Tag Archives: Transplant

Voices of Hope: 5 Things We Learned While Waiting for a Transplant

Allen “Monty” Scott is living with end-stage congestive heart failure. He needs a heart-kidney transplant to live a healthy life. Monty’s wife, Nicole, and his children, Marquise and Talia, have been steadfast sources of support for their father as he’s faced medication changes, hospitalizations, rigorous physical therapy and ongoing health challenges.

You learn to take the good, the bad and the ugly on a journey like this,” wrote Nicole, “but when you wake up the next morning, it’s a brand new day!” Here, Monty and his family members explain what else they’ve learned on the road to transplant.

Monty Scott HelpHOPELive

Monty, left, with his wife and two children


Your family can be a guiding light while you are waiting for a transplant.


Monty: My family has made this journey easier because I don’t have to experience it alone.

Nicole: We have all been actively involved since his diagnosis 10 years ago. We are a strong support system for him, and our community, church and friends have all been very supportive as well. Enjoy every moment of family time, because it is truly a gift. We are tightly knit and that’s the best part.

Marquise: We give him vitality – reason and motivation to keep moving forward. We make the journey easier for him and do things for him that he might not be able to do for himself right now. In addition to the fundraising, our family and community also raise awareness for heart disease.

Monty Scott HelpHOPELive

Monty and family attended the 2016 Heart Walk to raise awareness

No matter what challenges you encounter, try to live your life the best you can to leave a good example for your kids. Be there for your kids 110% so your kids will be there for you 110%. Life is good, and it’s about choices. The choice we make about my dad’s condition is to be there with him every step of the way. My dad and I have a great relationship based on trust, love, teaching and admiration. It is awe-inspiring. It’s a relationship I would like to photocopy and build on with my own kids one day.

Monty Scott HelpHOPELive

“My family has made this journey easier because I don’t have to experience it alone.”

Talia: Whenever we go to the hospital, we always ask questions about how to care for him. We learn about his condition and the medical equipment he needs and we try to absorb it all. You need patience in order to be a father figure for someone. He is always there for us and we can joke around with each other. He always has a bright smile, and I love him. I love the overwhelming amount of strength we have for one another as a family.

Monty Scott HelpHOPELive

Monty’s family supports him during his transplant preparations


The out-of-pocket expenses will surprise you.


Nicole: During a change in our insurance, medications were running low and running out, and we ended up paying out of pocket for some of those costs. Without the meds, Monty’s health declines quickly and his levels are off, which may require an ER visit or even a trip to Tufts to fix.

Monty Scott HelpHOPELive

Home health care is among the out-of-pocket costs Monty faces daily

Talia: Our hospital at Tufts is two hours away from where we live, so in addition to fundraising for things that come up unexpectedly, we also fundraise for trips back and forth to the hospital.

Monty: I realized how expensive this journey can be when my insurance was in transition and we were responsible for those additional out-of-pocket costs. Fundraising with HelpHOPELive is fantastic! It helps to bring awareness to my condition while spreading awareness of how HelpHOPELive can help other people.


Staying positive is possible, but it’s not easy.


Monty: It is a blessing to be on the list, but if your wait is long it can weigh heavily on your mind. Stay strong mentally, because you would be surprised how much your mental state can affect your health. I try to keep it all in perspective.

Nicole: When you are actively involved but you can’t do anything to fix it, you feel helpless sometimes. Organ donation can be a difficult decision for some, so there is a limited availability of organs, making the wait long. Sometimes listed patients don’t make it through the wait. It can become depressing, but there are a lot of resources out there that can help; fundraise with HelpHOPELive! The support system around you helps to alleviate some of the burden.

Monty Scott HelpHOPELive

“Fundraise with HelpHOPELive!” advises Monty’s wife

Marquise: Dealing with a chronic health condition makes your family mature faster, especially the kids. It’s painful. I never can do enough, I feel. It’s even more challenging because it is my father’s heart, the motor of his body. After an egg is fertilized it’s only about a week until that heart starts to beat. It’s scary because you don’t know when or if you are going to get a new heart, whether or not your body will reject that heart and a multitude of other serious concerns.

