Tag Archives: heart transplant waiting list

Voices of Hope: “There Is Always Someone To Lean On”

Husband and father Martin Vece has served the community for decades as a performer and teacher. We asked Marty how his wife and three daughters help him to cope with the emotional, physical and financial challenges of life on the transplant waiting list.

Martin Vece HelpHOPELive heart transplant

Marty with his family at UCLA


In November of 2014, I was informed by my doctors at UCLA that I would need a heart transplant. Because of an impending lung issue, I would first have to go through open heart surgery for an LVAD. In December of 2014, I had to immediately relocate my entire family from Las Vegas to Los Angeles as I recovered from the procedure. I knew in that moment that we were in some incredibly deep financial trouble.

I had to remain in Los Angeles for a minimum of sixth months after the LVAD surgery. My doctors required me to have a caretaker for that entire period. We asked several members of our family to stay with me in LA, but everyone we asked was not able to do it. There was no choice but for my wife and kids to come with me.

Martin Vece HelpHOPELive heart transplant

Marty begins walking after the LVAD surgery

When I was in the hospital getting the LVAD surgery, it was my wife who, over a period of three days, packed up all our things, rented a U-Haul truck, found housing for us in LA, took our girls out of school and registered them in LA, and found people to help her move everything we needed into an apartment. She truly was Superwoman. We were finally able to move back to Las Vegas in June of 2015.

Because Las Vegas does not have its own transplant facility, when I get ‘the call’ for a heart transplant, I will have to go on a leave of absence from work and relocate to Los Angeles again to be near UCLA for roughly six months while I recover from the surgery. I am currently fundraising to cover my medical and related expenses, including uninsured doctor’s bills and medication costs that come in monthly. With HelpHOPELive fundraising helping me to pay for medical and related costs, it frees up money to help with general bills and cost-of-living expenses so I can take care of my wife and family.

Martin Vece HelpHOPELive heart transplant

An update on Marty’s HelpHOPELive page explains financial burdens

Chronic health issues have created multiple challenges for me and my family. The stress has been ridiculous as I cope with my health issues and my wife tries to raise three young girls and support me at the same time. The financial stress of my illness has been significant. It’s continuous, because even after the transplant my uninsured medical expenses will continue to stack up. I will have to continue to fundraise for my entire life.

With a little bit of my energy and time, I coordinate all of my fundraising activities on my own. My wife is busy taking care of the girls, taking care of me and running the household. It can be surprising when extended family members and friends don’t step up to help with fundraising. Since my heart issues have taken a turn for the worse, I have learned a lot about who in your life really sticks by you through the tough times and who abandons you.

HelpHOPELive has been a godsend. Before I started working with HelpHOPELive, I didn’t have a clue about how to conduct grassroots fundraising. I have become educated very quickly with the guidance I have received from HelpHOPELive. It really helps that the organization allows me to fundraise through a 501(c)(3). It gives your illness some credibility: HelpHOPELive verifies medical need, and I think people feel a little safer donating money with assurance that the cause is legitimate.

Martin Vece HelpHOPELive heart transplant

HelpHOPELive lends credibility to Marty’s fundraising efforts

I find it to be a great challenge to remain positive while on the transplant waiting list. For some of us, it is a really long wait, and it becomes challenging when you are dealing with medical issues day in and day out. I honestly don’t know where I would be without my family. They keep me grounded and focused on living for each and every day. But it has not been easy. I seem to weave in and out of periodic states of depression. During those times, I just keep saying to myself that I’m lucky to be alive. Without modern technology, I would have been gone a long time ago. I try to look at what I have and what I am grateful for, not what I’m missing. Positive thinking is crucial to get you through those dark periods.

My family members, close friends and co-workers provide a strong emotional support system for me. My relationship with my wife and three daughters is incredible. They have played a tremendous role in my health journey in that they have been there with me every step of the way. I don’t know if I could get through each day dealing with all of my medical issues without them at my side.

My two oldest daughters are nine and eight years old, and they understand my medical condition and limitations very well. They help me with little things like bending over and picking things up for me, helping me carry things, or getting something for me because I’m out of breath. These little acts of assistance help me physically get through each day. My girls are great because they know that I can’t play soccer with them, roughhouse, or do anything else on that physical level, so instead, we take advantage of other ways to spend quality time together. We do homework together, play board games, watch TV and go for slow walks together.

Martin Vece HelpHOPELive heart transplant

Marty’s wife and daughters are a strong source of support

The best part about my family is our love for each other. We all support one another. No matter what is going on, there is always someone to lean on. My advice to a new father is, don’t think you can be selfish. To be a good father, you have to be willing to make sacrifices for your children. When I was little, my mother used to say, “I go without so you can have [what you need]. I would take the food out of my own mouth to put it in yours.” My mother had a great impact on me and now that I am a father, I truly understand what she meant.

After transplant, I look forward to getting out of the house. I want to run and run and run and run. I can’t wait to do physical activities again. I want to play sports and do musical theater and chase my kids around for hours. I want to go into the ocean and splash around with my family. I want to take dance classes with my girls. My girls and my family are my world. It’s hard to imagine, now, that I had a life before they arrived.

Martin Vece HelpHOPELive heart transplant

Marty wants to run, play sports and chase his kids around after transplant


Learn more about Marty and his family or donate in his honor at helphopelive.org. Help us celebrate strong fathers this month! Do you know a father who is living with a challenging chronic health condition? Submit his name to HelpHOPELive and he could be featured in our next Blog post!

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.