Tag Archives: Transplant

Touched by Transplant: This Mom’s Birthday Became Her Re-Birth Day

Teacher. Mother. Survivor. This is the story of Help Hope Live patient Kellie Murphy, one of four winners of our 2017 Touched by Transplant New Life Contest.

Touched by Transplant 2017 Help Hope Live


Kellie Murphy’s world was turned upside down when she received a diagnosis of multiple myeloma, a blood cancer caused by malignant plasma cells in bone marrow. The mother of two learned that to survive, she would need a bone marrow transplant as soon as possible.

Kellie also learned that the transplant would come with a host of out-of-pocket medical expenses, including co-pays and deductibles, temporary relocation and travel, caregiving costs, and a lifetime of immunosuppressant medications. She began fundraising with Help Hope Live as part of the Mid-Atlantic Bone Marrow Transplant Fund in February 2016.

In May 2016, Kellie found out that the bone marrow transplant she needed would be moving forward. “Believe it or not,” she wrote on her Help Hope Live campaign page, “cancer has made me realize how blessed I truly am.”


Last month, she sent us this incredible update:

“On May 31, 2016, I was admitted to the University of Maryland Medical Center to receive a bone marrow transplant in the hopes of going into remission from multiple myeloma. That day was also my birthday and my daughter’s birthday.

My time in the hospital was difficult, but the staff made it much easier. I will always remember their kindness. I had so many people to fight for, especially my son and daughter.

Now, almost one year later, I am engaged to be married, and my cancer is in complete remission. This year on May 31, I will turn 50 and my daughter will turn 21. We plan on really celebrating our joint birthdays and my new birthday since I have this chance at new life.

I am here because of others’ kindness, generosity, and many prayers. Thanks to Help Hope Live, we were able to make that difficult time a little easier on the people who were caring for me, and I will be forever grateful.

As of May 2017, Kellie is within $500 of her Help Hope Live fundraising goal. She fundraises for the Help Hope Live Mid-Atlantic Bone Marrow Transplant Fund.

Kellie Murphy Help Hope Live

Kellie, right, with her daughter, Amber


Touched by Transplant 2017 Help Hope LiveThank you for your story, Kellie! If you have been moved by this story, make a donation to Help Hope Live in honor of Kellie today at: https://helphopelive.org/campaign/10362

Touched by Transplant: Life With PKD and My “Superhero” Living Donor

Help Hope Live patient Liz Casperite received a kidney transplant with help from living donor Maria Weaver-Hollowniczky in September 2015. The lifesaving gift to fight Liz’s polycystic kidney disease (PKD) cut short her anticipated 5-year wait for a deceased donor kidney. Here’s how Liz has been touched by transplant.

Touched by Transplant 2017 Help Hope Live


If you are like most people, polycystic kidney disease (PKD) is the most common genetic disease you’ve never heard of. I was diagnosed with PKD in 2004 at age 32. A routine physical found slightly elevated blood pressure. My general practitioner was proactive in ordering additional tests. During the final test, an ultrasound, they found innumerable cysts on my kidneys and liver. Average kidneys are the size of a fist. My kidneys were growing to the size of footballs.

Liz Casperite Help Hope Live

Liz was diagnosed with polycystic kidney disease in 2004

When you have PKD, the veins in your body that help filter blood grow into irregular cysts instead of growing straight. Eventually, blood that gets caught in the cysts and doesn’t filter leads to kidney failure.

After I was diagnosed, I learned that PKD affects more people than sickle cell anemia, cystic fibrosis, muscular dystrophy and down syndrome combined. I also learned that there is no cure for PKD, and that my best chance for a healthy life would be to join the kidney transplant waiting list. I was on the transplant waiting list for two and a half years without getting “the call.”


When I was in renal failure due to PKD, I had very little energy. As my kidney function decreased, I could really only do one activity per day: take a shower, cook, or grocery shop, but not more than that. My kidney function dropped below 20% and I knew I did not have long before my kidneys would fail. More than 10 people were tested to become a living kidney donor for me, but none were approved through the rigorous health testing process.

Liz Casperite Help Hope Live

Once listed, Liz reached out to find a living kidney donor

I got the word out that I needed a living donor using car magnets, t-shirts, and even a sign outside of my house. A friend created a post for me on Facebook and, as friends shared it, a total stranger to me saw it and decided to get tested. That’s how I met my angel, Maria!


After months of testing, we found out that we were a match. I was very fortunate to receive a kidney from a living donor right before I would have had to go on dialysis. Living donor kidneys last almost twice as long as deceased donor kidneys, on average.

Maria hates being called a hero. But she’s reluctantly agreed to the title “superhero” instead! She says that since health was her superpower, she knew she had to share it with others.

Liz Casperite Help Hope Live

Living donor Maria, left, has “reluctantly agreed to the title of superhero”


Many people think transplant is a cure, but really, a transplant is just a treatment for kidney failure. I am fortunate in that my PKD will not attack the new kidney, but I have a polycystic liver that will continue to grow in size and will require additional treatment.