Talia: You get a little impatient when waiting for a heart because waiting for an organ is not like walking into a store and just buying something off the shelf. There is pain and it hurts and you want to be able to help and you can only do so much. We all deal with the challenges in a way where it doesn’t take so much of a toll on us. You have to try to distract yourself and keep thinking about the good stuff in life.


Rallying your community can provide financial and emotional support.


Monty: Many people have supported me, whether it be through fundraising or just words of encouragement. Parents at my daughter’s school have put together fundraisers and so have my college friends. Our local newspaper kindly wrote my story and it headlined in the paper the next day, drawing awareness to my condition and HelpHOPELive. There are other efforts in progress as well so my community has most definitely shown an outpouring of support.

Monty Scott HelpHOPELive

The “Lend A Hand For A Heart” fundraiser in honor of Monty

Nicole: At first, when it came to fundraising, I thought, “I don’t want to feel as though we have our hands out.” As we advanced through the process and came across the difficulties and the constant cost of the littlest things adding up, we started thinking rationally. That rational thought is, you just cannot do this alone.

Monty Scott HelpHOPELive

Monty’s fellow high school alumni support his fundraising efforts

After putting your pride aside, you see the angels that God has put on Earth to help. They come in the form of family, friends, associates, neighbors and strangers. You just can’t see them when you are too proud to accept their help. I like the way that HelpHOPELive is managed, and it legitimizes fundraising for medical causes like Monty’s.

We fundraise in Monty’s honor and we have a small fundraising team that formed because others wanted to lend a hand. They have taken the reins and have planned fundraisers on their own to support Monty. We live in a beautiful small town where everybody knows everybody. Many have raised generations of families here in Newport (add city). Our church is supporting Monty and other churches are signing on as well. They all want to help.

Monty Scott HelpHOPELive

A “Comedy Night” fundraiser brought Monty’s community together

Marquise: HelpHOPELive simplifies the fundraising process and puts it on a level that is more understandable and that makes it easier for contributors to donate.

Talia: Fundraising with HelpHOPELive helps us to take care of things and keep things organized. It allows us to go through this journey without mounting expenses.

Monty Scott HelpHOPELive

“HelpHOPELive…allows us to go through this journey without mounting expenses.”


Transplants change lives.


Monty: To me, a transplant means an opportunity to go back to normal.

Talia: A transplant means not having to say, “Wait, Dad, do you have the extra batteries!?” Also, not having to see my dad bogged down with all this equipment connected to him so he can be more mobile on his own. It’ll be a good chance and a happy one for my dad. I want to let the donor and their family know that they are giving a gift that only they, God and the medical teams can give. Thank you for giving my dad a second chance at life.

Nicole: After transplant there will continue to be more big changes to our lives. We will find out what our new normal will be as a family, which will be one challenge. How involved we will or will not be with the donor family might be a challenge as well.  I send an entire world of thanks and gratitude to our future donor and donor family. Yours is a gift that there are no words for and thank you just doesn’t say enough. God bless you.

Monty Scott HelpHOPELive

“A transplant means an opportunity to go back to normal.”


Support Monty and his family as he waits for a lifesaving transplant at helphopelive.org. You can start a fundraiser with our nonprofit in honor of someone you know who is waiting for a transplant of any kind. Donations are tax deductible. Learn more on our website

Voices Of Hope: I Am Living Proof Of What An Organ Donor Can Do

Lauren Ann Arkens received a lung transplant in December 2015 after years of struggling with the effects of cystic fibrosis. She draws support from a strong community of friends and family members including her husband, Tyler. We asked Lauren and Tyler for their perspectives on fundraising and being there for the people you love.

Lauren Ann Arkens HelpHOPELive

Lauren Ann, Lily and Tyler Arkens


How did the reality of lung transplantation differ from your expectations?


Lauren: I had no expectations going in. I heard about what could happen and what was going to happen but nothing can prepare you for what actually happens. In a way, I am kind of happy I didn’t speak with anyone prior to my transplant because I think I would have been comparing what I am going through to what they are going through. Everyone is different and everyone’s experience is going to be different.

