Tag Archives: Caregiver

Feeling “Blessed,” Raising Thousands, and Finding Hope: Our Clients in the News

Just a few months into 2017, Help Hope Live clients are getting their stories featured in news outlets across the nation. Here are three standout stories of hope.


Rachelle Ledbetter: Community Responds to Rare Diagnosis with Resounding Strength


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In 1968, Rachelle Ledbetter was the first child to be diagnosed with allergic bronchopulmonary aspergillosis (ABPA), a chronic condition characterized by an exaggerated response of the immune system to the fungus Aspergillus. By adulthood, her hypersensitivity to environmental allergens had developed into a secondary infection that would necessitate a double lung transplant.

Rachelle is the former owner of the Sequoia Sentinel weekly newspaper. Out of respect for her editorial legacy, the Kawaeah Commonwealth, a more recent incarnation of the Sentinel, published in-depth coverage of Rachelle’s medical journey, her “upbeat and positive” outlook, and her plans for a community-driven Help Hope Live fundraiser.

We learned in March that the Spaghetti Feed raised a whopping $8,880 for the Help Hope Live Southwest Lung Transplant Fund in honor of Rachelle. “Apparently, the food ran out after serving 300 meals,” Rachelle wrote in an update on her Help Hope Live campaign page, “and yet you kept coming!” (Rachelle’s Lifetime ‘Journey to New Lungs’)


Michael Thor: Returning Home and Rekindling Hope After a Life-Changing Injury


Michael Thor Help Hope Live

Michael Thor with his wife and caregiver

In November 2015, Michael Thor was hit by a car while riding his motorcycle. He sustained a C2 spinal cord injury. At the time, he was in the process of pursuing one of his lifelong dreams: opening a restaurant with a good friend. The accident put Michael’s restaurant plans and the rest of his passions on hold as he and his family adjusted to his new life with quadriplegia.

After a year and a half of out-of-state intensive therapy, and just a few months after its grand opening, Michael was finally able to return home to see his restaurant in action. Tears filled his eyes as he witnessed how his business partner and staff members had come together to turn their shared vision into reality. “I could not be more proud,” said Michael.

A fundraiser held at Michael’s restaurant kicked off fundraising efforts for the Help Hope Live Southeast Spinal Cord Injury Fund to support ongoing rehabilitation. “I can tell that Mike has been rejuvenated,” wife and caregiver, Sarah, said in an update. “It was a really big morale boost for him to get back home. We were able to raise around $6,000. We truly can’t thank you enough.” (Restaurant Holds Fundraiser for Paralyzed Raleigh Chef)


Kimberly Grossman: Feeling “Blessed” as Faith Community Steps Up to Help


Kimberly Grossman Help Hope Live

Kimberly Grossman with her twins

Though she’s fighting chronic kidney disease, Kimberly Grossman considers herself blessed. Kimberly was diagnosed with end-stage renal disease in her twenties based on symptoms that had been following her around since she was just three months old. Kimberly’s strong connection to a faith-based community in her area provided the starting point for her fundraising campaign.

A spaghetti dinner fundraiser for the Help Hope Live South-Central Kidney Transplant Fund became an emotional lifeline as Kimberly met with friends and neighbors who showed that they cared about her. She and her 5-year-old twins are lifetime church members. “We wanted to do what Jesus tells us to do and help as much as we could,” explained Kimberly’s pastor.

Kimberly “fought back tears” as she reflected on her gratitude for community support. She advised others facing a transplant to “find as many ways as possible to fundraise. There are lots of people wanting to help.” (Spaghetti Dinner Fundraising for Woman in Need of Kidney Transplant)


Want your campaign to get featured in the news, too? Reach out to your Fundraising Coordinator today to receive media outreach support. 

Caring for Caregivers: Unsung Heroes of Health Care

We are proud to assist family caregivers during National Family Caregivers Month and throughout the year by helping individuals facing a medical crisis fundraise for their out-of-pocket costs, including caregiving expenses. This post from our friends at the Mesothelioma Cancer Alliance highlights how caregivers can care for themselves, too.


