I’ve been a surfing, swimming, cross-country running, division one scholarship rowing, non-smoker my whole life, so you can imagine my shock—as well as my family’s—when I had to undergo open lung surgery last summer.
The scars from the surgery aren’t too painful anymore—it mostly just hurts to sneeze—but I often say that it is an experience that got part of my soul as well as my lungs. I can’t even imagine what a double lung transplant would feel like and really thought about that while listening to The New York Times “Patient Voices” this week. Their current theme is lung cancer—the number one cancer killer of both men and women in the US—and it is absolutely worth a listen.
More here: nytimes.com/health
Wednesday, April 22, 2009
The lung stigma.
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1 comments:
Hi Katie!
I'm sorry you went through the pain and fear involved in an open lung biopsy... I have cystic fibrosis and I've had many scary things going on with my lungs... I was diagnosed with CF on the day of my 13th birthday in 1973... Life expectency back then for a CF patient was 14 years. I was 49 a little over a week ago...
You said you can't even imagine what a double lung transplant would feel like... It's kinda funny -- I'd gone through a number of chest tubes to resolve several spontaneous pneumothoraces -- and my wife once watched me writhing on my hospital bed after they schlerosed my lung/chest cavity with a lye and lidocaine solution (the writhing started after the lidocaine wore off and I didn't let them start the morphine fast enough...) The double lung transplant in it's entirety was a small fraction of that pain... I'm honestly guessing that it was less than the pain you felt post surgery with the incision and sneezing... And life with "real" lungs has been mind blowingly amazing... I struggled almost 40 years with lousy lungs -- my lung capacity around 10%, O2 24/7, the three years before transplant... It's been over nine years with my beautiful, new lungs... I think about it every day, Katie -- I think about how amazing this feels... I often tear up thinking about it, like I am now... I'm thankful for everything I went through the first 40 years - because that truly helps me appreciate what I have now...
I also have been lucky enough to learn about the beautiful girl who saved my life... A precious 17-year-old girl from Iowa named Kari who told her family in the month before she died how strongly she felt about organ donation. She was healthy as a horse, and she told them twice...
I have some of my story about Kari and about me -- with links to the first anonymous letters I exchanged with her family (they gave me permission) at www.ClimbingForKari.org and I blog about organ donation at www.ReviveHope.comThanks for your little piece on lung stigma -- it is sad that so many assume someone with a lung problem was a smoker -- I can't tell you how many people gave me that look while coughing with my old lungs... But, there are good, worthy people who smoke or have smoked in their lives too -- and sometimes we need to remember that...
My life now is pretty much dedicated to the girl who allowed me to stay on this beautiful planet (and my princess - my wife - the girl who made me want to stay...) And in telling people about Kari, I also tell them about the magic of organ donation, and how donors are heroes and leave a legacy that will never be forgotten, like I could never possibly forget Kari...
It's National Donate Life month... Please think about it, consider it, and register with your state's registry -- be someone's hero in the future...
I hope your Crohn's and vasculitis and any other issues you deal with daily are managable -- it's amazing the strenght we can find within ourselves when these situations are handed to us -- I just stumbled across your blog, but I have to believe you amplify that strength...
You take care...
Love, Steve
Steve Ferkau
Chicago, IL
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