Tag Archives: organ donation

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.

6 People Who Inspire Us With Courage, Strength and Selflessness

Our signature fundraising gala Live It Up! kicks off at 6 p.m. on Friday, September 23, 2016 with a VIP reception for our generous sponsors and this year’s Live It Up! Awardees. Doors for the main event open at 7 p.m. Get your tickets today!

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Each year we honor individuals who have impacted our organization and their communities with their bravery, selflessness and strength with our annual Help, HOPE and Live Awards.


This year’s Help Award goes to…The Zeldathon Team for excellence in fundraising.


In December 2015, a group of avid video game players and live streamers joined forces for a 150-hour “The Legend of Zelda” gaming marathon. Streaming their activities live, the gamers collected donations for HelpHOPELive throughout the course of the marathon. Gamers encouraged donations from viewers at home by initiating “donation trains” and incentives, turning watching gameplay into an interactive and collaborative philanthropic experience.

Zeldathon Hope raised over $250,000 for HelpHOPELive through the generosity of contributors in over 40 countries. The funds raised were used to meaningfully contribute to HelpHOPELive’s mission to support community-based fundraising support for people with unmet medical and related expenses due to cell and organ transplants or catastrophic injuries and illnesses and to provide one-time emergency assistance grants for families facing an immediate financial need due to a medical crisis.

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“We pursued HelpHOPELive because we wanted to work with a charity that could make a direct impact through donations,” explained Zeldathon executive director Matthew Moffit. “We’re creating something more than just a marathon – it’s a real community, dedicated to the forces of good.”

Moffit, Zeldathon assistant director Liz and spokesperson Brooke are among the dedicated gamers who devoted their personal time to planning, managing and streaming the nonstop gaming marathon. They hope to support HelpHOPELive’s mission again during a future Zeldathon.


The HOPE Award goes to…Maria Weaver-Hollowniczky and Elizabeth Casperite for living donation and organ donor awareness.


Liz Casperite was diagnosed with polycystic kidney disease in 2005. Her kidneys grew from fist-sized to football-sized. She joined the transplant waiting list in 2013, facing an average wait time of 4 or 5 years.

Liz and her family initiated a social media push to help Liz cut her wait short by finding a living kidney donor. Maria Weaver-Hollowniczky, a friend of a friend, saw Liz’s social media efforts and felt moved to step forward as a potential living donor.

Liz received the gift of life from Maria on September 17, 2015. Liz and Maria became inseparable during transplant preparations and have stood by each other ever since, partnering to share their story and lobby Congress in support of living donor protection legislation. They attended the 2016 Transplant Games in Cleveland, Ohio.

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Fundraising with HelpHOPELive will be an ongoing effort for Liz, who still faces post-transplant medical expenses from co-pays and travel for follow-up appointments to a lifetime of expensive antirejection medications. Liz must maintain Medicare A and B coverage until 2018 to financially protect Maria in case of post-transplant complications—something they hope to change for future living donors through their advocacy of the Living Donor Protection Act.


The Live Award goes to…John Michael LeMoine for inspiration after injury.


In July 2014, John Michael LeMoine was an Air Force airman enrolled in a firefighting technical school. On a day off, John was goofing around on the beach with his buddies. To avoid hitting a child playing on the beach, John jumped into the air to try to flip over him. He kept the child safe but shattered his cervical spine in the process.

It took six weeks of intensive therapy before John could wiggle his big toe.

John devoted himself to exercise-based therapy. Once insurance stopped covering his physical therapy, he turned to HelpHOPELive to fundraise for a lifetime of out-of-pocket medical and related expenses. In March 2015, John was able to stand independently for the first time since his injury.

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John and his mother, Lori, document his progress and his post-injury adventures, including skydiving, off-roading and adaptive sports with support from the Air Force Wounded Warrior program. “He can now make a sandwich,” Lori wrote in February 2016. “It seems so simple, but this was an impossible task before. These small achievements give him his independence back.” John embodies what it takes to build an engaged, motivated and multi-faceted new life after injury.


