Tag Archives: lung transplant

Transplant Caregiving “Is Not My Calling, But It Is What I Do”

In October 2013, Douglas Petrie complained to his doctor about shortness of breath. A lung specialist diagnosed him with idiopathic pulmonary fibrosis (IPF). By September of the following year, a lung infection had propelled Doug onto the lung transplant waiting list. This is Doug’s transplant story, as told by his wife and caregiver Carol Petrie.


Doug got his transplant August 16, 2015. As I drove home at 2 a.m. after the operation and seeing Doug in the ICU, I thought, “Doug has been born again. He has a new life. He can breathe.” This is the first time I have written about our adventure.

Douglas Petrie HelpHOPELive

Doug, left, was “born again” after transplant, says wife Carol

I have likened our transplant experience to a pregnancy. We were on call, with a bag packed, and Doug was on the list for nine months. Wherever we went, we had to travel with Doug’s supplies just in case.

When Doug was first diagnosed, he was told, “Don’t worry–you have the slow-moving kind of IPF.” What we didn’t know was that even a cold could cause his health to deteriorate quickly. We had to learn that everything was a “big deal.” Even though I had done a little research on the Internet, I did not know which questions to ask. We are very grateful for the medical professionals who helped us because we were out of our depth.

We could see Doug’s health go downhill. We kept liquid oxygen in the house for him to use. When he had a doctor’s appointment, we always had to make sure we packed enough oxygen. Going anywhere became a production. We learned to adapt and manage Doug’s time so we wouldn’t miss any big occasions.

Douglas Petrie HelpHOPELive

Carol “could see Doug’s health go downhill” pre-transplant

Doug got a bill from the hospital for $572,000 about four months after the transplant. I was told the whole package would be about $1 million. There are constant doctor visits to pay for. While Doug took two medications prior to his IPF diagnosis, after transplant and for the rest of his life, he’ll be taking over 15 pills per day. He can’t even skip one day; these pills keep him alive.

Doug’s insurance helps to reimburse us for mileage, tolls, some meals and some lodging up to a year after transplant. We have not been able to qualify for help from Medicaid like some organ transplants do.

HelpHOPELive has been a big help to us. The bills from the pharmacy go straight to HelpHOPELive for payment so we don’t have to cover the cost up front. The staff at HelpHOPELive is helpful and knowledgeable and has advised me on which fundraising ideas work better than others.

Douglas Petrie HelpHOPELive

Carol added Doug’s HelpHOPELive page to her email signature to reach new contributors

A doctor friend of ours sent out letters to his colleagues informing them of Doug’s condition and asking for donations, and they raised more money than any one big fundraiser would have. I’m working on an idea for a large annual event that would pay for Doug’s medicines for a year.

Doug says he had to learn to breathe again after the transplant. With a few precautions, he should be able to do almost anything. It’s been a year since his lung transplant and we are forever grateful to the donor and family, and to all of the folks at Tampa General Hospital and HelpHOPELive.

Douglas Petrie HelpHOPELive

Doug “should be able to do almost anything” post-transplant

This has been my third time serving as a caregiver. I took care of my parents before they died. I have never been interested in medicine or taking care of the ill, so taking care of someone this time around is surreal. This is not my calling, but it is what I do for a loved one.

There are decisions I had to make for the family when I first took on this role. I had to tell Doug he had to stop driving until after the transplant. I had to make sure I had all the contact numbers for doctors and the hospital. It was my job to tell the doctors how Doug was progressing. I had to make sure Doug did not do too much. It was frustrating for him when he would become tired and he would not be able to do little things like carry dishes from the table to the kitchen. I had to learn [to identify] when he reached this level and help him calm down.

You need others to help when you are a caregiver. Our son, Chase, and a young family friend helped out. It is good to have someone on call who can drive for you. After transplant, Doug had to see the doctor once a week for 8 weeks. The doctor was an hour away and the drive became tiresome for us.

Douglas Petrie HelpHOPELive

“You need others to help when you are a caregiver.”

Since the transplant, I’m more of a manager and I’m less hands-on. Doug takes his own vital statistics daily, checks his lung capacity and logs the information to take to monthly clinic visits. I just make sure it gets done.

