Category Archives: Transplant

Living with Kidney Disease, I Revel in the Joyous Expectancy of the Good to Come

Melissa Tuff was diagnosed with kidney disease at age 16. She began dialysis at 17 and waited nine years for a lifesaving kidney transplant. After more than 10 years with her new kidney, she is back on dialysis. She is fundraising with Help Hope Live while awaiting a second transplant. Melissa partners with multiple organizations to increase organ donor awareness, influence legislation regarding end-stage renal disease, and support fellow kidney disease fighters.

We asked Melissa about her transplant journey and the driving forces behind her advocacy work on behalf of kidney transplant candidates and other patients across the country.

Melissa Tuff Help Hope Live

Help Hope Live patient Melissa Tuff is an advocate and volunteer


Is transplantation an emotional process?


I was 16 when I faced my first transplant. I was thrown into dialysis and the transplant process with absolutely no idea what to expect. It was a very scary and traumatizing experience for me. Now facing a second transplant, I have had time to absorb everything and have learned a lot from going through the process before, so I know what to expect. All the information I have gathered over the years helps me to process my emotions in a healthy way and allows me not to feel as overwhelmed as I have in the past.

Melissa Tuff Help Hope Live

Melissa documents her physical and emotional journey online

Going into the transplant process for a second time evoked a variety of emotions for me. There is the fear and apprehension of potentially having to return to a life of dialysis if I do not find a living donor; the frustration that my body is slowly rejecting my kidney and there is nothing I can do about it; the gratitude for my donor who has given me nearly 11 wonderful years of life free from “the machine”; the feelings of disappointment that there may have been something I could do differently to prevent rejection; the aggravation associated with the length of the process to get listed; and the annoyance of dealing with the hoops I have to jump through, the delays and the costs incurred.


What gives you strength on the waiting list?


My family has not been involved in my fundraising or health care, so I have relied strongly on my chosen family at the Center for Spiritual Living in Cape Coral and my acquaintances on social media to provide support throughout my journey. I honestly do not know what I would do without them! Their words of support and the people who hold my continued health in their prayers give me the strength to keep fighting on days when I just want to give up.


How do you serve as an advocate and volunteer to support other kidney disease patients?


I volunteer at LifeLink of Florida setting up and sitting at organ donor registration booths at public events, hospitals and fairs. I am a Peer Mentor for the National Kidney Foundation, offering a confidential space in which dialysis patients, transplant recipients and chronic kidney disease warriors can share their experience and receive guidance. I’m a member of the Kidney Advocacy Committee and a Region 4 Leader, helping to influence policies regionally and with a yearly trip to Washington, D.C.

I am also the Secretary for the Organ Transplant Recipients of Southwest Florida support and advocacy group. With quite a full plate, I am still taking on more opportunities to advocate! I will begin volunteering with the American Association of Kidney Patients soon.

Melissa Tuff Help Hope Live

Melissa petitions for positive changes to renal disease legislation


How did you find Help Hope Live?


I began fundraising to help with some of my health care expenses after I was let go due to my declining health. In summer 2012, I was balancing a medical assistant job with a customer service position at a local grocery store. I was exhausted all the time, but had no choice but to keep going to make ends meet. Through exhaustion and hemoglobin issues, I became dependent on blood transfusions, requiring two units of blood every two weeks. I developed another condition which required me to wear an IV at home 12 hours per day to remove the excess iron from the transfusions.

While I tried my best not to miss work days as I balanced my health and my financial needs, and even signed out of the hospital at times against medical device to avoid missing a shift, I was told by my managers that “my health had become an issue.” I was devastated. I loved my job and it gave me a sense of accomplishment to help and care for other patients.

Melissa Tuff Help Hope Live

Daily life with kidney disease made it impossible to maintain full-time work

What could have been a tragedy or a failure became an opportunity for me: I was free to do the advocacy and support work that I would be most appreciated for, which would be far more rewarding than any paycheck.