This year’s awardees will be honored at Valley Forge Military Academy’s Mellon Hall on September 23 from 7 to 11 p.m. among HelpHOPELive’s generous local supporters, board, staff and friends. Join us to celebrate the incredible milestones clients, volunteers and donors achieved in 2016!

Touched By Transplant: When I Met My Heart Donor’s Family

John “Skeeter” Coleman received a heart transplant in February 2016. Here’s what happened when he sought out the family of the man who donated his heart.

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As soon as I was well enough after my heart transplant, I went to visit my donor’s family. It was the biggest emotional rush I have ever had in my life aside from the birth of my children.

Skeeter listens to his new heart

Skeeter listens to his new heart

Hospitals typically do not allow direct contact between donor families and recipients for a period of time after a transplant. I mailed a letter to my donor’s family through my hospital. As soon as I sent the letter, the hospital provided me with a letter the donor’s family had written back in December. This is what it said:

This is a Christmas card to you from me and my family. My husband’s name was Paul. He was a great outdoorsman who loved the landscape and loved the military. He was a great father and husband for 22 years. We loved him. I’m just hoping you can appreciate his organ, whichever one you got.

I sent a copy of the letter to my daughters and son. They got on the Internet and started researching. Sure enough, my daughter managed to find Theresa, Paul’s wife, on Facebook. She accepted our Friend Request and got to learn more about me and my HelpHOPELive campaign. That’s when I turned to my daughter and said, “Let’s go find them.” And that’s what we did.

We met Theresa and two of her three sons at the Jiffy Mart in Chester, Texas, a town of just 312 people located a 4-hour drive from our hometown of Euless. Theresa said, “Would you like to go with us to the cemetery?” I told her I would love to.

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Skeeter visits his heart donor’s grave

At the cemetery, I got down on one knee and started rubbing my hands through the dirt and talking to Paul. All these words were coming out and all these feelings. All these tears started flowing and dripping in the dirt. I don’t know how long I was there. They had to help me stand back up, because I didn’t have the strength to get up on my own.

I asked if I could take them out to lunch. At a café, Theresa introduced me to all of her friends. We had catfish, fresh vegetables, good old country cooking while we talked. We talked about those boys’ daddy and what a great man he was. Paul’s best friend was there, and we talked to him about all the people who were recipients. Two people got kidneys, one person got lungs, one person got a liver, one person got part of his spine and I got his heart.

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Skeeter with his heart donor’s wife and children

After lunch, Theresa invited me back to their house. She showed me all kinds of pictures of Paul. After a few more hours, we made the four-hour drive back to Euless. I was exhausted.

We stayed in touch after that. I’d like to get back together with them again. They have been a great encouragement and source of hope to me. I hope I can be the same for them.


touched by transplant fullNeed help fundraising for a transplant? Start a fundraising campaign today at helphopelive.org. Keep up with Skeeter on his HelpHOPELive campaign page.

Mending A Broken Heart: Love And Transplantation

Rick Brittell was diagnosed with congestive heart failure in 2011. In April 2014, Rick and his wife, Susie, moved from their home in Boise, Idaho to a trailer in Salt Lake City, Utah for 2 ½ months so that Rick could receive a left ventricular assist device (LVAD) as a bridge to a heart transplant—his only option for a healthy life. Rick and Susie returned home to Boise but left their home once again in April 2015 to move into a Salt Lake City apartment. Rick received his transplant in September 2015. Rick and Susie will finally be able to return home in March 2016 after a full year spent away from home. They have been fundraising with HelpHOPELive since January 2015.

Rick and Susie Brittell HelpHOPELive

Rick and Susie Brittell.


Why did you make the decision to wait before getting Rick listed for a transplant?


Rick: I could have been listed for transplant right after I received the LVAD but I chose to wait until April 2015 when my Medicare took effect. Had I proceeded right away with being listed, the procedure would have been covered but not the post-transplant medications, leaving me to cover $7,000 to $14,000 out-of-pocket each month. Once Medicare took effect, the surgery and the medications were both covered and the post-transplant monthly medication costs dropped to $400 to $600 per month.

