Dayton USAF Museum - ยฉ2010 Jesse Petersen
Adult Cystic Fibrosis Clinic at Tampa General Hospital – Part 1
August 21, 2010
I’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.
The 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.
Quarterly CF Clinic – Going for Bust
August 20, 2010
My 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!
Ever-Improving CFers on the Rise
August 19, 2010
It’s been three months already, so it’s time to make my trek back to Tampa General to see if I’m still improving with age. My numbers have gone up since going completely compliant in March, so that trend should continue unless I’ve just come down with something this week with Beautiful being sick. The goal this visit is to blow a 40% FEV1 and a 42 would make me ecstatic (it’s a “Hitchhiker’s Guide to the Galaxy” thing). She is coming with me on a very rare trip to clinic because she has to be at work at 8am and my clinic appointment is always at 7am. She just told them matter-of-factly that it is my clinic day and she is going with me. After work, she has an appointment with an ENT/Allergist to see what is ailing her.
I’ve seen a lot of clinic visits being posted and tweeted about with great results with my new-found friends with a couple of unfortunate hospitalizations and a bad case of c-diff. It almost seems like everyone is doing a better job taking care of themselves and the meds are working. Go figure!
It doesn’t come without sacrifice on one end or another, though. For us, it’s co-pays out the nose, making budgeting impossible. For others, it means being on disability (which means you darn well better be compliant if you’re just sitting at home, right, right?). For others, it’s just a hard life that I used to live with a split life of work, school, family, and treatments. I’ve only crossed off school from that list, but once you enter into the family part, it’s a whole new world.
Adult Cystic Fibrosis Clinic at Tampa General Hospital – Part 1
August 21, 2010
I'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 … [Read more]
Quarterly CF Clinic – Going for Bust
August 20, 2010
My 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 … [Read more]
Ever-Improving CFers on the Rise
August 19, 2010
It's been three months already, so it's time to make my trek back to Tampa General to see if I'm still improving with age. My numbers have gone up since going completely compliant in March, so that trend should continue unless I've just come down … [Read more]
