From the Blogposts » inbox

Guest Post: Continuing Life

Today’s guest post is brought to us by Bo Butler. His Ashley had her double-lung transplant in 2007. They go to Pittsburgh for her care and she is doing great! I trust that you’ll find this as thought-provoking as I did.

FamilyThere’s something I haven’t talked much about on my blog, so I’m grateful to Fatboy for the chance to guest-post-it-up. It’s something very important to both myself and to Ashley. Something, in a larger way, becoming increasingly important to a CF community that, for the first time in human history, has the medicine and the technology to stay alive longer. Long enough to want and to deserve more from life than simply breathing.

What is the goal of continuing life?

Continuing life.

Since she was very, very young, Ashley has asked little else from life than that she be able to have a child. Initially the problem was that no one thought she’d live past ten. Once she passed that they thought she wouldn’t live past twelve. And so it went. Until she got old enough that her body – hampered by lowered lung-function though it was – would be able to conceive and even carry a child to term.

And so of course worried doctoral hearts palpitated with warning. Blood pressures went up beneath blindingly crisp white smocks. Social workers were brought in. Discussions had. Fingers wagged.

Ashley’s a smart girl, though. Smart as she is tough. [Read more…]

Cystic Fibrosis and Bi-Lateral Lung Transplants as Therapy

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…]

New Lungs on Order for Justine Komin

Calling all people named Justine Komin with CF on the double-lung transplant list. There are lungs waiting for you in Minneapolis, MN.

That’s right, our girly-girl who gets her hair cut a lot while waiting for new lungs got the call today!! Her blog and CaringBridge page have updates saying she made it to the hospital with her dad around 7pm. No updates since.

Here blog is here and her CaringBridge is here (you need to make an account).

I will be checking the sites pretty constantly for updates of good news like is my normal vigil when the word goes out.

Cystic Gal, Beth Peters, Is in ICU Now

Word from her uncle and sister says that it was a textbook surgery and that her new, pink lungs are a perfect fit for her. We are all waiting with bated breath until she makes her own first communication. Knowing her, it won’t be long. You know Beautiful will have instructions to leave my iPhone on my lap at all times if I ever need to get a lung transplant.

Go Beth, go!  Cystic Gal