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How a CFer Prepares for Sinus Surgery

October 8, 2010

Fatboy Has a Messed Up HeadMy ENT, Dr. Seper, saw me yesterday to review my CT scan from Tuesday and agreed with me that there were major issues. Largest of these issues was the increased, extreme headaches that have rendered me much less productive and constantly on Vicodin, which is barely touching this pain it’s making now, though it does let me look at my laptop screen and get work done.

She gave me two options for treatment:

  • start IV antibiotics for my sinuses for two weeks, but if I don’t have improvement by Monday, schedule surgery or
  • schedule surgery for Monday because she had a cancellation

“Door number 2, please.”

She started coordinating with Dr. Rolfe at CF clinic before I’d even left the office, so when I got down to the car, her office was calling me to say Rolfe wanted me on IVs immediately, so I was to call clinic now. I called Sue’s cell phone and we got things arranged to start me on Meropenem every 8 hours starting this morning.

Beautiful accessed my port before she left for work, because she does a better job than ANY nurse ANYWHERE (and if you want to try to challenge that, bring it on!) and I think she secretly likes playing nurse for a patient who doesn’t puke.

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Scar Tuesday – Show off Your Scar(s)

July 13, 2010
Meconium Ileus Scar

Meconium Ileus Scar: 1978 Style

I’ve got a huge meconium ileus scar that I’ve been self-conscious about my entire life. Now, in my old, fat age, it’s not stretching with the rest of my gut, leaving an odd-looking line across my midsection when I stuff myself after a good meal and I’m wearing a t-shirt that has become a tad snug around the middle. In fact, my favorite shirt I’m wearing to the right is starting to look a little ridiculous, so says Beautiful. I guess I have to agree at this point.

It wasn’t until I started following other CFers on their sites that I found out that there seems to be more who have a vertical scar than a gaping horizontal scar like mine. I’ve heard my dad say on a number of occasions that the surgeons really butchered me up with that first surgery – probably because it was 1978 and they didn’t give me much of a chance of living past 5 or 10, so what did it matter what my scar looked like.

Now, it’s a bit of a nuisance to the point that I’d consider some cosmetic surgery to re-align all of my muscles to get a beautiful 6-pack and get rid of anything in there that is pinning my scar in tighter than the surrounding area. A middle-aged gut on a CFer is a badge of honor that I will wear with pride, though I’d rather work back down to a washboard and maintain this weight.

My other scar

Port ScarMy other “big” scar is from my port when I was picking at the scab, not realizing how it was pulling apart while healing because they only used that 3M glue bandage that started peeling after a couple of days. The more I picked at the itching incision, the wider and more transparent the scar turned. This probably isn’t the best shot of the scar, but I haven’t found that new camera I’ve been looking for yet to take nice macro shots.

You can link to an external photo, such as Flickr or your Facebook or Posterous account in the comments, and it should show up for us if you want to show off your scar in the comments. Otherwise, tell your story on your blog and link to it with Linky Tools below with a mention/link to this post in your post so people know what’s going on.

Fatboy Flushes His Port – Video and Explanations

May 31, 2010

The Fatboy portYou’re in for another treat: another video post! The photo to the right – you guessed it – that’s me. Sunburn and all. I’m hiding my gut because I’m so fat! Hah, not really; that is how I stand in public with my shirt off, so it’s a good representation of how it blends in now that I’m beefing up more. It used to be super-obvious when I weighed 95lbs!

Update: 7/20/2010 – my port has all but disappeared at 135lbs. It just looks like a flesh wound instead of an alien implant.

I got my port in 2006 when my last PICC line took a radiological surgeon to thread the tube through the valves in my upper arm. Both arms were shot for access with a PICC line. I was a bloody, mad mess with 2 failed PICCs before that surgeon got one in. The doctor said that the next time I went on IVs, I was getting a central port. About 3 months later, there I was, scheduled for a twilight operation with my dad in tow to transport a heavily sedated sickboy back to his apartment.

I was pretty depressed about it. We were getting married in less than 2 months and here I was getting a big titanium bulge shoved under my skin and ended up with a less than flattering scar because they didn’t use sutures.

I was marked. Tagged. A permanent, unavoidable freak. Buy, hey, I was used to it because I’ve always had a huge scar across my gut from surgery at birth. Just one more set of people who didn’t expect me live, I suppose. Who cares what the scar is going to look like if it’s only going to be there for a few years, right?

Now that I’ve had my port for almost 4 years, I wouldn’t trade it for another PICC line for anything short of them paying me several tens of thousand dollars any time I went on IVs. I don’t need diddly to start treatments now. The meds show up at my door, Beautiful stabs me and puts the dressing on, and we start doing drugs. The only pain we have to endure is monthly flushes to keep the tubing clear inside. We recorded it this time so anyone who is considering getting a port can see how easy it is.

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