Story Sunday – Financial Assistance and Transplant – Smith Family
Welcome to another edition of Story Sunday! This Story Sunday is special because I was able to interview the Smith family over Zoom. Chuck and Leah are the parents of 3 year old Chandler, who just went through liver transplant in December. When we had our conversation he was not even 2 months post transplant. Our conversation ranged from symptoms Chandler had and how they found out he had PFIC, to the financial side of living with PFIC. This is a longer story, but well worth the read.
Chandler is 3 years old, 2 months post transplant, and only found out he had PFIC last September. The road to having a liver transplant happened very quickly for the Smith family going from not knowing he had PFIC and knowing about the potential for a liver transplant, to learning the name of the disease and being told he needed transplant within the next 6 months. 3 months later in December of 2021 Chandler would have his liver transplant.
I asked them what kind of PFIC that Chandler had, and they didn’t have a clear answer. They were told that he has PFIC syndrome, but could not narrow it down to one of the PFIC types or subtypes that have been seen. Meaning that it was not showing up genetically, but all of the symptoms were present.
They knew from Chandler’s birth that he had something wrong with his liver. He was born 7 weeks early and was in the NICU for about a month, and while there they noticed he had elevated bilirubin. At the time, they believed the liver issues were akin to being premature. At 5 weeks he had a biopsy to check for biliary atresia which came back negative but the signs were there that his liver was not working properly. Chandler also had the itch. His itchiness was moderate to severe. He would scratch his ears until they bled, Leah kept his nails short so he didn’t cut himself, and he would sway back and forth in his seat to scratch his back or belly. When I asked about his sleep, they said at first the itch affected it a lot, but for a while they attributed it to him being premature. Though later they would realize it was because it was itchy. They ended up trying hydroxyzine and it worked! Chandler started sleeping through the night and his itchiness was bearable.
For the longest time they did not know what Chandler was experiencing. They were only ever given the names of the symptoms that Chandler was having. They did not know he had PFIC until they learned of a drug trial to combat liver cholestasis at Georgetown. The doctor immediately told them that he needed a transplant. From viewing his labs, and after seeing him in person, they knew. Leah said that “sometimes you feel a little silly when people ask what your son has, and you have to answer with ‘I don’t know’.” They finally had a name for the disease that was causing their son’s liver to fail. Chuck made the comment “I felt a sense of relief. There were so many complex terms, and symptoms. It was hard to understand and repeat to others. But when I learned it was called PFIC, that’s so simple! There was a name for this disease and it isn’t so vague anymore.”
At only 1 year old, Chuck and Leah were told that Chandler would need a liver transplant. Leah said for them “It wasn’t a question of ‘if’ Chandler would need a liver transplant, but ‘when’. Would it be 3 years? 5 years?” A year later it was time to find a donor. After their conversation with the doctor at Georgetown, they knew it needed to be sooner, and 3 months later he had his liver transplant. Chandler is now 2 months post transplant, and is in great spirits. He is running around, playing, and as his mom said “You would never think anything is going on with him.” Liver transplant is not a cure however, as I am sure many of you know. Even though Chandler is running around and playing there are always the what ifs like complications, liver enzymes rising, the return of the disease. Chuck mentioned that Chandler may say “my tummy hurts” or have diarrhea one day and they don’t know whether he is just being a toddler or if it is something with his transplant. Not to mention the 12 medications he is on to help his body with the transplant.
After the transplant they thought that finding other families that had children who received liver transplant would help them find some clarity on the what-ifs of transplant. The other family they talked to did not have a PFIC kid but they did have a lot of great insight and provided some comfort to the Smith’s. They knew that the worrying would never stop but they could have a little piece of mind. This continues to show how important connection is, and how finding people with a similar challenge as you can make everything seem much less daunting. Leah had a great insight into what other parents can do for self-therapy while Chandler was going through PFIC and liver transplant. She had put together a blog for herself to use as an outlet or talk about the experiences she was going through and the struggles. Not only was she using the blog in that way but she said that it would also be used for Chandler to look back on when he grows up to see what he went through and understand a little better. The third reason she mentioned was for other families to see. To show that it is very scary and overwhelming, parents have so many questions, and she was hoping that her blog might be a good realistic source. See the blog here: https://chandmantough.weebly.com/.
We met the Smith family through our financial assistance program. They applied recently and we were so excited to help them get rid of a few outstanding bills. This is exactly what our financial assistance program is designed for. Chuck found out about our financial assistance program the first time he went to our website when he was trying to learn more about the disease. He didn’t look into the financial assistance until he thought they were ready to sit down, get organized, and ask for the assistance. There was also a factor of feeling comfortable enough to ask for help. They received assistance from a social worker to look into fundraising through their close friends and family, and through an organization called COTA. Unfortunately, fundraising is hard, and asking for money to support a child whose disease isn’t well understood can be daunting. It is hard to let people know your personal financial situation as well. People may see a family and think they don’t need the money, but they don’t know what comes with a rare disease, or the burden that comes with liver transplant and just how high the costs can be.
One of the best parts of the conversation we had was about insurance, taxes, and financial planning. Even if you plan for these things, you can never really plan for these things. Who could plan for multiple thousands of dollars in extra costs per year? Between the piles and piles of medical bills, getting bills from the hospital and different departments, finding out what insurance covers and doesn’t. All of this combined can make things seem impossible. The one message Chuck gave for all of this was to “Stay organized, try to learn as much as possible, and to stay positive about it. Everything will be ok.”
The final question I asked them was the same question I have been posing to everyone. “What is one thing that you would like people to know about PFIC patients?” Leah answered “Even though Chandler has had this disease from birth, he is still a normal little kid, and he is no different from anybody else.” Chuck responded “These families are going through a lot of stress, and you may not know it because they try not to show it.”
I wish I had more space to write about this amazing conversation I had with the Smith family because I had to cut it down so much. They were so much fun to get to know and they had a lot of great input and insight into the patient/family life. I am happy that they have joined our community as advocates. Thank you for tuning in to another Story Sunday, come back next Sunday for the next edition.