Tag Archives: intestine transplant

HelpHOPELive Clients In The News March 2016

Spring is a season of hope, renewal and rebirth. For these three clients, spring represents a chance to enjoy a healthier, happier future with help from community fundraising.


Scott Truran: Veteran Sets Sights On Treatment For Debilitating MS


Thirty-nine-year-old Scott Truran was diagnosed with a progressive form of multiple sclerosis in 2011. Before the diagnosis, the former Marine was very active and prioritized staying in shape. Today, he has to rely on a cane to walk and his right side feels like it’s been “dipped in concrete,” he explained.

Scott Truran HelpHOPELive veteran MS

Scott will continue to lose mobility as his MS progresses

Scott will continue to lose mobility as his MS progresses. It’s likely he will eventually need a wheelchair to get around. Scott and his family learned about a treatment option for MS that may help to limit Scott’s mobility losses. The treatment involves wiping out his immune system with low-dose chemotherapy, then using stem cells, previously harvested from his blood, to rebuild a new immune system. This treatment option is only available as a clinical trial in the United States. Scott and his family will need to raise $80,000 to receive the treatment in Mexico as well as additional funds to offset the out-of-pocket costs of travel and temporary relocation for Scott and a caregiver.

Scott Truran HelpHOPELive veteran MS

Scott is appealing to his community for support for his treatment goals

“The money is the biggest obstacle,” Scott explained, “but it’s a small price to pay for a chance to slow [the] disease or stop it entirely.” Scott will fundraise with HelpHOPELive to maximize his chances of securing the funds he needs to potentially halt or reverse the progression of his MS. (Veteran’s family asking for help with progressive form of multiple sclerosis)


Theo St. Francis: Young Man With Spinal Cord Injury Plans “His Comeback”


In 2013 while taking part in a pre-orientation at MIT, Theo broke his C6 vertebra in a diving accident. Theo became paralyzed from the chest down with some shoulder and arm movement and limited finger dexterity. Doctors told Theo he would likely never walk again.

Theo St. Francis HelpHOPELive

“I am done managing. I am overcoming.”

As the Sonoma Index-Tribune reported, Theo “set his brilliant mind toward devising a plan for his comeback.” In December 2015, Theo reached a major milestone when he was able to sit on a barstool during a celebration with friends. He tries to spend time away from his manual wheelchair, pursuing activities that “align with what my goals are,” from driving an adaptive car to biking, skiing, surfing, kayaking and traveling.

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Fundraising with HelpHOPELive is allowing Theo to pursue the intensive spinal cord injury therapies he credits with helping him improve his mobility over time. Theo emphasizes the word “recovery” and spends his days looking forward. “I put the impossible in quotes,” he explained. “I am done managing. I am overcoming.” (Theo St. Francis overcoming odds to regain mobility)


Michael Mahan: Community Supports Man Facing Intestine Transplant


In 2012, what Michael Mahan and his family believed to be an upset stomach turned out to be a dangerously twisted small intestine. Since doctors removed the failing organ, every 6-8 weeks, Michael ends up back in the hospital with septic blood. With no small intestine to help his body process food, the husband and father of three relies entirely on intravenous nutrition as he waits for an intestine transplant.

Michael’s priority today is raising funds to cover the out-of-pocket expenses associated with an intestine transplant and follow-up care. He may need to spend up to 10 months in a transplant center after the procedure, and the cost must be paid up front before he can be put on the transplant waiting list.

Michael Mahan HelpHOPELive

Michael is a husband and father of three

Fundraising with HelpHOPELive is helping Michael to secure the funds he needs to get the transplant, but it’s also connecting his family with their supportive community. “We’re just so excited to do everything we can to help him out,” said local resident Jon Rosenlund. “He is a wonderful man and a great father. It’s an honor to help him, but we need a lot of help.” (Fundraiser to benefit man awaiting intestinal transplant)


Get your campaign in the news! If you need help with press releases and media outreach, contact your HelpHOPELive Fundraising Coordinator today.

Post-Transplant Expenses You Need To Know About

Jennifer Alley was born with myopathic intestinal pseudo-obstruction, a chronic rare disease. She received an intestinal transplant in 2004 with support from her husband and son.

Jennifer Alley HelpHOPELive


How has the transplant impacted your life?


I have been sick since birth. Before my transplant, I was always in and out of the hospital and I had three internal tubes: one to empty my stomach, one to empty my bladder and one that served as a permanent IV line in my chest to deliver total parenteral nutrition (TPN). My body is now free of those tubes! Before my transplant there was no chance of me having a baby, but thanks to my organ donor, I was able to give birth in 2008. To honor my donor, we gave our son my donor’s name, Steven, for a middle name.

Jennifer Alley HelpHOPELive

“We gave our son my donor’s name, Steven, for a middle name”

It’s important to realize that a transplant is an improvement, not a “poof, it’s gone!” cure. Transplant recipients are immunosuppressed, so I can get sick very easily. Even something like the flu is much worse and much more threatening to me than to others, so we are always asking family members if they are sick before we go to see them. There are also certain foods I still can’t eat.


Are there emotional adjustments?


A transplant has a big emotional impact. I still am in and out of the hospital at times and I still have to leave my home and go to the transplant center in Pittsburgh when things go wrong. That includes leaving my son at home with my parents when my husband and I go. I miss my son and family so much when I’m there. My dogs help me emotionally; they have since I was little. Not having a dog with me at Pitt is hard!


Were you prepared for the financial impact of your transplant?


We knew getting a transplant would be expensive and it certainly was. A small intestine transplant is one of the most expensive transplants out there. However, we were not prepared for the post-transplant care expenses. After transplant, you have ongoing expenses to keep your organ working. That has taken a financial toll on our family.

Jennifer Alley HelpHOPELive

“You have ongoing expenses to keep your organ working”


What are some of the post-transplant expenses that recipients must cover?


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. Then there are co-pays for clinic trips and doctor visits. Medication co-pays can add up, especially early on when you are taking a lot of meds and the meds can change frequently. During every trip to Pittsburgh, there is a chance that we could need to be up there for weeks or months. And then there are some rare but very costly expenses that can come up, like a medical jet or helicopter ride if something is going very wrong and there isn’t time to take a commercial flight.


How do you combat high post-transplant expenses?


The costs are very extreme and unpredictable, so it is very important to fundraise. I will continue to fundraise for my care. Fundraising can help you cover medical expenses and get the care you need post-transplant.


Follow Jennifer’s story on her HelpHOPELive Campaign Page. Which post-transplant expenses has your family encountered? Reach out to @HelpHOPELiveOrg on Twitter and your story could be featured next!