Joanne Schum grew up in Rochester, New York, as the youngest of seven children. At the age of five, Joanne learned that she and her sister both had Cystic Fibrosis, a genetic disease. Joanneís CF didnít disturb her childhood too much; she was able to successfully attend high school and college. However, at about 14 years of age, she began to have problems with her lungs, which only increased through time. She began IV antibiotic treatments, which became increasingly frequent into her mid-20ís. At about 24, her lungs were losing their function, and she became listed for a transplant (1995). Joanne finally got a double lung transplant in September of 1997. At the time of the interview, Joanne was still in rejection, but was not impacted in a major way by the obstacle. She is an active volunteer with Second Wind and an important advocate for organ donation.
Excerpts from Transcript
Here is Joanne discussing what her pre-transplant support group was like.
UNC has a support group, and I think itís every
other week they meet. I
donít quite remember, but I think itís every other week. And they do request that you attend because they think that
itís good for you while youíre living down there. Itís pre-transplant people and post-transplant people, and then
they have usually a guest speaker, maybe a coordinator or a physical
therapist or a lung transplant surgeon would be there to talk, and you
could ask him questions. So I
did join that. I attended
those meetings as I could. It
was really helpful. It was
nice. At that point, I was
very scared to do this still, and I did not want to do it. You know, you got to hear about the people that were
post-transplant. It was still
scary hearing their stories. But
it was also hearing what they were doing at that time when they were at
the meeting; you know some were out running and stuff. That was exciting, but when they talk about their surgery or
complications, it was scary to hear, and I think I plugged my ears a lot
[laughs]. ĎCause Iím
terribly fearful of any medical things at that phase of my life. Now it doesnít frighten me as much.
At that point, it was not what I wanted to hear about. So the support group was real good.
Here Joanne discusses her reaction to being in the hospital for routine IV medication and finding-out they had a lung waiting for her.
I was very calm. It was like, ďOkay. Thatís fine." I was very calm about myself Ďcause I knew either Iím gonna live or die through this, itís not gonna matter. This is gonna happen. I couldnít do anything. Itís not in my control anymore. I couldnít help the surgeon or anything like that. But I was very nervous for my family; thatís what I was nervous about. But I wasnít even really nervous, I kept thinking, ďEw, this is scary for them because they were going to have to deal with the outcome whatever way it was gonna be. So I was totally calm, I was like ďWhatever. Just go ahead and do it.Ē So, no, itís surprising how you think youíll just scream or something. But I was very calm, just relaxedÖwaiting for it to start. It was hard, waiting for it to start. Itís like, ďCome on, can we get going?Ē
Here Joanne discusses the quality of life she has now after her transplant.
100 percent better. I know a lot of people refer to a transplant as trading one illness for another, and I donít know who said that, or why they continue to say that. But everyone I talk to--and I talk to a lot of people--and in my own experience, that is not true. I got rid of some really bad, damaged, very sick lungs. In return I didnít get another illness, I got capability to breathe, to do stuff Iíve never done. Iím healthy and I donít like it when they say you trade one illness for another, Ďcause I donít feel ill, Iím definitely not ill. Itís nothingÖitís totally different.
Joanne describes what it's like to repeat the process of waiting for lung transplantation--this time for her sister, who also has Cystic Fibrosis.
SF: How does that feel to be starting over again?
JS: I almost want to say itís harder, Ďcause Iím not in control. You know, I canít feel how her lungs feel. How bad does she feel? How good does she feel? You know, I canít feel that, and also, I donít know how to take care of her. I mean, most CF people, we know when we need drugs. You know, I wish I could tell, so she doesnít wait too long for some drugs or something. And itís harder on this end I think. I think itís because you might have to deal with a death, too, so it makes it very hard. But dealing with my own death was much easier. Itís like, ďOkay Iíll be dead. What do I have to worry about?Ē I mean itís awful to think about your family... But itís also because I had been sick for all these years, I thought Iíd never have to deal with a family death, like my parents or anything. And now with my new lungs, I have to think I may experience a death in my family before mine, which is a whole other issue of getting a lung transplant. People donít even think about, ďOh, wait a minute, I thought I was gonna die first in the family.Ē So now you actually have to think about you may experience you know from family members dying, which is a whole new thing. So, itís hard, itís all, uh!Önot fun being the support person, actually not the support person. She is married, and she actually has four kids. But just watching her go through this is hard. I mean, sheíll probably do fine, but itís scary to watch.
Joanne explains what a Pulmonary Function Test is, and its importance to someone who has had a lung transplant.
It measures the volume or how much air you have in your lungs or how quick you can get it out of your lungs. Itís sort of the deciding factor of when you need a transplant, too. When you have a certain percentage of what they expect, someone at your age, size, weight and height to blowÖwhen you reach a certain number and when it gets very low, itís time to get a transplant. So, we talk PFT-talk a lot. (Laughs) Itís like, ďWhatís your PFT?Ē So, itís a base of how well our lungs are doing, and how bad theyíre doing. And everyday I have to blow into my own little spirometer (itís called) at home. You have to do that after transplant. Itís to measure my lung functions every dayÖItís like a PFT, but itís a little, tiny machine, rather than a big one they have at the hospitals. And thatíll tell me if Iím rejecting if my numbers start to drop, cause I have to keep a little data log for it.
This page last updated 11/24/02