Tag Archives: family

April is Donate Life Month, and We Are Touched by Transplant

April is National Donate Life Month, a commemoration that we and our patients love to celebrate. This year, Donate Life America, who launched the awareness month in 2003 with its partners, has chosen a special symbol to mark the month: a pinwheel.

Donate Life Month pinwheel 2017

As the organization explains, the imagery is “symbolic of an instrument that turns obstacles into opportunities. Each Donate Life pinwheel has four sails supported by one stem, symbolizing the power one person has to be an organ, eye, tissue or living donor. This April, we encourage you to stop to feel the breeze, watch the pinwheels and think of the lives of those touched by donation and transplantation.”


Since April 2016, 177 Help Hope Live patients have received life-changing transplants. Let’s hear some of their testimonies.

Touched by Transplant 2017 Help Hope Live


“Alive Again” with a Kidney and Liver


Brent Lauffer has fought congenital hepatic fibrosis (an inherited liver disease) since his teenage years. He received a liver/kidney transplant in January 2016.

“The liver is continuing to work and the new kidney is putting out urine!” he wrote in an update on his Help Hope Live campaign page. “As I now live, having received my liver and kidney transplants, I want to thank YOU for your help. You give me HOPE for a bright tomorrow. God bless you for your prayers and support.”

Brent Lauffer Help Hope Live

“You give me HOPE for a bright tomorrow.”

Brent speaks to some of the everyday blessings that came from the transplant, saying “it is amazing to wake up and NOT feel sick, hungry, and have to pee! I am alive and headed towards a real life again. I am so thankful for my friends and family and those whom I’ve never met who are supporting me.”

“I’m pictured here with George. He received the other kidney (from our deceased donor)!“

Brent Lauffer Help Hope Live

Brent with George, who received a kidney from the same donor

Brent fundraises for the Help Hope Live Mid-Atlantic Liver/Kidney Transplant Fund. Fundraising gives his community a way to tangibly support his transplant recovery journey. As one contributor wrote to Help Hope Live, “You are on the side of the angels with the work that you do.”


A Record-Setting Recovery


Living with end-stage renal disease and in need of a pancreas/kidney transplant, Kathe Wimberly Neely has been fundraising with Help Hope Live since 2011. She witnessed countless patients receive the gift of life as she prepared, year after year, for her own miracle. In February 2017, “the call” finally came.

“Two weeks ago, I received the call,” Kathe posted in March. “One week ago, I was discharged from the hospital–a record recovery, according to my medical team. Another record, according to my pharmacist: the fewest discharge meds she had ever seen. My healing has been amazing. Very few side effects–all very manageable. It’s all temporary and I will get through it with a smile.”

Kathe Neely Help Hope Live

Kathe says she is experiencing “a record recovery”

While the gift of life was long-awaited and personally impactful for Kathe, her post-transplant thoughts were with the donor: “That was probably the day a family was facing the greatest heartache one can even imagine. In my eyes, they were so brave to go through such a time while also making some decisions that would forever change my life and the lives of possibly many others with their gift of organ donation. This family, though I do not know who they are, is in my thoughts and prayers daily. This family is who I think of every single night as I fall asleep. I hope to know them one day when they are ready.”

Kathe’s life post-transplant includes a wealth of community support. “Life is grand,” she reported, as “each and every person I know and love brings sunshine to my life. I have met many new people along my journey, each one adding new rays and brightness to my appreciative and over-flowing heart. Again, words escape me.”

Kathe Neely Help Hope Live

Kathe with her custom Donate Life “Pay It Forward” plate

Sometimes the beauty of new life lies in the smallest details, as Kathe’s frequent updates highlight. “Couldn’t sleep, so I came downstairs to sit on the sofa because I can,” she posted. “I’m not tethered to a 15-foot tube that’s attached to a dialysis machine in my bedroom anymore. This is amazing!”

Kathe fundraises for the Help Hope Live South-Atlantic Kidney/Pancreas Transplant Fund. “Love how much you do for others,” she wrote to us. “Much love and thanks for the amazing work you do. I’m so glad to work with my Help Hope Live fundraising team on my transplant journey.”


New Lungs, New Life


Pat Donovan and his family were plagued by uncertainty when he was diagnosed with idiopathic pulmonary fibrosis (IPF), a chronic lung disease where the cause is generally unknown and the only treatment is a double lung transplant. Pat was fortunate to receive a transplant in July 2016 after only 30 days on the transplant waiting list.

