Hannah’s Story
My name is Hannah and I’m a 39-year-old woman who was diagnosed a year ago with Congenital Hepatic Fibrosis. I live in Las Vegas and there are no local hepatologists; the only ones available come from California and there are only five. When I realized my doctor didn’t really know anything about my disease, I recognized that I needed to research where to go for better care, and learn more about what’s going on in my body.
After a lot of research I found the NIH. Forgive me but I don’t exactly remember how I found Colleen and emailed her, but she responded that day!! We talked several times, I decided to send her my medical file along with 6 years of blood work, so the doctors could see my liver enzymes fluctuate; they go extremely high, then go back down again. They have been doing that for 16 years. So I sent my file to Colleen and NIH contacted me shortly afterward.
I made arrangements to go to Bethesda, Maryland for my first visit, then on my way to the biggest blessing I could ever hope for. I knew NIH would pay for the medical expenses this time, but I was really worried because I knew being in a clinical study I’d have to go several times a year. I just didn’t know how many times I could afford the expense. I was placing all my hope in this place. The day of my appointment arrives and I was so pleased, the campus and hospital are beautiful, as well as the staff is so friendly. One thing that surprised me is that everything I was scheduled for, tests and labs, were done on time. I had no waits; that was true on two visits. That really impressed me.
My research doctor is fantastic, very nice and personable, with a nice bedside manner. She is very, very smart; she knows her stuff. She made me feel at ease and gave me the best news on my first trip. She told me “because I do not have cirrhosis I qualified for the study for patients that are non-cirrhosis congenital hepatic fibrosis.” Because of this, NIH will cover travel, transportation to and from the airport, and hotel accommodations. Can you believe that?!!! That was the one thing I was worried about, but the financial burden was taken care of right off the bat; I’m so grateful.
I just got back from my second visit. This visit NIH visit went very smoothly as well. The shuttle was easy to find at the airport. The hotel arrangements were unique for me, which made it special. We spent a lot of time at the Ronald McDonald House when my son was very sick as a baby; the place NIH has for patients to stay is right down the street from the clinic. It’s exactly like a Ronald McDonald House, but for adults. It’s very cool you get to meet other patients and hear amazing things that are happening at NIH. I didn’t feel so alone having a rare disease. People have asked me why I’m in a study where I’m not getting any meds to make me better. I tell them this and I truly mean it “if these doctors want to learn about my disease and I get to come to one of the best research facilities in the world and have some of the best hepatologists worldwide, I think that’s a fair trade off.”
I’m eternally grateful to Colleen, my angel whom I’ve not yet met, for helping me. Just knowing that I have NIH in my corner makes me feel 100 lbs. lighter. Now I go every 6 months to NIH and just live my life as normal as possible. I’m thankful for everyday.
