Tag Archives: medical insurance

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!

How Your Donation Will Support Our Nonprofit Mission

In addition to helping us to provide emergency assistance grants, your contribution will help fuel our mission to support community-based fundraising for people with unmet medical and related expenses due to cell and organ transplants or catastrophic injuries and illnesses. Learn why that matters so much to families across the country.

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How HelpHOPELive Serves Families


Roughly 20% of families who have health insurance still struggle to cover their medical expenses. We understand that a medical crisis can create a severe emotional, physical and financial burden for any family. Community support, where relatives, friends, neighbors and co-workers get involved in fundraising efforts, is often a vital untapped resource that can help people pay for uncovered medical expenses.

When a family chooses to fundraise with HelpHOPELive, they benefit from:

  • An online Campaign Page where they can ask friends and family for life-changing donations and receive messages of support
  • One-on-one consultation from one of our expert Fundraising Coordinators to help them develop a personalized campaign that is tailored to the needs and interests of the patient and their support network.
  • Custom fundraising materials like event flyers, awareness materials and press releases
  • The opportunity to earn Challenge Grants by reaching fundraising milestones
  • Our nonprofit status: fundraising support that does not jeopardize their medical coverage status (Medicaid, SSI)and the opportunity for their community members to make tax deductible contributions
  • Expert fundraising advice backed by more than 30 years of experience building successful campaigns

For many clients struggling with life-changing conditions, we are more than just a fundraising resource: we are a lifeline set apart by our compassion and expertise. In fact, in a 2014 survey, 92% of respondents rated our customer service as Excellent, Very Good or Good and 91% said they would recommend HelpHOPELive to another family or had already done so.


What Clients Say About Us


“We have had numerous experiences with nonprofit organizations and HelpHOPELive has been the best we have ever worked with. Compassionate, always ready to support and help, they have been rock steady in their devotion to those in need.”

The name HelpHOPELive says it all.”

“HelpHOPELive is a huge relief to me during a very stressful time.”

If it were not for HelpHOPELive, my son would never have received his transplant.

“Tangible financial support has helped immensely, by lifting a burden that would otherwise be hovering and weighing over us”

Many families would not be able to cover their vital medical expenses without fundraising. Your donations will help us to continue providing key fundraising support to families that depend on it.


We Still Need Your Help To Spread Hope!


We rely on contributors like you to help us continue serving families coping with the financial burden of uncovered medical expenses. Find out how you can keep hope alive for these families with your donation and support.