We have tried through this journey to keep our sense of humor and that has been a big help. We have also had a strong prayer support system. I have tried to carve out time for myself away from the house, whether it’s a movie, lunch with a friend or a haircut.

Doug and I have a deep faith and that has kept us grounded. I look at Isaiah 43:1-3, a passage that includes two of my favorite words from scripture: “fear not.” I claimed this scripture for our family and have gone back to it time after time, praying it back to God.

Our neighbors and friends have helped with contributions and checking in on me and our son. I have a group email list for family, friends and contributors and I have a group text for family to keep everyone up to date. Between that, posting on Facebook and calling our church, I can have several hundred people praying for Doug in a very short period of time. This has been a source of hope and assurance for us.

I would advise other transplant families to keep their sense of humor and laugh lots. Doug recommends to other transplant families that they should do everything medical professionals tell them to do, no more and no less.

Don’t try to do more because you’ll tire yourself out. Be sure the doctors order home health support for you including a physical therapist. Don’t be afraid of filling up your pill box. Don’t be afraid of calling your post-transplant coordinator with questions. Don’t be worried about raising money – HelpHOPELive will help you.


Learn more about life after transplant by checking in with Doug and his family at helphopelive.org. Want to learn more about transplant preparations, costs and fundraising options? Find more transplant stories like this one.  

Voices Of Hope: I Am Living Proof Of What An Organ Donor Can Do

Lauren Ann Arkens received a lung transplant in December 2015 after years of struggling with the effects of cystic fibrosis. She draws support from a strong community of friends and family members including her husband, Tyler. We asked Lauren and Tyler for their perspectives on fundraising and being there for the people you love.

Lauren Ann Arkens HelpHOPELive

Lauren Ann, Lily and Tyler Arkens


How did the reality of lung transplantation differ from your expectations?


Lauren: I had no expectations going in. I heard about what could happen and what was going to happen but nothing can prepare you for what actually happens. In a way, I am kind of happy I didn’t speak with anyone prior to my transplant because I think I would have been comparing what I am going through to what they are going through. Everyone is different and everyone’s experience is going to be different.

Lauren Ann Arkens HelpHOPELive

“Nothing can prepare you for what actually happens” during a transplant

Tyler: This is a really hard question. Personally, the only expectation I had was that life would be noticeably different, that the pieces would fall into place and I would simply deal with however they landed. I know I told a lot of people, “Everything will work out the way it should. Maybe not the way I want, but the way it should,” and I just left it at that.


What’s the worst part of life after transplant? What’s the best part?


L: The worst parts of life post-transplant are all the follow-up appointments and specialists I have to see. I see more doctors now that I am “healthy” than I did when I was sick and on the waiting list. The best part of life post-transplant is getting three hours back in my day when I used to have to use a vest and nebulizer treatments. Also all the energy I have, being able to move around, exercise, run and be a mom and wife. All of these things people may take for granted, but for me, the little things were the most difficult pre-transplant.

Lauren Ann Arkens HelpHOPELive

Lauren sees more doctors now that she is “healthy”

T: The worst part is by far the uncertainty. We had our fair share of hospitalizations when Lauren was still seeing her pulmonary doctors and we could usually tell when something wasn’t quite right; Lauren knew her body pretty well. Today, we have a new normal that we’re adjusting to. While Lauren might feel fine internally, there could be more going on, so when we visit, the uncertainty of whether or not Lauren is going to be hospitalized can be a little frustrating.

The best part is Lauren’s quality of life. She’s just happier. Things are fun and funny again. You can see her light up with joy when something touches her heart or fills her cup. She has a tremendous amount of energy, part of which is more oxygen in her system, and part of which is realizing that she’s really been provided another chance.

Lauren Ann Arkens HelpHOPELive

“You can see her light up with joy” again, said Tyler


Lauren, is your health journey completely over now that you’ve been transplanted?


L: Absolutely not! Being transplanted just adds another chapter. There is a lot of care that goes into maintaining new lungs. My transplant team has a home monitoring program that I have to do, I have lab work done once a week and I have appointments two to three times per month. It is never-ending but it is all for the better! This was a gift–a huge gift–and I don’t want to fail at it. My work is never going to end.