I started using GoFundMe because it was what everyone seemed to be using. It was mildly successful. Then I met with the Tampa General Hospital Transplant Team and was told that I would need to raise nearly $13,000 before I would even be considered as a candidate for the kidney transplant waitlist. I knew I needed help, and that’s when I found out about Help Hope Live.

Finding Help Hope Live and working directly with a Fundraising Coordinator has been a godsend. I received more donations within the first few months of setting up a Help Hope Live campaign than I had in over a year of fundraising on my own with GoFundMe. The fact that Help Hope Live is an established and trusted nonprofit organization made working with them a no-brainer! The staff is extremely helpful, supportive and attentive when assisting with questions related to my campaign, which is not something you can say about crowdfunding sites.

Melissa Tuff Help Hope Live

Melissa “received more donations with Help Hope Live” than with GoFundMe


What are you currently fundraising for?


A lot of testing and medical clearances are required before getting approved for the transplant list. Because I only have Medicare coverage, I have to pay 20% of whatever the test or office visit costs plus the physician’s fee. My expenses add up very quickly and can be overwhelming, which is why I thank God for the ability to submit bills to Help Hope Live that I cannot pay myself.

Help Hope Live has alleviated some of my worries regarding paying for the transplant and health care leading up to surgery. Now I am working on keeping my only source of transportation running so I can get to all of my appointments and, eventually, to Tampa for transplant.


What do you think is one of the biggest misconceptions about transplantation?


People see both dialysis and transplantation as cures when really they are both forms of treatment. A transplant is not a cure for the underlying condition. This misconception may be due to the fact that many recipients go back to work, travel or start or grow families after transplant. Most of us appear to “go back to normal” after receiving a transplant. But people don’t see the post-transplant medication regimens, treatments, follow-up appointments, fear of illness and rejection, health and life insurance struggles and, of course, the medical bills, which never stop. That is why fundraising and long-term financial planning are necessary.


What is your advice for someone facing the kidney transplant waiting list?


Be aggressive regarding your health care. No one can be a better advocate for you than you. Do not be afraid to question your health care providers to make sure they are willing to work with you rather than making decisions for you. Do your own research and discuss your findings with your providers. I have personally changed providers when I have found that they were not providing me with the level of care that I deserve.

When it comes to our lives, we cannot afford to put our health in someone else’s hands without taking some responsibility ourselves. The best way to ensure that you receive quality care is to speak up. Just like the saying goes, “The squeaky wheel gets the grease.”

“Speak up,” Melissa tells transplant patients, and “do your own research”


Why is advocacy important in your life?


It is extremely positive for anyone living with an illness or life-altering injury to advocate for related causes and participate in awareness events. Not only is it educational and inspirational to those you share your experiences with, but it is also therapeutic and rewarding for you as you talk about your life with others. My volunteer work in this area is something that I look forward to and it makes me feel like there is a purpose behind my condition.

Now that I fall into the “underinsured” category myself as a patient, I realize just how unfair it is. People who need lifesaving transplants have enough to worry about without having to be concerned about how they will be able to afford to stay alive. In many cases, these people are not well enough to work full time to receive private health care coverage, but they are not sick enough to qualify for government benefits. We are the ones who are forever stuck in a cycle of medical debt and struggles to get the coverage we need for a better quality of life.

Melissa Tuff Help Hope Live

Participate in advocacy can help you to feel educated, inspired and rewarded


What does Hope mean to you?


Hope to me is more than just a word. It is a way of life. What comes to mind is, “Hold Onto Prayer Every Day” which is exactly how I keep my cheerful disposition despite what I may be going through at any time. I live with the joyous expectancy of the good to come. To me, that is what hope is all about.

I know it can be hard to remain positive when things appear to be going wrong. But we are still alive, still here to love and be loved. We are stronger than what has tried to take us down. Treatments and medical advances are being made daily, and we are very lucky for that. My favorite quote from St. Francis of Assisi helps me a lot when I am at a loss: “Start by doing what’s necessary. Then do what’s possible. Suddenly, you are doing the impossible.”


