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Leaving on a Jet Plane…

Airport SecurityIt sure does take a lot of work to pack for a plane trip vs. a road trip. We had to check the regulations because they seem to change every 3-6 months as we get more and more removed from 9/11, yet constantly reminded with scares and dry runs that keep getting more regulations in place.

I got a letter from my CF doctor stating that I have cystic fibrosis and will be traveling with [several medications including these listed, but not limited to] and invited them to contact him directly if they have any concerns about what I’m traveling with. That brought a certain special peace of mind, considering that we have over $30,000 worth of medicine and equipment. Each dose of some of my meds is over $30 and my Vest was over $11,000. They will not be leaving our possession, that’s for sure.

To give normal folks and those with various milder forms of CF, here is what we’ve packed:
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More Testosterone Production With More BMI

Do Not Make Me AngryTestosterone is a powerful drug! I wrote a while back that I had a painful side effect that started up sometime around June, if I recall correctly: very tender… uh, boobs. I mentioned parts of this last week in my clinic post, but here is the official article on the topic after the test results are in. I’d read that can happen from too much testosterone when on therapy, but the doctors said “no” to the medicine I found on the Internet as a solution to the symptom until they saw me at clinic to see what was up.

It wasn’t so much of a surface tenderness, but a semi-dense mass underneath the skin that is quite painful to any pressure at all. Sue told the doctor that he had to give a breast exam as she left the room to do more paperwork. Unfortunately, this was the first time in about 3 years that Beautiful joined me at clinic and he was startled and shot back with a quick, “what!?” as Sue quickly said, “on Jesse!”


His software and my latest blood draw made him suspicious that I was getting too much testosterone because, to quote the good doctor as best I can a week later, “you’ve gained weight and now your gonads are making their own testosterone now.” Beautiful and I recalled that anorexic women go barren when their BMI is that low because the body is just in survival mode. That is what had been happening to me for… my entire adult life since I was never really at a healthy BMI.

I just so happened to not do my shot yet that day, just in the event that they needed to do a trough blood test to get to the bottom of my symptoms, which they did want and did take. The results came in today: high. Beautiful’s response was darn near, “I told you so because you’ve been quick to be mean,” which has been her plight for weeks, saying I was short-tempered and my first reaction was to be defensive and harsh. So, dudes on hormone therapy, listen to your womenfolk when they say you’re a meanie and go get your blood drawn for a trough measurement. I was over the limit at my trough, so I wonder how high I was at my peak on Saturdays or Sundays.

Now, if you’ll excuse me, I’m going to go watch some HGTV and cry during the reveals while I consider new color choices for our table settings.

Adult Cystic Fibrosis Clinic at Tampa General Hospital – Part 1

Little FatboyI’ve never really talked about going to the Adult Cystic Fibrosis Clinic at Tampa General Hospital, so here is Part 1 of my clinic visits.

Growing up in Northwest Ohio, my home clinic was in Toledo, which was a 40 minute drive for us up I-75. I remember that we always had two to four CF doctors in the program, we would often wait for 2-3 hours to get seen by a doctor, and by the time we got out, I was passing out and needed my Taco Bell lunch treat or I’d die. They liked to put me in the hospital a lot and I never, ever had a private room.

Times have changed, my friends. The doctors have gotten smarter and I’ve gotten way, way smarter now that I’m in control of my heathcare with Beautiful as the executor of my dosages. After I start my tale about yesterday’s clinic visit, I’ve got some tips about clinic that you should have to pay me for, so keep reading.

We pulled up to the valet service right at 6:50 for my 7:00 appointment (7:20, really) and informed “the new guy” that we were going up to Harborside 300, which is code for “I get to park for free, so give me the blue ticket.” CFers and transplant patients get free valet service because the parking garage really takes a toll on you – I know, because I was using the garage and getting a voucher when I was in my 20%s and should have been using the valet. Now I know.

Clinic Lobby: EmptyThe waiting room was barren, as normal at that time. I rarely see any other patients before I’m all the way back to wait for the doctors and Sue to arrive, so I don’t even bother with a mask unless someone freaks out, which has only happened once. That early in the morning, it’s a quick stop at the scale, off to the CF waiting room for about 2 minutes (I don’t even bother sitting down) and then across the hall to vitals where I tell them my blood sugar, they take my blood pressure, temperature, and O2 sats.

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Quarterly CF Clinic – Going for Bust

My CF Center: TGHMy quarterly CF Clinic day has arrived at last! This will either be a multi-post day or I’ll be updating this after clinic. Most likely the latter, but who knows? It’s been quite the 3 month wait this time. Let’s recap some historical data and my recent changes in my regimen.

I was 119lbs in June and blew a 36%. I got a monster stay-at-home blockage that turned my stomach into a small prune and messed with both my appetite and body for weeks. I’ve started on twice-daily Dulcolax and if I don’t take it, I get a thromboid external hemorrhoid, which is getting excised today at my PCP (poor guy – poor, poor me!). We’ve upped my Zenpep from 5-7 with meals to 8-10 with meals. I even try to take 5 with my Boost Plus. The last week has been pretty good, so I think that was a good move. I’ve been hovering around 130lbs since the blockage, but have hit 125 in the mornings before. I hope today is not one of those days after my hard-earned 135lbs.

My goals for this clinic:

  • weigh in at or over 130lbs
  • blow a 38%+ FEV1 (I’d love if it was a 42%)
  • have them tell me about a few odd symptoms I’m experiencing

We leave for clinic in about 90 minutes, so I’ve moved up all of my meds an bit since I’m usually getting up at 5:30 or 6:00. Everything is running in high-efficiency, multi-tasking mode now. I’m holding my colistin nasal neb and typing one-handed now. I’ll keep you posted.

Post-clinic Update

We were in and out of clinic in an hour, which included a business meeting with the doctors about the website I’m working on for them. My O2 sats were 97%, which was really disappointing after it started out at 100% for the first 5 seconds as my heart skipped several beats with shock. PFTs first:

Date Weight FVC FVC % FEV1 FEV1 %
8/20/10 132.3 2.58 60% 1.37 37%
5/14/10 116.6 2.49 58% 1.32 36%
3/19/10 119.1 2.24 52% 1.24 34%
2/19/10 114.4 2.1 49% 0.98 27%

Improvement instead of decline is always good news. For as tight as I feel today, I am sure it would be higher in the afternoon. My peak flow plummeted from 68% to 49%, so I’m definitely tight, eh?

I’ve been complaining about sore nipples – weird, huh? He looked it up and confirmed that it was my testosterone levels and wanted to do a blood draw today since I haven’t done my weekly shot yet to see what my levels are now. He said that what happens at lower weights is that the reproductive system shuts down (I’ve read that CFer women can’t get pregnant when they have too low of a BMI because their cycle stops) and now that I’m at a healthy weight he is suspecting that my levels have risen. Beautiful has been complaining that I’m constantly short with her so maybe I’m raging every day like a bull shark. Look out, don’t get bitten!