Tag Archives: post-transplant

Touched by Transplant: Healing Inside and Out After a Transplant

In December 2014, Linda Jara was fighting off what she thought was a seasonal flu. After several visits with her doctor, Linda was diagnosed with heart failure. Medication couldn’t correct the issue, and as her condition declined, she received a left ventricular assist device (LVAD) as a bridge to a lifesaving heart transplant. In 2016, she finally got “the call” she had been waiting for.


I went from living a normal life to being in end-stage (advanced) heart failure within a month. This is how I was Touched by Transplant.

Touched by Transplant 2017 Help Hope Live


The Wait…and the Call


I waited for a heart for 18 months, from March 2015 to September 2016. My daily routine with an LVAD during that time: wake up; unplug from the wall unit; plug into the battery unit; record my numbers; take my morning medications; have breakfast; work out; shower and change my bandages every other day or use wipes; get dressed; go to work; come home; relax; go to bed; plug into the wall unit.

Linda waited for a heart for 18 months

The best way to describe waiting for a heart transplant is being on call 24 hours a day, 7 days a week. There is a momentary pang of anxiety every time the phone rings. You have no idea when the call will come. However, it can’t stop you from living your life. It is best to still make plans and live for the moment. You have to trust the process and know that waiting is part of making sure you will receive the best possible heart for you.

Linda Jara Help Hope Live

Linda explains LVADs to friends and supporters on social media

I had two false-alarm calls prior to “the one.” When I realized that call was THE call, it was surreal. I knew the minute I answered the phone that this call was different. This time around, the process from the phone call to surgery was a blur that happened within four hours. My emotions were mixed: I was happy, excited, sad, laughing, crying–you name it. My parents and a few close friends stayed with me until surgery started. That helped with the pre-transplant “will I survive?” anxiety.


Healing, Inside and Out


I was in the hospital for 23 days post-transplant. What I learned? Open heart surgery hurts. After the procedure, it hurts to lay in bed, to stand up, to cough, sneeze–you name it. This pain also affected post-surgery physical therapy, which became difficult because of fluid build-up in my body. But it’s essential to get in as much physical therapy after surgery as possible to heal well. That being said, I never looked forward to the therapist arriving!

Linda Jara Help Hope Live

Linda shows off her post-transplant scar

The most significant physical changes have been scars and scar tissue. Being just 6 months out from transplant, I have yet to feel great. I still tire easily, and I have to work on building up my endurance. Fortunately, I was sick for a very short time before I got my transplant, so I can still do most of the things I could do before the transplant.

Physically, I am enjoying life without being tethered to an LVAD. Freedom! I am working on improving my upper body strength and endurance so I can do even more. Emotionally, however, post-transplant life can be isolating. I have a few transplant friends who I can rely on to help me through the bad days. Despite how empathetic friends try to be, no one except other heart transplant recipients can understand the emotional challenges. There is a deep level of symbolism attached to the heart.

Linda Jara Help Hope Live

Linda uses her Help Hope Live campaign page to keep supporters updated

One of the biggest misconceptions about having a transplant is that your body is exactly as it used to be after you receive the new organ. Qualifying for a heart transplant was great, but it still isn’t as great as having your native heart. A new heart induces a significant adjustment period. I discovered how friends and family react to a medical crisis firsthand, and I identified people who could be a continued source of support. It was great knowing that there are at least some constants when your life is turned completely upside-down.

Linda Jara Help Hope Live

Friends provide ongoing support with a custom hashtag


Finding Support


I have the opportunity to discuss my emotional challenges with a transplant psychologist. Between her, my heart transplant friends and other members of my community, I am managing the best I can. Some days are difficult, but I have survived 100 percent of my worst days! As Emile Coue said, “Every day, in every way, I’m getting better and better.”

Linda Jara Help Hope Live

“Despite your empathy, you will never understand.”

The best thing to do for a loved one waiting for a transplant is to be supportive and understanding. What we are experiencing is something that, despite your empathy, you will never understand. People need to be mindful and make an effort to read our moods, but that doesn’t mean they have to walk on eggshells around us. Claiming that your cold or backache is “the worst thing in the world” sounds callous to someone waiting for a lifesaving (heart) transplant, especially because a heart transplant is one of the most complicated procedures out there.


Maintaining a New Heart


The transplant was not a cure. I have other medical conditions now that are not as serious as heart failure but are still significant. I developed prednisone-induced diabetes from post-transplant medications, but that condition should improve as my prednisone level decreases.

Linda Jara Help Hope Live

A transplant requires lifelong maintenance

In terms of maintenance, I need to take anti-rejection medications for the rest of my life as well as multiple other medications and supplements. I take 45 pills per day. I check my weight, temperature and blood pressure twice every day, and I check my blood sugar four times every day. It is my responsibility to notify my team if I am feeling off, notice a 2-pound weight gain, have a temperature of 99.5 degrees or higher or a blood pressure reading higher than 150/90. I have monthly right heart catheterizations and biopsies to check for rejection.

