From the Blog

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.

[Read more…]

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!

Dulcolax – Yet Another New Essential Med

Creative, funny marketing person!

I’ve hit a creative brick wall in everything non-essential, such as my client work. For someone with over 1,400 blog posts over the last 5 years, it’s pretty stinking weird to be out of words to say. This is the best I can do today before my Silent Sunday post and my What CFers do for Monday. At least those are easy to come up with!

This week involved the discovery that Dulcolaxย  is now an essential medicine for me, though I won’t go into how I found out. What matters most is that it’s strange how many of these meds I’ve started taking since becoming so compliant have now made themselves essential to normal functioning. The doctors have me on one in the morning and one at night, and I can say that not taking it because I feel like my body is behaving and it’s not necessary is not an option.

Some examples:
[Read more…]

Acapella, Flutter, Vest, or Manual CPT

Vest while WorkingLet’s get some community feedback going for the masses with this topic. It’s something we’re all familiar with unless your mutation rocks and your lungs are pristine without this much treatment. You are welcome here, anyway, but you are a rarity.

I’ve had all four of these in my years. About 13 years of manual chest physiotherapy, a couple of years trying Flutter in the car on the way to school functions, years of non-compliance with the very old Hill-Rom Vest that never stayed turned on because of that stupid foot pedal, and now a new inCourage Vest and Acapella.

Here are my thoughts and results from each:

  • Manual CPT – In my opinion, this is THE best method for airway clearance when done properly. The downsides are the obvious space/time requirement, as well as a willing second party unless you’re somehow able to do it yourself. You can’t help but cough if you have anything in a particular lobe that needs to come out. If I had unlimited time and resources, I’d opt to have this as my treatment, but I have a life/job, and so does Beautiful. It just wouldn’t work for us.
  • Flutter – I’d rank this as the second best. I was able to get the percussion sensation longer with Flutter than Acapella, so I think it did more, and I seem to remember it being a stronger feeling, even though the Acapella is adjustable. It’s so small, it’s ridiculous, not to mention it only being 3 parts and the easiest thing in our arsenal to keep sterile.
  • Vest – Not all vests are created equal. I couldn’t be happier with my inCourage Vest system that I got last August, but it serves a purpose, but not the one I thought. I don’t go crazy coughing with it, but it does a fantastic job alleviating any wheezing I have at the time. It’s quite expensive, even with insurance (our durable medical equipment co-pay was still $1200, and I have an excellent HMO package. Is it worth it to me? Absolutely.
  • Acapella – I have 2 of them that I bought out of pocket because my HMO wouldn’t pay for the device. I was keeping one in the car for my way to school if I had a wheeze and I keep one by my Vest. I find using both the Flutter and Acapella exhausting to use because of the deep breathing and strenuous spasms that follow, but I know they work.

Which method(s) is/are your preference for airway clearance?

SOCIAL LINKS

    Warning: Invalid argument supplied for foreach() in /Users/benmeredith/Local Sites/cffatboy/app/public/wp-content/plugins/genesis-mobile-menu/includes/global/GMM_Public.php on line 222