Tag Archives: support

Voices Of Hope: “No Matter What Happens, We Always Love Each Other”

Yusef Harris is a loving father and a longtime community volunteer and youth mentor. Combating health issues since 2004, Yusef needs a kidney transplant to live a long and healthy life. He and his family have turned to HelpHOPELive for fundraising support.

Yusef Harris HelpHOPELive

Yusef is fundraising or a kidney transplant with support from his family

As he copes with the challenges of end-stage renal failure and exhausting dialysis treatments, Yusef draws inspiration from his family to stay positive and keep fighting. We asked daughters NaQari and Miyala about fundraising and sticking together as a family in the face of challenging circumstances.


How is your family helping Yusef to manage fundraising?


Miyala: We help sell shirts and do our best to promote his HelpHOPELive campaign and let others know about it. We have all purchased and worn his #LemonadeLife clothing as well! We started the #LemonadeLife hashtag with our father because, as our dad puts it, “I refuse to let kidney failure end what I know to be a meaningful life.”

NaQari: We also go out with him and educate people about kidney failure and being organ donors using HelpHOPELive brochures and bracelets.

Yusef Harris HelpHOPELive

“When life gives you lemons…”


What are you currently fundraising for to help Yusef?


NaQari: We are currently fundraising to help cover the bills that come with the kidney transplant surgery and the medications he will need to live with a new kidney.


When did you first realize how expensive a transplant could be for your family?


Miyala: When we took time to talk about the transplant process and what we would all have to go through, we learned about the financial commitment.

NaQari: I realized the financial commitment the moment my father began to take precautions and go through all the necessary steps required for him to be a candidate for the transplant surgery. I learned about the cost mostly from my father, and I also learned through research on the Internet and heard about the financial component from people who had received a transplant who posted about it on Facebook. I was told that the anti-rejection medications would be between $200 and $300 per month for the rest of his life.

Yusef Harris HelpHOPELive

Yusef will take on the financial burden of transplant with help from family and friends


Is your community supportive of what your family is going through?


Miyala: Everyone is there for us if we ever need anything. We have people we can count on.

NaQari: Our church family and Facebook community is very supportive. They understand that my father is going through tough circumstances and they do everything they can to help, whether that is donating or sharing my father’s story.

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How do you feel about fundraising with HelpHOPELive?


Miyala: It’s been great. My dad talked to me about working with HelpHOPELive and what is being done to help us is wonderful.

NaQari: I love fundraising with HelpHOPELive! They provide a professional-looking site and help with the work necessary for my father to raise funds.

Yusef Harris HelpHOPELive

NaQari appreciates that HelpHOPELive provides “help with the work necessary for my father to raise funds”


Do you think it can be difficult to stay positive while on the transplant waiting list?


Miyala: I know for a fact it’s difficult. Having to wait is hard. Your whole life depends upon what happens at that point. I just say to him and anyone else, never give up. God has a plan for you.

NaQari: It can be very difficult staying positive while on the waiting list because so much can happen. You can get an at-risk donor or someone who doesn’t match your blood type, and that makes you think more about the possible complications that come with the surgery. My advice is to pray and keep a positive spirit, because if you think positive you will have positive results.


Is it challenging to watch your father cope with a chronic health condition?


Miyala: I know that things are hard but at the same time, you never know exactly what that person is going through or feeling. You want to understand, but sometimes that’s hard. It hurts to see the pain that they go through.

NaQari: My dad had to quit working because of his health. He couldn’t work for long before he experienced pain. My dad has had small bouts of depression and he tries his best to be positive. It affects all of us because we are all so used to seeing that spark in his eye. It is difficult to watch my father cope with his health condition because I can’t experience it or take away the pain that comes with it, nor can I take away all the risks and what-ifs.


What’s the best part about being a member of your family?


Miyala: No matter what we’re going through, we’ve been taught to stick together, and that’s what we do. I always know that my dad and everyone else in my family is there for me.

NaQari: No matter what happens, we always love each other and have fun together.


Tell us a little bit about your dad’s role as a youth mentor in the community.


NaQari: My dad has mentored and become a father figure for many young men in our church community and he has helped them with everything from homework to life lessons. He loves mentoring young people because he wants to help them become wonderful men and keep them from being another statistic in their neighborhoods.

Yusef Harris HelpHOPELive

Yusef’s community is grateful for his work in youth mentoring

It became a part of his life when these individuals were born and came to our church. On a day-to-day basis, he is doing everything he can to better himself. Then he calls or messages the individuals or their guardians or parents to check up on them to see how things are going and if he can help them in any way.


