Tag Archives: post-transplant costs

How You Can Step Up To Support A Family Facing A Medial Crisis

Donating to HelpHOPELive isn’t the only way to support a family facing the financial and emotional burdens associated with a transplant. Just ask Danielle Bailey, who has helped three HelpHOPELive clients plan bingo and poker fundraisers using her event planning experience. Learn why Danielle pours her time, energy and expertise into helping these families, and you’ll be inspired to do the same!

Danielle Bailey HelpHOPELive

Danielle, left, supports multiple HelpHOPELive families


How did you get involved in fundraising?


My first event was to help fundraise for a little girl with a double cochlear implant who was having trouble securing state funds to attend a school for children with hearing loss. I helped to plan a bingo event, since everyone has fun playing bingo and it’s a great way to raise money and have fun. We were able to raise $400 for her.

Since then, I have been involved with events raising funds for several causes, including autism awareness, cancer awareness, canine companions, and kids’ medical needs. As an AVON representative, in addition to helping plan fundraisers, I typically reserve a table at each fundraising event to show support and advertise my services and I donate raffle prizes.

Danielle Bailey HelpHOPELive

Danielle has engaged in fundraising for several nonprofit causes


How are you connected to the HelpHOPELive families you help?


[Former HelpHOPELive client] Mary Jo Lovely is my mother. She made the decision to donate my stepfather (Stephen Boyes)’ organs in 1998 when he suddenly passed away. She was diagnosed with COPD and was put on 24/7 oxygen at 42. She was put on the transplant waiting list and she received her first single lung transplant in July 2007. A year and a half later, swine flu hit our family and the disease immediately put my mother’s body into a state of rejection. She received her second lung transplant in June 2015.

Danielle Bailey HelpHOPELive

Danielle’s mother “received her second lung transplant in June 2015”

I met [HelpHOPELive client] Karlene Novotny in 1998 when she did my taxes. We clicked right away. She opened her own business which I followed for a few years before she became sick. I saw her name in a news article shared on Facebook and we got back in contact. I was shocked to learn how sick she was and how much she had gone through since we lost contact.

I first met Natalie Meyers in person on March 12, 2016 while I was hosting the bingo fundraiser in honor of Karlene. She had just started fundraising with HelpHOPELive a few days before the event. A co-worker shared her story with me and I reached out to her, contacted the local fire company and started the planning process to help her with a fundraising event. I invited her to the bingo fundraiser in honor of Karlene so that she could see how events were managed to better prepare herself for the event in her honor later this year.

Danielle Bailey HelpHOPELive

Flyer designed by HelpHOPELive for the upcoming event


What’s the hardest part about planning a fundraiser?


I give myself a good six months to plan everything to limit hurdles along the way. I send donation requests to local businesses, find vendors to set up at the event, make sure there is advertising via social media and flyers in local groceries stories where permitted, and so much more. The hardest part is waiting for the event to happen!

Danielle Bailey HelpHOPELive

This year, Danielle is expanding her wheelhouse to include poker events


What is the most satisfying part of planning a fundraiser?


There is so much that is fulfilling about fundraising. Being able to help someone in need gives you such an amazing feeling. The most satisfying part is seeing a room full of 200 people pulling together to help a single person. Seeing local businesses helping the community also makes you proud to be a part of it.

Danielle Bailey HelpHOPELive

Danielle loves ” seeing a room full of…people pulling together to help”

Knowing I helped make it all happen for a great cause gives me such a sense of accomplishment! I love helping where I am needed. The actual amount raised may not be like winning the lottery, but for these families, it’s close because of the tremendous impact. Every little bit counts.


Do you help because you expect these families to pay you back in the future?


No way. I do not expect anything from anyone that I help. I just do it to get the feeling of being able to help, and that is enough for me.


Can fundraising be both emotionally and financially significant?


