Tag Archives: Heart Transplant

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


HelpHOPELive, Donate Life Month, donate life, Touched By Transplant, transplants, kidney transplant, liver transplant, pancreas transplant, transplant costs, transplant medications, meds, paying for transplant

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

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.

pat1

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.

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.

 

Meet Volunteer of the Year Award Honoree Chris Kanter

We present our 2015 Volunteer of the Year award to Christine V. Kanter for outstanding service and dedication to HelpHOPELive.

Chris first began contributing to HelpHOPELive, then the National Heart Assist and Transplant Fund, in 1983, as one of its founding employees. She joined a powerful community of individuals working to empower heart transplant patients to fundraise for a procedure still considered “experimental” and therefore not covered by insurance. Chris witnessed the financial and emotional impact of transplantation in a family member and used that awareness to fuel her service to HelpHOPELive.

Pat Kolff and Christine Kanter 1983 NTAF NTHAF heart transplant HelpHOPELive

Christine (right) with HelpHOPELive co-founder Pat Kolff in 1983

“Going to work every day was exciting,” Chris recounted in a HelpHOPELive interview. “The need was there, and we were there for our patients at every twist and turn as the field of transplantation progressed…It was energizing – what we did worked!”

After 20 years of devoted service in the Patient Services department, Chris retired from her position and joined the HelpHOPELive Board in order to continue serving the organization. Christine was instrumental in planning the first-ever HelpHOPE-Live It Up! annual fundraising event in 2013 to raise funds and awareness for HelpHOPELive. After helping to launch the event, Chris served as its co-chair in 2014 and participated in 2015 as an active member of HelpHOPELive’s Live It Up! event committee.

Heather Moore and Christine Kanter HelpHOPE-Live It Up!, Live It Up 15, LiveItUp15

Christine (right) with her HelpHOPE-Live It Up! co-chair Heather Moore

During her quarter-century of service to HelpHOPELive, Chris has attracted loyal supporters in her extended community to the organization’s cause through word-of-mouth and home fundraising events. A friend of HelpHOPELive founders Dr. Jack and Patricia Kolff, Chris is a founding member of the Kolff Society, a giving society whose members strive to assist HelpHOPELive in furthering its mission to reach families in need across America by providing cumulative gifts of $1,000 or more each year.

Christine Kanter HelpHOPELive NTAF NHTAF

Christine continues to passionately support HelpHOPELive

“I cherish my involvement with HelpHOPELive,” Chris said. “For…30 years we have helped people in need – I want that to continue. I give to HelpHOPELive because I want to support the passion [and] the hope.”

HelpHOPE-Live It Up! logo Live It Up! Live It Up 2015 annual event charity galaJoin us at HelpHOPE-Live It Up! on October 16 as we honor Chris for her service and dedication to our mission.

Each 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.

7 Amazing Books About Transplant And Disability

Summer is here! No trip to the beach or backyard barbecue is complete without a story that makes you laugh, cry, gasp, think or dream. Here are 7 amazing books that highlight the daily triumphs and struggles that come along with an injury, chronic illness or transplant.


 

7. Where Is The Mango Princess? by Cathy Crimmins

 

where is the mango princess

Topic: Crimmins’ husband, Alan, sustains a traumatic brain injury in a speedboat accident. As Alan copes with the effects of his brain injury, Cathy must learn to care for a man she doesn’t understand anymore.

Read It If You Liked: The Curious Incident Of The Dog In The Night-Time

Reader Review: “This book can be a difficult book to read because of the deeply emotional subject, but is a touching memoir told with a great deal of humor, and most of all… honesty.”

Sneak Preview:

“But all of a sudden Al stops talking and turns to me. “I want to call Cathy.”

I laugh lightly. “Al, I’m here. You don’t have to call me. Here I am.”

“No, I want to call Cathy. The Other Cathy. The one at home.””


 

6. Letters To Sam by Dan Gottlieb

 

Letters to Sam Gottlieb NPR

Topic: Gottlieb, paralyzed in a car accident, writes compassionate and insightful letters for his autistic grandson, Sam, afraid he won’t live to see Sam come of age. Gottlieb is the host of NPR’s Voices in the Family broadcast.

Read It If You Liked: Tuesdays With Morrie

Reader Review: “Letters to Sam is a touching, soul-provoking work of art which I could not put down. I read the book in one day and did not want it to end. As Dan Gottlieb [wrote] to his grandson, Sam, I could feel my own heart opening up.”

Sneak Preview:

I wanted to teach him what I’ve learned about fighting against the kind of adversity that I face almost daily and fear he will face also. And I wanted to tell him how peace often happens when we simply stop fighting.


 

5. Wonder by R.J. Palacio

 

Wonder Palacio book cover

Topic: What’s more intimidating than going to public school for the first time? That’s easy: starting 5th grade with glaring facial deformities. With courage and perspective, Wonder’s young hero, August, takes it all in stride.

Read It If You Liked: The Perks of Being a Wallflower

Reader Review: “Wonder captures the dual nature of childhood, both how cruel and how tender we can be with one another. It’s about the wounds we inflict and the scars we carry, all the things that teach us to do things differently the next time.”

Sneak Preview:

Everyone deserves a standing ovation because we all overcometh the world. –Auggie


 

4. Gathering Blue by Lois Lowry

 

Gathering Blue Lowry book cover

Topic: Kira, a disabled orphan, is left to fend for herself by a callous, unforgiving dystopia that has labelled her useless.

Read It If You Liked: The Giver

Reader Review: “With characteristic grace, Lowry pulls her reader into this tale of a devastated world in which judgments are harsh and the dead are left to rot in the fields. Here we find Kira, her leg twisted from birth and her heart, impossibly, nourishing hope.”