Once listed, multiple factors influence how long a candidate waits for a transplant, including the candidate’s health and the number of organs available in a particular region. According to the United Network for Organ Sharing, “you may receive an organ that day, or you may wait many years.”

LVAD heart transplant

Rick lived with an LVAD until his transplant.


How did you feel when you found out you would have to relocate?


Rick: It was a shocker. When we skyped with our 3-year-old grandson, he would ask, ‘Why did you leave me?’ I couldn’t even talk to him because it tore me up. We were suddenly cut off from our family and friends and we had to make a whole new life for ourselves.

Transplant candidates must be able to leave home and come to a specific medical facility as soon as they receive word from their medical team that an organ is available. That’s why some candidates are asked to relocate close to that medical facility while they wait for “the call.”


How has the waiting process affected you emotionally?


Rick: I couldn’t drive for 2 years after I got the LVAD. I became completely dependent on my wife to take me everywhere for everything from a medical appointment to a simple trip to the store. After 40 years of employment, I had to stop working cold turkey. I had to deal with feelings of guilt and worthlessness associated with that. My freedoms were being taken away.

Susie: It was a sobering experience to discover who our true friends were and how our family would support us. We had to learn to do it on our own and figure out how to make it work with little support.

Rick: It’s stressful, but we have chosen not to hold onto animosity. But now when I tell someone, ‘I’ll be there for you,’ I take it very seriously.

The average wait time to receive a heart transplant is six months to one year. A transplant candidate can be removed from the waiting list if his or her health significantly improves or deteriorates.

 

Pie Night HelpHOPELive fundraiser

Support groups helped Rick and Susie find solace and community.


What advice would you give to another family waiting for a transplant?


Rick: Talk to someone who has gone through it. Learn about the procedure, the medications you’ll be taking and the side effects, and prepare for them. Don’t think that life will be perfect after the transplant. My body was torn up for weeks as I adjusted to the medication, and I pushed people away from me and felt mentally foggy. When you get that call, you will go from sky-high feeling lucky to get a heart to rock-bottom feeling guilty, sad or angry that someone had to pass away for you to get the transplant. You will swing back and forth, but you WILL level out again.

Rick Brittell heart transplant

Rick after his lifesaving transplant.

Susie: Do not think that you can shoulder the burden alone. As a caregiver, be patient and know that the person you love might get belligerent, angry or moody, but that is not the same person you love. The person you love will be back after a while. Find someone to unload onto so you don’t take out your frustrations on your loved one.

72 percent of American adults experience financial stress at least some of the time, and 26 percent experience financial stress most or all of the time. Start fundraising for a transplant as soon as possible to reduce the amount of financial stress you’ll have to deal with as you prepare for transplant.


What is life like after transplant?


Susie: I’m just so glad the waiting part is over. We are different people from when we first left for Salt Lake City. It has made us less self-absorbed and has opened our eyes to how narrow-minded you can become.

Rick: Hot dog, I’ve got a new lease on life now. I can look forward to seeing my family and my grandkids again. Before the LVAD, I could walk about 50 feet per day on oxygen before I was exhausted. Now I can walk 2 to 3 miles. I have realized that I can do this, and I see the light at the end of the tunnel. The journey is not over but there’s a lot more hope than there used to be.


Rick and Susie continue to fundraise with HelpHOPELive for post-transplant expenses including relocation, medical appointment co-pays and a lifetime of immunosuppressants.

 

4 Ways To Engage Your Faith Community For Fundraising

In honor of National Donor Sabbath this week, here are a few ideas for how to engage your faith community in fundraising.


Spread Awareness With National Donor Sabbath

Between November 13 and November 15, faith communities across the country will celebrate National Donor Sabbath, a time to honor individuals who have saved lives through organ donation. It’s an opportunity for discussion and education: as Donate Life California notes, “ALL major religions support organ, eye and tissue donation, and believe it to be a final act of kindness and generosity.”

