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What Is it Like to Be Different Because of Cystic Fibrosis?

Traveling OverseasOne of my little CF buddies is down about his being different because of CF. I’ve been working a lot on empathy recently, and I can super-relate to how he feels. Growing up with CF wasn’t easy for me. In fact, growing up wasn’t easy at all, and many who know me really well would argue in fun that I still haven’t grown up even though I am 32 now. Why, just tonight I make a crack about beans and musical fruit in mixed company. /sigh

This is going to be a rough ride, but I want to let every single CF kid who reads this or has this read to them to know that I understand some, most, or all of what they are going through – because I’ve been there, done that, and now I wear the t-shirt. Am I over all of it? No, not even close. I could probably still spend another 2 years in weekly counseling to get over my past. It still haunts me and it makes Beautiful very sad to hear me speak of it. Reading all at once will probably make her cry.

My intent is not to make anyone sad, place blame, or bring up old stuff as a way of making people feel bad about any of it. People did their best with what they had, most of all my parents who had to deal with financial issues having two kids with CF and losing one and having quite the impossible one who survived. While I’d change a million things about my life, I wouldn’t change my family.

The key is to not wallow in it all of the time, forever. I don’t. I shouldn’t even think of it as often as I do, but social triggers are everywhere.

School

School was especially difficult for me for a variety of reasons:

  • In a class of 72, I was one of the 2 or 3 smallest boys (and girls) every year.
  • I had glasses. Not just any glasses, but the plastic ones because I was always breaking them by playing rough or getting roughed up.
  • I was really smart, which got me disliked, so I switched to acting up, which just made my life miserable with my teachers and parents.
  • I was in the hospital a handful of times during school, but usually 2 weeks every summer and I started with the sinus surgeries around the 4th grade every couple of years. I remember one year, my entire class drew an outline around someone on a roll of paper and everyone signed it with a “get well” note. We kept it for years, and I wouldn’t be surprised if Mom still has it.
  • Because of antibiotics and a couple of colds, I had managed to have a couple of unfortunate accidents of a #2 variety at school when I had the misfortune of not recognizing that the pressure was not gas. Those memories stuck in everyone’s mind forever and was something that wouldn’t have happened if I wasn’t different and I was smart enough to know that.
  • Because of school policy from kindergarten to my senior year, I had to go to the school nurse every day for my enzymes. For 3 long years, that meant walking 200 yards to the newer elementary building from the old building that was 4th-12th grade in the rain and snow. I was singled out every day without exception. Constantly reminded that, “no, you are not normal, and you never will be.”

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Back Home Already

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!

SmilingI’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.

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:
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