Sneak Preview:

Fear was always a part of life for the people. Because of fear, they made shelter and found food and grew things. For the same reason, weapons were stored, waiting. There was fear of cold, of sickness and hunger. There was fear of beasts.


 

3. Change Of Heart by Jodi Picoult

 

Change of Heart book novelc cover Picoult

Topic: Shay is sentenced to death for a double murder. One of his victims has a sister who is now in desperate need of a lifesaving heart transplant. Is it ever too late to seek redemption?

Read It If You Liked: My Sister’s Keeper

Reader Review: “Her writing pulls you in until you cannot let go until the end. This book about life and death cuts so close that it keeps you wanting more.”

Sneak Preview:

There’s always going to be bad stuff out there. But here’s the amazing thing — light trumps darkness, every time. You stick a candle into the dark, but you can’t stick the dark into the light.


 

2. Pulse by Edna Buchanan

 

Pulse crime suspense book novel Buchanan cover

Topic: Pulitzer Prize winner Buchanan brings us this gripping page-turner about Frank, a businessman who received the transplanted heart of a man who committed suicide. Guilty and conflicted, Frank investigates his donor’s life and stumbles upon a gristly conspiracy.

Read It If You Liked: The Girl With The Dragon Tattoo

Reader Review: “The writer’s imagination is a breath of fresh air, and I found myself involved with the characters – feel sorry for them, hate them, question them, and try to imagine myself in their shoes.”

Sneak Preview:

Frank Douglas has everything to live for. But someone else had to die first.


 

1. The Diving Bell And The Butterfly by Jean-Dominique Bauby

 

The Diving Bell and The Butterfly cover memoir Bauby Elle

Topic: At 44, French Elle’s editor-in-chief, Bauby, was blindsided by a rare stroke. When he awoke from a 20-day coma, Bauby was “locked in:” his entire body was paralyzed aside from his left eye. By blinking his way through the alphabet, Bauby dictated this vivid and moving memoir one letter at a time.

Read It If You Liked: The Glass Castle

Reader Review: “At times, I had to suck in my breath and set the book down to pause, it was so profoundly heartbreaking. He shares with us his deepest, raw thoughts about his daily life, his former lifestyle, his children, the blessings he misses and the pleasures he now looks forward to, as well as the torment he cannot control.”

Sneak Preview:

Once, I was a master at recycling leftovers. Now I cultivate the art of simmering memories.


Did we leave out any of your favorites? Reach out to us on Facebook or on Twitter and tell us what we should read next!

 

Treatment options for end-stage heart failure continue to advance

Elizabeth D. Shore, MSW, CSW, Social Worker for the Cardiac Transplant and Mechanical Circulatory Support Programs at Thomas Jefferson University Hospital

HelpHOPELive would like to thank Elizabeth D. Shore, MSW, CSW, Social Worker for the Cardiac Transplant and Mechanical Circulatory Support Programs at Thomas Jefferson University Hospital for this special guest blog post in honor of American Heart Month.

This month marks the 50th year of American Heart Month. It’s a chance to pause and consider heart health and the miraculous advances in detection and treatment of cardiac disease. Heart disease includes diseases of the blood vessels, such as coronary artery disease; heart rhythm problems (arrhythmias); heart infections; and heart defects at birth (congenital heart defects). As a social worker for the cardiac transplant and mechanical circulatory support programs at Thomas Jefferson University Hospital, I have first-hand experience with many options for end-stage heart failure, and would like to share my insights on the current treatment options most commonly pursued in the United States.

Heart transplantation continues to be the “gold standard” treatment for end-stage heart failure, and a large number of patients live for 20 or more years after their transplant according to a study published in the February issue of Annals of Thoracic Surgery. Both in quality of life and longevity, physicians and patients alike turn to cardiac transplant as their ultimate goal. However as I write this, across the United States the organ transplant waiting list includes 12,313 candidates according to the US Dept. of Health and Human Services, while each day only about 79 people receive organ transplants. As a result, an average of 18 people die each day waiting for transplants that don’t take place because of a shortage of donated organs.

To combat the shortage of donor hearts, a durable device was needed that would close the gap between death from end-stage heart failure and time spent waiting for a donor organ for transplantation. In 2001, the FDA approved the first generation of Left Ventricular Assist Devices (LVADs) as a bridge to transplant, thus allowing patients to not only survive until transplant, but to thrive! In the past 13 years these devices have gotten smaller and perform better, allowing patients to lead essentially normal lives until a suitable donor becomes available. Continued refinement in LVAD therapy is underway with great promise for minimal lifestyle limitations right around the corner. At the same time, work continues with the public to raise organ donation awareness and expand donor pools to increase the frequency of transplantation.

Patients and families needing and living with cardiac transplants or LVADs face tremendous medical expenses even when they have medical insurance. More often than not, patients are requiring both LVADs and a transplant, in effect doubling the duration of treatment and recovery and thus the associated costs of care. Families are finding that they are in need of community support and access to funds raised more than ever as part of the LVAD and cardiac transplant preparedness plan.

As a social worker in this field for 20 years, I have been amazed by the advances in technology that not only save lives but improve the quality of life as well. The incorporation of LVAD therapy has been a game changer for patients in desperate need of heart transplantation. Unfortunately, the insurance industry had not expanded coverage sufficiently to relieve the financial toll this double therapy places on patients and families. The saving grace to what could be a financially devastating experience is the opportunity to integrate fundraising as part of the battle against heart disease. The results of such efforts which enable patients and families to lean on community support to meet uncovered medical expenses related to transplantation are not just necessary but truly heartwarming.