There’s so much to tell from the American Thoracic Society trip that I’ve decided to tell it in pieces. It’s easier for me to find time to write it, and it’s easier to read online.
On Sunday I gave a speech to a session at the conference where various academics and doctors were giving presentations on the role of family in health outcomes. I was the last speaker, which made me especially nervous. In years past, the patient speaker was sort of used to set the stage for the academic discussion. I was a little afraid I’d look like a yutz after all these brilliant people! To add to the stress, my speech this year was very much on the fly. Donna Appell and I were rewriting it even as we sat in the audience.
And then my turn came.
I got up to the podium and discovered that the light they’d put there so all the other speakers could see their notes in the darkened room was too much for me and glared me out. All I can say is THANK GOD I did three years of debate in high school. Thank you Mrs. Bertot! I winged it from memory, and I think it went okay – actually probably better than it would have if I could read my notes.
I think going last was almost in my favor. By that time everyone’s brain was fried, so to close with a presentation like mine that wasn’t data heavy etc. was a break for the audience. I told stories. They actually laughed.
I hit on a number of points briefly – any of which could have made an entire presentation of its own.
One of my pet peeves is the definition of family. I told the docs. that we don’t all live in a Lifetime channel movie where some crisis occurs in a family, there’s the ensuing drama, and then just when it matters most, the entire family pulls together to cope and is better for it in the happy ending. Truth is chronic illness and medical drama typically only magnifies any existing dysfunction within families – and they don’t all manage to pull it together in the end. Thus, as the patient in a less than Leave-it-to-Beaver family system, you’ve got to create family.
Sometimes it’s extended family. Sometimes it’s close friends or sometimes it’s even clergy. In short, my “family” is whoever I tell you it is and I should be allowed to have anyone I want involved in my health care.
Next, I registered a bit of a pet peeve about some of the challenges involved with transitioning from pediatric medicine to adult medicine. As more and more people with Hermansky-Pudlak Syndrome get diagnosed as children, we’ve got more young adults going through this experience. Essentially, there’s this adolescent medicine model where, rightfully so, the teen is supposed to start taking more responsibility for their health care. But, with many HPS’ers what can happen is they move quite successfully into adult medicine. Most don’t have very complicated health issues at that stage. Then, suddenly in adulthood, their lung function starts to tank and then they move onto experimental medicine or transplant medicine – and suddenly being an independent loner is held against you.
In transplant medicine, and for some clinical trials, you’ve got to prove you’ve got an adequate support system to not only help you comply with complex treatment, but to keep you positive etc. It isn’t fair to completely cut family out of the equation and then expect them to pitch in at the ninth inning of the game. The emotional issues are hard enough for them, let alone trying to get up to speed on the medical knowledge they need to have to be an adequate support system. Besides that, most patients don’t realize that they’re going to be evaluated on their support system, and thus when they’re healthy they aren’t thinking about building such a system. It would be helpful if this were more encouraged. (Not that it’s easy since when you’re still pretty healthy, everyone thinks you’re nuts when you try to get them to understand what you’ll need one day to be considered for a transplant. They can’t believe you’ll ever need one.)
Lastly, I talked about different family styles. Some families become Google masters becoming experts on their disease, while others put their head in the ground and choose not to get involved until a major crisis. You’ve got to figure out where families are coming from in order to approach them correctly about treatment and disease management.
I used as an example the fact that most of our HPS families tend to be very religious. This has a lot to do with the cultures involved. I’m all for a strong faith in God, but some cultures can sometimes include a bias about medicine and medical research. Often we’re told by our families that they’ll just pray harder. It’s as if they view participation in a clinical trial as somehow demonstrating a lack of faith or loyalty to God.
So, I use this joke to make a subtle point. (I think I first heard it from Donna a few years ago. Funny enough Pastor Pat used it just a few weeks ago.)
There’s a man sitting in his house and the police knock on the door. They try to warn him that a huge flood is coming, and that he should evacuate. He tells them not to worry about him. He’s confident God will take care of him. The flood waters come and the man is now sitting on his roof. The fire department comes by in a life raft and tries to encourage the man to come with them. “Don’t worry about me,” he tells them, “I have faith. I know God will save me.” Finally, the waters are so high that the man is perched on edge of his chimney. A helicopter comes by and drops down a rescue ladder. They try to get the man to come with them, but he steadfastly chooses to remain, confident that God will deliver him from the flood. He drowns. He gets to heaven and he’s a bit irritated with God. “I had faith,” he says, “I was loyal to the end and still you let me drown. What’s up with that?” God answers, “I sent you the police to warn you, a life raft and even a helicopter. What else do you want from me?”
