Making systems work is the great task of my generation of physicians and
scientists. But I would go further and say that making systems work —
whether in healthcare, education, climate change, making a pathway out
of poverty — is the great task of our generation as a whole.” (Atul Gawande)
This particular TED talk is one that speaks to the current crisis in medicine. We have cowboys and mavericks when we need pit crews that work together as a system. It's quite interesting and certainly worth the 20 minutes.
Friday, April 20, 2012
Tuesday, April 17, 2012
More Awareness...
April is PIDD awareness month. We've discussed this already. I feel like this week is "be aware that you might die of this stuff" week. Or, conversely, "look how lucky you are to be alive with this" week.
2 children I did not know, but were close to others in the community, passed away recently. These kinds of news stories shared by those I know hit close to home for me and remind me how tenuous things can be for those with rare diseases.
Brooke had ataxia telangiectasia and died at age 16, much beloved by everyone who knew her. You can read more about her life here.
Giovanni was born with NEMO. His life inspired people around the world to become bone marrow donors, even though he never found a donor match himself. You can read more about him here.
These are just two of many stories. Some are more hopeful than others, but stories like these are the ones that make me the most sad, but at the same time grateful. Grateful that we had a loving family doc that kept me healthy all those years so I didn't know I had a PIDD. Grateful that I am now able to access world-class care that keeps me well and ensures a good quality of life. Grateful that I am one of the lucky ones. My heart goes out to these families and the many others who never know the name of their child's disorder.
2 children I did not know, but were close to others in the community, passed away recently. These kinds of news stories shared by those I know hit close to home for me and remind me how tenuous things can be for those with rare diseases.
Brooke had ataxia telangiectasia and died at age 16, much beloved by everyone who knew her. You can read more about her life here.
Giovanni was born with NEMO. His life inspired people around the world to become bone marrow donors, even though he never found a donor match himself. You can read more about him here.
These are just two of many stories. Some are more hopeful than others, but stories like these are the ones that make me the most sad, but at the same time grateful. Grateful that we had a loving family doc that kept me healthy all those years so I didn't know I had a PIDD. Grateful that I am now able to access world-class care that keeps me well and ensures a good quality of life. Grateful that I am one of the lucky ones. My heart goes out to these families and the many others who never know the name of their child's disorder.
Wednesday, April 11, 2012
Tuesday, April 10, 2012
I am the 1%
There's an article I ran across on Facebook examining the statistics of health care spending in the US. Quite an interesting way to look at the spending to try and devise ways to control it, I suppose. That's an admirable goal, but there are some things in the reporting of this story that gave me pause.
Of course people on public health care use more care... Those are the elderly, disabled, and most ill among Americans. That makes a lot of sense to me, but seems to lead to the opportunity for those who oppose universal health care to say "well, if you give it to people they use more." I believe that assertion to be patently false, but that's not really the issue here.
I also found it interesting that the racial divide is certainly not what some folks would lead one to believe. The way that politicians talk, hispanic immigrants are what's costing so much and making our health care system so expensive. Turns out, that's definitely not the case. Sickly older white women are really what costs us so much money. Interesting.
Of course people on public health care use more care... Those are the elderly, disabled, and most ill among Americans. That makes a lot of sense to me, but seems to lead to the opportunity for those who oppose universal health care to say "well, if you give it to people they use more." I believe that assertion to be patently false, but that's not really the issue here.
I also found it interesting that the racial divide is certainly not what some folks would lead one to believe. The way that politicians talk, hispanic immigrants are what's costing so much and making our health care system so expensive. Turns out, that's definitely not the case. Sickly older white women are really what costs us so much money. Interesting.
Thursday, April 5, 2012
An Aware World
I would be remiss if I didn't mention that April is Primary Immune Deficiencies Awareness Month. Whoop tee doo. Every year I post a bunch about it, every year it's the same. People ignore it because it's not their issue. Ok whatever. That's fine.
This year, I've decided to go with a different thought path. What would the world look like if it were more aware? More specifically, what would the lives of my friends be like if we lived in a world where PIDD wasn't so strange or foreign or scary or... insert your favorite negative adjective here. It's always going to be a life altering diagnosis, but it doesn't have to be a life-ending one.
My friend G would be studying for her PhD in vocal performance and pedagogy. Her coloratura would be known in the opera community as one of staggering power and emotion. She would travel the world, in demand for her pitch perfect interpretation of Rossini. She would draw crowds wherever she went. Her classical albums sell consistently well and she lives quite comfortably. The adoring crowds love her vulnerability and are impressed that she balances her busy career with motherhood and chronic illness.
My friend L would be doing a number of things. What I most see her doing? I think she'd have her own dance studio, where she'd share her love of ballet with students young and old, teaching them the techniques she learned at ABT and Joffrey. The positive and creative atmosphere would inspire her students and attract world-renowned talent for masterclasses in her studio. She would host special performances of her studio's award-winning performances for children from the local hospitals, knowing that, because of her great team of doctors, she was able to live her dreams.
Why are these scenarios not the case? My friends were not diagnosed or treated properly. In some cases, they still aren't. They could have been. It could have been a different world for them. I hope that, someday, little girls like G and L will be able to fulfill their dreams and not feel so limited. I hope that PIDD becomes something that can be more benign and not cause lung damage, ridiculous infections that require a year on antibiotics, and will be something that is more manageable. I want PIDD patients to have full lives. All of them. Not just the lucky ones who are blessed to be diagnosed early or have uncomplicated presentations.
This year, I've decided to go with a different thought path. What would the world look like if it were more aware? More specifically, what would the lives of my friends be like if we lived in a world where PIDD wasn't so strange or foreign or scary or... insert your favorite negative adjective here. It's always going to be a life altering diagnosis, but it doesn't have to be a life-ending one.