After my mom had her first transplant, I realized how much everything related to the transplant was going to cost. When your family is stressing out about how they are going to pay for the transplant and the medications that will keep them alive, it can honestly tear them apart. That stress can affect the entire family and fundraising can make a difference.

I have referred people to HelpHOPELive for years. I love that the funds raised go directly to the individual’s medical needs and not into some CEO’s pocket!


What does the word HOPE mean to you?


HOPE is life! Every day we take advantage of the things we’re given. We were all dealt a certain hand in life; it is who we are and what will make us stronger. Help those who are less fortune, because someday you may be the one who needs help.

Danielle Bailey HelpHOPELive

“Someday you may be the one who needs help,” said Danielle


Like Danielle, you can make a difference for a family facing a medical crisis. Start a fundraising campaign with our nonprofit today at helphopelive.org. Learn how to help an existing HelpHOPELive family by calling 800.642.8399.

The Emotional Impact Of Fundraising

Retired teacher Bob Wollenberg received a double lung transplant on February 19, 2016. During his 36 years as a public school teacher, drama director and coach in Boyne City, Michigan, Bob made a difference in the lives of countless children and young adults. When his family began fundraising with HelpHOPELive in December 2015, his community finally had the opportunity to give back to the man who had given them so much. Bob explains how accepting community support has impacted his life.

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“You were a guiding influence, and I thank you for that.” -Former Student


I always tried to treat my students as individuals, not just as another student in a class. Now, they are paying it forward to me.


“Thank you for your years of dedication to the community and to the children of Boyne City.” -Community Member


There is no way that my wife, Jackie, and I could have weathered the storm of bills without my friends and past students helping out. There are so many hidden costs that insurance doesn’t cover. I live in northern Michigan; driving down to Chicago to take part in a specific lung transplant program is crucial to help me maintain my health and secure a transplant. The mileage, gas and travel costs alone for those trips are a huge expense. My HelpHOPELive campaign is helping me pay for all of this!


“I am forever grateful to B.W. for inspiring me to become a more creative, confident and dynamic person.” -Former Student


My donors have helped both monetarily and emotionally–community support has become a huge part of my lung transplant journey. I have heard from so many past students. It’s incredible. Some of my HelpHOPELive contributors go all the way back to 1972 when I first started teaching and coaching. I keep thinking about the number of times I gave students lunch money because I knew they didn’t have any and would skip lunch without it. As much as I could, I helped. Now, those same students are “buying my lunch,” so to speak. We have helped each other.


“I have fantastic memories of my time as your student.” -Former Student


My online donation page helped me to communicate with all my donors. Reading guestbook comments on my HelpHOPELive page, especially comments from my former students, has been a heartwarming experience. You never really know how much you impact a student until years later when you hear from them. It just makes your teaching career worth it in every respect. Many friends and students wrote in and I was able to write updates on my page to respond to their comments. My HelpHOPELive campaign is clear, easy to use and just what I needed.


“This man changed my life and showed me parts of the world that I might never have seen without him. He gave us his all.” -Former Student


One of my top literature students from the past, who became a professional writer, sold a copy of “To Kill A Mockingbird” that he had signed and donated the money (to HelpHOPELive) in my honor. He said, “I owe my writing and love of literature to Mr. Wo.” How wonderful is that!


“You gave a small town girl a chance to experience culture and a safe place to be herself. This is the least I can do for you.” -Former Student


At first, I was reluctant to ask for help. I thought people would look down on me for asking. I was totally wrong. My community has been incredible. They have supported me in such a big way. When I was feeling uneasy about asking for help, someone in my community said to me, “If I needed help, would you help me in any way you could afford?” My answer was, “Of course.” I had not looked at it from his perspective until then. I absolutely suggest working with HelpHOPELive and getting in touch with people in your home community.


Bob and his family fundraise with HelpHOPELive for travel, relocation, co-pays, lab costs and other transplant-related expenses. Want to rally your own community to fundraise for your medical and related expenses? Start your own fundraising journey today.

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!