From the Blog

Can’t Get No Satisfaction

No Satisfaction

Where's my satisfaction?

Sometimes my life feels like the song: Can’t Get No Satisfaction. Friday is yet another landmark day for us in our adventures with my newly troublesome sinuses. It’s beginning to look like my long honeymoon without surgery has come crashing completely down since October. I have a follow-up with my ENT Friday after lunch to decide if we need to be more aggressive with his reconstruction of my head.

The scoop

One of the most annoying things for the last year or more is the constant smell in my nose. It varies between smelling like a wet dog and soggy Corn Chex, depending on the infection of the month. Far, far worse are my headaches, even though they aren’t as persistent as the smell is. Every morning is a new day with a ton of gunk in my eyes, a completely stuffed nose, and that smell.

I take a lot of CF in stride, but this is getting on my last nerves. How many times can I tell clients [Read more…]

To G-Tube or not to G-Tube

g-tubeOne of our closest online CF friends is struggling with a decision about whether or not to opt for a g-tube for her sweet baby boy. He started out life quite chunky but has reduced to the 5th percentile now that he’s around a year old. She’s asked for wisdom with the decision, so I offered my 2 cents, which she has since insisted that I give… so here it is for open discussion.

Make no mistake about it, a g-tube is a huge deal. I’m not sure if my parents ever struggled with that option for me or not, but I do remember a time when they were really being pushed by the doctors to do nightly NG tube feedings, but I have a serious gag reflex and have puked every time I receive one. Sorta defeats the benefits right off the bat when you lose your dinner before bed, in your bed.

In my opinion, there has to be an ever-present consideration for emotional well-being that ranks just below health well-being. Beautiful has told me more than a few times to stop thinking about my bad parts about childhood related to school, the other kids, and how being the odd one out most of my life shaped a significant part of my personality. I was, simply put, different. Kids are both the meanest monsters alive and the sweetest creatures created, all in the same package. They both pick on anything they can see that is different while ignoring many obvious handicaps. To me, adhering to a medical textbook’s guidelines of what is healthy at the expense of childhood development is a potentially more severe problem waiting to happen than anything associated with being a low weight, as much of a pro-weight guy as I am. Now for some explaining on my part.

I was a chubby little guy as a toddler, despite my big meconium ileus surgery that had me on super-weak formula for months. I’m pretty sure my mom still has the growth charts of my height and weight percentiles from the early years, but I remember myself being in the 5th percentile on height for as far back as I can remember. I was in a class of 72 kids and only 2 others were close to my height, but both were still taller by a smidge.

[Read more…]

There and Back Again: Surgery Recap

Post-OpMaybe Number Ten is a lucky number, at least regarding sinus surgeries. Here’s a recap of both my sinus history and this latest one.

I had two or three in Ohio by the time I was 16 and then the next 5 or 6 in Tampa with one ENT by the time we got married when I was 27 with Number 9 being with a new ENT after my long-time ENT retired. That was in October. Fast-forward 2 months and my headaches were nearly describable.

A new CT scan showed my sinusitis was worse than before my surgery, but this test result came after an overnight O2 test and a full sleep study that put me on an AutoPAP for nighttime desaturation, a common cause of late morning headaches. The CT scan led to a second opinion with a doctor who operates out of the same hospital as my CF center, and he suggested a cleaning under general anesthesia with some reconstructive work on my septum as a therapeutic option because he wasn’t able to physically access many of my issues in the office due to my anatomy as-is. Surgery was scheduled for January 6th.

My calendar tells me that today is the 8th now. Surgery feels like months ago already because this was (by far, without exception or exaggeration) the absolute best surgical experience I’ve ever had… with very few hiccups.

[Read more…]

Fatboy’s Top 10 List of Surgery Fun

DruggedBeing my 10th surgery that I remember (my surgeries at birth are obviously pre-memory), I have a decent amount of experience to draw from for looking for the silver lining related to surgery. Sure others have more experience in the surgery department, but this is definitely my personal top 10 fave things based on my experience:

  1. Pigging out until midnight has long been a favorite pre-op ritual for as long as I can remember. Who wouldn’t want to stay up late eating steak, rice, and lots of drinks before being starved half to death the next day?
  2. Now that I have a port, I am allowed to both be pleased to out-smart the staff by coming in pre-accessed and annoyed when telling them to walk away from me with either the IV kit or port kit, with the former being a bigger sin since my port is in my pre-op paperwork.
  3. Getting to be cared for the top-notch staff in a hospital is a nice treat. The people in the surgery center are the best, probably only bested by transplant teams. I simply love getting the best care available, even if only for a couple of hours.
  4. Ever since my first sinus surgery, I’ve remembered the operating room being cold and getting a hot blanket straight out of the dryer, or seemingly, an oven. That sure makes you feel cozy no matter how stressed before.
  5. This one is new, but thanks to technology, I loved doing Facebook and Twitter action before and after. Having all of one’s friends (local and Internet-based) watching over your progress and cheering you on really helps pass the time and lift the spirits.
  6. Morphine. Need I say more?
  7. Getting to sit on my butt for 2-4 days afterward and be afforded some extra level of “let me do that for you” is really nice. It’s 100 times harder for me than it used to be now that I’m a (read the) provider [role] for our family, but I’ll be able to fully stick to that plan to recover fast because I won’t feel like I have to work to put food on the table this time. Quite a blessing to be cared for such a beautiful and caring Beautiful.
  8. That shot of Ativan in pre-op right before they wheel you into the OR is fantastic (see photo above for visual proof)! If I were to consciously choose to be a druggie, I’d do Ativan. Of course, I wouldn’t do any work, we’d run out of money, we’d lose our house and my health insurance and I’d die within a few months, but I’d die relaxed, eh? Okay, bad idea, but that’s some really good stuff.
  9. Waking up a split second after closing my eyes in the OR is the freakiest thing in the world, and I love it! I could definitely do without the traditional question of asking the nurses for the license plate number of the semi truck that hit me in the face, but you can’t beat that wild trip doing anything legally.
  10. Waking up and seeing Beautiful come to my bedside in recovery (before we were even dating once) each of the last 3 times is something I always remember and will always look forward to. What a woman!

Tomorrow, given the time and boredom not granted while being constantly tended to or asked questions or told what to expect or spending quality time with Beautiful, I’ll be writing another post from the bowels of TGH before my purported 10am surgery. Maybe it’s not so realistic to expect one from me, but maybe something will pop up on Kristinology during surgery or post-op, so be sure to check there if nothing is happening here. We will likely be requesting to stay the night due to my bleeding and motion sensitivity that I experienced in October.

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