Tag Archives: nutrition

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!

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.