When it comes to your dad’s life, from living gracefully with a chronic condition to volunteering and mentoring at-risk youth, what are you most proud of?


Miyala: I love that my dad took his story and made it into something so positive. He wants everyone to know that life will give you lemons, but all you have to do is make lemonade. It’s never over. I just want my father to know that I am very proud of what he’s done. He has helped mold me into the young lady that I am, and I love him for that.

NaQari: Even when he doesn’t feel good, he finds a way not only to be my father but a father for other children who don’t have one. To me, that is the most selfless thing I can think of, because he provides for those children as well as us.  My dad has found a way to love his wife and two daughters unconditionally while giving the same love to many other kids at the drop of a hat. He takes care of them just like he would take care of us. I love that about my dad.

Yusef Harris HelpHOPELive

Yusef’s family and community are behind him on his transplant journey


To learn more about Yusef, NaQari and Miyala, visit helphopelive.org.  Want to help support transplant families? Make a donation to HelpHOPELive and find out what else you can do to raise awareness and support families facing a medical crisis.  

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!

Touched By Transplant: What It Feels Like To Get A Heart

In August 2015, John “Skeeter” Coleman was diagnosed with end-stage heart failure. In October 2015, Skeeter and his family began fundraising with HelpHOPELive to prepare for a lifesaving heart transplant. This is the story of how Skeeter received his new heart.

touched by transplant full


I was the “best of the worst,” the doctors said when they put me on the heart transplant waiting list. They said I’d have a heart within seven days. Fourteen days later, they told me to “keep up the positive attitude.” They told me my heart was coming.

John Skeeter Coleman HelpHOPELive heart transplant hospital

In the hospital with grandson Maxson

On the 21st day of waiting, a committee got together at the medical center to work out how to get me an LVAD as a bridge to transplant. No sooner had they convened, someone came into their meeting and said, “We just found a heart for Skeeter.” All the doctors I had worked with came running down to my room. I thought, “What is going on? This looks bad.” Then one of them came forward and said, “We found you a heart.” We hugged; it was a joyous moment.


The average wait time for a heart is about four months.


That night, the anesthesiologist came in with two orderlies to wheel me to the operating room. I said, “Let’s go. I’ve been waiting for this.” They took me to the elevator, and wouldn’t you know it, the bed got stuck and they couldn’t get it out! They kept trying and trying until I said, “This is crazy. Y’all just stop right here.” I got up, no shoes, no socks, rear end flapping in the breeze, and I said, “This is my last walk with this old heart. Leave that bed right there. We have a heart to transplant.”

They followed me right to the operating room. The doctors in the operating room were speechless, and then they all burst out laughing. That’s the last thing I remember before the operation.

Skeeter Coleman HelpHOPELive

With niece Tricia

The operation lasted six hours. When they brought me out into the recovery room, the doctor noticed I was passing a lot of blood, more blood than he had anticipated. They took me right back into the operating room, opened me back up, found a leak, repaired it, stitched me up, and I was put on a ventilator in the recovery unit for three days.

When I woke up, I couldn’t really move or see because of the anesthesia. All I saw was white. I thought I was dead. Then I heard a voice and the voice said, “Daddy!” It was my daughter’s voice.

“I can’t see you,” I said.

My daughter said, “It’s okay. You’re doing okay. But the Cowboys lost.”

And I said, “That’s terrible. But I’m alive?

She said, “Yes, you’re alive.”

Skeeter Coleman HelpHOPELive

With daughter Kelly

Five hours later I came out of the anesthesia fully, and I was alive. It was just wonderful. All my doctors came back in and told me I was doing okay. I still had in my breathing tube. The next day, the doctor just reached over and ripped it right out and said, “Take a deep breath.” That was like a miracle. I could breathe again. It was the greatest feeling in the world.

My daughter walked into the room with a stethoscope. I don’t even know where she got that thing from. She said, “How would you like to listen to your new heart?” That was amazing, just sitting there listening to the new heart beat.


62,754 people have received heart transplants since 1988 thanks to organs from deceased donors.


Fundraising For A Heart Transplant

I stayed in the hospital for almost a month as they adjusted my meds and looked for signs of rejection. When I left the hospital, I was still getting blood drawn every week. I started a new medicine after a rejection scare that cost $1,000 out of pocket for one week’s supply–it wasn’t covered by medical insurance. That right there is why you need HelpHOPELive

first time outside after 60 days

Skeeter stayed in the hospital for almost a month post-transplant

Today, I still have to return to the hospital every three weeks for heart biopsies and every two weeks for med adjustments and blood tests. That’s where HelpHOPELive donations have been incredibly helpful, for medications and doctor’s visit co-pays that are out of pocket, plus the cost of transportation. I go to cardiac therapy three days per week and physical therapy three days per week.