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November marked National Family Caregivers Month, a time to celebrate the silent givers behind those who need care. It is a month to show support for the tireless work caregivers put in for their loved ones. This year, President Obama released a presidential proclamation stating, “During National Family Caregivers Month, we reaffirm our support for those who give of themselves to be there for their family, friends, and neighbors in challenging times…” Caregivers are often the unsung heroes of home health care, so during the month of November and all year round, we raise awareness for these caring individuals and the issues and hardships they face.. It is a time to celebrate the selfless work caregivers do and provide our support.

Twenty-three percent of family caregivers who have been caring for their loved ones for five or more years report that their current health is fair or poor. More than 65 million people, or about 29% of the United States population, provide care for someone who is aging, chronically ill or living with a disability. They are spending an average of 20 hours every single week caring for their loved one. There is little wiggle room for “sick time,” vacations, or paid time off. Caregivers are often bound to a schedule that they must adhere to for the sake of somebody else’s health.

This information has inspired the Caregiver Action Network 2016 National Family Caregivers Month slogan, “Take care to give care.” It signifies that before you can take care of someone else, you must first take care of yourself. To better care for yourself as a caregiver, you can follow some of the tips provided by the Mesothelioma Cancer Alliance:


Do what you love.


Don’t neglect your own personal life to care for somebody else. Maintain relationships with friends and family. Set time aside to do activities that you enjoy! Even if you must schedule time on your calendar, it’s important to take time for yourself. It’s particularly helpful to take time doing activities that you like and ones that help you relax! Everyone needs a mental and physical break now and then.


Be heard.


Cameron Von St. James, caregiver to his wife, Heather, who is a 10-year mesothelioma survivor (click here to learn more about mesothelioma), offers these insights: if you know a caregiver, offer him or her your ear – someone to talk to. Caregiving can be stressful, so having someone to talk to helps. It helps caregivers to feel socially connected and reminds the caregiver that there are people who care about them.


Know your limits. 


Always remember that there are limits to what you can do as a caregiver. Set realistic limits for yourself and communicate those to your support system. Don’t be afraid to reach out to those around you for help and support.


Focus on your health and well-being. 


Get plenty of sleep, maintain a well-balanced diet and be sure to get exercise. Your health is crucial. It won’t be possible to care for your loved one to the best of your ability if your health and well-being are suffering. Be sure to visit your doctor regularly for checkups, and schedule an appointment if you are sick.


This guest post was provided by the Mesothelioma Cancer Alliance to support caregivers across the country. Want additional information on what it means to be a caregiver? Check out our archived Blog posts.

How I Cope with My Wife’s Stroke and My Son’s Spinal Cord Injury

At age 27, Sean McGonagle was attacked in a shocking act of violence at a bar just two days before Christmas. Shot in the leg and chest, Sean became paralyzed from the chest down. Two years after injury, Sean underwent surgery to remove an abscess on his spinal cord where the bullet had been lodged.

Just four days after his surgery, his mother, Kass, had a stroke that left her with limited mobility and communication skills. Sean and Kass stayed in the same hospital during recovery and pursued rehabilitation at Magee together.

Kass McGonagle Sean McGonagle HelpHOPELive spinal cord injury stroke boat Spirit Philadelphia

Kass and Sean stayed in the same hospital during their recovery.

Father and husband Dennis McGonagle helped to initiate fundraising campaigns with HelpHOPELive to support both Sean and Kass. Dennis explains how his family is living with the lifelong impact of spinal cord injury and stroke.


How is your relationship with your family? 


My relationship with my family is very strong. I retired early so I could be a caregiver for my wife and son, and I have three daughters and three grandchildren that I spend time with. It is very important to all of us to stay close and help each other.

Kass McGonagle Sean McGonagle HelpHOPELive

Dennis, center, retired so he could care for his wife, left, and son.