My friend G would be studying for her PhD in vocal performance and pedagogy. Her coloratura would be known in the opera community as one of staggering power and emotion. She would travel the world, in demand for her pitch perfect interpretation of Rossini. She would draw crowds wherever she went. Her classical albums sell consistently well and she lives quite comfortably. The adoring crowds love her vulnerability and are impressed that she balances her busy career with motherhood and chronic illness.
My friend L would be doing a number of things. What I most see her doing? I think she'd have her own dance studio, where she'd share her love of ballet with students young and old, teaching them the techniques she learned at ABT and Joffrey. The positive and creative atmosphere would inspire her students and attract world-renowned talent for masterclasses in her studio. She would host special performances of her studio's award-winning performances for children from the local hospitals, knowing that, because of her great team of doctors, she was able to live her dreams.
Why are these scenarios not the case? My friends were not diagnosed or treated properly. In some cases, they still aren't. They could have been. It could have been a different world for them. I hope that, someday, little girls like G and L will be able to fulfill their dreams and not feel so limited. I hope that PIDD becomes something that can be more benign and not cause lung damage, ridiculous infections that require a year on antibiotics, and will be something that is more manageable. I want PIDD patients to have full lives. All of them. Not just the lucky ones who are blessed to be diagnosed early or have uncomplicated presentations.
Wednesday, April 4, 2012
Compliance Milestone!
Today marks 8 weeks of oral medication compliance.
WOO HOO!
Saturday is dinner at Rogue 24... :-)
WOO HOO!
Saturday is dinner at Rogue 24... :-)
Choosing Wisely
Today is the day. Choosing Wisely is releasing the lists from physician organizations regarding the "Five Things Physicians and Patients Should Question." As a patient, I question a lot more than these things, especially when it comes to procedures and testing. At some point, you have to be aware enough to realize that there has to be a line drawn somewhere.
One thing I find very interesting is that two of the lists invoke the recent study about sinusitis and antibiotics. I really hope the general public can and will seize on to this idea of waiting to get antibiotics. It will improve outcomes in the long run and help prevent secondary problems like antibiotic resistant strains of bacteria and gastrointestinal infections that can come from antibiotic exposure.
It's also interesting about the timing of difference high tech scans. I think that people are given far too many of these tests because they insist on them. They raise Cain until someone gives in to them and gives them unnecessary testing. I'm all for being thorough, but I believe that people in this country are far too quick to demand more and more intervention for silly things, like the common cold. Even with healthy immune systems, good musculature, solid bones, you won't be healthy all the time. Sometimes, things need to run their course. Obviously, this is different for people with chronic conditions, but I think even in our community we need to consider what is going on.
One thing I find very interesting is that two of the lists invoke the recent study about sinusitis and antibiotics. I really hope the general public can and will seize on to this idea of waiting to get antibiotics. It will improve outcomes in the long run and help prevent secondary problems like antibiotic resistant strains of bacteria and gastrointestinal infections that can come from antibiotic exposure.
It's also interesting about the timing of difference high tech scans. I think that people are given far too many of these tests because they insist on them. They raise Cain until someone gives in to them and gives them unnecessary testing. I'm all for being thorough, but I believe that people in this country are far too quick to demand more and more intervention for silly things, like the common cold. Even with healthy immune systems, good musculature, solid bones, you won't be healthy all the time. Sometimes, things need to run their course. Obviously, this is different for people with chronic conditions, but I think even in our community we need to consider what is going on.
Monday, April 2, 2012
On Being "Good-Natured"
I got an interesting compliment from my immunologist, Dr. S. At my April treatment he asked me how I stayed so good-natured... How it is that I don't let the many -ologists and such get me down. Well, I don't really have a choice. At least in my reckoning of things, I can either deal with things in a constructive manner or I can wallow and complain. A happy life is not made up of our complaints or our shortcomings...In so many words, you must play the hand you're dealt. My hand just happens to be a little complicated.
This is not to say I'm good at this stuff or have it figured out, because I'll be the first to tell you I could be MUCH better at it. Why has it been so long since I've been to the dentist? I will blame finances, which is only partially true. I just couldn't deal with another regular medical-ish appointment at the times when I've had dental insurance. I'm only just now getting to the point where I can face it and it feels like a huge step for me. It isn't that I want my teeth to rot out of my mouth, I just couldn't overcome the emotional hurdle... until now. I am committed to taking better care of myself, my whole self, so I can be as healthy as possible. It may not be as good as the immune competent folks, but it will be better than what it could be.
When thinking about what makes you have a happy life, it isn't what most people assume. I think that this post gives good insight. It's not about what you have or who you are, but how you choose to react to things and what you choose to hold on to. It's hard to put into practice, but I think, in the end, if you can at least do a majority of these things on a given day, you'll have a much happier existence and can also be "good-natured."
This is not to say I'm good at this stuff or have it figured out, because I'll be the first to tell you I could be MUCH better at it. Why has it been so long since I've been to the dentist? I will blame finances, which is only partially true. I just couldn't deal with another regular medical-ish appointment at the times when I've had dental insurance. I'm only just now getting to the point where I can face it and it feels like a huge step for me. It isn't that I want my teeth to rot out of my mouth, I just couldn't overcome the emotional hurdle... until now. I am committed to taking better care of myself, my whole self, so I can be as healthy as possible. It may not be as good as the immune competent folks, but it will be better than what it could be.
When thinking about what makes you have a happy life, it isn't what most people assume. I think that this post gives good insight. It's not about what you have or who you are, but how you choose to react to things and what you choose to hold on to. It's hard to put into practice, but I think, in the end, if you can at least do a majority of these things on a given day, you'll have a much happier existence and can also be "good-natured."
Subscribe to:
Posts (Atom)