Tag Archives: stem cell

These Families Were Touched By Transplant

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

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A Transplant Can Change Your Life…

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

Terry Cobb HelpHOPELive

Terry with his faithful friend

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


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.”


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.

Voices of Hope: Living Well With A Chronic Illness

Anna Crum was in junior high school when she began to experience persistent double vision and sixth cranial nerve palsy in her left eye. An MRI revealed that Anna was fighting relapsing and remitting multiple sclerosis (RRMS). Anna explains how she holds onto hope while fighting the debilitating mental and physical effects of RRMS.

Anna Crum MS HelpHOPELive

Anna Crum is living with multiple sclerosis.

How do your RRMS symptoms disrupt your daily life?

Shortly after the diagnosis, I became legally blind and had to learn to read Braille and rely on a cane for mobility. My current list of symptoms has grown to include a different diplopia (double vision) in each eye, color discrepancy, contrast loss, nerve pain on the left side of my face, muscle weakness in my left leg, short-term memory difficulties, fatigue, bowel and bladder dysfunction, and the occasional slurred speech. Without special lenses, I would not be able to read or drive.

My symptoms are unpredictable. On a given day, there is a long list of things that can go wrong. But you try to plan and compensate as best you can to hopefully manage some of the more severe symptoms to prevent them from hindering your daily life.

What has been the most difficult part of your struggle with RRMS?

MS finds a way to keep chipping away at your independence. In my case, it took everything I had to make it through college. Despite my success, I am now living back at home, unable to work full time and leaning on family for support. MS forces you to reach out. Admitting you need help and accepting it can be very difficult, especially if you are naturally an introverted person who is goal-driven and independent.

Why do you think people with MS sometimes hide their illness from the world?

You encounter enough people who don’t understand and eventually you learn to blend in. I have many times described myself as an illusionist and I am sure other people living with chronic illnesses can relate. People don’t see the preparation or the aftermath.

Everything in my life has become so calculated. I plan how much walking I will need to do in a day, how many hours of energy I have, how much my eyes can handle or how much pain I can tolerate ahead of time. Everything is staged. Seldom do I let people see the daily struggle [and] the days where I can’t even get out of bed.

Do you have a resolution for 2016?

This year, I am focusing on transparency, community and relationships. The National MS Society has a saying: “Multiple sclerosis destroys connections inside us. It disconnects the mind from the body and people from each other.” Too often, people with a chronic illness suffer in silence. When I was first diagnosed, I started advocating for awareness. It was a passion of mine. But eventually I lost the energy. All the energy I had focused on just surviving. Eventually I chose silence for security and traded my voice for a disguise in an attempt to mask my disease.

This year, I want to use my voice again; I want to make an impact. Hopefully my journey will help inspire someone else to keep pushing through. Too often those suffering wait until it’s dire before they reach out for help. Keeping the disease invisible gives it that much more power and it confines you. I want to inspire someone, somewhere, to not give up.

Why do you plan to embrace your MS this year?

At times it feels like a door slams in your face everywhere you turn, but you keep going, one step at a time. Eventually, MS gave me a new path. Because of my disease, I found a passion and hopefully an eventual career as a dietitian. I want to help others manage their symptoms as best as possible, improve their quality of life, and help them learn to thrive despite an illness. Nutrition isn’t a cure, but it can make a huge impact.

Anna Crum HelpHOPELive nutrition

Anna plans to help people with MS manage their nutrition.

What advice can you give to someone newly diagnosed with MS?

Make your health your number one priority. I paid dearly for the instances where my priority became school or some other goal where I pushed myself too hard. Don’t push yourself to go at anyone else’s pace or to meet anyone else’s expectations.

Focusing on what you stand to lose or have lost is too overwhelming. Instead, focus on what your disease adds to your life. This disease builds character, teaches resourcefulness, ingenuity, adaptability, resilience, and gives you a unique perspective. You are stronger than you know, and maybe you can inspire someone with your unique story to find their own strength. Focus on what keeps you hopeful, and hold onto your tenacity.

What does hope mean to you?

To me, hope encompasses endless possibilities. There are always new ways to adapt, a new perspective to discover, new lessons to learn, new relationships to form. There is ALWAYS a reason to keep persevering.

Anna is currently studying to become a registered dietitian and is working on a photography project on the invisible symptoms of MS. She is fundraising with HelpHOPELive for a stem cell transplant that could improve her life with RRMS.

How A Marine and Father of Three Fights Multiple Sclerosis

Michael Carns is a Marine and National Guard member and a single father with three children. He was diagnosed with multiple sclerosis in 2013. He experienced rapid physical deterioration. Within two years, he has gone from independence to relying on a cane, a walker and finally a scooter to get around. Mike is fundraising for HSCT (hematopoietic stem cell transplantation), a course of treatment that is not covered by insurance. We spoke to Mike about the daily struggles, setbacks and victories that define his life with MS.

MS multiple sclerosis Michael Carns Mike Carns Marine National Guard

Mike is fundraising for treatment for multiple sclerosis.

