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Constant Reminders from New Friends

Donate LifeI’ve said on here a number of times that my/our plan is to never need a lung transplant, but with all of these bloggers (at least 4 have happened since I started CF Fatboy) we’ve found recently who are finally getting their new lungs/lives at the same time, it makes one wonder; wonder a lot of things. This is just about my wonderings, as things are doing great and getting better every week or month. There is always that “what if” in the back of my mind. It will never go away; I know myself too well to hope that I can put it out of my mind for good.

I have a lot of things going for us no matter the outcome of therapy method: cure or transplant. I own my own business, so hopefully we can have enough in savings to tide us over for any time I’d be down for the count. Even though most of the ordeal seems to be over in 2-4 weeks, we’d have so many one-hour trips to Tampa General it wouldn’t even be funny for trying to keep “office” hours… not like I really stick to office hours anyway with the trips I already have to take.

I am sure my clientele would be more than willing to work with me because I have the best clients in the world. They are delighted that I reply to e-mails same-day, even same-minute sometimes. If I’m out of commission for something that big, everything will be fine, and it might even be good for business. 😉 Who wouldn’t want to have their Web guy be “The double-lung transplanted WordPress guru of WordPress people?” That’s like wearing your Purple Heart next to your Medal of Honor.

You can be that I’ll be close to my iPhone under as many drugs as they want to have me on. I can already handle Vicodin and Xanax like a champ, so unless Percoset or an epidural is that much more of a horse tranquilizer, I’ll be blogging and working away in the ICU. You’d be amazed at the code and e-mails I can write while under the influence of heavy narcotics.

How bad will I get and how miserable will life be on the list?

I’ve been down to 24% FEV1 before, which put me on O2 for a month. That was downright miserable. I thought it was the end then, but I’ve been in the low to high 30s for a few years now, and I don’t feel miserable for it.

What will the trade-offs of the CF meds and the transplant meds be like?

I’m already taking a heck of a lot of stuff as it is, but I’m sure Beautiful would do a wonderful job keeping on top of the new routine. Will life be more easy or more difficult after the couple of months of physical therapy is over? Meds aside, there’s also paranoia about being around sick people and my vanity that would force me to take extreme measures to find the baddest surgical mask available, if not make one myself for mass-production.

What sort of experience would my transplant be?

I am seeing that darn near 50% of the recent transplantees are having stomach issues for weeks afterward, and that’s got me concerned since I had meconium ileus and am already missing 25% of my small intestines. Heck, I have issues just traveling and eating different food. I’m no stranger to surgeries, as I’ve had about 8 sinus surgeries, but I’ve never been out for 8-12 hours before.

How will Beautiful handle it?

She has been the best trooper, best supporter, and best coach a dude could ever ask for. Her biggest aversion is to people tossing their cookies, so I think that as long as that doesn’t happen, we’d be fine with whatever comes our way. I just don’t want to put her through it. Period… but if it comes down to a slow, painful wasting away or the hope of a more or less normal life where I can run races and be the athletic stud of my youth, we’ll take that risk in a heartbeat. With one caveat: if I go slacking off and needing to be put on the list because I’m not taking care of myself, there’s going to be some heck to pay from her, you can bet that. I’m already in enough trouble for being stupid between high school and this March, I assure you.

Go for CF standing for Cure Found

With the new VX drugs that are in Phase 3 now, I believe, there is hope of simply negating the effects of CF on the lungs, and possibly these darn sinuses. If I could be assured that my lungs will continue to biologically work like everyone else’s, then my biggest life issue would be my messed up digestive tract. Wouldn’t that be the most wonderful thing to have as an issue after all of these years?