You never know from day to day what expenses you will get hit with. In therapy, for instance, they may recommend a special sling that isn’t covered by insurance, so you have to buy it outright. It costs $100. Then they say, well, you’re going to need this other special piece of equipment, too. That’s another out-of-pocket expense. These expenses can add up to the point that they eat you alive.

10th heart biopsy Facebook

Skeeter at the 10th biopsy of his new heart

Doctors may advise you to switch to different medications, or they may even double up on medications. Sometimes medical insurance only pays for a 30-day supply once a month, and they will not increase that to twice a month even if the doctors recommend it. Other times, you’ll get hit with a bill for something unexpected. I got a bill the other day for $38,675 for X-rays. You sit around and wait for answers, and you think, “How can I pay these bills? I can’t do it.” You just never know what’s coming. Insurance can’t pay for everything and neither can supplemental insurance. That’s why HelpHOPELive is important to me.

with old heart

“You just never know what’s coming,” said Skeeter, pictured with his old heart


According to data from 2012, 76.8% of heart recipients are still living five years post-transplant.


“I’m Glad They Kept Me Alive”

My advice to others is to stay positive and get rid of negative people. Concentrate on making other people aware of all of the good things that organ donation can do. I’ve got a positive attitude, and I try to stay busy fundraising, managing my finances and doing my exercises. I’m looking forward to figuring out how I can help people to be more aware of organ donation and what it means to be willing to donate their heart.

I woke up today. I can breathe. I can walk. I’m alive. I’m healthy. I have friends like all of you.

I’m glad they kept me alive. Life is good. Here I am, and I can see the sun shining.

With son Alan Coleman


HelpHOPELive, Donate Life Month, donate life, Touched By Transplant, transplants, kidney transplant, liver transplant, pancreas transplant, transplant costs, transplant medications, meds, paying for transplant

Follow our Blog to learn what happened when Skeeter met the wife and children of his heart donor!

Between Hope And Acceptance

Abi Dietz was on her way to school in September 2012 when an auto accident left her with a severe traumatic brain injury. After the accident, Abi was unable to move or communicate. After extensive inpatient rehabilitation, in June 2013, Abi was able to move into her mother’s home. Her family began fundraising with HelpHOPELive for uninsured expenses to help improve Abi’s quality of life and maximize her mobility and independence. Abi’s mother, Georgina, gives us an idea of how life changes after a traumatic injury.

Abi Dietz HelpHOPELive

Abi was injured in 2012


Describe a day in Abi’s life.


Abi is 100% dependent on the assistance of others for all activities of daily living. Each morning when Abi wakes up, I or another caregiver do passive range-of-motion exercises with her. We do her personal care and get her into her wheelchair using a hoyer lift. We then read to her, watch YouTube music videos or do other movement exercises, such as throwing a beach ball and asking her to bat or kick it back to us. This responsive movement is actually new, and even though it seems slight, we are glad that she is responding more than she previously had been.

We have Abi stand in the standing frame three times per week. We take her to scheduled doctor’s appointments, the mall, a local art museum and to the park when the weather is nice. We have a music therapist come in weekly and spend an hour working with her. She listens to familiar songs she used to like, and the therapist tries to get her to play a digital guitar on an iPad or move her hand and arm to play a simple instrument.


Have you noticed any improvements since the injury?


Abi is now able to move her left side at times, but her communication is inconsistent. At times, she is more alert and moves more to look around at her environment. She also shows more movement when giving someone a fist bump, trying to hold something and letting it go again, or reacting to someone throwing a ball towards her.

Abi Dietz HelpHOPELive

Abi is currently 100% dependent on the assistance of others


What are some of the biggest challenges of life with a traumatic brain injury?


The accident has changed our family dynamics in many ways and it has been difficult. Finances are a struggle as well as feelings of isolation. The struggle between accepting what is and still having hope is also a challenge.


What are you fundraising with HelpHOPELive for?


We have been able to purchase an accessible van thanks to fundraising and financial help from a family member, but we still have outstanding expenses. Abi was a musician and music therapy has reached her in places that other therapies haven’t. This type of therapy is not covered by insurance and we use the money raised through HelpHOPELive to pay for it. We also fundraise for in-home massage therapy and physical therapy. Abi has painful spasticity issues and these therapies help stretch and relax her so that she is more comfortable.

music therapy

Music therapy is not covered by insurance


What does hope mean to you?


