Tag Archives: transplant expenses

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.

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.

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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.”

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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.”

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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.

A 77-Year-Old Donates A Kidney To Save His Son

On October 15, 2015, 77-year-old Bill Graham, Sr. became the oldest living kidney donor ever recorded at the University of Maryland Medical Center as he donated a kidney to his son and HelpHOPELive client, Andy. The transplant was a lifesaving gift for Andy, who had been fighting end-stage renal disease since 2013.

Andy is described as a “kind and generous man” by his mother, Mary Lou. He and his family were blindsided two years ago when he was diagnosed with acute renal failure despite exhibiting no symptoms or sign of the diagnosis. The unknown autoimmune disease that deteriorated Andy’s kidneys required him to receive dialysis three days each week.

Andy Graham dialysis HelpHOPELive

Andy received dialysis weekly

Andy became unable to officiate high school football games, a pre-diagnosis passion, and he could no longer maintain his fulltime job as an auto industry manager. Within 2 years, even climbing stairs or walking short distances became a major challenge. Andy needed a miracle –and that’s when his father stepped in.

Andy Graham Bill Graham HelpHOPELive

Andy with his donor Bill and his dog Angel

77-year-old Bill Graham, Sr. offered to donate a kidney to save his son’s life. To become a viable living donor, Bill lost a whopping 53 pounds at the request of Andy’s transplant team. “The doctors were truly amazed at his good health,” said Mary Lou. “He was so happy to be able to give his son the gift of a new life. Surgery was a complete success and the guys are on the road to recovery.”

Andy Bill Graham HelpHOPELive

Bill Sr. and Andy are in good health

In a letter, Mary Lou thanked their generous friends and family members, who helped the transplant take place through their donations. With both donor and recipient now in good health, Andy and his family will still face multiple expenses related to the transplant, including expensive immunosuppressant medications that he will need to take for the rest of his life. Andy and his family continue to fundraise with HelpHOPELive to help offset those uninsured expenses and cover any unanticipated expenses that may arise.

Learn more about Andy and his transplant journey on his HelpHOPELive Campaign Page.

 

The Rewards And Challenges Of Transplant Social Work

You already know what it feels like to prepare for a transplant as a patient. But how do transplant professionals view the process? We asked Laurie McDonald, a clinical social worker and case manager for the UNC Center for Transplant Care, to answer our questions.

heart in hands transplant


What are some of the biggest challenges of transplant social work?

At times, I really, really want a particular organ recipient or donor to succeed, but based on his or her circumstances, that person is just not a suitable candidate. After years and years of this line of work, I have to console myself with the truth: transplant is not for everyone. For some, a transplant will make the situation worse instead of better. It’s difficult to keep that message at the forefront when the person in front of me truly believes a transplant will save them.


What are some of the rewards you experience?

Just this week, two people were transplanted in a row. Now, they are delighted to be breathing without supplemental oxygen and walking more easily than they have in a long time. To see joy and relief on the faces of transplant recipients and their family members is wonderful. I love seeing patients years post-transplant living full lives that honor their donors. Transplant remains a daily part of their lives, but it is no longer the central focus.


Have you witnessed areas of progress in transplant assessment?

Within the past few years, we have become more invested in transplant assessment tools that will give us concrete, unbiased information. When a doctor recommends lab work, those tests will result in definitive numbers that the doctor can use to diagnose and treat you. When you’re dealing with social and emotional factors, it’s far more difficult to accurately quantify and represent a patient’s profile.

We have started using a validated measure that is linked to patient outcomes developed by Jose Maldonado at Stanford. I use this risk assessment tool to come up with a score that reflects a candidate’s psychosocial situation. It’s imperfect, but it’s absolutely progress. It makes it far easier for team members to compare information and communicate across specialties. Personal and even subconscious biases are always a factor, so it’s extremely important for us to continue to take steps in this direction.


What advice would you give to those who are considering transplant social work?

Do it! It’s stimulating, rewarding, wonderful work. I absolutely love it. 15 years in and I’m not bored yet!

