Category Archives: Transplant

14 Amazing Quotes About Organ Donors for National Donor Day

For many of us, February 14 represents more than roses and candy hearts. National Donor Day occurs on this date every year. This awareness day provides an opportunity for transplant recipients and their families to celebrate the selfless gifts of living and deceased organ donors who gave them a ‘second chance at life.’

It can be difficult to understand the impact of organ donation until you experience it yourself. When he received our 2017 Help Award, our client Bill Soloway repeatedly recognized the immense impact his heart donor has had on his life.

Skip to 3:20 to hear Bill’s thoughts:

14 Favorite Quotes About Organ Donors

“I believe we got married for a reason: she was sent down from heaven to be my angel.”

-Derek Avillanoza on receiving a kidney from his wife

A part of the Southwest Kidney Transplant Fund

“I am living proof of what an organ donor can do. It is a chance at a better life.”

-Lauren Arkens on lungs received from a deceased donor to combat cystic fibrosis

A part of the North-Central Lung Transplant Fund

“My kidney donor exemplified unconditional love toward me. She did the most selfless thing one can do for another: she was willing to lay down her life as she donated one of her kidneys to me.”

-James Michael McLester on his “angel” living kidney donor and best friend Laura Workman

A part of the South-Central Kidney Transplant Fund

“Amy and I share a bond that is not comparable, even to a sister or your best female friend. She has given me a part of her. She has given me life.”

-Deb Brock on her living kidney donor Amy Krontz, who did not meet Debra until she was approved as a living donor

A part of the Great Lakes Kidney Transplant Fund

“In my eyes, the donor family was so brave to go through such a time while also making decisions that would forever change my life and the lives of possibly many others.”

-Kathe Wimberly Neely on gratitude for her donor family that made her kidney/pancreas transplant possible

A part of the South-Atlantic Kidney/Pancreas Transplant Fund

“Every breath is a gift.”

-Amy E Burriss on lungs she received from a deceased donor

A part of the South-Atlantic Lung Transplant Fund


“I want to let the donor and their family know they are giving a gift only they, God, and the medical teams can give. [It is] a gift there are no words for. Thank you just doesn’t say enough.”

-Children of Monty Scott on the donor heart their father is waiting for

A part of the Northeast Heart/Kidney Transplant Fund


“Maria hates being called a hero. But she’s reluctantly agreed to the title superhero instead.”

-Liz Casperite on her living kidney donor Maria Weaver-Hollowniczky

A part of the Mid-Atlantic Kidney Transplant Fund

“That donor didn’t just impact Bill; he impacted Bill’s family, friends, the people who had yet to become Bill’s family and friends, including his future grandchildren. A donor’s impact is still being felt many years later. They have left a legacy not many can claim.”

-Pat McEntee on the impact of a deceased donor on his transplant mentor Bill Westerman

A part of the Great Lakes Heart Transplant Fund

“I had a living liver donor. Her name is Madalyn and she is my hero.”

-Amanda Washek, transplanted in April 2015

A part of the South-Atlantic Liver Transplant Fund

“Every day my donor will be on my mind and in my prayers. My donor is what lifts me.”

-Annie McMahon on her deceased lung donor

A part of the New York Lung Transplant Fund

“Every day I wake up thankful for the opportunity my dad has given me.”

-Christopher Anthony Zerfass on receiving a kidney from his father

A part of the Mid-Atlantic Kidney Transplant Fund

“I thank God and my donor every minute of the day for my life. I have had a second chance at life.”

-Josh Bulvin, who received a donor heart in March 2010

A part of the Mid-Atlantic Heart Transplant Fund

“This was the greatest gift our family could ever receive.”

-Victor Melendez on receiving a deceased donor’s kidney

A part of the New York Kidney Transplant Fund

Whether you are a transplant candidate on the waiting list, a grateful recipient, a selfless organ donor or member of a donor family, we are glad to be part of the incredible journey that is transplantation. If you have an organ donation story you’d like to share, email us, and you could be featured on our blog during National Donate Life Month in April.

A Tribute to the Gift of New Life

During Donate Life Month in April, we asked you to enter our Touched by Transplant “New Life” Contest by telling us how transplantation has impacted your life. We shared stories from our 4 winners during May and June, but we can’t resist the chance to share a piece of ALL of the incredible “new life” testimonies. Here they are.

Touched by Transplant 2017 Help Hope Live

Amanda Washek Help Hope Live

“I had a living liver donor. Her name is Madalyn and she is my hero.

As I write this, I am nearly a year post-transplant. I lost the girl I was in May 2014 when the letters PSC were first uttered. But I gained more than I ever imagined. I have a greater appreciation for life.

