Clinic visits and figuring out details related to planning for future events always turns my mind towards transplants. I’m sorry if it depresses you, and I know I’ll be scared bowel-less in pre-op if that day ever comes (even though my doctor said “we’ve never lost anyone on the table”), but some people also need to be reminded that this as a reality of CF. Unless there is a cure before my bugs become resistant to every treatment available, it is inevitable sometime down the road.
What I have been thinking tonight, though is among the happier thoughts related to transplants. I’ve been down hard with the combination of recovering from a cold, my quarterly Boniva injection, and a triple flu shot on Friday. Until today at lunch, I’ve been blob-like, unmotivated, and going between hot and cold flashes faster than, well, moving on… I don’t think that much of my missed time from my client work will be directly related to my ability to do what I do. It takes very little physical effort to type and drag my finger around my trackpad. I do need to have a clear mind, though, and I have read that can be an issue with the meds and getting the right dosing and cocktail working.
Knowing myself, I think my biggest issue after an event like that will be motivation. I’m pretty sure I’d come back home and it would be similar to when I graduated from college: “now what?” My working so hard right now is very much motivated in planning for the future. When that future comes, what will I have on my horizon? I’ve had plenty to do this weekend, but I haven’t felt able to do anything until after lunch today.
Why? I have no idea why. I just know it’s been impossible to sit at my desk or on the couch with my laptop and do anything to the benefit of my clients or our checking account. Now that I had a good weekend of rest and got some work done today, I’m confident that I’ll be able to go out and kill it this week. We’ll just have to chalk this weekend up in the “getting rest so I don’t burn out or get sick” column.
Yes, I have a column called that for days like this weekend.
I’d be very interested to hear from those of you who’ve been through a txp or have also thought similar things as me. What kept you from working/do you imagine will keep you from working?
For those of you who don’t notice or subscribe to the normal “holiday” of April Fool’s Day, that’s when this was written and what it was written for. It is so far over the top, if you’re not laughing your head off, there is something wrong and you should go get it checked out. Enjoy!
I’m back home already from this morning’s bionic lung transplant! Wow, these new lungs are AMAZING!! Since they basically are ventilators, they didn’t need to put me on a vent or anything when I came out, so recovery was just a matter of hours. Also, without having a lot of foreign tissue taking up a lot of space, they said the swelling they expect didn’t require putting in drainage tubes, so they sent me home after I could eat a meal and go to the bathroom.
I highly recommend bionic lungs! Here are a few things I’ve noticed or done since I woke up:
- I can sing the National Anthem in one breath.
- There is a certain face I can make that causes the lungs to sound off like humpback whales.
- When I jump up and down, they make a cartoon-like “boingy-boingy-boingy” noise.
- Running all the way home from the hospital was very exhilarating, especially with all of the construction.
- My vision is suddenly 20/20.
- My farts smell like roses.
Excuse me, but I’m going to go list all of my equipment on eBay now.
For those of you who don’t notice or subscribe to the normal “holiday” of April Fool’s Day, that’s when this was written and what it was written for. It is so far over the top, if you’re not laughing your head off, there is something wrong and you should go get it checked out. Enjoy!
Thursday ended with a huge bang with a call from my CF center to come in at 4am for an opportunity to be one of the first CF patients to receive bionic lungs! It’s been something I’ve thought about since the old movie “The Six Million Dollar Man” reruns back in the 80s. I’ve gone back and forth between wanting bionic lungs and lungs harvested from some sort of genetic clone of myself (like in Steven Cook’s “Chromosome 6“), only with healthy lungs, from something like a fast-growing monkey or pig that would eliminate the need for anti-rejection drugs. That’s what we’re all concerned about one way or another with a lung transplant anyway: rejection of the donor tissue or getting sick from a suppressed immune system.
They’ve been working on materials to coat implants of this size to avoid the body from attacking it as a foreign object and have finally figured it out. It’s coated with a polymer that mimics normal organ fascia. They discovered that fascia isn’t recognized by the immune system, only actual organs, so once encased in this polymer, it remains invisible to the immune system and it’s only connected to the body with proven materials used in stent and defibrillator surgeries.
The plan is to remove my lungs only after they test the system outside of my body, just in case there is an issue. That’s the beauty of this technique because they can hook it up with extra tubing for my circulatory system and pump room air into them, all from a table next to me, and only remove my lungs after everything checks out.
The super-cool thing is that the bionic lungs are 1/5 the size of natural lungs, so they are going to pack my body with a combination of bio-friendly styrofoam and expanding foam insulation Click to continue reading this article…
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.
There’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. Click to continue reading this article…
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CF Fatboy is a small business owner flourishing in Tampa, FL. He and Beautiful have been married for 5 years and are doing everything they can to ensure they have a long life together.