Quality improvement is really important in transplant in general and at UNC in particular. We are always learning and working to do things better. There are advances in medication, medical techniques, social evaluations and other areas happening constantly. It’s really an interesting place to be.


Share your experiences as a transplant candidate, recipient or social worker on Facebook.

What To Expect During A Pre-Transplant Assessment

Transplant care teams give living donors and transplant candidates psychosocial assessments to determine whether or not they are ready to move forward. Here are answers to your burning questions about pre-transplant assessments from Laurie McDonald, a clinical social worker and case manager for the UNC Center for Transplant Care.


Why do transplant candidates need to go through a mental and emotional assessment?


Getting a transplant kicks off a lifelong journey. It’s not a moment in time. The purpose of the psychosocial assessment is to make sure that transplant candidates have a support system in place, the emotional hardiness to handle the journey and the incredible stress associated with it, and the financial means to avoid devastation.

I tell people they will need to take care of their BMW: Body/Mind/Wallet. Be adherent to your medical regimen; be diligent with exercise and medications. Depression and anxiety rates tend to be higher for people diagnosed with end-stage organ diseases. As a result, some people may need to use tools to improve their mood before they are mentally and emotionally prepared for the transplant process.

psychosocial assessment test therapy transplant pre-transplant


Are there any ‘red flags’ that may emerge during the transplant assessment?


Whether I’m speaking to a young adult or a senior, some people come to me with a feeling of invincibility and have a very hard time believing that there are legitimate health risks associated with the transplant that might impact their lives. That can apply to any candidate or donor who walks through the door. Some people do not have the resolve to commit to a lengthy period of recovery and self-care, including managing diet, exercise and follow-up appointments. On the other hand, if a potential living donor is in fantastic shape and is a dedicated and avid exerciser, that person may need to truly consider what it will look like and feel like if they have to limit their activity after the procedure.

If people come to me and cannot tell me what the risks of transplant are in their own words, whether financial or health-related, I provide education and do NOT sign off on transplantation or living donation until the patient can do so. One of my jobs is to make sure that there is informed consent; the candidate must understand the transplant journey before signing off. That could take three or four sessions with me.

stop sign transplant assessment red flags


What do you consider when you speak with living donors?


I look at what living donors already know about the transplant process and the associated risks. Is the living donor making this decision on his or her own, or being pushed into it by someone else? Is the financial situation stable? Are there any potential dangers – emotionally, physically or financially – that may impact the process?

couple arguing disagree argue


What financial considerations do you discuss with transplant candidates?


I have seen patients go bankrupt from a transplant. I don’t ever want to see that again. That’s why we carefully consider a transplant candidate’s financial circumstances during the psychosocial assessment. Usually a financial coordinator will be the one who lets people know what their insurance will cover and what they are likely to face as out-of-pocket expenses.

bill bills calculator medical bills financial bankrupt


Can transplant recipients or donors do research ahead of time?


If you’re looking at websites that are affiliated with legitimate transplant centers or UNOS, that information is likely to be accurate and up-to-date. Some people will come to me and say, “I saw a transplant on TV once, so I know what to expect.” TV shows and websites can create a negative and inaccurate picture of the transplant process very easily. It’s important to get your information from a reliable source. There is a lot of information out there, but there is also a lot of misinformation.

online research desktop


Are there other places online where candidates or donors can find support?


I’ve heard from patients that it can be beneficial to join transplant mailing lists or social media support groups. Take what you read on these networks with a grain of salt: some people come to these sites with an agenda or an axe to grind. At the same time, however, these support groups may become a very valuable part of your transplant journey. Mentoring can be emotionally uplifting, particularly when even your close friends and family members can’t fully comprehend what you’re going through. Talk to someone who gets it.

support group peer support therapy


If you have additional questions about transplant assessments, reach out to us on Facebook or on Twitter. Thank you for your insights, Laurie!

 

 

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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 Share your transplant story with us on Facebook and on Twitter.

Why Work With HelpHOPELive?

Why should you trust HelpHOPELive to support your medical fundraising efforts? This infographic explains why you can count on us.

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If you have questions or feedback regarding this infographic, reach out to us on Twitter or on Facebook.