I am utterly in love with feeling like a human being. I love waking up each morning and remembering that my liver works. I can take long walks with my husband. I can climb mountains. I have a future. And it is all due to the Lord, my donor, and my surgeons. I am forever indebted.”

Amanda Washek, South-Atlantic Liver Transplant Fund

Transplanted August 11, 2015

Annie McMahon Help Hope Live

“I am so grateful for my donor on my 6-month lung-iversary! These past months have been an amazing experience and I can’t wait to see where my new lungs take me. Every day my donor will be on my mind and in my prayers. I am so gracious for this amazing gift I have received. My donor is what lifts me.”

Annie McMahon, New York Lung Transplant Fund

Transplanted December 2016

Brian McCormick Help Hope Live

“Brian received his lifesaving heart and kidney transplant in the early hours of April 13. Words cannot express our gratitude towards the donor and their family.

An LA Times reporter was kind enough to connect us to former Major League Baseball player and coach Rod Carew, who underwent the same surgery in December 2016. Brian received a special phone call from Rod.

We are thankful to see Brian smile again. We want to promote the importance of organ donation not only in April during Donate Life Month, but year ‘round. Keep the pinwheels spinning!

-Wife of Brian McCormick, Great Lakes Heart/Kidney Transplant Fund

Transplanted April 13, 2017

Christopher Anthony Zerfass Help Hope Live

“At 24 years old, receiving the gift of life from my father has allowed me to see what else life has in store for me. Every day I wake up thankful for this opportunity my dad has given me.

Since the transplant, I have grown closer to people that mean the most to me and made new friends. I have fallen madly in love with the girl of my dreams, Meghan, and we’re getting married in September and are in the process of buying our first home.

My new (61-year-old) kidney has allowed me to experience so many beautiful things in life! There is no greater joy in the world to me than to be surrounded by the amazing people I have in my life.”

Christopher Anthony Zerfass, Mid-Atlantic Kidney Transplant Fund

Transplanted September 10, 2014

Deborah Hopper Help Hope Live

“I received a double lung transplant in 2012 and I’ve been in chronic rejection since 2015. Despite this diagnosis, I’ve actually been doing pretty well. I’m still able to do some things and enjoy myself.

My two dogs and my husband, Mike, are the loves of my life. I’m able to take our dogs on walks, something I couldn’t do before transplant. My husband does so much to lift my spirits. My health could be better, but life is good. And I take it as it comes.”

Deborah Hopper, Northeast Lung Transplant Fund

Transplanted May 3, 2012

James Michael McLester Help Hope Live

“Though it was a long and very difficult road, I know God has blessed me in so many ways. A friend did the most selfless thing one can do for another: she was willing to lay down her life as she donated one of her kidneys to me.

My health has been remarkably good since the surgery. It feels nothing short of a miracle to wake up and sense your body becoming stronger, your system cleaned of toxins and waste, and dialysis no longer needed.”

James Michael McLester, South-Central Kidney Transplant Fund

Transplanted December 9, 2015

“I was at Baylor University Medical Center in Dallas this week for MRI labs. It hit home when two ladies in the lab who were waiting for bloodwork talked about one giving the other her kidney. As I continue to wait for a liver transplant, it’s awesome just to be part of those kinds of conversations.  We are blessed.”

Janet Martin Kafer, South-Central Liver Transplant Fund

Josh Bulvin Help Hope Live

“I don’t know how to send pictures or videos to you, but I do know how much I appreciate living. In the past seven years, I have had a second chance at life. I now have two beautiful grandchildren. I thank God and my donor every minute of the day for my life. I would like to thank Help Hope Live for such wonderful service. God bless us all.”

Josh Bulvin, Mid-Atlantic Heart Transplant Fund

Transplanted March 10, 2010

Joseph Dinas Help Hope Live

“Joe was the youngest of five children. His parents carried genes that would end up fighting each other and destroying the lungs of three of the four boys in his family. Joe’s two older brothers died of pulmonary fibrosis before they could be transplanted.

Joe was placed on the transplant list. On the evening of March 24, 2015, we got a call in the middle of the night. Joe was sleeping so soundly that I hated to wake him. Joe was dreaming that a woman said to him that she was leaving this world and that she was giving him her lung.

I had so many emotions, excited, nervous, and sad thinking someone lost a loved one for this to happen. And then in the next moment so very, very appreciative that they provided us a chance of having more time and more life together.

Joe came home in record time. We are still going strong and are so appreciative of the person who gave us BOTH the gift of life.”

-Wife of Joseph Dinas, Southeast Lung Transplant Fund

Transplanted March 24, 2015

Joseph Ozoniak Help Hope Live

My new life is also a new start. I am able to move closer to my transplant center for check-ups and future care.”