Lauren Ann Arkens HelpHOPELive

“Nothing can prepare you for what actually happens” during a transplant

Tyler: This is a really hard question. Personally, the only expectation I had was that life would be noticeably different, that the pieces would fall into place and I would simply deal with however they landed. I know I told a lot of people, “Everything will work out the way it should. Maybe not the way I want, but the way it should,” and I just left it at that.


What’s the worst part of life after transplant? What’s the best part?


L: The worst parts of life post-transplant are all the follow-up appointments and specialists I have to see. I see more doctors now that I am “healthy” than I did when I was sick and on the waiting list. The best part of life post-transplant is getting three hours back in my day when I used to have to use a vest and nebulizer treatments. Also all the energy I have, being able to move around, exercise, run and be a mom and wife. All of these things people may take for granted, but for me, the little things were the most difficult pre-transplant.

Lauren Ann Arkens HelpHOPELive

Lauren sees more doctors now that she is “healthy”

T: The worst part is by far the uncertainty. We had our fair share of hospitalizations when Lauren was still seeing her pulmonary doctors and we could usually tell when something wasn’t quite right; Lauren knew her body pretty well. Today, we have a new normal that we’re adjusting to. While Lauren might feel fine internally, there could be more going on, so when we visit, the uncertainty of whether or not Lauren is going to be hospitalized can be a little frustrating.

The best part is Lauren’s quality of life. She’s just happier. Things are fun and funny again. You can see her light up with joy when something touches her heart or fills her cup. She has a tremendous amount of energy, part of which is more oxygen in her system, and part of which is realizing that she’s really been provided another chance.

Lauren Ann Arkens HelpHOPELive

“You can see her light up with joy” again, said Tyler


Lauren, is your health journey completely over now that you’ve been transplanted?


L: Absolutely not! Being transplanted just adds another chapter. There is a lot of care that goes into maintaining new lungs. My transplant team has a home monitoring program that I have to do, I have lab work done once a week and I have appointments two to three times per month. It is never-ending but it is all for the better! This was a gift–a huge gift–and I don’t want to fail at it. My work is never going to end.

T: Lauren is a worker. I have described her as tenacious, consistent and determined. She understands what it takes to succeed. The expectations have been laid out and she doesn’t take it lightly. She understands the gift and the work required to keep it.

Lauren Ann Arkens HelpHOPELive

Lauren must work daily to keep her lungs healthy


What’s one thing about transplants you wish everyone knew and understood?


L: People don’t understand the time and money it takes to have a transplant. Medications are expensive, co-pays are high and some medications are not covered by insurance. There are hospital stays that may be unexpected plus regular appointments and procedures. None of this is easy. It can be draining mentally, physically, emotionally and financially.

Lauren Ann Arkens HelpHOPELive

Transplants are mentally, physically, emotionally and financially draining

T: There is so much that people don’t or can’t understand with regard to chronic illnesses and treatments. We’ve learned to give people the simplest answers and to operate from the mindset that every body is different and everyone’s response to treatment is different. It isn’t a simple process in which you check the boxes and reach a goal. This is a lifetime of learning, adjusting and adapting. That’s hard to explain [to others].

Lauren Ann Arkens HelpHOPELive

“Nurse Lily” helps mom with home health care


How did you learn about HelpHOPELive?


L: My transplant social worker told us about HelpHOPELive and said that many of her patients had great success with it. We decided to use HelpHOPELive because it was the best option for us. A family friend set up a campaign for us so we didn’t have to worry about it on top of everything else we were dealing with. One factor was that HelpHOPELive donations would be tax deductible for the person donating and we would not be taxed on the funds we requested for medical and related expenses.

Lauren Ann Arkens HelpHOPELive

Fundraising helps cover out-of-pocket medical needs

T: It was hands down the best program for us to fundraise with. As a nonprofit organization, it allows the patient to benefit the most and it gives people peace of mind when donating that their gift or donation will be used wisely and never for another purpose.


Why is fundraising important to you on this transplant journey?


L: To be honest and blunt, if it wasn’t for fundraising, I do not know how we would have afforded medication, gas for appointments, meals and three months of house and electric bill payments while I was off work. All of that has been HUGE and has made such a difference for us in not having to worry while recovering.