If you would like to learn more about Melissa or potentially become a living donor to change her life, find her on Facebook or at www.MelNeedsAKidney.com.

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: 5 Things We Learned While Waiting for a Transplant

Allen “Monty” Scott is living with end-stage congestive heart failure. He needs a heart-kidney transplant to live a healthy life. Monty’s wife, Nicole, and his children, Marquise and Talia, have been steadfast sources of support for their father as he’s faced medication changes, hospitalizations, rigorous physical therapy and ongoing health challenges.

You learn to take the good, the bad and the ugly on a journey like this,” wrote Nicole, “but when you wake up the next morning, it’s a brand new day!” Here, Monty and his family members explain what else they’ve learned on the road to transplant.

Monty Scott HelpHOPELive

Monty, left, with his wife and two children


Your family can be a guiding light while you are waiting for a transplant.


Monty: My family has made this journey easier because I don’t have to experience it alone.

Nicole: We have all been actively involved since his diagnosis 10 years ago. We are a strong support system for him, and our community, church and friends have all been very supportive as well. Enjoy every moment of family time, because it is truly a gift. We are tightly knit and that’s the best part.

Marquise: We give him vitality – reason and motivation to keep moving forward. We make the journey easier for him and do things for him that he might not be able to do for himself right now. In addition to the fundraising, our family and community also raise awareness for heart disease.

Monty Scott HelpHOPELive

Monty and family attended the 2016 Heart Walk to raise awareness

No matter what challenges you encounter, try to live your life the best you can to leave a good example for your kids. Be there for your kids 110% so your kids will be there for you 110%. Life is good, and it’s about choices. The choice we make about my dad’s condition is to be there with him every step of the way. My dad and I have a great relationship based on trust, love, teaching and admiration. It is awe-inspiring. It’s a relationship I would like to photocopy and build on with my own kids one day.

Monty Scott HelpHOPELive

“My family has made this journey easier because I don’t have to experience it alone.”

Talia: Whenever we go to the hospital, we always ask questions about how to care for him. We learn about his condition and the medical equipment he needs and we try to absorb it all. You need patience in order to be a father figure for someone. He is always there for us and we can joke around with each other. He always has a bright smile, and I love him. I love the overwhelming amount of strength we have for one another as a family.

Monty Scott HelpHOPELive

Monty’s family supports him during his transplant preparations


The out-of-pocket expenses will surprise you.


Nicole: During a change in our insurance, medications were running low and running out, and we ended up paying out of pocket for some of those costs. Without the meds, Monty’s health declines quickly and his levels are off, which may require an ER visit or even a trip to Tufts to fix.

Monty Scott HelpHOPELive

Home health care is among the out-of-pocket costs Monty faces daily

Talia: Our hospital at Tufts is two hours away from where we live, so in addition to fundraising for things that come up unexpectedly, we also fundraise for trips back and forth to the hospital.

Monty: I realized how expensive this journey can be when my insurance was in transition and we were responsible for those additional out-of-pocket costs. Fundraising with HelpHOPELive is fantastic! It helps to bring awareness to my condition while spreading awareness of how HelpHOPELive can help other people.


Staying positive is possible, but it’s not easy.


Monty: It is a blessing to be on the list, but if your wait is long it can weigh heavily on your mind. Stay strong mentally, because you would be surprised how much your mental state can affect your health. I try to keep it all in perspective.

Nicole: When you are actively involved but you can’t do anything to fix it, you feel helpless sometimes. Organ donation can be a difficult decision for some, so there is a limited availability of organs, making the wait long. Sometimes listed patients don’t make it through the wait. It can become depressing, but there are a lot of resources out there that can help; fundraise with HelpHOPELive! The support system around you helps to alleviate some of the burden.

