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.
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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 % |
| 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% |
| 8/20/10 |
132.3 |
2.58 |
60% |
1.37 |
37% |
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!
We, as CFers, are no strangers to uncomfortable, if not horrible, medical procedures. Enemas, enteroclysis, PICC lines, central ports, and a slew of sinus surgeries. Today, I get to share with you the coolest procedure I’ve ever had done to me.
I can remember having issues with my meconium ileus scar getting infected since the 7th grade or so. Over on the left side was a dot of a hole on each side of the scar, as if I’d had my belly pierced. I often wondered if I could thread a paperclip from one side to the other. Every month or two, I’d notice it start to turn red, puff out, and then become a pussy mess that I could squeeze clean over the course of a few days. It happened without fail.
After this had gone on for years (I think I was 18 or 19), I finally decided I’d had enough of this and decided it warranted going to my primary care doctor to look at it. I was still going to a pediatric doctor since I hadn’t transitioned both my CF and non-CF care to adult services, so this may have been one of the coolest thing she had ever done.
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I’d love to, but my belly still hurts. When I eat or drink, when I’m not occupied with other activities, or other activities put my abdomen to use, nearly a third of the pain of Wednesday returns. Aside from little updates on how I feel, I promise this will be the last you hear of this blockage for a while, ‘mkay? Before you keep on wondering as you read on, missing my good writing material while wondering, yes, those are my intestines a few days after my December blockage (December 29th, to be exact). I got it in just before our insurance would have made me pay a huge deducible (unbeknownst to us, but I wasn’t willing to risk it and pushed for a 2009 test date).
Let’s be positive for a second, since I am an eternal optimist, according to the resident expert on Fatboy: Beautiful. On a super awesome note, I kept track of my weight through the ordeal, and I must say, Fatboy responds well to being fat. Here’s what happened. Pre-blockage: 134/135. Post blockage: 125. Last night: 129. This morning: 131. It was clearly sweated weight loss due to the combination of using a heating pad whilst lying on a leather sofa all afternoon and night long. I forgot to weigh myself tonight, but I’m certain it’s at least 133, just 2 days after going hours consuming little to no calories.
Trouble continues
I can tell you exactly where the trouble continues: right at my bottleneck spot. The continual cramping and straining against the mass that had me blocked makes for a very tender area of gut. I don’t know if the mass needs to be big and is continually stretching and straining the smooth muscle with the peristalic action.
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We left off with Part One with an inconclusive contrast CT scan, a super slow staff, and a previously unmentioned multitude of requests that they call my CF doctor, who is on staff in the building, to let him know I’m in the ER that has gone unattended to for over 12 hours. We now know to call the on-call doctor on the way to the ER or call the coordinator if it’s during the day. I’m not messing around with blockages any more – I may even opt for corrective surgery the next time, because I really can’t describe the pain and suffering that goes on during a 24-52 hour blockage.
The only good thing that comes from a blockage is the relief afterward. However, even that was taken from me this time.
Oh, now you’ll listen to me anyway?
After hours of hammering them with my requested treatment method using reason, history, rage, and anything else I had available in my condition, they finally sent me down to radiology to get my enema. Long story short, I waited in the hall long enough for my morphine to wear off so I could experience the full torment of radiological hell without pain relief, but the treatment worked and I was sitting happily on the gurney waiting to be wheeled back to Beautiful when I gave them the “all clear” sign that I was “all clear.”
It didn’t take long back in the ER for me to realize that I wasn’t completely clear, though. I was very, very tender, along with an abnormal mass where I have my bottleneck. I was thinking that it only cleared out some of my problem, but that I’d had so much to eat at Outback that it just got re-plugged with that partially-digested food. Things still weren’t right.
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I definitely had a birthday to remember last year for my 31st birthday. I got the spend the next while in the hospital, but all of the misery began on my birthday. Let’s rewind a bit and start from the beginning, just for those who haven’t read everything about my history up until now.
I was born with meconium ileus and had about 25% of my small intestines removed in my first few days of life to repair the damage. Subsequently, I have a bottleneck of scarring that has always presented itself as a problem with various foods throughout my life. At first, it was whole kernel corn. For whatever reason, probably just because I became a better chewer of my food or my body grew big enough to let corn get through, I only have a problem with melted cheese when I haven’t taken enough (if any) enzymes. To keep this a little shorter, here is what happens and what normally solves my intestinal blockages.
My birthday is December 18th – one week before Christmas and two weeks before New Years. It’s been our tradition since we started dating to go out to a nice dinner (or as nice as I could afford when her birthday rolled around) to have a memory of the day. I can remember quite a few of my birthday dinners with Beautiful, and maybe even all of them… so you can imagine my horror when I started to feel cramps in the mid-morning on my birthday.
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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.
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CF Fatboy is a small business owner flourishing in Tampa, FL. He and Beautiful have been married for 3 years and are doing everything they can to ensure they have a long life together.