Joseph Ozoniak, South-Atlantic Heart Transplant Fund

Transplanted May 28, 2011

Kevin Jamieson Help Hope Live

“For the first time in ten years, we finally took a trip we had been planning. We took a trip to Denver to visit family and celebrated our freedom in life. God is our co-pilot.”

Kevin Jamieson, Southeast Liver Transplant Fund

Transplanted October 23, 2015

Maylin Palma Help Hope Live

“God and all kinds of people have given me my life back little by little. Because I’m back on track in my life, I can enjoy it every second, which is the case only for people who pass through this kind of experience. We learn how precious life is. I’m giving back to my community, working in volunteer medicine, helping people in need and giving them self-esteem and the hope that they can get back to a normal life. We need to share this love with the world!”

Maylin Palma, Great Lakes Kidney Transplant Fund

Transplanted July 21, 2015

Pat Donovan Help Hope Live

My prayers were answered in July when I received a bi-lateral lung transplant. My new life had begun. I could talk and laugh with my family again without coughing. As my recovery progressed, I began to imagine once again the activities I enjoyed before idiopathic pulmonary fibrosis.

My recovery was so successful that in February I was able to go for a 40-minute snowshoe trek with my wife, Kim, and our daughter, Laura, a favorite winter activity that I haven’t been able to do for the last six years. I was able to blow out my birthday candles at my 60th birthday.”

Pat Donovan, Northeast Lung Transplant Fund

Transplanted July 31, 2016

Susan Dow Smiley Help Hope Live

“It means bringing new life into a body oxygen depleted

Returning to activities without being tethered and seated

New opportunities, new beginnings have started

The faces of loves ones not broken hearted

An ending rescripted

A future unrestricted

Hearts uplifted

Time gifted

The ability to breathe without difficulty and strife

Lungs reconstructed by a surgeon’s knife

My joy is great, my heart is full

Thankful to God, I am eternally grateful.”

Susan Dow Smiley, Southeast Lung Transplant Fund

Transplanted February 18, 2017

Tom Cumming Help Hope Live

“Tom had a five-organ transplant at Jackson Memorial Hospital in December. He is doing good: all of the organs are working, thanks to the donor. We waited for two years. We are hoping to go home soon. It has been an adventure.”

-Wife of Tom Cumming, Southwest Liver Transplant Fund

Transplanted December 2016

Victor Melendez Help Hope Live

“My husband, Victor, received his kidney on December 8, 2016. This was the greatest gift that our family could ever receive. My kids love seeing their daddy happy and healthy. We are enjoying every minute with him and making lots of memories together.”

-Wife of Victor Melendez, New York Kidney Transplant Fund

Transplanted December 8, 2016

Touched by Transplant 2017 Help Hope Live

If you know someone who needs help covering transplant-related out-of-pocket medical costs, start a fundraising campaign in his or her honor with help from our nonprofit at

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

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

Touched by Transplant 2017 Help Hope Live

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

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

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

Pat McEntee

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

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

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

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

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

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

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

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

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

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

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


Touched by Transplant: Before My Earthly Eyes Opened

In 2014, David Tedrow’s liver function, and therefore his life, was coming to an end as a result of non-alcoholic cirrhosis. On April 3 of that year, hope was rekindled for David and his family as he received the liver transplant he needed to survive. David is one of four winners of our 2017 Touched by Transplant “New Life” Contest in honor of April’s Donate Life Month.

Touched by Transplant 2017 Help Hope Live

“April 3, 2014 was not a good day. I was dying. My liver had pretty much shut down. My brain was filling with ammonia. My thinking was clouded. I was so tired. All I wanted to do was sleep. My abdomen was distended with fluid and was very uncomfortable. How much longer?

Somewhere in the fog, I heard the sound of water lapping at a shore. As my vision focused, I saw that it was not water lapping at a shore, but an ancient African woman washing wet clothes at the end of the water. She was rhythmically slapping the wet clothes against a rock. She stood, looked at me, and began to transform into a young man. He looked confused, frightened, and all-knowing at the same time.

We shared secrets (I still don’t know what they were). White light began to course through me and into him. He took on a beatific countenance and vanished.

Around April 6, my earthly eyes began to open. The fog was gone, and the world was new. My family was there, same as they always were, but I was different. No one but me knew how hard the next month would be as I put the world back together. I could not let them know. They had been through so much.

But I was ALIVE.

Three years later, I am fully recovered. I am starting a new business, meeting new people, getting involved with organizations, and even joining meetups. And amidst all of this breaking of new ground, the most precious beginning of all: becoming a grandparent. This life is good!”

David Tedrow Help Hope Live

David with his wife, Mary

Touched by Transplant 2017 Help Hope Live

We love David’s unique vision of new life. If this story spoke to you, read more about David’s story at:

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:

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

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.