From the Blogposts » inbox

Bionic Lungs: Opportunity of a Lifetime

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!

Bionic LungsThursday 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 [Read more…]

Using Cystic Fibrosis As a Crutch

CrutchThe opportunity to allow people to think I’m using cystic fibrosis as a crutch is the main reason I don’t let people into that area of my life too early. I discussed the topic of when to tell others a while back, and while I have decreased my incubation period significantly since starting this site, the principle remains in effect for a large part.

The words found below do not apply to CFers who are home-bound, hospital-bound, or confined to their bed until a transplant donor can be found. They have our utmost respect and compassion. I will be very thorough in my explanations to avoid any ill feelings, as this is a reflective, introspective topic for discussion.

I have lived two separate lives, each of which has been made up of various compartments. I believe that compartments are a highly effective method of coping and thriving with a chronic disease that can not only cause suffering conditions, but death at a progressive rate from normal life-expectancy averages. Before I move on, I want to be clear about this point as well: suffering conditions does not mean that each CFer is forced to live a life of suffering, as we discussed recently. If you’re too busy to read it now, the summary sentence is: “we don’t suffer from CF, we thrive despite it.”

One life: before I “had” CF

It wasn’t much more than a year ago that I didn’t “have” CF. That life consisted of two CF-related compartments:
[Read more…]

Race to Be a Millionaire


Photo credit:

To be a millionaire would be a wonderful thing, but I have much loftier goals than most when they say such a materialistic thing. Stories of millionaires, how they made something of themselves out of nothing, inspire me to no end. I could read and listen to them all day every day… if knowing about them would change anything about my life. What I’ve heard so far has changed me.

The Secret Millionaire

Have any of you seen the new show ‘The Secret Millionaire?” It just started a few weeks ago and is about a millionaire each week who goes undercover in a needy area and finds people who would responsibly use or distribute a gift from them to help others in the community. It’s left me in tears without exception. I want to give that badly. It brings back memories of the last few moments of ‘Schindler’s List’ when he is pulling out his pen, coins, and his ring to save just one more person.

Deep down, I am that person.

However, deep down, I am not ready. I am not ready because I have not provided for my family yet. I would not be the man, the husband, I am supposed to be if I spent our savings on others and left us in a bad situation that put me in the hospital or worse. I would be a failure if something happened to me and Beautiful lost the house and had to move back home. I have a plan. She is helping me with it by taking care of my burdens to allow me to be better able to take care of my own load that is called “staying healthy” and “running and growing our business.”

The race is on

I won’t hide the fact that I am out to get money because it is not the love of money that drives me but simply what money provides in our society. If providing for my family meant that we had to have a lot of friends, you know I’d be a social butterfly, but we all know that’s not how it works. The system is quite simple, actually:
[Read more…]

Yesterday’s Thing: I Outrun CF

I Outrun CFYesterday was the great, national Outrun CF virtual run day! CFers, family, and friends everywhere signed up for a DIY outing wherever, however on the same day under the same name. It was really pretty cool to see people putting up their times and distances on Facebook throughout the day!

Since it’s been over 2 weeks of trying to get my new antibiotic to take care of my sinus bug that has also been causing some lung issues, running was not going to be an option. Beautiful came downstairs dressed to go out and I proceeded to cough my head off for the next 2 minutes as I put on my shoes. Yeah! Really ready to go out, eh? We had already decided to walk instead of run, but with these circumstances, any other ideas I had of being awesome went right out the window.

Being a beautiful March day in Tampa, it was well over 80 degrees, so even with the delightfully thin “I Outrun CF” shirt, by the time we walked up and down our street, I was sweating down my back and we called it a day. I’m over 30, not on O2, not on IVs, and I’m not on the transplant list, so walking up and down the street was still kicking CF’s butt.