Exercise and a healthy lifestyle are also important. I take yoga classes and attend cardiac rehabilitation. I will be joining a cardiac rehab gym when this period of rehab is over.

Linda Jara Help Hope Live

“I take yoga classes and attend cardiac rehabilitation”


The Financial Side of Transplantation


I continue to fundraise with Help Hope Live post-transplant. I am on disability and fundraising helps to offset my monthly (out-of-pocket) medical expenses. Funds raised also helped to cover some of my mortgage payments when I was not receiving any income. A transplant is for life, and there will always be costs attached to this new lifestyle.

Help Hope Live helped me to get my fundraising efforts off the ground. The staff members that I have been fortune enough to meet are warm and make you feel like family. I remember laying in the hospital when the idea of fundraising was first presented to me. I was given the numbers for the cost of a transplant before insurance. The meds alone were over $60k (per year). I believe it is important to continue to fundraise so I won’t have to worry if unforeseen medical expenses pop up in the future.

Linda Jara Help Hope Live

Linda has no plans to stop fundraising post-transplant


A Lifelong Advocate


As a heart transplant recipient, I think it’s important to encourage people to register as organ donors. It would be difficult for someone to find a reason NOT to agree to donate if they were in the position to directly impact the life of someone they knew personally. It’s also hard to explain your choice not to be an organ donor to a living recipient like me!

Touched by Transplant 2017 Help Hope LiveLinda fundraises for the Help Hope Live Mid-Atlantic Heart Transplant Fund. Follow her Blog for updates. Need help covering pre- or post-transplant expenses? Learn about starting a fundraising campaign with our nonprofit.

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.

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: 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. 

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.

How You Can Step Up To Support A Family Facing A Medial Crisis

Donating to HelpHOPELive isn’t the only way to support a family facing the financial and emotional burdens associated with a transplant. Just ask Danielle Bailey, who has helped three HelpHOPELive clients plan bingo and poker fundraisers using her event planning experience. Learn why Danielle pours her time, energy and expertise into helping these families, and you’ll be inspired to do the same!

Danielle Bailey HelpHOPELive

Danielle, left, supports multiple HelpHOPELive families


How did you get involved in fundraising?


My first event was to help fundraise for a little girl with a double cochlear implant who was having trouble securing state funds to attend a school for children with hearing loss. I helped to plan a bingo event, since everyone has fun playing bingo and it’s a great way to raise money and have fun. We were able to raise $400 for her.

Since then, I have been involved with events raising funds for several causes, including autism awareness, cancer awareness, canine companions, and kids’ medical needs. As an AVON representative, in addition to helping plan fundraisers, I typically reserve a table at each fundraising event to show support and advertise my services and I donate raffle prizes.

Danielle Bailey HelpHOPELive

Danielle has engaged in fundraising for several nonprofit causes


How are you connected to the HelpHOPELive families you help?


[Former HelpHOPELive client] Mary Jo Lovely is my mother. She made the decision to donate my stepfather (Stephen Boyes)’ organs in 1998 when he suddenly passed away. She was diagnosed with COPD and was put on 24/7 oxygen at 42. She was put on the transplant waiting list and she received her first single lung transplant in July 2007. A year and a half later, swine flu hit our family and the disease immediately put my mother’s body into a state of rejection. She received her second lung transplant in June 2015.

Danielle Bailey HelpHOPELive

Danielle’s mother “received her second lung transplant in June 2015”

I met [HelpHOPELive client] Karlene Novotny in 1998 when she did my taxes. We clicked right away. She opened her own business which I followed for a few years before she became sick. I saw her name in a news article shared on Facebook and we got back in contact. I was shocked to learn how sick she was and how much she had gone through since we lost contact.

I first met Natalie Meyers in person on March 12, 2016 while I was hosting the bingo fundraiser in honor of Karlene. She had just started fundraising with HelpHOPELive a few days before the event. A co-worker shared her story with me and I reached out to her, contacted the local fire company and started the planning process to help her with a fundraising event. I invited her to the bingo fundraiser in honor of Karlene so that she could see how events were managed to better prepare herself for the event in her honor later this year.

Danielle Bailey HelpHOPELive

Flyer designed by HelpHOPELive for the upcoming event


What’s the hardest part about planning a fundraiser?


I give myself a good six months to plan everything to limit hurdles along the way. I send donation requests to local businesses, find vendors to set up at the event, make sure there is advertising via social media and flyers in local groceries stories where permitted, and so much more. The hardest part is waiting for the event to happen!

Danielle Bailey HelpHOPELive

This year, Danielle is expanding her wheelhouse to include poker events


What is the most satisfying part of planning a fundraiser?


There is so much that is fulfilling about fundraising. Being able to help someone in need gives you such an amazing feeling. The most satisfying part is seeing a room full of 200 people pulling together to help a single person. Seeing local businesses helping the community also makes you proud to be a part of it.

Danielle Bailey HelpHOPELive

Danielle loves ” seeing a room full of…people pulling together to help”

Knowing I helped make it all happen for a great cause gives me such a sense of accomplishment! I love helping where I am needed. The actual amount raised may not be like winning the lottery, but for these families, it’s close because of the tremendous impact. Every little bit counts.