Lauren Ann Arkens HelpHOPELive

“I do not know how we would have afforded medication” without fundraising

T: Fundraising helps us afford the things we need for Lauren to survive. But it also provides us with a network of people who have really shown that they care about Lauren and her journey. It blows me away. Fundraising gives people peace of mind that they are supporting someone who really needs their help. Lauren is a real, live person with whom they can meet and she can give them credit and thanks for what they’ve done to support her journey. Finally, fundraising allows us an opportunity to pay it forward. We’ve been overwhelmed by the support, and that has motivated us to go out and give back on behalf of that community.


What advice would you give to someone who has just been added to the lung transplant waiting list?


L: Fundraise as soon as you get listed or even before. We benefited greatly from fundraising early. It made going into the transplant a little easier knowing we had money to pay for things we needed when we needed them.

T: Don’t think about the enormity of the situation and don’t let the weight of the unknown get to you. If you’re able, continue to live your life. Take care of yourself and handle your business every day. That’s all you can do. Then, when your time comes, just focus on the instructions you’ve been given and execute.


How important are friends and family members during this process?


L: It’s extremely important to have friends and family involved in the process. If it wasn’t for the support we received, whether financial or through prayers, I don’t know where we would be today. It took a lot of pressure off of my husband during my period of recovery so he didn’t have to handle everything. People care and they are often amazed at what a person can go through and how they can recover.

Lauren Ann Arkens HelpHOPELive

Friends and family support Lauren with “Lungs N Roses” shirts

T: We’ve developed a very close, tight-knit group of people we can count on when we need to. Interestingly enough, it’s not the people you see or talk to the most who will step up when you need them the most. It’s the people who, when you see them, you feel like you can pick right back up where you left off.

Support for us has come in a lot of different forms. We had a small team that set up meals, household chores, donations, gift cards, taking our daughter, Lily, to and from school and staying overnight while Lauren was hospitalized and recovering. We’ve benefited greatly by creating different ways for people to help and giving them options.


Tyler, can caregiving during a transplant change a relationship?


T: It creates a different dynamic for each relationship. My relationship with Lauren changed a lot. Lauren was in survival mode and despite not wanting the help (she has a strong will), she needed it. It’s hard to ask for help. From my perspective, all I wanted for Lauren was to feel well. I had to adjust to the new dynamic of our lives. There is always a give and take in every relationship. You really have to open yourself up to give yourself to someone and accept someone.

Lauren Ann Arkens HelpHOPELive

“My relationship with Lauren changed a lot,” said Tyler


Are you an advocate for organ donation?


L: I am living proof of what an organ donor can do. It is a chance at a better life. My life was so restricted pre-transplant, and now, what I can do is endless.

T: Yes; the obvious reason for that is because I’ve seen someone’s life change completely. But even if our result wasn’t as positive as it has been, I would continue to be an advocate. We’re all called to give life. We need to discover that giving life has many different meanings and it looks different for everyone. If we’re all really trying to give life, why not give part of yourself to someone who needs it?

Lauren Ann Arkens HelpHOPELive

Tyler celebrates his wife’s transplant journey


What does the word HOPE mean to you?


T: Hope is knowing that no matter what you’re going through, there is something better on the other side. It is contagious and inspiring and if we’d just let it, it would change our world.

L: Hope means believing that there is something better for you. And whatever Tyler said!

Lauren Ann Arkens HelpHOPELive

“There is something better on the other side.”


Learn more about Lauren and Tyler’s journey at helphopelive.org. Find out how you can support a spouse or loved one with their out-of-pocket transplant expenses by reaching out to HelpHOPELive on Twitter.

The 2016 Transplant Games In 3 Words: Joy, Inspiration, Resilience

Every year, the Transplant Games provides an opportunity for transplant recipients and donors to come together to celebrate the gift of life. This year’s Games were held in Cleveland, Ohio from Friday, June 10 to Wednesday, June 15. The Games included over 6,000 registered participants. We interviewed a few HelpHOPELive families who attended and competed in the Games. Here’s how they described the experience.