T: Lauren is a worker. I have described her as tenacious, consistent and determined. She understands what it takes to succeed. The expectations have been laid out and she doesn’t take it lightly. She understands the gift and the work required to keep it.

Lauren Ann Arkens HelpHOPELive

Lauren must work daily to keep her lungs healthy


What’s one thing about transplants you wish everyone knew and understood?


L: People don’t understand the time and money it takes to have a transplant. Medications are expensive, co-pays are high and some medications are not covered by insurance. There are hospital stays that may be unexpected plus regular appointments and procedures. None of this is easy. It can be draining mentally, physically, emotionally and financially.

Lauren Ann Arkens HelpHOPELive

Transplants are mentally, physically, emotionally and financially draining

T: There is so much that people don’t or can’t understand with regard to chronic illnesses and treatments. We’ve learned to give people the simplest answers and to operate from the mindset that every body is different and everyone’s response to treatment is different. It isn’t a simple process in which you check the boxes and reach a goal. This is a lifetime of learning, adjusting and adapting. That’s hard to explain [to others].

Lauren Ann Arkens HelpHOPELive

“Nurse Lily” helps mom with home health care


How did you learn about HelpHOPELive?


L: My transplant social worker told us about HelpHOPELive and said that many of her patients had great success with it. We decided to use HelpHOPELive because it was the best option for us. A family friend set up a campaign for us so we didn’t have to worry about it on top of everything else we were dealing with. One factor was that HelpHOPELive donations would be tax deductible for the person donating and we would not be taxed on the funds we requested for medical and related expenses.

Lauren Ann Arkens HelpHOPELive

Fundraising helps cover out-of-pocket medical needs

T: It was hands down the best program for us to fundraise with. As a nonprofit organization, it allows the patient to benefit the most and it gives people peace of mind when donating that their gift or donation will be used wisely and never for another purpose.


Why is fundraising important to you on this transplant journey?


L: To be honest and blunt, if it wasn’t for fundraising, I do not know how we would have afforded medication, gas for appointments, meals and three months of house and electric bill payments while I was off work. All of that has been HUGE and has made such a difference for us in not having to worry while recovering.

Lauren Ann Arkens HelpHOPELive

“I do not know how we would have afforded medication” without fundraising

T: Fundraising helps us afford the things we need for Lauren to survive. But it also provides us with a network of people who have really shown that they care about Lauren and her journey. It blows me away. Fundraising gives people peace of mind that they are supporting someone who really needs their help. Lauren is a real, live person with whom they can meet and she can give them credit and thanks for what they’ve done to support her journey. Finally, fundraising allows us an opportunity to pay it forward. We’ve been overwhelmed by the support, and that has motivated us to go out and give back on behalf of that community.


What advice would you give to someone who has just been added to the lung transplant waiting list?


L: Fundraise as soon as you get listed or even before. We benefited greatly from fundraising early. It made going into the transplant a little easier knowing we had money to pay for things we needed when we needed them.

T: Don’t think about the enormity of the situation and don’t let the weight of the unknown get to you. If you’re able, continue to live your life. Take care of yourself and handle your business every day. That’s all you can do. Then, when your time comes, just focus on the instructions you’ve been given and execute.


How important are friends and family members during this process?


L: It’s extremely important to have friends and family involved in the process. If it wasn’t for the support we received, whether financial or through prayers, I don’t know where we would be today. It took a lot of pressure off of my husband during my period of recovery so he didn’t have to handle everything. People care and they are often amazed at what a person can go through and how they can recover.

Lauren Ann Arkens HelpHOPELive

Friends and family support Lauren with “Lungs N Roses” shirts

T: We’ve developed a very close, tight-knit group of people we can count on when we need to. Interestingly enough, it’s not the people you see or talk to the most who will step up when you need them the most. It’s the people who, when you see them, you feel like you can pick right back up where you left off.

Support for us has come in a lot of different forms. We had a small team that set up meals, household chores, donations, gift cards, taking our daughter, Lily, to and from school and staying overnight while Lauren was hospitalized and recovering. We’ve benefited greatly by creating different ways for people to help and giving them options.


Tyler, can caregiving during a transplant change a relationship?


