Cystic Fibrosis Fatboy — Page 80 — The daily quest to gain weight

Fatboy Flushes His Port – Video and Explanations

May 31, 2010

You’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.

[Read more…]

Hide When Coughing

May 31, 2010

This entry is part [part not set] of 19 in the series What CFers Do

We’ve all been there: in the grocery store, at the mall, walking the shelves of the library, when, out of nowhere it hits you like a sniper bullet to the chest. You have to cough. There might not even be enough time to be conscious that it’s about to happen. Yes, your chest just went there! You’re just about to be publicly humiliated in one way or another.

There’s no time to make a decision! It’s time to duck, slide, glide, or shove your face into your elbow to muffle the 747 engines that just revved up. I’ve hidden behind produce islands to tie my shoe, ducked around shelves, put up newspapers, and slipped into empty rooms.

Your surrounding audience is going to perceive you one or more of the following ways:

as someone about to die on the spot
as someone suffering from the swine flu
as someone who should have stopped smoking 512,478 packs of cigarettes ago
as someone who is going to infect them with whatever made you cough like that

[Read more…]

Monthly Maintenance: My Trip to the ENT

May 29, 2010

I’ve lost track, but I believe I’ve had 7 sinus surgeries over the years. It’s between 6 and 8, for sure. I had my first one around the 4th or 5th grade, but my worst one was my second one when the surgeon realized during surgery that I had broken my nose over the summer and he BROKE it again, shoved 4″ plastics shin guards up there and stitched them through my septum! I was not a happy camper when I woke up. The shortest duration between operations was 9 months and the longest is my current streak: going on since 2004.

Nasal polyps are teardrop shaped, noncancerous growths on the lining of your nasal passages or sinuses. Small nasal polyps may cause no problems and go unnoticed. Larger nasal polyps can block your nasal passages or sinuses and cause breathing difficulties, a loss of your sense of smell, frequent sinus infections and other problems. – Mayo Clinic

I’ve got chronic sinusitis and had some really bad situations that were discovered during surgeries. One time, the doctor said that I had an infection in my frontal sinus (above the eyes) on the right side that had eaten through my skull and was in danger of infecting my brain. Every surgery has been called for because of sinus polyps and needing to open things up, which they call “scraping and windows.” I’ve only been operated on by two different surgeons, but never needed what they call “packing:” yards of gauze shoved into my sinuses for a week or two, which is very painful to remove. “Yay!?”

My Florida ENT retired last year after fighting and winning a round with cancer. I miss him a lot (only a CFer would say something like that), but I’m getting used to and liking his referral ENT now. She’s in the same office, so really the person shoving instruments up my nose is the only thing that’s changed in the last 12 years of ENT visits in Tampa. After my last surgery, we decided to do monthly flushes with antibiotics into the frontal sinus (through a very, very small opening) and the main maxillary sinuses.

So far, so good. No surgeries since and only a handful of sinus infections that required antibiotics.

Today, I have a treat for you: photos. I asked my new ENT, Dr. Janet Seper if she could have someone take photos with my phone so I could post them for the site for the benefit of others.

Warning: If you don’t want to see me looking uncomfortable, don’t continue. The last image is for the benefit of those who want to see what ails me and lives in my nose – as she finally got it out at the last moment with a special vacuum attachment, which you will have to click to view.
[Read more…]

What Is Your Dream For Cystic Fibrosis?

May 28, 2010

I found this on the CF Foundation’s YouTube site and it got me into a thinking mood about the future of cystic fibrosis. When I was born, the life expectancy was around 18. I’m 31 now and have met so many people in the CF community in their upper 30s, 40s, and even in their 50s.

I’ve said that I don’t plan on having a transplant, but I’ve also thought about what it would be like to take that first truly deep breath with “new”lungs. The reason I’m not planning on a transplant is because I think a cure is just around the corner. They’re doing genetic alteration with drugs now under testing. I know they won’t be able to reverse scarring damage to my lungs, but what would symptom-free lungs be like?

I’d imagine they would be at least twice as good. To have lungs twice as good as this is not worth skipping and going through the ordeal and lifetime of meds and appointments for a transplant.

I have a dream. [Read more…]

Fatboy Flushes His Port – Video and Explanations

May 31, 2010

You'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 … [Read more]

Hide When Coughing

May 31, 2010

We've all been there: in the grocery store, at the mall, walking the shelves of the library, when, out of nowhere it hits you like a sniper bullet to the chest. You have to cough. There might not even be enough time to be conscious that it's about to … [Read more]

Monthly Maintenance: My Trip to the ENT

May 29, 2010

I've lost track, but I believe I've had 7 sinus surgeries over the years. It's between 6 and 8, for sure. I had my first one around the 4th or 5th grade, but my worst one was my second one when the surgeon realized during surgery that I had broken my … [Read more]

What Is Your Dream For Cystic Fibrosis?

May 28, 2010

I found this on the CF Foundation's YouTube site and it got me into a thinking mood about the future of cystic fibrosis. When I was born, the life expectancy was around 18. I'm 31 now and have met so many people in the CF community in their upper … [Read more]

Time Elapsed Since IVs