National Donor Sabbath 2015

Source: donatelife.net

HelpHOPELive will be distributing free organ donor awareness materials to congregants at St. David’s Episcopal Church in our local Wayne, PA community this year. Consider asking your faith community to honor the occasion in 2016. Contact your HelpHOPELive Fundraising Coordinator to request awareness materials to help spread the word.


Showcase Ways To Make A Difference

Your place of worship may be an ideal location to bring people together to sign up to be bone marrow donors, blood donors or registered organ donors. These drives can raise awareness for a cause, inspire attendees to donate to your HelpHOPELive Campaign and create an opportunity to enlist community volunteers who may help you to promote your Campaign or plan future fundraising events.

bone marrow drive swab

Hold a bone marrow drive to raise awareness and support for your Campaign.

In 2010, HelpHOPELive client Vinodkumar Challagundla desperately needed a bone marrow transplant to fight myelofibrosis. His faith community came together to hold bone marrow drives across the country at which potential donors could submit their cheek swabs for compatibility testing. The community found overwhelming support for the initiatives: more than 15,000 people joined the National Marrow Donor Program registry through the drives, including the donor that would save his life.


Hold A Fundraiser

A place of worship can be a great venue for a fundraising event, from a post-service pancake breakfast to a community yard sale. If you are already involved with a faith community, contact your HelpHOPELive Fundraising Coordinator for event ideas that will suit the venue and audience.

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Your place of worship could be a great location for a fundraising event.

If your faith community has a suitable concert area or holds a regular musical event, consider engaging faith leaders to help you plan a concert to fundraise for your Campaign. A faith-based community concert in honor of HelpHOPELive client Allen West Edgar attracted over 300 attendees and raised significant proceeds towards Allen’s kidney transplant. Allen even performed at the concert, showing attendees how much their support meant to him.


Engage A Volunteer Network

Some faith communities have a social service and outreach component built into their mission or their youth organizations. See if your place of worship would be willing to help you reach out to individuals who want to support your fundraising efforts in the name of their faith. HelpHOPELive client Ethan Kadish’s friends and family members engaged their faith community to support Ethan through two projects, a 5K event and a performance by a local youth band, that tied into service expectations for a coming-of-age religious ceremony.

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Find enthusiastic volunteers through your faith community.


Want more fundraising tips and ideas? Reach out to your HelpHOPELive Fundraising Coordinator for support and browse our Blog for additional insights.

Meet HOPE Award Honoree Jim Melwert

Each year at HelpHOPELive’s annual fundraising event, HelpHOPE-Live It Up!, we honor community heroes who prove why our mission matters with the Help, HOPE and Live awards. In 2015, we’re also giving out an Advocacy and Volunteer of the Year award.

This year, the HOPE award will go to KYW’s Jim Melwert for his selfless gift of life through living kidney donation.

Jim Melwert gold medal

We honor Jim Melwert for giving the gift of life.

In 2006, Jean DelMuto was struggling with the painful effects of polycystic kidney disease. Facing at least a 5-year wait for a kidney transplant, Jean’s health deteriorated so rapidly that her manager established an in-office cotthat she could use for the naps she needed to take just to make it through each workday. As Jean was entering some of the most challenging health circumstances of her life, her nephew Jim, made her a stunning offer: the gift of life.

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Jim Melwert with his aunt and recipient, Jean.

Jean’s nephew, Jim Melwert, is the Suburban Bureau chief for KYW Newsradio 1060. When he heard about his aunt’s struggles to secure the transplant she so desperately needed, Jim made the selfless decision to donate one of his kidneys to save her life. He made the life-changing donation on February 27, 2006, a date that he and his aunt will never forget.

For many, a transplant represents a “second chance” that can inspire recipients to make commitments to maintain their health and make the most of their future. Jim turned his gift to Jean into his own “second chance”: he began giving serious consideration to his own health, making a decision to start training for and participating in a series of impressive athletic challenges. Since giving a kidney to his aunt in February 2006, Jim has participated in competitions including Ironman events, the Transplant Games, 5k swims and Donor Dashes to honor other organ donors and recipients.