Transplant Games 2016 HelpHOPELive

Bill Soloway, 1-year post transplant, attended the Transplant Games


What made you want to attend the Transplant Games this year?


Transplant recipient Liz Casperite: I can’t remember the first time I heard about the Games, but I always knew I wanted to attend them after I received a transplant. In order to attend, you need to be at least nine months post-transplant with a doctor’s permission. The cutoff this year was October 1 and my transplant was on September 17, so we just qualified! Cleveland was my first Games, but it won’t be my last.

Liz’s living kidney donor Maria Weaver: As soon as I heard about the Games from my recipient, even before the transplant, I wanted to go! It sounded like an amazing event and a chance to keep exploring my new identity as a living donor while meeting more people in the transplant community.

Transplant Games 2016 HelpHOPELive

The Games took place in Columbus, Ohio in 2016

Transplant candidate Pat McEntee: I first heard about the Transplant Games about a year ago when I met some members of Team Ohio at an event in Columbus. I decided I would attend as either a participant or a supporter. My wife, Amy, and I went as supporters this year and just enjoyed the event, meeting people, sharing our story and listening to others’ stories. The fact that the event was in Cleveland near my transplant center, Cleveland Clinic, was an added bonus just in case I got “the call.” I hope to be able to attend AND participate in the Games in 2018.


What are some of the things you saw at the Games that made you glad you went?


Liz: My donor and I spent time watching track and field and saw some amazing athletes who brought everyone joy and inspiration. There was a woman who ran her first 100-meter dash with the aid of her cane, and a 2-year-old whose dad had to hold him back until it was time to run. These athletes made me see there is nothing I won’t be able to do with my new kidney. My donor and I participated in donor/recipient bowling. We were teamed up with a donor mom and her friend. We had so much fun being terrible bowlers.

Maria: It made me happy to see all the donor families wearing pins for their loved ones and talking about their experiences. Many were able to meet their recipients at the Games and it made me happy to hear and see their relationships. I loved seeing the smiles of the last place finishers as they plugged along the track and the crowd went wild for them! It was all about being there. It was a privilege to talk to people in the “quarter-century club” who had had their transplanted organs for 25 years or more. We heard so many stories.

Transplant Games 2016 HelpHOPELive

“We heard so many stories,” said living donor Maria Weaver

Pat: I was extremely moved by some of the stories I heard both during the Opening Ceremonies and just in talking to people I met. In watching the Games, I was impressed with the camaraderie that took place. After a hard-fought win in a close basketball game, Team Louisiana embraced members of Team Kentucky. It was nice to see people compete hard and win or lose with class.

Transplant Games 2016 HelpHOPELive

“I was impressed with the camaraderie,” said Pat McEntee


Do you think events like the Transplant Games make a difference?


Liz: The Transplant Games made a difference for me because I was able to meet recipients who have had their transplant for more than 40 years and get their advice. I was inspired to train for more events for the next Games. The community was also inspiring. We told our story to many people – Uber drivers, waiters, really anyone we met. The manager of an ice cream shop was so inspired that she volunteered for five hours at the Games the day after we met her!

Maria: I DO! I felt like I was in a protective bubble full of all of the most amazing people in the country. People who were handed crappy circumstances or fear or tragedy let it shape them into strong people full of love. The strength and grace I saw…wow! Puts things in perspective. I posted a lot of pictures and stories to Facebook and I got comments from people who said they felt the love and inspiration just from seeing them. It helped them to see this during a week in which the news was full of tragedy. I came away completely inspired to go back to the Games in 2018, meet up with the amazing people I met and became close to so fast, and do more athletic events!

Transplant Games 2016 HelpHOPELive

“I was inspired,” said transplant recipient Liz Casperite

Pat: I feel like people would come and enjoy themselves even if there was no competition at all. I think everyone realizes that the prize of additional life is already won, so what happens in the Games is inconsequential. Everyone still tries hard and competes hard for whatever reasons they choose, whether it is to honor their donor, celebrate the fact that they can participate or just to have fun.

Transplant Games 2016 HelpHOPELive

Win or lose, “the prize of additional life is already won”


Is there an emotional element to the Games for you?