Hope means believing that things can change. It takes a lot of patience to wait for change to happen and as I said before, it is hard to find the balance between hope and acceptance.


What can the average person do to recognize Brain Injury Awareness Month in Abi’s honor?


You can donate to HelpHOPELive in honor of Abi to help her secure life-enhancing therapeutic treatment that could help her regain mobility and communication skills. You can also send a card to her or to anyone who has a traumatic brain injury. We receive beautiful cards with nature photography from one couple at least once per month. It is so nice to know we are not forgotten.

March is Brain Injury Awareness Month

March is Brain Injury Awareness Month


Follow Abi’s story at helphopelive.org. If you know a family that needs help covering the uninsured expenses related to a traumatic injury, start a fundraising campaign with our nonprofit today.

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.

Voices of Hope: Living With LAM

I once wondered if I would make it to age 30; I’m 38 now. I am Nicole Seefeldt, and I have been living with the chronic lung disease lymphangioleiomyomatosis – more commonly known as LAM – for more than 10 years.

Nicole Seefeldt HelpHOPELive

Nicole after an improv workshop


My Story


In 2010, I began having a yearly talk with my doctor about a (double lung) transplant. I was feeling fine at the time with my LAM, but my doctor knew it was a good idea to bring it up as soon as possible to prepare me. At every session, the doctor would check my oxygen numbers to determine whether or not getting evaluated for a transplant would be in my immediate future.

For me to stay on my insurance plan, I had to work 30 hours a week. That was a significant reduction to my original work hours, but my energy levels became so unpredictable, I could only work for an hour or two on a good day before needing a break. I was planning to work up until my transplant evaluation, possibly part time. But my doctor advised me to quit working in July 2015 when I experienced a rapid drop in my oxygen levels and had to be taken to a hospital immediately. My doctors still don’t know what caused the desaturation, but since then, I have needed oxygen 24/7.

I had to talk with my parents and friends to tell them I would need their support and a dedicated caregiver to help me through the process. My best friend stepped up right away! Luckily, support is one thing I was not lacking as I began to prepare for transplant: I am well-connected via social media, volunteer work and improv comedy, which I like to do in my downtime.

Nicole Seefeldt HelpHOPELive

Nicole set a goal of $20,000 when she started fundraising

When I started fundraising with HelpHOPELive, I set a goal of $20,000 in order to cover the expenses I would be responsible for when the time came for my transplant. The $20,000 would also allow me to receive two challenge grants from HelpHOPELive.

HelpHOPELive: Contact your Fundraising Coordinator today to learn more about how to get a challenge grant when you reach a fundraising milestone.

Since last year, some of my disability insurance benefits have been decreased, changed or even eliminated, so my out-of-pocket expenses may continue to increase, especially the temporary housing costs I’ll face during my post-transplant recovery period (I don’t meet the distance requirements set forth by my insurance provider to be covered or reimbursed for this expenses). That’s why fundraising is an essential part of this journey.

It’s easy to feel shame and guilt when you have to stop working because of an illness. Fundraise to take some of the pressure off for you and your family and free up your expenses to stay afloat until you can get to a healthier place. It’s important to be transparent if you’re struggling. You have to say, look, this is why I need this money: I am on X medications that cost me X per year; my insurance premiums cost me X per month, even with Medicaid. People understand that as long as you give them something quantifiable.


How I Keep Hope Alive


There are a few things I do to fight back while I wait for a life-changing transplant:

  1. Keeping myself healthy. My exercise levels are back to a healthy level so I can do a few light weights and other things to build up my upper body for transplant. I need my upper body to be strong enough to rebound and heal after the transplant takes place. There were times in the past where I wouldn’t feel good and would get frustrated with exercise. But exercise is one thing I feel like I can control, and my lungs feel much clearer when I do it. It’s the one gift I can give my medical team to fight back.
  1. Staying patient. Living with a chronic illness and facing your own mortality puts your priorities in order in terms of what you value. Ultimately you learn that it’s rough, but it’s not insurmountable. You find your ways to cope and reconcile things. You have to at least in some aspect use whatever you have to fight back and to hang in the fight. I’m empowering myself and other people to make life more manageable. Maybe the research is too late for me but it might not be too late for someone else.

Nicole is fundraising with HelpHOPELive for LAM-related expenses, including a limited period of lost wages as she remains on long-term disability, COBRA insurance payments, oxygen rentals and other uninsured costs.