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Jim, left, began participating in athletic competitions like the Transplant Games after giving the gift of life.

In 2013, Jim delivered a powerful address as the keynote speaker for the Gift of Life Donor Program’s Living Donor Recognition Ceremony. “As a reporter, our personal experience helps shape who we are and how we see the world,” said Jim. “Being a living kidney donor, I see the triumph of the human spirit, science and the human body. Every single donor [has] the courage, the love and the desire to make a difference. There are no words to explain how it feels to see the difference we’ve made.”

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Jim and Jean celebrate the gift of life together at a Donor Dash event.

HelpHOPE-Live It Up! logo Live It Up! Live It Up 2015 annual event charity galaOn October 16, 2015, HelpHOPELive will honor Jim Melwert for giving the gift of life with our signature HOPE award. Join us to celebrate the power of transplantation, selfless giving and second chances.

These Families Were Touched By Transplant

April is National Donate Life Month.To raise awareness about the importance of organ donation and to celebrate transplant donors, we are sharing stories of HOPE from patients and families touched by transplant. Here are our first three transplant stories.

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Touched By Transplant: Struggle and Triumph

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This is HelpHOPELive client Derek Avillanoza’s transplant journey.

I found out I would need a transplant in February of 2011. I became very ill. My doctor referred me to a nephrologist who told me the bad news, a conversation which I recall still today: “It’s obvious you will need a kidney. It’s just a question of when.” I was devastated. I started dialysis in June of 2011.

Honestly, I didn’t know that much about kidney transplants before I needed one myself. Then reality hit me. I educated myself, and tried to learn about everything concerning kidney failure. I am still learning and educating other people to this day.

My wife and I felt like we were on top of the world when we first found out we were a donor match through virtual testing. We got very emotional. We found out just days before the procedure that we would not be an appropriate transplant match: my body would reject my wife’s kidney because of higher antibody levels in my system. We were devastated, angry, disappointed and heartbroken. But after signing up for a paired kidney exchange, we experienced another cycle of intense emotions, this time positive, when we got the ‘final’ phone call in January of 2015.

I was absolutely nervous before the operation, because I didn’t personally know many people who had undergone a transplant. The transplant team at UC Davis was outstanding and very informative, letting me know exactly what to expect. I asked a whole bunch of questions!

The recovery process has been very humbling and has required a lot of self-discipline as I control my daily ritual. I have to take prescribed medications at a pre-appointed time twice a day, check my vitals twice a day, manage a strict diet to keep control of my diabetes, and fill out a daily transplant diary to monitor physical changes. I have to chart all of the medications I take (18 in the morning, 15 at night). Oh, and then there’s bloodwork twice a week, and a 6.5-hour drive every Tuesday to visit UC Davis. These steps are worth every minute – they extend my life. I am very thankful.

Friends and family have been very supportive, and I’m very grateful for their kindness and love. Without my wife’s constant urging, I would not even be here talking about my transplant today. I believe that we got married for a reason: she was sent down from heaven to be my angel.

I have had to medically retire from my career in government because of my illness. We were advised by the financial coordinator at UC Davis Transplant Center to pursue a fundraising campaign with HelpHOPELive to cover medical and relocation expenses related to the transplant. We continue to work with HelpHOPELive because we’ve started to receive medical bills associated with the transplant, and we are also incurring expenses related to the medications I need to stay healthy.

I am so blessed and grateful to have gone through this procedure. It has extended my life so that I can spend more time with my wife, children and grandkids.

These are the five words that describe my transplant journey: Grateful. Honored. Humbled. Overwhelmed. Emotional.

 

Touched By Transplant: A Sense of Destiny

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This is HelpHOPELive client David Ludwig’s transplant journey.

I really couldn’t believe it when I found out I needed a double lung transplant. I always thought my cystic fibrosis would have been cured before I reached that point. The whole idea of a transplant seemed far-fetched to me, and I knew very little about transplants prior to having one myself. All I knew was that post-transplant, you live on immunosuppressants for the rest of your life. Unfortunately, I didn’t have much time to learn more about my transplant before it occurred.