Monty Scott HelpHOPELive

“Fundraise with HelpHOPELive!” advises Monty’s wife

Marquise: Dealing with a chronic health condition makes your family mature faster, especially the kids. It’s painful. I never can do enough, I feel. It’s even more challenging because it is my father’s heart, the motor of his body. After an egg is fertilized it’s only about a week until that heart starts to beat. It’s scary because you don’t know when or if you are going to get a new heart, whether or not your body will reject that heart and a multitude of other serious concerns.

Talia: You get a little impatient when waiting for a heart because waiting for an organ is not like walking into a store and just buying something off the shelf. There is pain and it hurts and you want to be able to help and you can only do so much. We all deal with the challenges in a way where it doesn’t take so much of a toll on us. You have to try to distract yourself and keep thinking about the good stuff in life.


Rallying your community can provide financial and emotional support.


Monty: Many people have supported me, whether it be through fundraising or just words of encouragement. Parents at my daughter’s school have put together fundraisers and so have my college friends. Our local newspaper kindly wrote my story and it headlined in the paper the next day, drawing awareness to my condition and HelpHOPELive. There are other efforts in progress as well so my community has most definitely shown an outpouring of support.

Monty Scott HelpHOPELive

The “Lend A Hand For A Heart” fundraiser in honor of Monty

Nicole: At first, when it came to fundraising, I thought, “I don’t want to feel as though we have our hands out.” As we advanced through the process and came across the difficulties and the constant cost of the littlest things adding up, we started thinking rationally. That rational thought is, you just cannot do this alone.

Monty Scott HelpHOPELive

Monty’s fellow high school alumni support his fundraising efforts

After putting your pride aside, you see the angels that God has put on Earth to help. They come in the form of family, friends, associates, neighbors and strangers. You just can’t see them when you are too proud to accept their help. I like the way that HelpHOPELive is managed, and it legitimizes fundraising for medical causes like Monty’s.

We fundraise in Monty’s honor and we have a small fundraising team that formed because others wanted to lend a hand. They have taken the reins and have planned fundraisers on their own to support Monty. We live in a beautiful small town where everybody knows everybody. Many have raised generations of families here in Newport (add city). Our church is supporting Monty and other churches are signing on as well. They all want to help.

Monty Scott HelpHOPELive

A “Comedy Night” fundraiser brought Monty’s community together

Marquise: HelpHOPELive simplifies the fundraising process and puts it on a level that is more understandable and that makes it easier for contributors to donate.

Talia: Fundraising with HelpHOPELive helps us to take care of things and keep things organized. It allows us to go through this journey without mounting expenses.

Monty Scott HelpHOPELive

“HelpHOPELive…allows us to go through this journey without mounting expenses.”


Transplants change lives.


Monty: To me, a transplant means an opportunity to go back to normal.

Talia: A transplant means not having to say, “Wait, Dad, do you have the extra batteries!?” Also, not having to see my dad bogged down with all this equipment connected to him so he can be more mobile on his own. It’ll be a good chance and a happy one for my dad. I want to let the donor and their family know that they are giving a gift that only they, God and the medical teams can give. Thank you for giving my dad a second chance at life.

Nicole: After transplant there will continue to be more big changes to our lives. We will find out what our new normal will be as a family, which will be one challenge. How involved we will or will not be with the donor family might be a challenge as well.  I send an entire world of thanks and gratitude to our future donor and donor family. Yours is a gift that there are no words for and thank you just doesn’t say enough. God bless you.

Monty Scott HelpHOPELive

“A transplant means an opportunity to go back to normal.”


Support Monty and his family as he waits for a lifesaving transplant at helphopelive.org. You can start a fundraiser with our nonprofit in honor of someone you know who is waiting for a transplant of any kind. Donations are tax deductible. Learn more on our website

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.  

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.

