From the Blog

The Coolest Medical Procedure Iโ€™ve Ever Had

This entry is part [part not set] of 4 in the series The History of Fatboy

Surgical TrayWe, as CFers, are no strangers to uncomfortable, if not horrible, medical procedures. Enemas, enteroclysis, PICC lines, central ports, and a slew of sinus surgeries. Today, I get to share with you the coolest procedure I’ve ever had done to me.

I can remember having issues with my meconium ileus scar getting infected since the 7th grade or so. Over on the left side was a dot of a hole on each side of the scar, as if I’d had my belly pierced. I often wondered if I could thread a paperclip from one side to the other. Every month or two, I’d notice it start to turn red, puff out, and then become a pussy mess that I could squeeze clean over the course of a few days. It happened without fail.

After this had gone on for years (I think I was 18 or 19), I finally decided I’d had enough of this and decided it warranted going to my primary care doctor to look at it. I was still going to a pediatric doctor since I hadn’t transitioned both my CF and non-CF care to adult services, so this may have been one of the coolest thing she had ever done.

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Fatboy, Stop Your Bellyaching or Get Enteroclysis

Fatboy Has IntestinesI’d love to, but my belly still hurts. When I eat or drink, when I’m not occupied with other activities, or other activities put my abdomen to use, nearly a third of the pain of Wednesday returns. Aside from little updates on how I feel, I promise this will be the last you hear of this blockage for a while, ‘mkay? Before you keep on wondering as you read on, missing my good writing material while wondering, yes, those are my intestines a few days after my December blockage (December 29th, to be exact). I got it in just before our insurance would have made me pay a huge deducible (unbeknownst to us, but I wasn’t willing to risk it and pushed for a 2009 test date).

Let’s be positive for a second, since I am an eternal optimist, according to the resident expert on Fatboy: Beautiful. On a super awesome note, I kept track of my weight through the ordeal, and I must say, Fatboy responds well to being fat. Here’s what happened. Pre-blockage: 134/135. Post blockage: 125. Last night: 129. This morning: 131. It was clearly sweated weight loss due to the combination of using a heating pad whilst lying on a leather sofa all afternoon and night long. I forgot to weigh myself tonight, but I’m certain it’s at least 133, just 2 days after going hours consuming little to no calories.

Trouble continues

I can tell you exactly where the trouble continues: right at my bottleneck spot. The continual cramping and straining against the mass that had me blocked makes for a very tender area of gut. I don’t know if the mass needs to be big and is continually stretching and straining the smooth muscle with the peristalic action.

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Emotional Evening, and I’m not the One Getting New Lungs

There is something emotional to the core about Cystic Gal getting her new lungs tonight as I type. She is currently under the knife having her wretched, diseased lungs carefully removed from her chest cavity. Beautiful said she felt the same way when Piper got her lungs, but I wasn’t following Piper like I have been CG, because CG is all over Twitter and the blogs with comments and such.

Beth Peters (CG) is my first cystic fibrosis friend to receive her dream of new lungs. Everyone else has become a friend post facto, at the very earliest with me finding out they got “the call” and following them as their transplant day progressed.

Beautiful asked me what I was feeling about her transplant before she went to bed tonight. I couldn’t quite put my finger on it because it’s not like we’re great friends, but we have hundreds of tweets going back and forth and understand each other pretty well. We are both fighters. She’s going this alone in Boston, and I have to respect that a ton.

My eventual answer was I’m feeling emotional because, barring a cure that prevents CFers with my level of pulmonary damage from ever needing a transplant, this will happen to us someday. I’m banking, praying, and working towards health and a cure, but I’m witnessing what could be exactly what we experience some day in the future. It’s scary. It’s exciting. Did I mention that it’s scary and exciting?

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A Night and a Morning in the Hospital

My ER: TGHWe left off with Part One with an inconclusive contrast CT scan, a super slow staff, and a previously unmentioned multitude of requests that they call my CF doctor, who is on staff in the building, to let him know I’m in the ER that has gone unattended to for over 12 hours. We now know to call the on-call doctor on the way to the ER or call the coordinator if it’s during the day. I’m not messing around with blockages any more – I may even opt for corrective surgery the next time, because I really can’t describe the pain and suffering that goes on during a 24-52 hour blockage.

The only good thing that comes from a blockage is the relief afterward. However, even that was taken from me this time.

Oh, now you’ll listen to me anyway?

After hours of hammering them with my requested treatment method using reason, history, rage, and anything else I had available in my condition, they finally sent me down to radiology to get my enema. Long story short, I waited in the hall long enough for my morphine to wear off so I could experience the full torment of radiological hell without pain relief, but the treatment worked and I was sitting happily on the gurney waiting to be wheeled back to Beautiful when I gave them the “all clear” sign that I was “all clear.”

It didn’t take long back in the ER for me to realize that I wasn’t completely clear, though. I was very, very tender, along with an abnormal mass where I have my bottleneck. I was thinking that it only cleared out some of my problem, but that I’d had so much to eat at Outback that it just got re-plugged with that partially-digested food. Things still weren’t right.
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