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Cystic Fibrosis and Bi-Lateral Lung Transplants as Therapy

December 13, 2010

Donate LifeI’m pretty sure I’ve written about my views on CFers and lung transplants as the ultimate therapy/treatment nearly to the point of it being ad nauseum, except it may be continually overlooked since it’s often in combination with a manifesto about taking control of your life and doing everything you can do keep going on your original equipment as long as you can. Some of my comments about my view on transplantation on Facebook have shaken up some dust, gotten people upset, and encouraged/strengthened others. Since it’s such a mixed bag and Facebook is hardly the place to write 1,400 words on the topic, here goes!

Here, I am fighting to Change the Standard of Thinking of patients, family, friends, and even the medical community in several areas, and this is one of my most passionate, though likely not the most far-reaching and definitely my most controversial. The way I see it, if everyone thought they would eventually need a transplant no matter what they did regarding treatments and compliance, why the flip should anyone do any at all? They’ll just get new lungs earlier and go about their lives with digestive, sinus, vitamin and mineral absorption issues. I am not against transplants as a therapy or the people who get them. What I am against is the mindset that everyone with CF will need a transplant someday to avoid death or else live on life support in a hospital until they die once they can’t sustain themselves.

Keyword: Everyone

Why Fatboy is Pro-transplant and Organ Donation

Notice the banner for Angel Cove Organ Donation Awareness in my sidebar. [Read more…]

Hattie Dunstan: New Lungs, New Color

July 10, 2010
Hattie Dunstan

Hattie Dunstan

On Monday, July 5, 2010, Hattie Dunstan got the call at 1am to come to Toronto General Hospital for new lungs. By 4pm, the miracle of transplantation was complete and her cystic fibrosis-riddled lungs were gone. Her new life, while still heavily sedated until the next morning, had begun.

I love reading these stories, because it was one more person on my blogroll who went from the purple “Waiting for new lungs” status to the green “Transplant recipient” status. I’m looking forward to not being able to find anyone on the list blogging away their days waiting for new lungs. I’d rather that my list be all green “new lung” blogs, white “I’m doing fine” blogs, and pink “I’m sticking by my CFer” blogs. Say “no” to purple!

Two more on the list to go! Hang in there Beth and Dustin. I was just reading Hattie’s post from July 2nd a moment ago, and I got choked up remembering reading it on the 4th, with none of us knowing she was getting new lungs the very next day! Here is what she wrote:

The word breathless has taken on a whole new meaning. I thought I knew what being out of breath was. I thought I knew what not breathing was like…no…not until this week did I know what it is like to struggle…and that’s saying something!

I cannot even get over how much my breath has now been taken from me. Doing anything leaves me gasping, haunted, winded, exploded, breathless. It is absolutely insane, terrifying and unbelievable that something as breathing can be soooo hard, even harder then before!

Amazing! Go, Hattie, go!

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