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Advair Relief, at Last

Advair 500/50I’ve been blowing money on my Advair Diskus for years. That was my first thought when I saw how many CFers were on Advair 250/50 from reading their blogs. So I asked when I went to clinic last time. I’ve been on Xopenex puffers, but those darn things are a $50 co-pay!

“Why the heck am I on 150/50 when everyone else is on such a higher dose?”

The doctor left the room and brought me a sample of 500/50 and a puffer of Advair HFA 230/21 with a big grin. “That should do.”

I’ve been wanting to go on a low dose of Prednisone because of how good it makes my lungs feel, but (in his words) “we don’t want you breaking every rib when you cough after a transplant.” This is his steroid compromise for me, so I’ll take it, especially since the increases dosage does seem to be doing the job.

I read the inserts with the Advairs, and it sure seems to improve function tests, though I doubt they were using low-end CFers in the study – most likely just asthmatics – but the numbers were impressive and the co-pay for the diskus was only $35. We also got a $50 rebate from the clinic when we fill them, so every little bit helps when the bills keep coming in until we reach our out-of-pocket maximum for the year on non-Rx items.

Fatboy Flushes His Port – Video and Explanations

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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Monthly Maintenance: My Trip to the ENT

Smiling before...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.
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Great Clinic Visit

Well, folks, Beautiful was right. Again. She always is, so remember that, fair peoples of the world. I told her that I was feeling junky and concerned that I needed to get on IVs before vacation in June, so I moved up clinic to today. I was wheezy, but was hoping it was due to being an off month for my wonder aerosol. I started back on it yesterday and have had 4 doses so far – the wheezing has stopped.

Here is where it gets amazing: my PFTs were better than they have been for quite a while. Aside from results when I was on a study, it was the best since 2008. Here’s what is going on:

Date Weight FVC FVC % FEV1 FEV1 %
2/19/10 114.4 2.1 49% 0.98 27%
3/19/10 119.1 2.24 52% 1.24 34%
5/14/10 116.6 2.49 58% 1.32 36%

I got to see the head doctor today, which only happens about once per year, so that was a treat. He didn’t rush out either, because he chewed the fat about my graduation and work, and then moved on to talking about re-doing his medical site and forum for patients. I think it will move quickly, so I’ll be posting those as completed projects when they’re done.

This Saturday is the Tampa Great Strides walk, so I’ll be seeing my coordinator 3 times this week, since she’s on my walk team, too.

So the moral of the story is this: Beautiful’s ability to predict my health not only includes my being sick, but my wellness, also. If you ever want to know how I really am, ask her, not me. I clearly don’t have a clue.