I never actually received “the call” telling me I would get a transplant. I had just survived multiple emergency surgeries, including a procedure prompted by my lung rupturing which caused me to bleed out internally. I had a pneumothorax while receiving treatment for a cystic fibrosis-related illness, and I was in critical condition when I was transferred to the Keck USC Medical Center for transplant.

My family was very supportive and so were the friends who found out about my circumstances later. My aunt found HelpHOPELive, and she and my mother used my Campaign Page to fundraise for me while I was incapacitated.

I felt very calm when they offered me the transplant. My life was at stake. I remember giving the resident surgeon a thumbs-up when he asked if I wanted the double lung transplant. I had a strange sense of comfort during the entire process, despite having large extracorporeal membrane oxygenation (ECMO) tubes and a tracheostomy tube in my neck and additional tubes everywhere. A sense of destiny and the will to overcome seemed to envelop me during this time.

The recovery has been intensive, partially due to post-transplant kidney failure which lasted for six weeks. I was bedridden for several months, so I lost all muscle in my arms and especially in my legs. I had to learn how to walk again. I’m still building up stamina with my new lungs, and that has been the hardest part of the recovery process.

I have new expenses after the transplant to add to the expenses I have had to manage because of my cystic fibrosis. Now, in addition to anti-rejection medications, I take several drugs and numerous vitamins to offset the side effects of the immunosuppressants.

My future is optimistic. Cystic fibrosis is typically a death sentence, a 13- to 30-year time bomb. These new lungs have spared me from my original fate. I am forever grateful to my donor. My donor’s tragic loss has been my gain, and the same is true for many others. The biggest thing I’m looking forward to is playing a round of golf. Now, I will be able to do it without wheezing or breathing through the proverbial straw.

These are the five words that describe my transplant journey: Hope. Gratitude. Rebirth. Renewal. Happiness.

 

Touched By Transplant: Infectious Positivity

Josie, Josie Setters, Chase, Chase Setters, transplant, pre-transplant, fundraising, pre-transplant costs, pre-transplant expenses, HelpHOPELive

This is HelpHOPELive client Josie Marie Setters’ transplant journey as told by her father, Chase Setters.  

My wacky and energetic 5-year-old daughter, Josie, was taken to a specialist at The Children’s Hospital at OU Medicine in Oklahoma City to evaluate recurring bladder infections. During preliminary checks, it was discovered that Josie’s blood pressure was upwards of 160/90. She was immediately admitted, and two days later, we learned that Josie had chronic kidney disease. Her kidneys were operating at around 30%.

Josie, now 8, remains wacky and energetic despite her diagnosis. Her infectious positivity and silliness have united our community around her. She needs a kidney transplant to survive, and we are hoping to get Josie the transplant she needs in the summer so she can continue to attend school like a normal 8-year-old.

I’m in Information Technology by profession, and I’ve always been a bit of a geek. In early 2015, I posted a Facebook link to Josie’s story and HelpHOPELive campaign. Less than 5 minutes after I posted the link, Wedge, a serial gamer and host of the YouTube channel TheManaSource reached out to me and asked permission to use my story. Next thing I knew, I was tagged in a video that Wedge had created specifically to help my daughter fundraise.

This gesture meant the world to me. Most of us can grasp the idea of selfless giving, but once you witness this miracle in person, it is no longer an idea. It manifests in an incredibly powerful and humbling way, and it becomes almost impossible to express the gratitude you feel towards those who contribute.

We have received donations through HelpHOPELive from contributors across the U.S. One-time strangers who got to know us through Wedge’s video have donated over $1,000 to help Josie. My company of 75 employees pulled together to donate over $10,000, which the company matched.

Is human nature good or evil? Maybe my view has been skewed as I’ve worked to fundraise for my daughter’s lifesaving transplant, but my resounding answer is that our nature is good.

These are the five words that describe my transplant journey so far: Fear. Acceptance. Limitations. Waiting. Hope.

 

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