T: It creates a different dynamic for each relationship. My relationship with Lauren changed a lot. Lauren was in survival mode and despite not wanting the help (she has a strong will), she needed it. It’s hard to ask for help. From my perspective, all I wanted for Lauren was to feel well. I had to adjust to the new dynamic of our lives. There is always a give and take in every relationship. You really have to open yourself up to give yourself to someone and accept someone.

Lauren Ann Arkens HelpHOPELive

“My relationship with Lauren changed a lot,” said Tyler


Are you an advocate for organ donation?


L: I am living proof of what an organ donor can do. It is a chance at a better life. My life was so restricted pre-transplant, and now, what I can do is endless.

T: Yes; the obvious reason for that is because I’ve seen someone’s life change completely. But even if our result wasn’t as positive as it has been, I would continue to be an advocate. We’re all called to give life. We need to discover that giving life has many different meanings and it looks different for everyone. If we’re all really trying to give life, why not give part of yourself to someone who needs it?

Lauren Ann Arkens HelpHOPELive

Tyler celebrates his wife’s transplant journey


What does the word HOPE mean to you?


T: Hope is knowing that no matter what you’re going through, there is something better on the other side. It is contagious and inspiring and if we’d just let it, it would change our world.

L: Hope means believing that there is something better for you. And whatever Tyler said!

Lauren Ann Arkens HelpHOPELive

“There is something better on the other side.”


Learn more about Lauren and Tyler’s journey at helphopelive.org. Find out how you can support a spouse or loved one with their out-of-pocket transplant expenses by reaching out to HelpHOPELive on Twitter.

Five Myths About Caregiving

“The word ‘caregiver’ often conjures up the image of someone who stands next to a bed distributing pills or wiping a brow. In reality, a caregiver takes on numerous roles.  For me, becoming a caregiver after my husband’s diagnosis has meant taking on the responsibility of all the household tasks, jobs that my husband and I used to divide up and share. Almost every single task is now done by me, from financial planning and home repairs to car maintenance and the bulk of parenting.

caregiving

“Almost every single task is now done by me”

Here’s an example of how our lives look different now. Braden and I used to enjoy working outside in the yard together. He would take on the larger, heavier jobs such as trimming weeds, mowing and using the snow blower.  Now, all of that falls on me. Being a caregiver has also made me the ‘practice coach’ for our children as they participate in sports, something Braden enjoyed doing before the days of oxygen tanks when he could run and move around easily. Many times I feel like a single parent, taking on things I never thought I would have to do by myself.

single parent

“Many times I feel like a single parent”

With that in mind, I would like to share some of the misinformation I’ve dealt with as a caregiver. Statistics are from this source.


Myth 1: Caregivers are middle-aged mothers, wives and daughters.


Although I fall into this category, statistics show that today about 40% of caregivers are men, and many caregivers are between the ages of 18 and 34.

caregiver

40% of caregivers are men, many between 18 and 34


Myth 2: Caregiving is done in addition to someone’s full-time job.


In reality, about a third of caregivers quit their jobs or reduce their hours in order to care for a loved one. In many cases, caregiving becomes the person’s full-time job and their career is put on hold.

job stress

A third of caregivers reduce their hours or leave their jobs entirely


Myth 3: People already know how difficult caregiving can be.


Many caregivers suffer in silence and do not ask for help. This is another category I fall into at times. People who help take care of a loved one often have generous or strong personalities and either do not like to or do not know how to ask for help.

help

“People are unaware of the magnitude of the work a caregiver is undertaking”

The problem with not reaching out is that it creates a deficit of support: often other people are unaware of the magnitude of the work a caregiver is undertaking or the stress the caregiver is under. Which leads to this fourth myth…


Myth 4: Caregivers should always be positive and shouldn’t complain.


There is a fine balance for me between sharing personal details to keep people informed and maintaining privacy.  Our family tries to maintain a positive outlook, so talking openly about the illness and related problems was a challenge until we learned several key things.

happy

Are caregivers allowed to express their frustrations and difficulties?

First, we are not alone in our experience; most people have been touched by something similar. Second, dealing with these issues has enriched our lives. Being able to share our challenges provides us the chance to not only help others but to help ourselves, too. The updates we share on Braden’s HelpHOPELive campaign page are a wonderful opportunity to keep our family and friends informed and discuss caregiving as well as Braden’s journey towards transplantation.


