Home
News and Info
Looking Glass
Caregiver Stories
Stories
Poetry
Contributors
Resources
Contact
to donate to Breathing Room
Breathing Room has lots in store
for the year. If you would like to share your personal
stories, news items or poetry with us, please contact:
us at: info at thebreathingroom.org.
Stories, Poems
and opinions of participants are their own, and not necessarily
those of the Breathing Room organization.
Please visit
cfmessageboard.com to connect with members of the CF
community online.
Breathing Room
facilitates candid and open
communication between adults with Cystic Fibrosis,
supports the development of a community of adults with CF
and provides education and insight for families, caregivers,
and medical professionals who impact our lives.
|
|
My Three Teachers Continued
My next teacher was a young man who had been my patient since he was about fourteen. Dave was a generally quiet guy, who had a tough battle in his teenage years because his CF lung disease accelerated right at the time that he was trying to get some independence from his parents. The struggle for independence, a normal process for every teenager, was made even more difficult by the complicated ins and outs of Dave’s medical regimen. To be honest, many of my colleagues, and Dave’s parents, were concerned that he did not seem to realize the consequences of taking control of his own medical decisions. For my part, I had learned to be still and listen to Dave when he talked to me about his decisions, and learned to give him a little bit of space.
In his mid 20's, Dave’s CF lung disease worsened steadily, despite all the different therapies we were trying. At one point he and I had a long conversation about lung transplantation, and he met with the lung transplant coordinator and surgeon to learn about the benefits and risks of being listed for transplant. After a good bit of thought, he came to me to say that he decided not to be on the transplant last, because he felt that the success rates for the procedure were not high enough to endure what he perceived as a very difficult course of treatment.
He made this decision about a year before he died. Remarkably, it seemed that the physicians could not let him make this decision. Over and over again, David paged me, pissed off because yet another senior or junior doctor had asked " Are you sure you don't want be on the transplant list?" To Dave, it seemed as though no one else could come to terms with his reduced life span. The clinicians could only see his decision not to be listed as “giving up,” although Dave certainly never saw it that way.
As his lung disease progressed, Dave quietly made arrangements for his own funeral, spoke with his local priest and our hospital chaplain, and took the time to have long conversations with both his parents. I think that he reestablished their connection, as a gift to them, so that they could keep that sense of closeness after he was gone. Dave taught me that some of us doctors have our own “script” for how patients should fight against CF, and how patient should die. Sometimes doctors have little patience for people who are not "sticking to the script"; this was why they asked Dave over and over about transplantation. Of course the point is that it was Dave’s life to control; Dave was the expert in his illness, the expert in his own life. He understood how his decisions would affect his entire life, not just his body. Dave showed me again that we can miss seeing what is really happening if we focus on disease to the exclusion of illness.
|
|
|