How much did you know about MS before you were diagnosed?

I had never been personally affected by MS and neither had anyone in my family. Since my diagnosis, I’ve learned that parents of friends and some of my own friends growing up had or have MS. I share the information I find with them and they do the same for me. To defeat this disease, you need to fully understand it.

Where do you find MS information?

I typically find MS information online. I am a member of several different MS groups on social media, many that specifically relate to HSCT treatment for MS. I have been able to connect with doctors, researchers and others with MS through social media. We share a common enemy, so it makes sense for us to talk to each other about it.

Does MS disrupt your daily life?

My days are very limited. The first hurdle I face is memory: when I wake up, will I even remember what I need to get done that day? Most days, I get out of bed, watch TV, play games with my children, make meals for them and go back to bed. With MS, you learn how to manage your time carefully. I plan ONE thing to check off my list per day – anything else is a bonus. By the end of the day, even though I feel exhausted and worn out, I’ve exerted virtually no physical energy.

Has your diagnosis affected your family?

My youngest son wants to be a Navy SEAL. My daughter wants to work in the music industry, and she would love for me to walk her down the aisle. My eldest plays football and is going into high school this year. He wants to play for the NFL one day, of course, and join the Marines once he’s graduated from college. I used to coach him in football when he was younger, but today, I can’t get to his games without my scooter and I can’t stand the heat long enough to go and see him practice.

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Mike with his girlfriend Kelly and son Mikey.

It’s disheartening. I want my kids to have the childhood that I got to have. I didn’t have to worry about Mom or Dad, but they have to spend their time thinking, ‘Is Dad okay? Do I need to do laundry or dishes for him?’ My kids understand that I have new limitations now. I want them to be able to be kids again. I feel like I’m taking time and life away from them as I’m battling this disease. I want to be there for my family again.

How has MS affected your financial situation?

The cost of potential treatment options emerged immediately as a barrier when I began researching. If the HSCT treatment is successful, the hope is that I won’t need more treatment in the future, so this is one big cost that needs to be overcome as quickly as possible. I spend a lot of my time each day trying to fundraise successfully so my father doesn’t have to give up his house to get me treatment. Even small bills can be difficult to keep up with as so other daily expenses add up. I’ve had to cut down my food bill and make other sacrifices to keep up with expenses.

Michael Carns marine uniform service veteran

Mike in uniform.

Will reaching your fundraising goal and pursuing treatment change your life?

I think a lot of stress will be taken off. We will all be able to live with what I can and can’t do definitively. I’d be able to return to work and be a part of society, making money instead of just receiving it to get by every month. I’ll be able to do simple things like answering phones and take care of household activities without pain or exhaustion.

Michael Carns Mike Carns Marine National Guard veteran

Mike served as a Marine and National Guard member.

It would be wonderful to experience my body healing itself. I want to be able to enjoy watching my kids grow up. Anyone who has or had MS knows that feeling – it’s awful to feel that loss of independence. I want to be able to be active and independent again. Even if I can stay where I am now, I can learn to live with it. I just hate feeling like things are getting worse.

Ideally I’d like to get back to coaching sports and go to school to choose a new career path. I’ve always wanted to be a chef, and there are so many other paths that attract me, including teaching. Right now, I can’t make plans for the future — there’s no roadmap with MS. As a society, our technology has come so far – we need to come up with a way to provide effective MS treatment to the people who need it. I don’t want to slow down or manage MS – I want to beat it.

What keeps you positive while you battle MS symptoms?

My perspective is that if it wasn’t me diagnosed, it would have been someone else. With everything I have gone through and done in my life, including fighting in three wars and living an active and adventurous life, I’m still here. Maybe I have this condition because someone else would not have been able to handle it or would have caused harm to themselves or their families because of it. That train of thought keeps me focused.

USMC United States Marine Corps Marines Michael Carns Mike Carns veteran MS multiple sclerosis

Mike served as a United States Marine.

Humor is important, too – you learn to laugh at yourself when you can’t button a button or you slide off the bed as you’re leaning on it for support. If you can’t laugh and continue to live your life, MS will get the best of you.

It’s amazing that it takes a diagnosis or a negative event like this to change your outlook. When you start to lose abilities and time, you look back and think, I took it all for granted. You become a lot more empathetic – now, when I see someone in a handicapped spot who doesn’t look disabled, I understand that their battle might be on the inside.

What piece of advice would you give to someone who was just diagnosed with MS?

Connect with other people who share this condition. Connect with me! Find reliable resources online. Start looking around, and if you have questions, ask them all. Make your own decisions about management and treatment based on the information you find. You are the best advocate you’ll ever have. Doctors, friends and family members can support you, but it’s important to take this process into your own hands. Reach out – don’t ever be afraid to ask for help or advice.

Visit https://helphopelive.org/campaign/6491 to follow his journey or donate to HelpHOPELive in his honor. HelpHOPELive does not endorse any specific treatment facilities or courses of treatment.