Tag Archives: transplant waiting list

Touched by Transplant: Organ Donation Allows You to Leave a Unique Legacy

Patrick McEntee is waiting for a lifesaving heart transplant and is fundraising for transplant-related expenses via the Help Hope Live Great Lakes Heart Transplant Fund. Pat is one of four winners of our 2017 Touched by Transplant “New Life” Contest in honor of April’s Donate Life Month.

Touched by Transplant 2017 Help Hope Live


“In 2003, I began a new career as a high school religion teacher. I was paired with a mentor to help me adjust and learn: Bill Westerman, who, some years earlier, went from selling insurance to teaching the Catholic faith to high school students.

From the beginning, I was inspired by Bill, his passion for teaching, and his faith in God. Little by little, I came to know Bill’s story. In addition to having survived polio as a child, he also survived a heart transplant a few years prior to my meeting with him. His life was not without complications, but he continued to give every ounce of fight he had in him to remain a teacher and remind students, at the end of every class, “Don’t be stupid. And always remember: Mr. Westerman loves you.”

I have been a registered organ donor since I got my driver’s license at 16, but my reasoning for it has evolved in the 26 years since. At first, I simply registered because it seemed like the right thing to do. When I met Bill, my views on the subject of organ, eye, and tissue donation changed drastically.

Pat McEntee

Pat’s reasoning for being an organ donor “changed drastically” after meeting Bill

Bill was a tremendous inspiration and example to me. I couldn’t ignore the fact that I would never have met him if it weren’t for the selfless act of another who chose to be an organ donor. Bill took that person’s selfless gift very seriously. He lived every day to prove that his donor’s gift was being appreciated. He wanted to be a good steward of the gift of life.

I started to see the impact one person could have. Bill is one of just eight people who could have been saved by a single donor. Imagine the other stories that could be shared that are only possible because of one person’s choice!

Bill’s donor, and all organ donors, found a unique way to leave a great legacy, a legacy that would last much longer than their earthly lives. That donor didn’t just impact Bill; he impacted Bill’s family, friends, and people who had yet to BECOME Bill’s family and friends, including his future grandchildren.

Bill taught me a lot about being an effective teacher, but he taught me much more about life and being grateful for the gift of extra time on Earth given through the generosity of a stranger. Often in my life, I recognize God’s presence after the fact. Though I never expected to venture down the same road (as Bill), congenital heart conditions led to me being listed for transplant and receiving an implanted left ventricular assist device (LVAD).

June 5 is Pat’s 1,000th day on the transplant waiting list

Today is my 1,000th day on the heart transplant waiting list. Fortunately, I have the important lessons taught to me by my friend, Bill. I am so grateful for the last two and a half years, which would not have been possible without my LVAD. I have tried to make as much of a positive impact as possible with the extra time that I have been given, a lesson I learned from Bill. Volunteering in my community, particularly with organizations that promote organ, eye, and tissue donation, has given me the opportunity to share my story and to hear the stories of so many others who have been touched by transplant.

Today, both Bill and his donor are gone from this world, but their impact is still being felt many years later. They have left a legacy that not many can claim.

My donor is out there somewhere. I pray for my donor often, though I have no idea who he or she is. I ask all those who pray for me while I wait to pray for my donor too. Without a doubt, the hardest part of the transplant process is knowing that someone will have to die for me to have a chance at a longer and healthier life.

I remind myself that my donor is giving me a gift, and my gratitude for that gift will be shown in the way I use it to make a positive impact on the world. That’s the way Bill did it, and because he did, his organ donor adds a second generation to the impact of his legacy.”


Touched by Transplant 2017 Help Hope LiveThank you, Pat, for your reflections. If this story has impacted your perspective, read more of his story or sign his Guestbook at: https://helphopelive.org/campaign/8748

 

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!

5 Major Transplant Headlines You Missed

Here are some of the milestones and newsbreaks that have touched transplant families since this time last year.


5. Scientists 3D Print Human Body Parts


After a decade of research, scientists managed to engineer functional human body parts including bones, muscles and ears.

Lab grown organ

Will lab-grown organs replace donor organs? Photo via source.

Quote: “This technology could potentially be used to print living tissue and organ structures for surgical implantation.”

Click for more


4. Total Artificial Heart Could Eliminate Transplants


After a 60-year break, the total artificial heart (TAH) is being revisited as a potential permanent implant that would eliminate the need for heart transplants.

Total Artificial Heart

Diagram of a Total Artificial Heart. Image via UCLA.

Quote: “There are people that are desperate for this technology…I think it has the potential to save a lot of people’s lives”

Click for more


3. Ending The Waiting List…In Our Time?


In addition to lab-grown organs, bioprinting and cold storage could dramatically improve circumstances for transplant candidates on the waiting list.

bioprinting

Will bioprinting and cold storage end the waiting list? Image via source.

Quote: “We can expect the first fully engineered bioidentical no-immune-suppression-needed organ transplant in humans within 10 years.”

Click for more


2. Have Money, Will Transplant


A study indicates that wealthy people are more likely to secure a transplant and less likely to die while waiting for one.

Money organ transplant

Can money get you on a shorter waiting list? Image via source.

Quote: “It takes money and knowledge…traveling can make a huge difference in how quickly you get an organ.”

Click for more


1. Incompatible Donors Can Donate A Kidney


Donors may now be able to give a kidney to an incompatible recipient through a process called desensitization.

incompatible donors

Incompatible kidney donation is now possible. Image via source.

Quote: “Desensitization…can cost about $30,000 [but] dialysis would rack up a higher price tag and a considerably lower quality of life.”

Click for more


Did a health headline touch your family this year? Reach out to us on Facebook and share the stories that moved you.

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.

pat3

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.