Pat Donovan Help Hope Live

Pat received a double lung transplant to fight IPF

“The miracle of Pat’s transplant continues,” reads a recent update on his Help Hope Live campaign page. “Our gratitude is overflowing! April is Donate Life Month and we celebrate Pat, who is doing extremely well, slowly and steadily regaining strength at this stage of his recovery. Walking without [supplementary] oxygen was made possible by an organ donor! Pre-transplant, even simple activities left him gasping for breath and coughing relentlessly.”

Pat Donovan Help Hope Live

“Made possible by an organ donor!”

Along with an incredible improvement in health comes the unfortunate and ongoing burden of transplant-related costs. “There is a need to continue to raise funds for uninsured transplant expenses,” explained an update. “The cost of radical dietary changes to stave off infection and organ rejection are real. Co-pays and deductibles are a concern for all of us. The daily medications he will need for a lifetime are literally a matter of life and death. Travel, lodging, and food for trips from Pat’s home in central Maine to the Boston transplant clinic are not as frequent, but they do come with a cost.

Pat Donovan Help Hope Live

Post-transplant care and medical needs “come with a cost”

Pat fundraises for the Help Hope Live Northeast Lung Transplant Fund.


Fundraise to Sustain the Gift of Life


Touched by Transplant 2017 Help Hope LiveAs Help Hope Live patients have expressed time and time again, a transplant can be an incredible opportunity for greater health and happiness, but it isn’t the end of the road. Fundraising can help to offset some of the lifelong financial burdens of life pre- and post- transplant, including testing, donor search fees, anti-rejection medications and medical travel for routine follow-up care.

Donate Life Month is a great opportunity to start or re-start a transplant fundraising campaign. Help Hope Live was founded in 1983 by a transplant surgeon and his wife, a nurse, who wanted to help more patients have access to transplant procedures. Since our founding, our community-based fundraising campaigns have provided more than $67 million in financial support to cover patients’ unmet transplant related expenses.

Stay tuned for a whole month of memorable Touched by Transplant stories, and keep your pinwheel spinning.

What the Holiday Season Means to Me After a Spinal Cord Injury

In 2009, Kirk Williams was a motivated Colorado sociology graduate who filled his downtime with outdoor adventures and sports. In November of that year, a “complete freak accident, like trip-over-your-shoelaces kind of crash” changed his life: Kirk sustained a C5 spinal cord injury as he flew over the handlebars of his mountain bike. The injury left him paralyzed with a limited amount of feeling in his legs and limited use of his fingers.

kirk_10

Kirk didn’t want his injury to put the brakes on his full and active lifestyle

As soon as he was able, Kirk began to immerse himself once again in outdoor adventures and sports. “My injury did influence my hobbies but I haven’t stopped doing what I love,” he explained. “I still do photography, camp, mountain bike [and] new hobbies like wheelchair rugby, scuba diving and hand cycling. I love travel and I was not reluctant at all to travel after my injury.”

Photo by SCI Recovery Project via Facebook.

Rehabilitation helped Kirk to reclaim his adventurous lifestyle, little by little. Source

Kirk is the founder, director and pilot/camera operator of the UAV-powered video production agency Birds Eye Optics. “It’s wild to think that while most people may think that since I’m in a wheelchair, my perspective is limited,” observed Kirk. “Actually, with my career, I see further than ever before.”

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“With my career, I see further than ever before.”

He credits fundraising and community support as essential parts of his journey. “My community of family and friends has been one of the most significant parts of me getting where I am today,” said Kirk. “Without the help of friends, family and HelpHOPELive, I wouldn’t have been able to afford the amazing equipment and lifestyle that I love to live. With my incredible support system, I’ve surpassed even my wildest dreams of what is possible.

I see each [injury] anniversary as a day to look back and see just how far I’ve progressed. I remind myself that anything is possible. I’ve taken the cards I’ve been dealt to not only survive but thrive in what first seemed nearly impossible circumstances.”

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On each injury anniversary, “I remind myself that anything is possible.”

Asked about the end of the year approaching, Kirk captured a sentiment shared by many of our clients, whether they are living with an injury or waiting for a transplant: the holidays are a time for hope, family and looking to the future. “The holidays are always a wonderful time of year,” explained Kirk. “I can catch up with friends and family and we can enjoy each other’s company. As crazy as they are, it’s always rewarding to have my entire family together in one place.”