The 2016 Transplant Games In 3 Words: Joy, Inspiration, Resilience

Every year, the Transplant Games provides an opportunity for transplant recipients and donors to come together to celebrate the gift of life. This year’s Games were held in Cleveland, Ohio from Friday, June 10 to Wednesday, June 15. The Games included over 6,000 registered participants. We interviewed a few HelpHOPELive families who attended and competed in the Games. Here’s how they described the experience.

Transplant Games 2016 HelpHOPELive

Bill Soloway, 1-year post transplant, attended the Transplant Games


What made you want to attend the Transplant Games this year?


Transplant recipient Liz Casperite: I can’t remember the first time I heard about the Games, but I always knew I wanted to attend them after I received a transplant. In order to attend, you need to be at least nine months post-transplant with a doctor’s permission. The cutoff this year was October 1 and my transplant was on September 17, so we just qualified! Cleveland was my first Games, but it won’t be my last.

Liz’s living kidney donor Maria Weaver: As soon as I heard about the Games from my recipient, even before the transplant, I wanted to go! It sounded like an amazing event and a chance to keep exploring my new identity as a living donor while meeting more people in the transplant community.

Transplant Games 2016 HelpHOPELive

The Games took place in Columbus, Ohio in 2016

Transplant candidate Pat McEntee: I first heard about the Transplant Games about a year ago when I met some members of Team Ohio at an event in Columbus. I decided I would attend as either a participant or a supporter. My wife, Amy, and I went as supporters this year and just enjoyed the event, meeting people, sharing our story and listening to others’ stories. The fact that the event was in Cleveland near my transplant center, Cleveland Clinic, was an added bonus just in case I got “the call.” I hope to be able to attend AND participate in the Games in 2018.


What are some of the things you saw at the Games that made you glad you went?


Liz: My donor and I spent time watching track and field and saw some amazing athletes who brought everyone joy and inspiration. There was a woman who ran her first 100-meter dash with the aid of her cane, and a 2-year-old whose dad had to hold him back until it was time to run. These athletes made me see there is nothing I won’t be able to do with my new kidney. My donor and I participated in donor/recipient bowling. We were teamed up with a donor mom and her friend. We had so much fun being terrible bowlers.

Maria: It made me happy to see all the donor families wearing pins for their loved ones and talking about their experiences. Many were able to meet their recipients at the Games and it made me happy to hear and see their relationships. I loved seeing the smiles of the last place finishers as they plugged along the track and the crowd went wild for them! It was all about being there. It was a privilege to talk to people in the “quarter-century club” who had had their transplanted organs for 25 years or more. We heard so many stories.

Transplant Games 2016 HelpHOPELive

“We heard so many stories,” said living donor Maria Weaver

Pat: I was extremely moved by some of the stories I heard both during the Opening Ceremonies and just in talking to people I met. In watching the Games, I was impressed with the camaraderie that took place. After a hard-fought win in a close basketball game, Team Louisiana embraced members of Team Kentucky. It was nice to see people compete hard and win or lose with class.

Transplant Games 2016 HelpHOPELive

“I was impressed with the camaraderie,” said Pat McEntee


Do you think events like the Transplant Games make a difference?


Liz: The Transplant Games made a difference for me because I was able to meet recipients who have had their transplant for more than 40 years and get their advice. I was inspired to train for more events for the next Games. The community was also inspiring. We told our story to many people – Uber drivers, waiters, really anyone we met. The manager of an ice cream shop was so inspired that she volunteered for five hours at the Games the day after we met her!

Maria: I DO! I felt like I was in a protective bubble full of all of the most amazing people in the country. People who were handed crappy circumstances or fear or tragedy let it shape them into strong people full of love. The strength and grace I saw…wow! Puts things in perspective. I posted a lot of pictures and stories to Facebook and I got comments from people who said they felt the love and inspiration just from seeing them. It helped them to see this during a week in which the news was full of tragedy. I came away completely inspired to go back to the Games in 2018, meet up with the amazing people I met and became close to so fast, and do more athletic events!