Today, I follow a strict regimen to suppress my immune system to keep the kidney. I take medication every day, exercise and eat a plant-based whole foods diet. Even though I went to physical therapy after the transplant and followed doctor instructions, I got a serious hernia. An operation fixed the hernia but I am now restricted from ever lifting more than 10 pounds. As a treatment, transplantation comes with its own very serious side effects. Being permanently immunosuppressed means being very careful about who I encounter. Even a small cold can negatively affect my new kidney function.

Liz Casperite Help Hope Live

Liz says life after transplant involves permanent lifestyle changes


I still actively fundraise for Help Hope Live. The funds raised in my honor are indispensable for helping me cover the monthly cost of post-transplant medications and trips to and from my transplant center for continuing care.

Liz Casperite Help Hope Live

Liz creates Donor Beads in exchange for donations to Help Hope Live


I am a very active advocate for transplant. I have been lobbying Congress since 2006 to support kidney-related health care legislation. Maria and I were recently in DC to lobby for the Living Donor Protection Act of 2017 to help eliminate barriers to living donation. We volunteer with the National Kidney Foundation, the PKD Foundation and Gift of Life, and we participate in walks and events every year to raise funds and awareness. I have spoken at high schools about kidney disease and we both act as mentors to those starting out the transplant process. There are almost 100,000 people waiting for a kidney in the U.S. and we are passionate about spreading the word to make a difference.

Liz Casperite Help Hope Live

Liz, right, uses every opportunity to advocate for kidney disease patients and donors

My donor, Maria, and I speak to everyone we can about living donation. Maria was inspired to donate a kidney to me because she knew someone who had donated. We hope to be those people for others.

Liz Casperite Help Hope Live

“Kidney sisters” Maria and Liz


Touched by Transplant 2017 Help Hope LiveLiz and Maria support transplant candidates and living donors through the Kidney For Liz Facebook page. Liz fundraises for the Mid-Atlantic Kidney Transplant Fund at helphopelive.org

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.

Transplant Caregiving “Is Not My Calling, But It Is What I Do”

In October 2013, Douglas Petrie complained to his doctor about shortness of breath. A lung specialist diagnosed him with idiopathic pulmonary fibrosis (IPF). By September of the following year, a lung infection had propelled Doug onto the lung transplant waiting list. This is Doug’s transplant story, as told by his wife and caregiver Carol Petrie.


Doug got his transplant August 16, 2015. As I drove home at 2 a.m. after the operation and seeing Doug in the ICU, I thought, “Doug has been born again. He has a new life. He can breathe.” This is the first time I have written about our adventure.

Douglas Petrie HelpHOPELive

Doug, left, was “born again” after transplant, says wife Carol

I have likened our transplant experience to a pregnancy. We were on call, with a bag packed, and Doug was on the list for nine months. Wherever we went, we had to travel with Doug’s supplies just in case.

When Doug was first diagnosed, he was told, “Don’t worry–you have the slow-moving kind of IPF.” What we didn’t know was that even a cold could cause his health to deteriorate quickly. We had to learn that everything was a “big deal.” Even though I had done a little research on the Internet, I did not know which questions to ask. We are very grateful for the medical professionals who helped us because we were out of our depth.

We could see Doug’s health go downhill. We kept liquid oxygen in the house for him to use. When he had a doctor’s appointment, we always had to make sure we packed enough oxygen. Going anywhere became a production. We learned to adapt and manage Doug’s time so we wouldn’t miss any big occasions.

Douglas Petrie HelpHOPELive

Carol “could see Doug’s health go downhill” pre-transplant

Doug got a bill from the hospital for $572,000 about four months after the transplant. I was told the whole package would be about $1 million. There are constant doctor visits to pay for. While Doug took two medications prior to his IPF diagnosis, after transplant and for the rest of his life, he’ll be taking over 15 pills per day. He can’t even skip one day; these pills keep him alive.

Doug’s insurance helps to reimburse us for mileage, tolls, some meals and some lodging up to a year after transplant. We have not been able to qualify for help from Medicaid like some organ transplants do.

HelpHOPELive has been a big help to us. The bills from the pharmacy go straight to HelpHOPELive for payment so we don’t have to cover the cost up front. The staff at HelpHOPELive is helpful and knowledgeable and has advised me on which fundraising ideas work better than others.

Douglas Petrie HelpHOPELive

Carol added Doug’s HelpHOPELive page to her email signature to reach new contributors

A doctor friend of ours sent out letters to his colleagues informing them of Doug’s condition and asking for donations, and they raised more money than any one big fundraiser would have. I’m working on an idea for a large annual event that would pay for Doug’s medicines for a year.

Doug says he had to learn to breathe again after the transplant. With a few precautions, he should be able to do almost anything. It’s been a year since his lung transplant and we are forever grateful to the donor and family, and to all of the folks at Tampa General Hospital and HelpHOPELive.