Liz: The Games was a very emotional experience. The tribute to living and deceased donors was amazing. I was very touched by the stories of the donor families we met over the week. I was inspired by a mom who donated the organs of three of her murdered sons and was still positive and spreading the word about organ donation. As recipients, we are all helping to keep their loved ones alive. We made some great new friends that I can’t wait to see at the next Games.

Transplant Games 2016 HelpHOPELive

“The Games was a very emotional experience,” said Liz Casperite

Maria: I was on a high all week. I’ve never bonded so quickly with strangers. I talked to everyone I could, and hugged, and teared up, and high-fived them. It was really hard to leave, especially leaving my buddies from far away who I likely won’t see for two years. Being there with my recipient and getting to tell our story to people and walk in the 5K with her was priceless.

Pat: I was surprised at how emotional the event was. Even at times when I didn’t expect it, I found myself tearing up. The emotions of joy and laughter were also present throughout the days we spent there.

Transplant Games 2016 HelpHOPELive

Pat and wife Amy experienced a range of intense emotions


How would you sum up the experience in 3 words?


Liz: Inspiring. Fun. Heartbreaking.

Maria: Love. Resilience. Celebration.

Pat: Joy. Camaraderie. Compassion.

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What did the Transplant Games mean to you this year?


About The Transplant Games


The Transplant Games is open to athletes with any level of skill with games ranging from cornhole and basketball to track events and swimming. The Games welcomes first-time participants and veterans of all ages, like 4-year-old kidney transplant recipient Cooper, who finished the 23-meter dash grinning. The Games includes donors and recipients from all 50 states as well as multiple countries. There are 21 medal competitions in total and all are free and open to the public.

Transplant Games 2016 HelpHOPELive

The Transplant Games are open to donors and recipients of all ages

Did you participate in the Games this year? How was the experience? Tell us about it on Facebook.

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!

Voices Of Hope: It’s Been One Year Since My Heart Transplant

Avid cyclist Bill Soloway was diagnosed with hypertrophic cardiomyopathy in the 1990s. The debilitating effects of the condition forced him to cut back on his favorite hobbies and his career as a skilled craftsman. Exactly one year ago, Bill received a lifesaving heart transplant. Here are Bill’s thoughts on fundraising with HelpHOPELive and finding your new normal after transplant.

Bill Soloway HelpHOPELive

Bill got a heart transplant one year ago today


How is your relationship with your family?


I have a very supportive fiancée, Kathy; my 86-year-old father, John; and my 23-year-old daughter, Amanda. They have been with me every step of the way. I am also very blessed to be surrounded by many close friends with whom I have ridden my bicycle over the years. I consider them my second family.

Bill Soloway HelpHOPELive

Bill says family and friends support him “every step of the way”


How has your family played a role in your health journey?


Kathy has done most of the heavy lifting along with my cycling friends. They accompanied me to my medical appointments and made sure I had everything that I needed. They would stop over and spend time with me. My father lives over an hour away so we video chatted a lot when I was in the hospital, and Amanda would tag along when she could to offer support.

Bill Soloway HelpHOPELive

Bill’s fiancee and friends have “done most of the heavy lifting”


Is your community helping you to fundraise?


A very close friend of mine, Dennis Brown, along with a handful of other friends lead the charge when it comes to fundraising. I am currently fundraising for the costly medications and other post-transplant medical expenses that aren’t covered by insurance.

I have had two successful fundraisers so far: Spin For Soloway, a spin-a-thon held at a gym in which I am an indoor cycling instructor; and Pizza For A Purpose, held at a favorite local restaurant where a percentage of food sales were donated to my campaign.

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How do you feel about fundraising with HelpHOPELive?


HelpHOPELive has been very supportive in helping me achieve my fundraising goals. Everyone who I have come into contact with has taken the time to get to know me and understand my fundraising needs. They have provided fundraising ideas and marketing materials for my events, and they have also provided new ideas to help promote my cause.