Do you help because you expect these families to pay you back in the future?


No way. I do not expect anything from anyone that I help. I just do it to get the feeling of being able to help, and that is enough for me.


Can fundraising be both emotionally and financially significant?


After my mom had her first transplant, I realized how much everything related to the transplant was going to cost. When your family is stressing out about how they are going to pay for the transplant and the medications that will keep them alive, it can honestly tear them apart. That stress can affect the entire family and fundraising can make a difference.

I have referred people to HelpHOPELive for years. I love that the funds raised go directly to the individual’s medical needs and not into some CEO’s pocket!


What does the word HOPE mean to you?


HOPE is life! Every day we take advantage of the things we’re given. We were all dealt a certain hand in life; it is who we are and what will make us stronger. Help those who are less fortune, because someday you may be the one who needs help.

Danielle Bailey HelpHOPELive

“Someday you may be the one who needs help,” said Danielle


Like Danielle, you can make a difference for a family facing a medical crisis. Start a fundraising campaign with our nonprofit today at helphopelive.org. Learn how to help an existing HelpHOPELive family by calling 800.642.8399.

These Families Were Touched By Transplant

April is Donate Life Month, an opportunity to recognize and celebrate how organ donors and transplants have made a difference for families facing a medical crisis. Since April 2015, 167 HelpHOPELive clients have received life-altering transplants. Here are just a few of their stories.

touched by transplant full


A Transplant Can Change Your Life…


Terry, one month post-transplant: “To watch a man, a Marine Corps veteran, who has been robust and active all his life, become tired and sick and age overnight due to failing kidneys was torture for those who know and love him. Now, however, to watch that same man laugh and smile again less than 12 hours after receiving the amazing gift of renewed life through his daughter’s donated kidney is beyond words.”

Terry Cobb HelpHOPELive

Terry with his faithful friend


Deanna, two years post-transplant: “Deanna celebrated two years post liver transplant this past Saturday. Every day I look at her and think, “Wow, little girl, you are a miracle.”

Deanna3

Deanna proudly represents the gift of life


Emily, one month post-transplant: “Multiple family members, church friends and former classmates called to be tested for Emily, but her donor ended up being a near stranger–someone she had only worked with for a month when the donor discovered Emily’s need and said it was always a dream to donate a kidney. The two are no longer strangers!”

Emily Roush HelpHOPELive

Emily with her “reasons to live!”


Rick, seven months post-transplant: “I’ve got a new lease on life now. I can look forward to seeing my family and my grandkids again. I have realized that I can do this and I see the light at the end of the tunnel…there’s a lot more hope than there used to be.”

Rick1

Rick’s gift of life


Rachelle, 10 months post-transplant: “Today was my last day of chemo! Wednesday I celebrate my new stem cell birthday!!! Thanks for helping us get our life back!


Dudley: “I had a successful kidney transplant on March 3,2016. I could not have done it without your support and generous donations. I hope to…return to life with my new kidney, which has given me a new lease on life.”

Dudley Edmondson HelpHOPELive

Dudley (left) with his donor


Amy, one year post-transplant: “I feel outstanding! No longer need supplemental oxygen or a wheelchair! I am getting my life back!! Thank you all so much from the bottom of my heart!!! Every breath is a gift.

Amy E Burriss HelpHOPELive

Amy received “a perfect new set of lungs!”


…But A Transplant Can Also Be Financially Devastating


A transplant is not a fix-all solution. Life post-transplant may include unexpected out-of-pocket expenses and additional medical and financial concerns:

cost of transplant

Transplants come with a lifetime of expenses

“My employer’s leave of absence gives me…12 weeks [but] I am due to be out for three months. It looks like I will be out for 6 weeks unpaid.

“It’s been over 3 months and she’s just now NOT feeling awful. Now her function and counts are improving so we again have hope she will have some normalcy soon.”

“I am still unable to work and expect to be in financial dire straits for the next year.”

We were not prepared for the post-transplant care expenses. That has taken a financial toll on our family. Some things you have to take into account are lodging, rent or mortgage payments while you relocate, meals, gas, airfare, and lab and biopsy expenses, which are ongoing, frequent and costly.”

“Thirty-six months after my transplant date, Medicare will terminate my coverage and I will be fully responsible for all transplant-related medical expenses for the rest of my life. The expensive anti-rejection medications that I have to take for my lifetime are out-of-pocket expenses that will cost be hundreds or thousands every month.”


Fundraising Can Make A Difference!


touched by transplant fullA transplant is not the end of the journey. After a transplant, families may face a lifelong list of out-of-pocket medical expenses. That’s why HelpHOPElive is here to help transplant recipients and their families fundraise for a lifetime of transplant-related expenses, from immunosuppressant medications to follow-up medical visits and emergency care.

This video highlights how fundraising with HelpHOPELive can impact an individual’s life before, during and after a transplant. Visit helphopelive.org today to start or re-ignite a transplant fundraising campaign.