Why is fundraising important to you?  


Managing health is a minute-to-minute task. We have therapy three times a week, doctors’ appointments and daily care and companionship needs. As a quadriplegic, Sean suffers from a lot of pain and discomfort. Things will not get easier for him as time goes on; as a matter of fact, they will get progressively worse.

Kass McGonagle Sean McGonagle HelpHOPELive

Sean with Joanne from Magee Rehabilitation Hospital

He tries to keep a positive attitude and holds onto the thought that there may be some life-changing medical advancements in his future.

Kass McGonagle Sean McGonagle HelpHOPELive Magee Rehab physical therapy spinal cord injury

Therapy helps Sean cut down on “pain and discomfort” after injury.

For Sean, our last fundraiser was to help him purchase a new wheelchair. We have a long way to go, but the new chair will enable him to stand upright and increase his blood flow. In the long run, it will keep him from getting pressure sores and improve his overall health.

Sean McGonagle fundraising HelpHOPELive comedy hypnosis

Sean fundraises for a new wheelchair and other post-injury costs.

It has been almost three years since Kass’ stroke, and she is dealing with memory loss, speech problems and paralysis on her left side. She is reliant on a wheelchair for mobility support. Kass needs a stair lift to get up and down the staircase safely. We also need to make some modifications to her bathroom to make it safer and more accessible.

Kass McGonagle HelpHOPELive stroke

Kass fundraises with HelpHOPELive for home modifications, mobility needs and more.


How do you feel about fundraising with HelpHOPELive?


We have been in contact with the nonprofit since 2011. HelpHOPELive is a great nonprofit organization. From digital guidance and customized flyers to general understanding, HelpHOPELive has shown us the path to achieve our fundraising goals. We are also glad to have an avenue to allow our community to understand and support our fundraising goals and events.

Wheelchair van Sean McGonagle

“Picking up my new van! This never would have happened without your donations!”


Is it challenging to support a loved one as a caregiver while being a father?


Being a father and a caregiver is always a challenge, and in my case, I am helping to support both my wife and my son. They have similar needs and yet a lot of different individual needs as well. You can’t be in two places at one time, but somehow we have managed so far. Who better than a husband and father to take care of them? The best part about being a dad is the love of your children. A child is a gift and you get an opportunity to watch kids grow into young adults. My children are also my friends, which is very important to a healthy and honest family relationship.

Kass McGonagle Sean McGonagle HelpHOPELive spinal cord injury stroke boat Spirit Philadelphia

Dennis says his family “is more important than any material things.”

Remember that your family is more important than any material things. Remember to always look after and cherish your children. You never know when they will need you the most.


Learn more about Dennis, Kass and Sean at helphopelive.org. Do you know a family struggling to cover the out-of-pocket expenses associated with a catastrophic injury or illness? Learn how we can help with a tax-deductible fundraising campaign and one-on-one support.

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.  

Five Myths About Caregiving

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

caregiving

“Almost every single task is now done by me”

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

single parent

“Many times I feel like a single parent”

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


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


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

caregiver

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


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


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

job stress

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


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


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

help

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

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


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


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

happy

Are caregivers allowed to express their frustrations and difficulties?

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


Myth 5: Caregiving is a thankless job.


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

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

Braden Richards HelpHOPELive

Beth is the wife and caregiver of HelpHOPELive client Braden Richards


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

These Families Were Touched By Transplant

April is Donate Life Month, an opportunity to recognize and celebrate how organ donors and transplants have made a difference for families facing a medical crisis. Since April 2015, 167 HelpHOPELive clients have received life-altering transplants. Here are just a few of their stories.

touched by transplant full


A Transplant Can Change Your Life…


Terry, one month post-transplant: “To watch a man, a Marine Corps veteran, who has been robust and active all his life, become tired and sick and age overnight due to failing kidneys was torture for those who know and love him. Now, however, to watch that same man laugh and smile again less than 12 hours after receiving the amazing gift of renewed life through his daughter’s donated kidney is beyond words.”