Bill Soloway HelpHOPELive

Bill says HelpHOPELive has helped him achieve his fundraising goals

After considering several online fundraising sites, HelpHOPELive was the only one I connected with. A coordinator spoke with me and Kathy on the phone at great length about all of the resources available and how to best use certain features on the HelpHOPELive website. I felt that my Fundraising Coordinator took a personal interest in me, and I didn’t get that with any of the other fundraising platforms that I looked into. HelpHOPELive staff have even come out to support me at one of my events since their offices are very close to my area! What an awesome surprise!


What is the biggest change to your life since your transplant?


New life, new set of rules! Dealing with medications and side effects has been a challenge, and so has being immunosuppressed. Having a new heart that is getting used to this body and allowing my body to get used to the heart is challenging as well. I will be celebrating this transplant “first birthday” with my family and all my friends with a big barbecue!

Bill Soloway HelpHOPELive

Bill says his life post-transplant comes with a “new set of rules”


Is it challenging to manage a chronic health condition while being a father?


I think it’s a challenge to manage a chronic health condition or transplant, period! Being a father just adds more stress because you have to worry about more than just yourself.


What’s the best part about being a dad?


The best part is watching your kids grow up and sharing life experiences with them. You get to share in their successes and their struggles. They grow up quick! My advice to new dads is to take lots of pictures and spend lots of time doing things you like to do together as they grow up or you’ll have no memories to talk about when they get older. Plus, you’ll have a lot of good stories and adventures to tell your grandkids about their parents!

Bill Soloway HelpHOPELive

Bill tells dads to “take lots of pictures” and prioritize time with kids


Check in on Bill’s life after transplant at helphopelive.org. If you want to learn more about family support and fundraising possibilities before and after a lifesaving transplant, click or tap the Follow button to get emailed when we release new Blog posts. 

Five Myths About Caregiving

“The word ‘caregiver’ often conjures up the image of someone who stands next to a bed distributing pills or wiping a brow. In reality, a caregiver takes on numerous roles.  For me, becoming a caregiver after my husband’s diagnosis has meant taking on the responsibility of all the household tasks, jobs that my husband and I used to divide up and share. Almost every single task is now done by me, from financial planning and home repairs to car maintenance and the bulk of parenting.

caregiving

“Almost every single task is now done by me”

Here’s an example of how our lives look different now. Braden and I used to enjoy working outside in the yard together. He would take on the larger, heavier jobs such as trimming weeds, mowing and using the snow blower.  Now, all of that falls on me. Being a caregiver has also made me the ‘practice coach’ for our children as they participate in sports, something Braden enjoyed doing before the days of oxygen tanks when he could run and move around easily. Many times I feel like a single parent, taking on things I never thought I would have to do by myself.

single parent

“Many times I feel like a single parent”

With that in mind, I would like to share some of the misinformation I’ve dealt with as a caregiver. Statistics are from this source.


Myth 1: Caregivers are middle-aged mothers, wives and daughters.


Although I fall into this category, statistics show that today about 40% of caregivers are men, and many caregivers are between the ages of 18 and 34.

caregiver

40% of caregivers are men, many between 18 and 34


Myth 2: Caregiving is done in addition to someone’s full-time job.


In reality, about a third of caregivers quit their jobs or reduce their hours in order to care for a loved one. In many cases, caregiving becomes the person’s full-time job and their career is put on hold.

job stress

A third of caregivers reduce their hours or leave their jobs entirely


Myth 3: People already know how difficult caregiving can be.


Many caregivers suffer in silence and do not ask for help. This is another category I fall into at times. People who help take care of a loved one often have generous or strong personalities and either do not like to or do not know how to ask for help.

help

“People are unaware of the magnitude of the work a caregiver is undertaking”

The problem with not reaching out is that it creates a deficit of support: often other people are unaware of the magnitude of the work a caregiver is undertaking or the stress the caregiver is under. Which leads to this fourth myth…


Myth 4: Caregivers should always be positive and shouldn’t complain.


There is a fine balance for me between sharing personal details to keep people informed and maintaining privacy.  Our family tries to maintain a positive outlook, so talking openly about the illness and related problems was a challenge until we learned several key things.

happy

Are caregivers allowed to express their frustrations and difficulties?