Myth 5: Caregiving is a thankless job.


Being a caregiver is stressful and often discouraging, and it can be overwhelming.  But caregiving is also very rewarding at times.  Some caregivers experience an emotional and spiritual sense of fulfillment. Taking care of someone you love provides opportunities to grow closer and form bonds with each other and other members of your family or support network.

Understanding and dispelling these caregiving myths may help us to seek assistance, gain support and lessen some of the stress we encounter as we help take care of someone we love.”

Braden Richards HelpHOPELive

Beth is the wife and caregiver of HelpHOPELive client Braden Richards


Beth is the wife and caregiver of Braden Richards, who is fighting a rare autoimmune disorder. Braden and Beth are fundraising with HelpHOPELive for the out-of-pocket costs associated with a lifesaving lung transplant.

My Life As A Father And Grandfather Who Needs A Transplant

Kappy Pease is a father and grandfather living with a severe lung disease. He is on the waiting list for a lifesaving double lung transplant. We asked Kappy about his perspective on balancing fatherhood and the challenges of life on the transplant waiting list.


Why Fundraising Works For Us


Since my first visit to the hospital where a social worker suggested we begin a fundraiser to help us with the costs of transplantation, my family has come together and has been very helpful in their efforts to work with HelpHOPELive. So far, because of their dedication, we have been very successful.

Each of my kids has taken time out of their busy life to take some of the burden off of my wife, Theresa, and I, both physically and emotionally. They have each stepped up in their own way and have been very supportive. I know I could not do this without all of them.

Kappy Pease HelpHOPELive

“I could not do this without all of them.”

Although my insurance will cover most of the transplant procedure, there are many hidden and unexpected costs not covered. The expenses begin long before the procedure takes place and they last a lifetime, including travel, lodging, parking and food during countless hospital visits and the unpaid time off that my wife will take in order to care for me after the procedure. Most of all, fundraising will help contribute to the cost of the (antirejection) medications I will need to take for the rest of my life after the transplant.

I have found that much of the support I receive comes from old friends who have learned about my time of need through social media and our HelpHOPELive campaign. Working with HelpHOPELive has been a very positive experience. Their knowledge and support has been very helpful to someone who had no prior experience with fundraising.

Kappy Pease HelpHOPELive

HelpHOPELive provided custom fundraising materials and more.


How My Family Supports Me


It has been very rewarding to watch my kids grow and begin to start their own families. I am very proud to say that they have each become very successful in their own way. I’m humbled by the compliments I have received about my kids. The way they have stepped up for me during this time makes me feel like my wife and I raised an amazing family.

Kappy Pease HelpHOPELive

Family members “have stepped up for me during this time.”

At this point in my life, I feel closer to my kids than ever before. Before my diagnosis, I worked very long hours that caused me to miss out on a lot of my five kids’ daily lives and activities. I especially missed getting to watch their sports games, because sports are something that are very special to both me and my kids.

I feel that the physical limitations of my disease have been more challenging as a grandfather than as a father. My kids are adults now, and they need me more as an advisor and a part of their emotional support system.

Kappy Pease HelpHOPELive

A transplant will help Kappy spend more quality time with his grandkids.

Since my diagnosis, I have been given the chance to spend more time with all of them and grow closer to them; however, because of my disease, there are also many things we still cannot do together. The hardest part is my limited ability to play with my very young grandchildren. Once I get the transplant, I will hopefully be able to do many things that I have missed doing for the last 10 years. That includes golfing, hunting, fishing, playing with my grandkids and taking long walks with my wife.

My advice for a new father is, enjoy every moment because they grow up way too fast.

Kappy Pease HelpHOPELive

“Enjoy every moment” Kappy advises new fathers.


Learn more about Kappy or donate in his honor at helphopelive.org. If you know a father who needs help fundraising for a transplant, reach out to us today to learn how you can help.

Has Fundraising Helped You? You Can Pay It Forward!

Has fundraising had a positive impact on your life? You have an opportunity to give back to your community and support other families facing a medical crisis. Last week, we featured Danielle Bailey, who has helped several local families kick-start their fundraising efforts with HelpHOPELive. This week, we feature five tried-and-true ways to start making a difference today.

pay it forward


…supporting families who are going through a similar situation.