Transplant Games 2016 HelpHOPELive

“I was inspired,” said transplant recipient Liz Casperite

Pat: I feel like people would come and enjoy themselves even if there was no competition at all. I think everyone realizes that the prize of additional life is already won, so what happens in the Games is inconsequential. Everyone still tries hard and competes hard for whatever reasons they choose, whether it is to honor their donor, celebrate the fact that they can participate or just to have fun.

Transplant Games 2016 HelpHOPELive

Win or lose, “the prize of additional life is already won”


Is there an emotional element to the Games for you?


Liz: The Games was a very emotional experience. The tribute to living and deceased donors was amazing. I was very touched by the stories of the donor families we met over the week. I was inspired by a mom who donated the organs of three of her murdered sons and was still positive and spreading the word about organ donation. As recipients, we are all helping to keep their loved ones alive. We made some great new friends that I can’t wait to see at the next Games.

Transplant Games 2016 HelpHOPELive

“The Games was a very emotional experience,” said Liz Casperite

Maria: I was on a high all week. I’ve never bonded so quickly with strangers. I talked to everyone I could, and hugged, and teared up, and high-fived them. It was really hard to leave, especially leaving my buddies from far away who I likely won’t see for two years. Being there with my recipient and getting to tell our story to people and walk in the 5K with her was priceless.

Pat: I was surprised at how emotional the event was. Even at times when I didn’t expect it, I found myself tearing up. The emotions of joy and laughter were also present throughout the days we spent there.

Transplant Games 2016 HelpHOPELive

Pat and wife Amy experienced a range of intense emotions


How would you sum up the experience in 3 words?


Liz: Inspiring. Fun. Heartbreaking.

Maria: Love. Resilience. Celebration.

Pat: Joy. Camaraderie. Compassion.

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What did the Transplant Games mean to you this year?


About The Transplant Games


The Transplant Games is open to athletes with any level of skill with games ranging from cornhole and basketball to track events and swimming. The Games welcomes first-time participants and veterans of all ages, like 4-year-old kidney transplant recipient Cooper, who finished the 23-meter dash grinning. The Games includes donors and recipients from all 50 states as well as multiple countries. There are 21 medal competitions in total and all are free and open to the public.

Transplant Games 2016 HelpHOPELive

The Transplant Games are open to donors and recipients of all ages

Did you participate in the Games this year? How was the experience? Tell us about it on Facebook.

Voices of Hope: “There Is Always Someone To Lean On”

Husband and father Martin Vece has served the community for decades as a performer and teacher. We asked Marty how his wife and three daughters help him to cope with the emotional, physical and financial challenges of life on the transplant waiting list.

Martin Vece HelpHOPELive heart transplant

Marty with his family at UCLA


In November of 2014, I was informed by my doctors at UCLA that I would need a heart transplant. Because of an impending lung issue, I would first have to go through open heart surgery for an LVAD. In December of 2014, I had to immediately relocate my entire family from Las Vegas to Los Angeles as I recovered from the procedure. I knew in that moment that we were in some incredibly deep financial trouble.

I had to remain in Los Angeles for a minimum of sixth months after the LVAD surgery. My doctors required me to have a caretaker for that entire period. We asked several members of our family to stay with me in LA, but everyone we asked was not able to do it. There was no choice but for my wife and kids to come with me.

Martin Vece HelpHOPELive heart transplant

Marty begins walking after the LVAD surgery

When I was in the hospital getting the LVAD surgery, it was my wife who, over a period of three days, packed up all our things, rented a U-Haul truck, found housing for us in LA, took our girls out of school and registered them in LA, and found people to help her move everything we needed into an apartment. She truly was Superwoman. We were finally able to move back to Las Vegas in June of 2015.

