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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.

What Has Fatboy Been Up To?

Money Money MoneyA heck of a lot, and nothing at all. Lots of stress, though, plain old stressful!

Beautiful and I have been having a heck of month with her allergies after getting back from our Labor Day break in Ohio. She went off her allergy meds that week to prepare for her allergy test the next Wednesday (now last Wednesday). You can read about those experiences on her blog in much greater detail than I care to re-create here.  A quick synopsis that explains my absence is easy, though: she had a scary reaction during the testing and the visit, along with a previous balance, came out to a couple dollars short of $1,000! Thus, I’ve been a very, very busy and stressed Fatboy.

I’m sure we aren’t the only CFer family out there with these feelings, but perhaps I can lay them out for discussion since we’re all friends here. Do you or your spouse (going either way, regardless of who has CF) feel like they are giving up some portion of their life dream for a period due to CF in the family with a fear that the sacrifice will be permanent? We hopefully all have dreams and goals, but CF just seems to find a way to throw a monkey wrench in the works.

For us, this dream has been placed on hold until I can bring in some serious cash, and that really bothers me. It bothers me to the core, and those of you who know me in person may have an idea why. I am far from lazy and would likely be pegged as both an over-achiever and a workaholic. I can be a severe workaholic if Beautiful doesn’t remind me of my family priorities and obligations, not to mention not working myself into an early grave from exhaustion and infection. That sure won’t see our dreams realized! I work (previously work and full-time college) because I don’t want laziness to get the slightest grip. I could lay around all day and watch TV and become quite accustomed to that. I sure do enjoy that lifestyle on vacation, but I don’t want to give anyone the opportunity to label me as different or associate my activity level with CF.

It horrifies me to think that there may be a day in the future where someone will ask why I don’t work and don’t leave the house because I’m on “the list.” We have finally come to grips that it is a very real possibility that I will need a transplant someday, but the hope of keeping myself healthy with diet, exercise, and medicine is pushing me to prepare for that day so it doesn’t affect us beyond me being sick for a period of time followed by surgery and recovery and then get on with our lives with a renewed vigor.

Any idea how much that costs sitting where we are today? I am figuring that (as long as I can continue working from home up until surgery) it will come out to around $50k in lost wages and expenses for the 6 months surrounding surgery. That’s a pile of cash and it cleanly scares the junk out of my trunk. On top of that, there is the whole discussion/matter about having kids and how that will happen and how much that will cost.

So there you have it – that’s why Fatboy has been too busy to write or be on Twitter. It’s not just getting things done at this point. My mind is full of mush, muck, and more negative things than I would care to admit to. While I share a great deal of it with Beautiful, to dump all of what is in my brain on her at once would be unfair and unproductive, so I usually have my “down day” once every week or two now. I’m unaware of why I’m down half of the time, but the next day, I get an idea based on where my thoughts were for the previous 24-36 hours.

So… what’s up with you guys… on the inside, that you haven’t shared on your blogs or on Twitter?