You can help families navigate through the same challenges you’ve overcome. As heart transplant recipient Rick Brittell explains, “Before I got my heart, I was so tired of being away from home and isolated. Then my social worker reached out and asked if [my wife and I] would be willing to meet with a patient at the hospital who was facing a similar situation. We began to focus on supporting others. We started a support group in the local area that was open to lung and heart transplant candidates and recipients, caregivers and people who were grieving.”

HelpHOPELive Pay It Forward

You can be a vital source of support for another family.

Rick notes that this kind of support can make a tangible difference in someone’s life: “The doctors have said to us, ’You don’t know how much of a difference you have made.’ They even told us that people are being released 3-4 days earlier than average now that we are there to provide support!


…referring families to HelpHOPELive for nonprofit fundraising support.


Do you know someone who needs help fundraising for medical and related expenses? Help him or her understand how HelpHOPELive can help. Point other families in need to helphopelive.org for more information. If you would like additional resources to share with others who may need our help, contact us today.

Diane Maxwell, wife of transplant recipient Mark Maxwell, explains how she helped another family find us: “I met Jude Jamieson through a woman’s retreat, where I learned that she also had a husband with a chronic illness in need of a transplant. I encouraged her to contact HelpHOPELive and start a fundraising campaign since her husband’s transplant hospital required a $5,000 account balance at minimum to list a patient for transplant. They were able to raise the funds through the summer and fall. Her husband went into acute liver failure, but less than a week later, he had a new liver thanks to their fundraising efforts. All I did was be bold enough to suggest she contact HelpHOPELive. You guys did the rest, right on time.”

HelpHOPELive Pay It Forward

Diane referred Kevin and family to HelpHOPELive for fundraising help


…supporting HelpHOPELive’s mission.


Every donation to our nonprofit helps families across the country receive tangible and compassionate fundraising support. You know firsthand how important that support can be when a medical crisis strikes. Become a monthly contributor to HelpHOPELive today and begin paying it forward to families who need our help to combat the high cost of medical and related care.

HelpHOPELive Pay It Forward

Want to see the true impact of your gift? Keep up with stories of hope on our Blog and on our website, or get a handpicked selection of tips and stories in your inbox every month!


…using your next fundraiser to serve the community.


As Heidi Anderson, mother of 2-year-old transplant recipient Deanna, explains, “Deanna lived in the hospital for more than three months before her transplant. We were visited by many people during that time, including volunteers who would bring her toys and gifts. It truly touched my heart. I see so many children at the hospital now who really need a smile.” Heidi knew a fundraiser in honor of Deanna could provide a way to give back, so she “decided to collect toys for kids at the hospital through a toy drive as part of one of Deanna’s Valentine’s Day HelpHOPELive fundraisers.”

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The toy collection was a huge success, says Heidi: “So many people brought toys! It made me incredibly happy! We are still collecting today.


…donating in honor of a particular family.


After getting her own fundraising campaign rolling, LAM fighter and transplant candidate Nicole Seefeldt found a way to pay it forward. “I met Alyssa Mebs while I was getting my transplant evaluation,” says Nicole. “We just started talking one night and we became fast friends. Once I saw that Alyssa was fundraising for a transplant, I thought, what can I do to help her? I knew I was going to meet my first fundraising goal…so I donated what I had to give in her honor.”

HelpHOPELive Pay It Forward

Nicole, left, made a donation to HelpHOPELive in honor of Alyssa

Today, when Nicole asks for donations or donates to a fellow HelpHOPELive client, she keeps this advice in mind: “It’s not the dollar amount you give, it’s that you give at all. Not everybody has a lot of money, but since it’s tax-deductible, every penny is something that they can use that compounds the effect. I never want to put an amount that people have to give. I just encourage them to give what they can.”


You don’t have to have it all to give back.


As Heidi Anderson explains, “Giving back is something we should all consider. Whether you do it with a toy drive or something else, paying it forward is about giving love and kindness to others who need it most.”

Today, consider how you can give back to the community that has given you so much. If you have a great idea for giving back, contact us and we may feature your campaign in an upcoming Blog post!

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.

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.