Tag Archives: Donate LIfe

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: https://helphopelive.org/campaign/8748

 

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.

touched by transplant full


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.

Post-Transplant Expenses You Need To Know About

Jennifer Alley was born with myopathic intestinal pseudo-obstruction, a chronic rare disease. She received an intestinal transplant in 2004 with support from her husband and son.

Jennifer Alley HelpHOPELive


How has the transplant impacted your life?


I have been sick since birth. Before my transplant, I was always in and out of the hospital and I had three internal tubes: one to empty my stomach, one to empty my bladder and one that served as a permanent IV line in my chest to deliver total parenteral nutrition (TPN). My body is now free of those tubes! Before my transplant there was no chance of me having a baby, but thanks to my organ donor, I was able to give birth in 2008. To honor my donor, we gave our son my donor’s name, Steven, for a middle name.

Jennifer Alley HelpHOPELive

“We gave our son my donor’s name, Steven, for a middle name”

It’s important to realize that a transplant is an improvement, not a “poof, it’s gone!” cure. Transplant recipients are immunosuppressed, so I can get sick very easily. Even something like the flu is much worse and much more threatening to me than to others, so we are always asking family members if they are sick before we go to see them. There are also certain foods I still can’t eat.


Are there emotional adjustments?


A transplant has a big emotional impact. I still am in and out of the hospital at times and I still have to leave my home and go to the transplant center in Pittsburgh when things go wrong. That includes leaving my son at home with my parents when my husband and I go. I miss my son and family so much when I’m there. My dogs help me emotionally; they have since I was little. Not having a dog with me at Pitt is hard!


Were you prepared for the financial impact of your transplant?


We knew getting a transplant would be expensive and it certainly was. A small intestine transplant is one of the most expensive transplants out there. However, we were not prepared for the post-transplant care expenses. After transplant, you have ongoing expenses to keep your organ working. That has taken a financial toll on our family.

Jennifer Alley HelpHOPELive

“You have ongoing expenses to keep your organ working”


What are some of the post-transplant expenses that recipients must cover?


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. Then there are co-pays for clinic trips and doctor visits. Medication co-pays can add up, especially early on when you are taking a lot of meds and the meds can change frequently. During every trip to Pittsburgh, there is a chance that we could need to be up there for weeks or months. And then there are some rare but very costly expenses that can come up, like a medical jet or helicopter ride if something is going very wrong and there isn’t time to take a commercial flight.


How do you combat high post-transplant expenses?


The costs are very extreme and unpredictable, so it is very important to fundraise. I will continue to fundraise for my care. Fundraising can help you cover medical expenses and get the care you need post-transplant.


Follow Jennifer’s story on her HelpHOPELive Campaign Page. Which post-transplant expenses has your family encountered? Reach out to @HelpHOPELiveOrg on Twitter and your story could be featured next!

In The News: Mom Recovers From Five-Organ Transplant

Looking at family pictures, you might assume that Melinda Nelson is a typical wife and mother of three. Beneath the surface, her story is anything but ordinary. In September, Melinda underwent a life-changing five-organ transplant to combat a rare illness that made it impossible for her to eat or drink without the assistance of a feeding tube.

Melinda Nelson transplant HelpHOPELive

Melinda is a wife and mother of three.

Melinda was born with chronic intestinal pseudo-obstruction (CIP). The disorder lead to inefficient intestinal contractions, which made ordinary digestion and nutrition impossible for her body to maintain. By age 38, she was unable to draw any nutrition from food orally, and nightly intravenous treatments became her sole source of nutrition.

CIP was breaking down her health and diminishing her body’s ability to fight back. Melinda knew she would need a major breakthrough to remain in the lives of her “three babes,” 11-year-old Chad, 7-year-old Grace, and 6-year-old Hannah. A high-risk multi-visceral transplant – of the liver, stomach, intestine and pancreas – became her only hope.