Because Las Vegas does not have its own transplant facility, when I get ‘the call’ for a heart transplant, I will have to go on a leave of absence from work and relocate to Los Angeles again to be near UCLA for roughly six months while I recover from the surgery. I am currently fundraising to cover my medical and related expenses, including uninsured doctor’s bills and medication costs that come in monthly. With HelpHOPELive fundraising helping me to pay for medical and related costs, it frees up money to help with general bills and cost-of-living expenses so I can take care of my wife and family.

Martin Vece HelpHOPELive heart transplant

An update on Marty’s HelpHOPELive page explains financial burdens

Chronic health issues have created multiple challenges for me and my family. The stress has been ridiculous as I cope with my health issues and my wife tries to raise three young girls and support me at the same time. The financial stress of my illness has been significant. It’s continuous, because even after the transplant my uninsured medical expenses will continue to stack up. I will have to continue to fundraise for my entire life.

With a little bit of my energy and time, I coordinate all of my fundraising activities on my own. My wife is busy taking care of the girls, taking care of me and running the household. It can be surprising when extended family members and friends don’t step up to help with fundraising. Since my heart issues have taken a turn for the worse, I have learned a lot about who in your life really sticks by you through the tough times and who abandons you.

HelpHOPELive has been a godsend. Before I started working with HelpHOPELive, I didn’t have a clue about how to conduct grassroots fundraising. I have become educated very quickly with the guidance I have received from HelpHOPELive. It really helps that the organization allows me to fundraise through a 501(c)(3). It gives your illness some credibility: HelpHOPELive verifies medical need, and I think people feel a little safer donating money with assurance that the cause is legitimate.

Martin Vece HelpHOPELive heart transplant

HelpHOPELive lends credibility to Marty’s fundraising efforts

I find it to be a great challenge to remain positive while on the transplant waiting list. For some of us, it is a really long wait, and it becomes challenging when you are dealing with medical issues day in and day out. I honestly don’t know where I would be without my family. They keep me grounded and focused on living for each and every day. But it has not been easy. I seem to weave in and out of periodic states of depression. During those times, I just keep saying to myself that I’m lucky to be alive. Without modern technology, I would have been gone a long time ago. I try to look at what I have and what I am grateful for, not what I’m missing. Positive thinking is crucial to get you through those dark periods.

My family members, close friends and co-workers provide a strong emotional support system for me. My relationship with my wife and three daughters is incredible. They have played a tremendous role in my health journey in that they have been there with me every step of the way. I don’t know if I could get through each day dealing with all of my medical issues without them at my side.

My two oldest daughters are nine and eight years old, and they understand my medical condition and limitations very well. They help me with little things like bending over and picking things up for me, helping me carry things, or getting something for me because I’m out of breath. These little acts of assistance help me physically get through each day. My girls are great because they know that I can’t play soccer with them, roughhouse, or do anything else on that physical level, so instead, we take advantage of other ways to spend quality time together. We do homework together, play board games, watch TV and go for slow walks together.

Martin Vece HelpHOPELive heart transplant

Marty’s wife and daughters are a strong source of support

The best part about my family is our love for each other. We all support one another. No matter what is going on, there is always someone to lean on. My advice to a new father is, don’t think you can be selfish. To be a good father, you have to be willing to make sacrifices for your children. When I was little, my mother used to say, “I go without so you can have [what you need]. I would take the food out of my own mouth to put it in yours.” My mother had a great impact on me and now that I am a father, I truly understand what she meant.

After transplant, I look forward to getting out of the house. I want to run and run and run and run. I can’t wait to do physical activities again. I want to play sports and do musical theater and chase my kids around for hours. I want to go into the ocean and splash around with my family. I want to take dance classes with my girls. My girls and my family are my world. It’s hard to imagine, now, that I had a life before they arrived.

Martin Vece HelpHOPELive heart transplant

Marty wants to run, play sports and chase his kids around after transplant


Learn more about Marty and his family or donate in his honor at helphopelive.org. Help us celebrate strong fathers this month! Do you know a father who is living with a challenging chronic health condition? Submit his name to HelpHOPELive and he could be featured in our next Blog post!