Participant Profile

Lisa Z.

Lisa Z. is a 26 year old student who lives with her family, including her older sister who also has cystic fibrosis:

“When I was growing up with cystic fibrosis, I never felt differently. I never felt like I was different or… I just felt like a normal child. And I think part of that was because my mother and my father never treated me or my sister differently. We also had a next door neighbor coincidentally who had cystic fibrosis… He was a year older than me and a year younger than my sister. And we got along really well. And we used to do chest physical therapy. We had the same physical therapist come to our house and do chest physical therapy on us so whichever house she was at we used to do chest physical therapy together. And we used to even schedule our hospital appointments together, so it just felt so normal, you know, it felt really normal. When I had my friends come over you know when I was in elementary school and I had chest physical therapy every day and when they saw me do it, they would just stare at me, and look like you know like I was an alien or something and I always wondered like what’s the big deal, what are you staring at me for, but with our next door neighbor it was so different. It was like everyone in the neighborhood did it; you know we were just so used to doing it together. So in my childhood I never felt different, and I think that’s important for children that are going through a disease is to not feel different from other people.”

Although Lisa’s symptoms are currently mild, she understands how serious cystic fibrosis can be and is upset by how she thinks her doctors respond to her:

“I think that cystic fibrosis is probably just as severe as cancer and AIDS. And I don’t think that a lot of people know that. A lot of people just think that CF is a lung problem and you don’t hear about it so it’s not that bad, but um I think it is. I think it’s just as bad as any other disease out there. And I have a lot of friends that I know that have died of it. So it’s scary. It’s really scary when you have friends that die of it because then you think, well, you know, what’s going to happen to me, or, when is it going to happen to me, you know? I realize that it’s fatal but I know that I’m healthy right now, my doctors consider me healthy… The doctors consider me being very mild. However sometimes I don’t feel so mild; I feel really sick. But that’s not always the case. I have a lot of good days, and I have a lot of bad days. But because um I have such high PFTs [pulmonary function tests], you know my numbers are in the 90s, when I feel sick, the doctors don’t consider me sick sick sick even if I feel like I’m dying, they don’t think I’m that sick, and that really bothers me because they don’t know how I feel, only I know how I feel, and I think the doctors need to realize that.”

After being released from the hospital to try to manage her symptoms from home, a frustrated Lisa noted:

“I hate home IVs, I hate prednisone, I hate when my blood gets too high, I hate when my blood gets too low. I just want to be well.”

Since all of her medical care has been at one hospital, Lisa is concerned about having to change from a pediatric institution to one of adult care:

“There has been talk about switching adult patients to adult hospitals, but I don’t want to do that. All my care has been at Children’s Hospital since I was 4 months old. I’m used to the nurses… I’m used to the doctors, I’m used to the hospital. I know the hospital in and out… What a change it would be for me to go to an adult hospital like Mass General or Brigham and Women’s. That would be such an enormous change… And I don’t think that I’d have better care at an adult hospital because I mean all these doctors are, most of them are, they’re great at what they do, they know what they’re doing, they know how to treat the patient with a disease… I am familiar with the Children’s Hospital and that’s where I want to stay. I don’t think I’ll get better care at an adult hospital. I think I’m getting the best possible care at the Children’s Hospital right now for me. And my health is okay right now; my health is good, and this is where I want to be. And so whenever there’s talk of switching the adults to adult hospitals, I get really nervous. ‘Cuz I don’t do well in a new environment, I need my old environment. So that’s basically my take on adult hospitals. Plus we know everybody by name, I mean we know the doctors, we know the nurses, we know, I know the cafeteria people by name, I know the maintenance people by name, it’s kind of pathetic but when you know something so well, you just don’t want to leave it. You know why fix something that’s not broken? So, that’s my take on that.”


Lisa describes how
much her dog means
to her
>> Watch video


Lisa visits with a
canine friend
>> Watch video


Lisa debates treatment
options
>> Watch video

Requires Quicktime 7

Researchers
Michael Rich
Julia Szymczak
Julie Polvinen
Jen Patashnick
Richard Chalfen

Projects
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