Tag Archives: donate life month

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.

I Gave My Kidney To Someone I’d Never Met

In 2014, Debra Brock was facing chronic renal failure after a 30-year battle with insulin-dependent diabetes. A mother of three, grandmother of six and great-grandmother of five, Debra knew she wouldn’t be able to continue supporting her family without a kidney transplant. That’s when family friend Amy Krontz made an incredible decision: she started the process of becoming a living donor for Debra, a woman she had never met.

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How are you and Debra connected?


Amy: Debra’s sister and I had worked in some volunteer groups together, which is how I found out that she needed a donor. We did not meet until I received final approval to be her living kidney donor.

Amy and Deb Brock HelpHOPELive

Living donor Amy with Deb Brock


What made you decide to donate to someone you didn’t know?


Amy: Debra’s sister posted on Facebook about their family’s need to find a kidney donor and that they were fundraising with HelpHOPELive. I recalled the pictures and posts that expressed Debra’s importance as the primary matriarch in a very close and involved family. I was particularly moved by her role in her grandchildren’s lives. I realized that such a positive, loving influence would be a tragic loss. Once I found out that Debra had gone through dramatic weight loss and had taken measures to control her diabetes but that her kidney damage was still too severe to reverse, I wanted to try to help.

Deb Brock HelpHOPELive

Deb is the “matriarch” of her family, says Amy


What were the preparations like?


Amy: I was tested beginning in February 2014 and I donated in August 2014. I had a few blood draws, a 24-hour period of urine collection and a 3-hour glucose test. I also took part in an educational appointment in which I was thoroughly informed about the procedure, including what to expect and all of the possible complications related to living donation.


What would have happened if Debra didn’t get a kidney?


Amy: Debra would likely still be on daily dialysis and would be experiencing complications with not just her kidneys but with other organ systems by now.

Debra: I would have continued with dialysis and prayed for more time to look for donors. Before Amy donated her kidney to me, every day I was faced with death.

Deb Brock HelpHOPELive

“Every day I was faced with death” before the transplant, says Deb


How did the gift of life impact your health?


Debra: The big difference is, I feel terrific! I actually enjoy going to the bathroom now because of my improved kidney function. I have freedom to plan activities with my family and not worry about bringing along my dialysis equipment.

Amy: The procedure was easier to endure than I had imagined. I was well-informed and experienced less post-operative pain and recovery than I had initially anticipated. The risks involved in being a living donor are very small, and making some healthy lifestyle changes has helped me to avoid any complications. A little bit of my time and minor pain for a couple of weeks afterward were small sacrifices to enrich and extend the life of another.

Ultimately, my life has not been compromised in any way living with one kidney. Living donation vastly improves the chances of a successful transplant compared to deceased donor outcomes. If I had more kidneys to give, I would do it all over again, and I strongly encourage others to consider it as well.

Deb Brock HelpHOPELive

The gift of life has helped Deb return to her life with family and “new babies”


Amy, did fundraising provide you assistance as a living donor?


Amy: I was an unemployed nursing student when I donated. I was reimbursed for mileage and travel for testing and appointments related to the donation.


Debra, why do you fundraise with HelpHOPELive?


Debra: My kidney transplant social worker gave me materials to review, and I chose HelpHOPELive because of the reviews I read. I had enough concerns on my mind as I was preparing for the transplant, and HelpHOPELive eliminated my worries about money. Today, I fundraise for prescriptions, travel expenses for post-care treatment and funds in case any medical emergencies take place.

Deb Brock HelpHOPELive fundraiser

Deb and her family fundraise for ongoing post-transplant costs


Do you share a special bond today?


Amy: Most definitely. We remain in contact and I am very grateful for the experience and for Debra’s appreciation for each new day. The choice I made to become her donor is reaffirmed consistently through my interactions with Debra and her family.

Debra: 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. She has given me more time to spend with my family. I love her.


Debra, what does hope mean to you?


Debra: Hope means that there is a tomorrow!


touched by transplant fullWant to make a difference in the lives of kidney transplant recipients and living donors? Make a donation to the HelpHOPELive General Operating Fund today and help us support community-based fundraising campaigns for families.

These Families Were Touched By Transplant

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

touched by transplant full


A Transplant Can Change Your Life…


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

Terry Cobb HelpHOPELive

Terry with his faithful friend


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

Deanna3

Deanna proudly represents the gift of life


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

Emily Roush HelpHOPELive

Emily with her “reasons to live!”


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

Rick1

Rick’s gift of life


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


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

Dudley Edmondson HelpHOPELive

Dudley (left) with his donor


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

Amy E Burriss HelpHOPELive

Amy received “a perfect new set of lungs!”


…But A Transplant Can Also Be Financially Devastating


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

cost of transplant

Transplants come with a lifetime of expenses

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

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

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

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

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


Fundraising Can Make A Difference!


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

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

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

HelpHOPELive, Derek Avillanoza, Derek, HelpHOPELive, transplant, kidney transplant, transplant meds, post-transplant, kidney, kidneys

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

David, David Ludwig, HelpHOPELive, transplant, lung, lungs, lung transplant, paying for lung transplant, post-transplant, transplant medications, transplant meds, cystic fibrosis, CF

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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