Douglas Petrie HelpHOPELive

Doug “should be able to do almost anything” post-transplant

This has been my third time serving as a caregiver. I took care of my parents before they died. I have never been interested in medicine or taking care of the ill, so taking care of someone this time around is surreal. This is not my calling, but it is what I do for a loved one.

There are decisions I had to make for the family when I first took on this role. I had to tell Doug he had to stop driving until after the transplant. I had to make sure I had all the contact numbers for doctors and the hospital. It was my job to tell the doctors how Doug was progressing. I had to make sure Doug did not do too much. It was frustrating for him when he would become tired and he would not be able to do little things like carry dishes from the table to the kitchen. I had to learn [to identify] when he reached this level and help him calm down.

You need others to help when you are a caregiver. Our son, Chase, and a young family friend helped out. It is good to have someone on call who can drive for you. After transplant, Doug had to see the doctor once a week for 8 weeks. The doctor was an hour away and the drive became tiresome for us.

Douglas Petrie HelpHOPELive

“You need others to help when you are a caregiver.”

Since the transplant, I’m more of a manager and I’m less hands-on. Doug takes his own vital statistics daily, checks his lung capacity and logs the information to take to monthly clinic visits. I just make sure it gets done.

We have tried through this journey to keep our sense of humor and that has been a big help. We have also had a strong prayer support system. I have tried to carve out time for myself away from the house, whether it’s a movie, lunch with a friend or a haircut.

Doug and I have a deep faith and that has kept us grounded. I look at Isaiah 43:1-3, a passage that includes two of my favorite words from scripture: “fear not.” I claimed this scripture for our family and have gone back to it time after time, praying it back to God.

Our neighbors and friends have helped with contributions and checking in on me and our son. I have a group email list for family, friends and contributors and I have a group text for family to keep everyone up to date. Between that, posting on Facebook and calling our church, I can have several hundred people praying for Doug in a very short period of time. This has been a source of hope and assurance for us.

I would advise other transplant families to keep their sense of humor and laugh lots. Doug recommends to other transplant families that they should do everything medical professionals tell them to do, no more and no less.

Don’t try to do more because you’ll tire yourself out. Be sure the doctors order home health support for you including a physical therapist. Don’t be afraid of filling up your pill box. Don’t be afraid of calling your post-transplant coordinator with questions. Don’t be worried about raising money – HelpHOPELive will help you.


Learn more about life after transplant by checking in with Doug and his family at helphopelive.org. Want to learn more about transplant preparations, costs and fundraising options? Find more transplant stories like this one.  

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

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

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

Monty Scott HelpHOPELive

Monty, left, with his wife and two children


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


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

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

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

Monty Scott HelpHOPELive

Monty and family attended the 2016 Heart Walk to raise awareness

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

Monty Scott HelpHOPELive

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

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

Monty Scott HelpHOPELive

Monty’s family supports him during his transplant preparations


The out-of-pocket expenses will surprise you.


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

Monty Scott HelpHOPELive

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

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

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


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


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

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

Monty Scott HelpHOPELive

“Fundraise with HelpHOPELive!” advises Monty’s wife

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

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


Rallying your community can provide financial and emotional support.


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

Monty Scott HelpHOPELive

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

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

Monty Scott HelpHOPELive

Monty’s fellow high school alumni support his fundraising efforts

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

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

Monty Scott HelpHOPELive

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

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

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

Monty Scott HelpHOPELive

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


Transplants change lives.


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

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

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

Monty Scott HelpHOPELive

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


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

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

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

Lauren Ann Arkens HelpHOPELive

Lauren Ann, Lily and Tyler Arkens


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


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

Lauren Ann Arkens HelpHOPELive

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

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


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


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

Lauren Ann Arkens HelpHOPELive

Lauren sees more doctors now that she is “healthy”

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

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

Lauren Ann Arkens HelpHOPELive

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


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


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

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

Lauren Ann Arkens HelpHOPELive

Lauren must work daily to keep her lungs healthy


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


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

Lauren Ann Arkens HelpHOPELive

Transplants are mentally, physically, emotionally and financially draining

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

Lauren Ann Arkens HelpHOPELive

“Nurse Lily” helps mom with home health care


How did you learn about HelpHOPELive?


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

Lauren Ann Arkens HelpHOPELive

Fundraising helps cover out-of-pocket medical needs

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


Why is fundraising important to you on this transplant journey?


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

Lauren Ann Arkens HelpHOPELive

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

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


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


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

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


How important are friends and family members during this process?


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

Lauren Ann Arkens HelpHOPELive

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

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

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


Tyler, can caregiving during a transplant change a relationship?


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

Lauren Ann Arkens HelpHOPELive

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


Are you an advocate for organ donation?


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

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

Lauren Ann Arkens HelpHOPELive

Tyler celebrates his wife’s transplant journey


What does the word HOPE mean to you?


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

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

Lauren Ann Arkens HelpHOPELive

“There is something better on the other side.”


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