered a New York Times report indicating that many individuals are turning to crowdfunding to raise money for their medical expenses or associated financial burdens. In a letter submitted to the editors of The New York Times, HelpHOPELive CEO David Bakelman challenged the notion that crowdfunding platforms are a surefire avenue for medical fundraising. Here is David’s letter to The New York Times.


 

David Bakelman HelpHOPELive

Re: Managing Health Costs with Crowdfunding

Crowdfunding platforms present many concerns that often go overlooked, particularly when fundraising for health costs.

The first issue is accountability. Most crowdfunding platforms do not include a way to verify that funds raised are spent on a patient’s medical needs.

Second, taxes are an issue. Raising funds through a nonprofit organization can lead to tax deductions for donors and the funds can be issued tax free to patient beneficiaries. That’s not the case with many crowdfunding platforms.

Finally, crowdfunding for health costs can impact a patient’s eligibility for Medicaid and SSI. Crowdfunding donations are counted as assets when Medicaid eligibility is considered. The amount of “countable assets” you can have and still qualify for Medicaid is usually about $2,000. If a patient exceeds this relatively low limit, they could lose their access to Medicaid and have to pay even more.

Overall crowdfunding tends to be a one-time opportunity without long-term sustainability. For patients who have a transplant or are living with a catastrophic illness or injury, challenges associated with uncovered medical expenses last for a lifetime. For example: yearly costs related to a spinal cord injury can top $1 million.

David Bakelman is the chief executive officer of HelpHOPELive, a nonprofit organization that has helped raise over $100 million for over 7,000 patients and families affected by transplantation, catastrophic illness or injury.

HelpHOPELive (helphopelive.org)

Two Radnor Corporate Center, Suite 100

100 Matsonford Road

Radnor, PA 19087

800.642.8399

 

What do you think? Join the conversation on Facebook or on Twitter.

Crowdfunding Your Medical Expenses: 5 Myths

As The New York Times reported in January, many patients are turning to crowdfunding to raise money for major or unforeseen medical expenses. Crowdfunding sites are jumping on the bandwagon in droves, rapidly adding medical fundraising options to their existing rosters of services.

HelpHOPELive, medical, medical expenses, crowdfunding, fundraising, medical bills

At HelpHOPELive, we’ve been helping patients fundraise since 1983. As new digital fundraising options emerge, it’s important for all potential fundraisers to understand exactly how crowdfunding works. While crowdfunding looks like an easy way to raise money quickly, make sure you consider these factors before you dive in.


 

Myth 1: Donations to my cause will be protected.

Many modern crowdfunding platforms do not include a way for donors to verify that the money they donate will be spent on a patient’s medical costs. In fact, as Charity Navigator warns, some people routinely exploit crowdfunding sites and manipulate donors in order to misuse donations for their own purposes.

HelpHOPELive tracks and verifies all donations, but if you work with a crowdfunding platform, donors that you contact may feel justifiably uncertain about donating to a cause without any sort of guarantee that their contributions will be collected and utilized to cover legitimate expenses.

Myth 2: I can keep my Medicaid coverage.

Donations you receive through HelpHOPELive fundraising will never endanger your Medicaid coverage. If you work with a crowdfunding platform, however, you may risk losing your benefits.

When Medicaid eligibility is determined, donations you receive through a crowdfunding platform will be counted as assets. The limit for “countable assets” to qualify for Medicaid is only $2,000. In other words, if you net more than $2,000 in donations through a crowdfunding platform, you may lose your access to Medicaid and incur sky-high additional expenses for your treatment.

Myth 3: Donors will naturally donate additional funds over time.

You may believe that your only obligation is to set up a crowdfunding site and wait for the donations to roll in. In reality, as the New York Times reported, most donors will not give to the same cause multiple times unless they clearly understand the link between their donation and a particular outcome for a patient.

Successful fundraising is a long-term process, not a short-term frenzy. While crowdfunding sites may generate initial buzz, you will likely need to raise money for medical costs throughout your lifetime. Donors tend to be reluctant to donate multiple times to the same cause, but HelpHOPELive can help you to fundraise creatively to increase the chances of repeat donations.

Myth 4: Strangers will donate to my cause.

Crowdfunding platforms may make it seem like virtual strangers will readily donate to your cause once you sign on. In most cases, the vast majority of donations to your cause are going to come from people you already know.

You can spread the word by leveraging your existing social circles, including extended family members, community organizations, places of worship and other potential donation sources.

Myth 5: Crowdfunding is free.

No fundraising effort is entirely cost free. HelpHOPELive charges 5% for operational costs with a 2.65% credit card fee* as applicable and no additional per-transaction fees. Medical fundraising fees will differ by provider, and as The New York Observer reported in 2014, some fundraisers have been unpleasantly surprised by the operating costs and donation fees deducted by crowdfunding platforms. Be sure you understand the associated costs before you choose a network to rely on for fundraising.

GoFundMe: 7.9% charge + $0.30 transaction fee (in the U.S.)

GiveForward: 7.9% charge + $0.50 transaction fee

Fundly: 4.9% charge + 3% credit card fees

Indiegogo: 9% fee + third party processing fees of 3-5% (platform fee decreases to 4% only if you meet your fundraising goal)

Medical crowdfunding and HelpHOPELive

So what can I do to raise money? Fundraising through HelpHOPELive is the most secure and supported method for raising money to cover your medical expenses. You receive the full benefit of over three decades of fundraising expertise, and your donors can rest easy knowing that every dollar they donate will be tracked and allocated responsibly. To learn more about fundraising with HelpHOPELive, click here.

What do you think about crowdfunding for medical expenses? Join the conversation on Facebook or on Twitter.

 

* Effective October 1, 2016.