First, we are not alone in our experience; most people have been touched by something similar. Second, dealing with these issues has enriched our lives. Being able to share our challenges provides us the chance to not only help others but to help ourselves, too. The updates we share on Braden’s HelpHOPELive campaign page are a wonderful opportunity to keep our family and friends informed and discuss caregiving as well as Braden’s journey towards transplantation.


Myth 5: Caregiving is a thankless job.


Being a caregiver is stressful and often discouraging, and it can be overwhelming.  But caregiving is also very rewarding at times.  Some caregivers experience an emotional and spiritual sense of fulfillment. Taking care of someone you love provides opportunities to grow closer and form bonds with each other and other members of your family or support network.

Understanding and dispelling these caregiving myths may help us to seek assistance, gain support and lessen some of the stress we encounter as we help take care of someone we love.”

Braden Richards HelpHOPELive

Beth is the wife and caregiver of HelpHOPELive client Braden Richards


Beth is the wife and caregiver of Braden Richards, who is fighting a rare autoimmune disorder. Braden and Beth are fundraising with HelpHOPELive for the out-of-pocket costs associated with a lifesaving lung transplant.

My Life As A Father And Grandfather Who Needs A Transplant

Kappy Pease is a father and grandfather living with a severe lung disease. He is on the waiting list for a lifesaving double lung transplant. We asked Kappy about his perspective on balancing fatherhood and the challenges of life on the transplant waiting list.


Why Fundraising Works For Us


Since my first visit to the hospital where a social worker suggested we begin a fundraiser to help us with the costs of transplantation, my family has come together and has been very helpful in their efforts to work with HelpHOPELive. So far, because of their dedication, we have been very successful.

Each of my kids has taken time out of their busy life to take some of the burden off of my wife, Theresa, and I, both physically and emotionally. They have each stepped up in their own way and have been very supportive. I know I could not do this without all of them.

Kappy Pease HelpHOPELive

“I could not do this without all of them.”

Although my insurance will cover most of the transplant procedure, there are many hidden and unexpected costs not covered. The expenses begin long before the procedure takes place and they last a lifetime, including travel, lodging, parking and food during countless hospital visits and the unpaid time off that my wife will take in order to care for me after the procedure. Most of all, fundraising will help contribute to the cost of the (antirejection) medications I will need to take for the rest of my life after the transplant.

I have found that much of the support I receive comes from old friends who have learned about my time of need through social media and our HelpHOPELive campaign. Working with HelpHOPELive has been a very positive experience. Their knowledge and support has been very helpful to someone who had no prior experience with fundraising.

Kappy Pease HelpHOPELive

HelpHOPELive provided custom fundraising materials and more.


How My Family Supports Me


It has been very rewarding to watch my kids grow and begin to start their own families. I am very proud to say that they have each become very successful in their own way. I’m humbled by the compliments I have received about my kids. The way they have stepped up for me during this time makes me feel like my wife and I raised an amazing family.

Kappy Pease HelpHOPELive

Family members “have stepped up for me during this time.”

At this point in my life, I feel closer to my kids than ever before. Before my diagnosis, I worked very long hours that caused me to miss out on a lot of my five kids’ daily lives and activities. I especially missed getting to watch their sports games, because sports are something that are very special to both me and my kids.

I feel that the physical limitations of my disease have been more challenging as a grandfather than as a father. My kids are adults now, and they need me more as an advisor and a part of their emotional support system.

Kappy Pease HelpHOPELive

A transplant will help Kappy spend more quality time with his grandkids.

Since my diagnosis, I have been given the chance to spend more time with all of them and grow closer to them; however, because of my disease, there are also many things we still cannot do together. The hardest part is my limited ability to play with my very young grandchildren. Once I get the transplant, I will hopefully be able to do many things that I have missed doing for the last 10 years. That includes golfing, hunting, fishing, playing with my grandkids and taking long walks with my wife.

My advice for a new father is, enjoy every moment because they grow up way too fast.

Kappy Pease HelpHOPELive

“Enjoy every moment” Kappy advises new fathers.


Learn more about Kappy or donate in his honor at helphopelive.org. If you know a father who needs help fundraising for a transplant, reach out to us today to learn how you can help.