Melinda had been fundraising with HelpHOPELive for less than a year when she got the call for her transplant. Thanks to the donations made in her honor, Melinda was able to afford the 1,821-mile journey from her hometown in Idaho to a specialized transplant center in Indiana where she received the gift of life.

Melinda Nelson after transplant HelpHOPELive

Fundraising enabled Melinda to relocate for a lifesaving transplant.

“I can’t even imagine giving a gift like that, because that donor didn’t just give me a second chance, he gave my kids their mom,” said Melinda in an interview with KTVB 7. Melinda will spend the holidays recovering from the procedure and celebrating the possibility of a brighter and healthier future.

(Meridian mom recovering after five-organ transplant)

How To Save A Life In 30 Seconds

Blood cancers like leukemia kill more children in America than any other disease. As part of the largest network of bone marrow donor centers in the United States, Delete Blood Cancer has registered more than 600,000 donors and provided over 2,000 bone marrow transplants to patients in need. We spoke to Desirée Chavis, the organization’s communications specialist, about making an impact through bone marrow donation.


What is Delete Blood Cancer’s mission?


We seek to register as many eligible and committed bone marrow donors in the U.S. as possible. We are also an international organization with a presence in 5 countries. Part of our mission is also to bust the myths surrounding donation and try to empower others to be advocates for donation themselves. We want people to know that it takes just 30 seconds to swab your cheeks and register as a potential donor. You could change or even save someone’s life!

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What would you say if someone asked, why should I become a bone marrow donor?


  1. It’s an amazing and unique experience.
  2. Your bone marrow will replenish itself.
  3. Receiving bone marrow can be lifesaving for patients. Without a donor, many face extreme medical, financial and emotional hurdles–you are giving them a precious gift.
  4. Minorities and mixed race recipients can have a harder time finding a donor, so your contribution can really make a difference in their lives.
Nick Karavite HelpHOPELive

HelpHOPELive client Nick Karavite received a lifesaving bone marrow transplant.


What are some of the most common misconceptions about becoming a bone marrow donor?


The biggest misconception is around the methods of donation and the pain involved in donating. Whether you donate through the peripheral blood stem cell method (PBSC) or the surgical method, you’re back in action very quickly. They are both same-day outpatient procedures.

PBSC is used for 75% of donations. With this method, you receive a daily injection of filgrastim 4 days pre-donation to increase the number of blood stem cells in your body, so you may feel like you have the flu for a few days. During the several hour donation, a machine takes blood from one arm, removes the blood stem cells and returns the blood to the other arm. You can use your iPad, read magazines or watch TV while you donate.

A Delete Blood Cancer donates via PBSC

A PBSC donation in progress.

Surgical donation is used in the other 25% of cases. In these cases, surgeons go in with a special syringe (to extract bone marrow) while you are under anesthesia. On average, it takes a little over an hour and you don’t feel anything during the procedure. You can still leave on the same day, making sure that you limit strenuous activity. Most donors describe feeling slightly tender or bruised at the injection site.


Has your work allowed you to hear stories from patients whose lives have been changed by donation?


Our main mission is to save lives; we encounter many rewarding moments while working toward that! Something amazing about our work is that a donor in any country we serve can fill the need for a patient outside of those borders. Up to one year (or two in some places) after transplant, a donor and recipient cannot have direct contact, but after that, if the desire is mutual, they can begin direct contact with each other and even plan to meet.

I remember one incredible story about a recipient in Texas, Larry, and his donor in Germany, Johann. A year after Larry’s transplant, Johann came to visit him in Texas! Larry brought up an amazing point: he and Johann now share DNA. They were basically “brothers” because of Johann’s decision to donate. Larry was so excited to meet him, and Johann was welcomed into a new family. He gained that family by saving a life.

wilson donor

Larry and Johann were linked by Johann’s lifesaving donation. Source: Houston Chronicle


Go to deletebloodcancer.org to register to be a donor now. Share your donation or bone marrow transplant stories with us on Facebook and on Twitter

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.

pancake breakfast

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.

friends

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.