Terry Cobb HelpHOPELive

Terry with his faithful friend


Deanna, two years post-transplant: “Deanna celebrated two years post liver transplant this past Saturday. Every day I look at her and think, “Wow, little girl, you are a miracle.”

Deanna3

Deanna proudly represents the gift of life


Emily, one month post-transplant: “Multiple family members, church friends and former classmates called to be tested for Emily, but her donor ended up being a near stranger–someone she had only worked with for a month when the donor discovered Emily’s need and said it was always a dream to donate a kidney. The two are no longer strangers!”

Emily Roush HelpHOPELive

Emily with her “reasons to live!”


Rick, seven months post-transplant: “I’ve got a new lease on life now. I can look forward to seeing my family and my grandkids again. I have realized that I can do this and I see the light at the end of the tunnel…there’s a lot more hope than there used to be.”

Rick1

Rick’s gift of life


Rachelle, 10 months post-transplant: “Today was my last day of chemo! Wednesday I celebrate my new stem cell birthday!!! Thanks for helping us get our life back!


Dudley: “I had a successful kidney transplant on March 3,2016. I could not have done it without your support and generous donations. I hope to…return to life with my new kidney, which has given me a new lease on life.”

Dudley Edmondson HelpHOPELive

Dudley (left) with his donor


Amy, one year post-transplant: “I feel outstanding! No longer need supplemental oxygen or a wheelchair! I am getting my life back!! Thank you all so much from the bottom of my heart!!! Every breath is a gift.

Amy E Burriss HelpHOPELive

Amy received “a perfect new set of lungs!”


…But A Transplant Can Also Be Financially Devastating


A transplant is not a fix-all solution. Life post-transplant may include unexpected out-of-pocket expenses and additional medical and financial concerns:

cost of transplant

Transplants come with a lifetime of expenses

“My employer’s leave of absence gives me…12 weeks [but] I am due to be out for three months. It looks like I will be out for 6 weeks unpaid.

“It’s been over 3 months and she’s just now NOT feeling awful. Now her function and counts are improving so we again have hope she will have some normalcy soon.”

“I am still unable to work and expect to be in financial dire straits for the next year.”

We were not prepared for the post-transplant care expenses. That has taken a financial toll on our family. Some things you have to take into account are lodging, rent or mortgage payments while you relocate, meals, gas, airfare, and lab and biopsy expenses, which are ongoing, frequent and costly.”

“Thirty-six months after my transplant date, Medicare will terminate my coverage and I will be fully responsible for all transplant-related medical expenses for the rest of my life. The expensive anti-rejection medications that I have to take for my lifetime are out-of-pocket expenses that will cost be hundreds or thousands every month.”


Fundraising Can Make A Difference!


touched by transplant fullA transplant is not the end of the journey. After a transplant, families may face a lifelong list of out-of-pocket medical expenses. That’s why HelpHOPElive is here to help transplant recipients and their families fundraise for a lifetime of transplant-related expenses, from immunosuppressant medications to follow-up medical visits and emergency care.

This video highlights how fundraising with HelpHOPELive can impact an individual’s life before, during and after a transplant. Visit helphopelive.org today to start or re-ignite a transplant fundraising campaign.

Mending A Broken Heart: Love And Transplantation

Rick Brittell was diagnosed with congestive heart failure in 2011. In April 2014, Rick and his wife, Susie, moved from their home in Boise, Idaho to a trailer in Salt Lake City, Utah for 2 ½ months so that Rick could receive a left ventricular assist device (LVAD) as a bridge to a heart transplant—his only option for a healthy life. Rick and Susie returned home to Boise but left their home once again in April 2015 to move into a Salt Lake City apartment. Rick received his transplant in September 2015. Rick and Susie will finally be able to return home in March 2016 after a full year spent away from home. They have been fundraising with HelpHOPELive since January 2015.