The hustle and bustle of the season doesn’t appeal to Kirk, who said, “my favorite part of the holidays is being able to relax with the ones you love. It’s not about the busy times for me…it’s the downtime that I cherish the most. And the food!”

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What do the holidays mean to Kirk? Hope, family and looking to the future.

I usually make a New Year’s resolution,” said Kirk. “It’s a good chance for me to attack my goals with a refreshed set of eyes.”

His advice for others entering the holiday season and looking ahead to the new year? “Life is short, so why not try to experience it to the fullest? Get out there and try everything you can. You can be as happy or as upset about your injury and your life as you choose to be. It’s entirely up to you.

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Kirk says happiness after a spinal cord injury “is entirely up to you.”

What does hope mean to Kirk? “Hope means having my eyes set on what lays ahead, and knowing there is always a possibility for positivity given the right mindset.”

We know fundraising can make a significant impact on an individual’s life through the power of community, both financially and emotionally. As you continue to trust our nonprofit for a lifetime of medical fundraising support, we hope this holiday season brings you memorable times with friends and family and plenty of opportunities to look ahead, with hope.

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From our family to yours! Photo by Kirk.


Kirk Williams continues to fundraise with HelpHOPELive for the lifetime out-of-pocket medical and related expenses associated with his injury.

Bella Da Dawg is Kirk’s four-legged companion. She “spends most of her days dreaming of tennis balls” and “screwing up sound from her habitual snoring and striking good looks.”

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: “No Matter What Happens, We Always Love Each Other”

Yusef Harris is a loving father and a longtime community volunteer and youth mentor. Combating health issues since 2004, Yusef needs a kidney transplant to live a long and healthy life. He and his family have turned to HelpHOPELive for fundraising support.

Yusef Harris HelpHOPELive

Yusef is fundraising or a kidney transplant with support from his family

As he copes with the challenges of end-stage renal failure and exhausting dialysis treatments, Yusef draws inspiration from his family to stay positive and keep fighting. We asked daughters NaQari and Miyala about fundraising and sticking together as a family in the face of challenging circumstances.


How is your family helping Yusef to manage fundraising?


Miyala: We help sell shirts and do our best to promote his HelpHOPELive campaign and let others know about it. We have all purchased and worn his #LemonadeLife clothing as well! We started the #LemonadeLife hashtag with our father because, as our dad puts it, “I refuse to let kidney failure end what I know to be a meaningful life.”

NaQari: We also go out with him and educate people about kidney failure and being organ donors using HelpHOPELive brochures and bracelets.

Yusef Harris HelpHOPELive

“When life gives you lemons…”


What are you currently fundraising for to help Yusef?


NaQari: We are currently fundraising to help cover the bills that come with the kidney transplant surgery and the medications he will need to live with a new kidney.


When did you first realize how expensive a transplant could be for your family?


Miyala: When we took time to talk about the transplant process and what we would all have to go through, we learned about the financial commitment.

NaQari: I realized the financial commitment the moment my father began to take precautions and go through all the necessary steps required for him to be a candidate for the transplant surgery. I learned about the cost mostly from my father, and I also learned through research on the Internet and heard about the financial component from people who had received a transplant who posted about it on Facebook. I was told that the anti-rejection medications would be between $200 and $300 per month for the rest of his life.

Yusef Harris HelpHOPELive

Yusef will take on the financial burden of transplant with help from family and friends


Is your community supportive of what your family is going through?


Miyala: Everyone is there for us if we ever need anything. We have people we can count on.

NaQari: Our church family and Facebook community is very supportive. They understand that my father is going through tough circumstances and they do everything they can to help, whether that is donating or sharing my father’s story.

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How do you feel about fundraising with HelpHOPELive?


Miyala: It’s been great. My dad talked to me about working with HelpHOPELive and what is being done to help us is wonderful.

NaQari: I love fundraising with HelpHOPELive! They provide a professional-looking site and help with the work necessary for my father to raise funds.

Yusef Harris HelpHOPELive

NaQari appreciates that HelpHOPELive provides “help with the work necessary for my father to raise funds”


Do you think it can be difficult to stay positive while on the transplant waiting list?


Miyala: I know for a fact it’s difficult. Having to wait is hard. Your whole life depends upon what happens at that point. I just say to him and anyone else, never give up. God has a plan for you.