On Sunday I gave a speech to a session at the conference where various academics and doctors were giving presentations on the role of family in health outcomes. I was the last speaker, which made me especially nervous. In years past, the patient speaker was sort of used to set the stage for the academic discussion. I was a little afraid I’d look like a yutz after all these brilliant people! To add to the stress, my speech this year was very much on the fly. Donna Appell and I were rewriting it even as we sat in the audience.
And then my turn came.
I got up to the podium and discovered that the light they’d put there so all the other speakers could see their notes in the darkened room was too much for me and glared me out. All I can say is THANK GOD I did three years of debate in high school. Thank you Mrs. Bertot! I winged it from memory, and I think it went okay – actually probably better than it would have if I could read my notes.
I think going last was almost in my favor. By that time everyone’s brain was fried, so to close with a presentation like mine that wasn’t data heavy etc. was a break for the audience. I told stories. They actually laughed.
I hit on a number of points briefly – any of which could have made an entire presentation of its own.
One of my pet peeves is the definition of family. I told the docs. that we don’t all live in a Lifetime channel movie where some crisis occurs in a family, there’s the ensuing drama, and then just when it matters most, the entire family pulls together to cope and is better for it in the happy ending. Truth is chronic illness and medical drama typically only magnifies any existing dysfunction within families – and they don’t all manage to pull it together in the end. Thus, as the patient in a less than Leave-it-to-Beaver family system, you’ve got to create family.
Sometimes it’s extended family. Sometimes it’s close friends or sometimes it’s even clergy. In short, my “family” is whoever I tell you it is and I should be allowed to have anyone I want involved in my health care.
Next, I registered a bit of a pet peeve about some of the challenges involved with transitioning from pediatric medicine to adult medicine. As more and more people with Hermansky-Pudlak Syndrome get diagnosed as children, we’ve got more young adults going through this experience. Essentially, there’s this adolescent medicine model where, rightfully so, the teen is supposed to start taking more responsibility for their health care. But, with many HPS’ers what can happen is they move quite successfully into adult medicine. Most don’t have very complicated health issues at that stage. Then, suddenly in adulthood, their lung function starts to tank and then they move onto experimental medicine or transplant medicine – and suddenly being an independent loner is held against you.
In transplant medicine, and for some clinical trials, you’ve got to prove you’ve got an adequate support system to not only help you comply with complex treatment, but to keep you positive etc. It isn’t fair to completely cut family out of the equation and then expect them to pitch in at the ninth inning of the game. The emotional issues are hard enough for them, let alone trying to get up to speed on the medical knowledge they need to have to be an adequate support system. Besides that, most patients don’t realize that they’re going to be evaluated on their support system, and thus when they’re healthy they aren’t thinking about building such a system. It would be helpful if this were more encouraged. (Not that it’s easy since when you’re still pretty healthy, everyone thinks you’re nuts when you try to get them to understand what you’ll need one day to be considered for a transplant. They can’t believe you’ll ever need one.)
Lastly, I talked about different family styles. Some families become Google masters becoming experts on their disease, while others put their head in the ground and choose not to get involved until a major crisis. You’ve got to figure out where families are coming from in order to approach them correctly about treatment and disease management.
I used as an example the fact that most of our HPS families tend to be very religious. This has a lot to do with the cultures involved. I’m all for a strong faith in God, but some cultures can sometimes include a bias about medicine and medical research. Often we’re told by our families that they’ll just pray harder. It’s as if they view participation in a clinical trial as somehow demonstrating a lack of faith or loyalty to God.
So, I use this joke to make a subtle point. (I think I first heard it from Donna a few years ago. Funny enough Pastor Pat used it just a few weeks ago.)
There’s a man sitting in his house and the police knock on the door. They try to warn him that a huge flood is coming, and that he should evacuate. He tells them not to worry about him. He’s confident God will take care of him. The flood waters come and the man is now sitting on his roof. The fire department comes by in a life raft and tries to encourage the man to come with them. “Don’t worry about me,” he tells them, “I have faith. I know God will save me.” Finally, the waters are so high that the man is perched on edge of his chimney. A helicopter comes by and drops down a rescue ladder. They try to get the man to come with them, but he steadfastly chooses to remain, confident that God will deliver him from the flood. He drowns. He gets to heaven and he’s a bit irritated with God. “I had faith,” he says, “I was loyal to the end and still you let me drown. What’s up with that?” God answers, “I sent you the police to warn you, a life raft and even a helicopter. What else do you want from me?”
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