Rick and Susie Brittell HelpHOPELive

Rick and Susie Brittell.


Why did you make the decision to wait before getting Rick listed for a transplant?


Rick: I could have been listed for transplant right after I received the LVAD but I chose to wait until April 2015 when my Medicare took effect. Had I proceeded right away with being listed, the procedure would have been covered but not the post-transplant medications, leaving me to cover $7,000 to $14,000 out-of-pocket each month. Once Medicare took effect, the surgery and the medications were both covered and the post-transplant monthly medication costs dropped to $400 to $600 per month.

Once listed, multiple factors influence how long a candidate waits for a transplant, including the candidate’s health and the number of organs available in a particular region. According to the United Network for Organ Sharing, “you may receive an organ that day, or you may wait many years.”

LVAD heart transplant

Rick lived with an LVAD until his transplant.


How did you feel when you found out you would have to relocate?


Rick: It was a shocker. When we skyped with our 3-year-old grandson, he would ask, ‘Why did you leave me?’ I couldn’t even talk to him because it tore me up. We were suddenly cut off from our family and friends and we had to make a whole new life for ourselves.

Transplant candidates must be able to leave home and come to a specific medical facility as soon as they receive word from their medical team that an organ is available. That’s why some candidates are asked to relocate close to that medical facility while they wait for “the call.”


How has the waiting process affected you emotionally?


Rick: I couldn’t drive for 2 years after I got the LVAD. I became completely dependent on my wife to take me everywhere for everything from a medical appointment to a simple trip to the store. After 40 years of employment, I had to stop working cold turkey. I had to deal with feelings of guilt and worthlessness associated with that. My freedoms were being taken away.

Susie: It was a sobering experience to discover who our true friends were and how our family would support us. We had to learn to do it on our own and figure out how to make it work with little support.

Rick: It’s stressful, but we have chosen not to hold onto animosity. But now when I tell someone, ‘I’ll be there for you,’ I take it very seriously.

The average wait time to receive a heart transplant is six months to one year. A transplant candidate can be removed from the waiting list if his or her health significantly improves or deteriorates.

 

Pie Night HelpHOPELive fundraiser

Support groups helped Rick and Susie find solace and community.


What advice would you give to another family waiting for a transplant?


Rick: Talk to someone who has gone through it. Learn about the procedure, the medications you’ll be taking and the side effects, and prepare for them. Don’t think that life will be perfect after the transplant. My body was torn up for weeks as I adjusted to the medication, and I pushed people away from me and felt mentally foggy. When you get that call, you will go from sky-high feeling lucky to get a heart to rock-bottom feeling guilty, sad or angry that someone had to pass away for you to get the transplant. You will swing back and forth, but you WILL level out again.

Rick Brittell heart transplant

Rick after his lifesaving transplant.

Susie: Do not think that you can shoulder the burden alone. As a caregiver, be patient and know that the person you love might get belligerent, angry or moody, but that is not the same person you love. The person you love will be back after a while. Find someone to unload onto so you don’t take out your frustrations on your loved one.

72 percent of American adults experience financial stress at least some of the time, and 26 percent experience financial stress most or all of the time. Start fundraising for a transplant as soon as possible to reduce the amount of financial stress you’ll have to deal with as you prepare for transplant.


What is life like after transplant?


Susie: I’m just so glad the waiting part is over. We are different people from when we first left for Salt Lake City. It has made us less self-absorbed and has opened our eyes to how narrow-minded you can become.

Rick: Hot dog, I’ve got a new lease on life now. I can look forward to seeing my family and my grandkids again. Before the LVAD, I could walk about 50 feet per day on oxygen before I was exhausted. Now I can walk 2 to 3 miles. I have realized that I can do this, and I see the light at the end of the tunnel. The journey is not over but there’s a lot more hope than there used to be.


Rick and Susie continue to fundraise with HelpHOPELive for post-transplant expenses including relocation, medical appointment co-pays and a lifetime of immunosuppressants.