Sick People on NPR

Today the fine folks at NPR posted to their Facebook page asking for people like me to interview for a story about being sick in America. Those of you who read this know pretty well how I cope with being sick and what it takes to do it. This is an important story to tell, even if they don't pick me.

I hope they pick me, though.

A friend who works for an NPR affiliate posted the status on my wall saying she wants to hear me on NPR. I find it oddly reassuring that when my friends think of sick people who would appropriately represent the chronically ill, they think of me. In fact, I am honored. I doubt they will pick me, but I DO have a great radio voice...

Pit Crews and Systems

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.

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.

Ain't nobody got time for that...

I might have to use this in the future.

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.

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.

Compliance Milestone!

Today marks 8 weeks of oral medication compliance.

WOO HOO!

Saturday is dinner at Rogue 24... :-)