NaQari: It can be very difficult staying positive while on the waiting list because so much can happen. You can get an at-risk donor or someone who doesn’t match your blood type, and that makes you think more about the possible complications that come with the surgery. My advice is to pray and keep a positive spirit, because if you think positive you will have positive results.


Is it challenging to watch your father cope with a chronic health condition?


Miyala: I know that things are hard but at the same time, you never know exactly what that person is going through or feeling. You want to understand, but sometimes that’s hard. It hurts to see the pain that they go through.

NaQari: My dad had to quit working because of his health. He couldn’t work for long before he experienced pain. My dad has had small bouts of depression and he tries his best to be positive. It affects all of us because we are all so used to seeing that spark in his eye. It is difficult to watch my father cope with his health condition because I can’t experience it or take away the pain that comes with it, nor can I take away all the risks and what-ifs.


What’s the best part about being a member of your family?


Miyala: No matter what we’re going through, we’ve been taught to stick together, and that’s what we do. I always know that my dad and everyone else in my family is there for me.

NaQari: No matter what happens, we always love each other and have fun together.


Tell us a little bit about your dad’s role as a youth mentor in the community.


NaQari: My dad has mentored and become a father figure for many young men in our church community and he has helped them with everything from homework to life lessons. He loves mentoring young people because he wants to help them become wonderful men and keep them from being another statistic in their neighborhoods.

Yusef Harris HelpHOPELive

Yusef’s community is grateful for his work in youth mentoring

It became a part of his life when these individuals were born and came to our church. On a day-to-day basis, he is doing everything he can to better himself. Then he calls or messages the individuals or their guardians or parents to check up on them to see how things are going and if he can help them in any way.


When it comes to your dad’s life, from living gracefully with a chronic condition to volunteering and mentoring at-risk youth, what are you most proud of?


Miyala: I love that my dad took his story and made it into something so positive. He wants everyone to know that life will give you lemons, but all you have to do is make lemonade. It’s never over. I just want my father to know that I am very proud of what he’s done. He has helped mold me into the young lady that I am, and I love him for that.

NaQari: Even when he doesn’t feel good, he finds a way not only to be my father but a father for other children who don’t have one. To me, that is the most selfless thing I can think of, because he provides for those children as well as us.  My dad has found a way to love his wife and two daughters unconditionally while giving the same love to many other kids at the drop of a hat. He takes care of them just like he would take care of us. I love that about my dad.

Yusef Harris HelpHOPELive

Yusef’s family and community are behind him on his transplant journey


To learn more about Yusef, NaQari and Miyala, visit helphopelive.org.  Want to help support transplant families? Make a donation to HelpHOPELive and find out what else you can do to raise awareness and support families facing a medical crisis.  

New Video: Fundraising Changed My Life After A Spinal Cord Injury

In 2007, Jeff Harris was enjoying July 4 on the beach with friends when the unthinkable happened. “We were kicking a soccer ball around on the beach and my buddy kicked the ball in the water,” explained Jeff. As he dove into the water, “I hit right around the top of my head at the right angle, at the right speed, at the right tilt of the universe.”

Jeff broke his neck and became a C6 quadriplegic.

After they dealt with the initial shock and emotional trauma of Jeff’s injury, his family quickly began to realize how expensive life with paralysis would be. “It’s almost hopeless to get insurance companies to provide what these spinal cord injury patients need to have a great life,” said Jeff’s mom, Jan.

Jeff was facing extreme out-of-pocket expenses and co-pays. “Wheelchairs cost tens of thousands of dollars,” said Jeff, and that’s not to mention “medical bills and daily supplies” he would need for the rest of his life. Fundraising with HelpHOPELive changed Jeff’s life. “HelpHOPELive was a life ring for us,” said Jeff’s dad, Steve. “They know what works and they are able to give advice to folks like us who have never done this sort of thing before.”

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With support from their community, Jeff and his family planned an annual fundraiser that incorporated curling, one of Jeff’s biggest passions before his injury. The Curl-a-thon in honor of Jeff will soon enter its tenth year. “For these two days when we hold the Curl-a-thon, I am so humbled,” said dad Steve. “Everyone in Jeff’s sphere was just looking for a way to help him.

We’re proud to present our newest HelpHOPELive video featuring Jeff’s fundraising story. Tell us what you think by Tweeting @HelpHOPELiveOrg!

Jeff Harris HelpHOPELive Curl-a-Thon

Fundraising has helped Jeff to pursue independence and mobility

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.

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!