Tuesday, August 7, 2012

CF Clinic

Do any of you feel when you go to your CF clinic its like a trip?

For me, it always feels that way.  My clinic is an hour away in the city which always has outragous traffic. So the drive alone to actually get to the doctor and back home is at minimum 2 hours. Throw in another hour on top of that to see the Dr. and have a PFT.  OK, enough of my time commitment story.  I am sure others are in the same boat as me.

Yesterday was a big day for me.  The day was very busy since it was my wife’s birthday and CF clinic day.  I was hoping for an excellent report from the Dr. as I wanted to give Maria a gift of my good health. (For those of you who did not read my prior post, yes my wife is awesome and suggested that I go to the doctor on her birthday)  

As always, my weight is stable actually I gained two pounds. I now weigh 166 lbs. and I do not want to gain any more.  It must be that sympathy pregnancy weight gain that I am experiencing.  I know I am a lucky CFer because there are many of you who struggle to maintain weight but not this guy.  I actually once was on a diet with the wife. Yes, a CFer on a diet I know it sounds really odd.

On to my lung health.  The doctor listened to my lungs and he said I sounded EXCELLENT. There was no crackling or rattling in those wind bags. I also asked what bacteria was in my last culture. I have been culturing the same bugs for awhile now. Staph and Acinetobacter (it has a longer name) are my bacteria friends.  Some of you may wonder what about Pseudomonas aeruginosa? I have cultured Pseudomonas a few times but have not seen this bacteria in a while (Doesn’t mean that its still not in my lungs). My doctor believes that the acinetobacter has killed my previous Pseudomonas bacteria .  I know many of you who get Pseudomonas get it and never can get rid of it.  I thought I was going to be in this same boat with Pseudomonas.  Whatever it is I just thank God it has not returned!

Now time for that good old PFT box. Since adding HTS to my airway clearance I have been praying that this would improve my PFT score. I have been using HTS for a month and a half now and yesterday was the true test.  The last time I was at the CF clinic my PFT FEV1 score was 68. I have been blowing around 65-68 the last year or so.  I was really nervous and excited to have a test yesterday.   The highest score that I blew was a 72! 

I’m OK with the results because it shows that my lungs are going in the right direction. Just maybe this salty mist is working for me. I truly feel I could actually get this value higher. To be honest I think technique plays a major factor in this test and also the person who administers the test.  Yesterday, I had my not so favorite respiratory therapist administer the test.   Back to my technique, I always feel like I am straining my vocal chords/throat!!  Anyone else?

PFT’s have always been a challenge for me.  I think the biggest obstacle for me, is I focus so much on the score compared to how I actually feel.  My doctor has told me before that the PFT is just one part of the puzzle when putting together my health plan.  But for me I just focus so much on this score and I really do get depressed when I feel my numbers should be higher.  

Yesterday, was different for me. I was not depressed.  No medicines were prescribed and I received a good report from the doctor.  I think I am more optimistic for my next PFT test because I feel I can increase my score with more HTS in my airway clearance in the coming months.   How do my other cyster’s and fibro’s feel about PFT’s?


  1. Hi! I just came across your blog from a few other cysters I follow. I have CF and can totally relate to the clinic day. It is a day I anticipate for two weeks leading up to it and I always make sure to bring a buddy, either my hubby, mom or dad. I have to say the initial weigh in has always been my most feared but lately I have gotten my weight back up......120 lbs, so now the PFTs are my most feared event at the doctor. I am not sure why I get all worked up since my FEV 1 has been stable for the past 4 years....around 60. My hubby and I are in the process of trying to have a baby so I think that anxiety is what gets to me the most and knowing I need to keep my numbers up to have a healthy pregnancy.
    Well, just wanted to say "hi" and let you know that I can completely relate to clinic days. I look forward to reading your blog. By the way....my name is Julie and I am 29 years old (only for one more month!)

  2. Hi Julie, so glad you stopped by! I love how us CFer's have such a large support group. That is key in our life. I am glad that your PFT's have been stable for sometime now as well. Good luck on your journey through pregnancy. I hope you stop back soon and thanks for commenting!

  3. Glad to hear your check up went well - keep those lung functions going up!! I don't stress to much about my PFTs but I usually do some warm ups on the way to the doctor so I feel prepared (don't know if this really makes a difference or not, but mentally helps me!). Yes, my doctor visits feel like a trip - especially when its the day with blood work, bone density, x-rays and PFTs all before seeing the doc. I have this extravaganza coming up in October - yuck!

    1. Thank you CF Stinks! What does your warm up for PFTs include? Do you sit in the car and hold your nose and blow?

      Thanks for stopping by and leaving a comment! Good luck on your next TRIP to the Dr. in October.

  4. Oh Man, the PFT's are the most nail bitting part in my experience. Initially after that first blow, I have the "OH NO HOW BAD ARE THEY GOING TO BE" anxiety, or the "WHAT IF THEY'RE NOT AS HIGH AS I THOUGHT??" anxiety in that split second they take to be computed and displayed.

    At my last clinic, I used to look forward to going, I loved my team! They were pretty awesome. I would have described those trips as "adventures." These new trips, with a new clinic, eh, not so much. It's definitely much more of a "Trip" where you have to pack, and travel, and wait, and wait, oh did I mention you wait? hehe.

    I have always thought it would be helpful to see other CFers do their PFT's, just to see how they sit, move and breathe when doing it. I always felt that I had a good technique because I'm consistant. To the tenth, even hundredth of a point. The new clinic had different machines that weren't as flexible and the people who administered them wouldn't let me sit the way I liked to (one leg under my butt) and it showed in my PFT score. I've never felt that straining of your vocal chord feeling that you've described, but it may have helped that I used to take singing lessons, which greatly helped developing my PFT technique. I usually sing on the ride over to warm up for PFT's.

    Now that I've blabbed about PFT's the most important point I need to get across:
    Congratulations on an awesome PFT score!! =)

    1. Thanks Beth! I think you explained exactly how I view the PFT score. The first blow is the most anxious one for me. I have those same thoughts running through my mind also. I am sure singing is a great exercise to get those lungs ready to go!

  5. Hi John! I followed you on kristie's blog! I too have cf and I am 50! Celebrated in Disney with thee most wonderful man on earth! I feel the same way about pft's. I get so nervous that my blood pressure goes through the ROOF! My lungs are always clear thank the Lord, never been hospitalized except for my gallbladder. I take good care of myself but i can't take the credit. Why God chose me to be one of the oldest people with cf? I don't know but I'm sure glad He did! I am BLESSED! Your wife is beautiful!!!! And congratulations on your little girl coming! You guys make a beautiful couple!

    1. Hi Sue! Congratulations on the big 5 0! Keep up the good work. No hospitalizations for me either. I have had my gallbladder removed 1.5 years ago. That was one awful experience dealing with the pain of gallbladder attacks then the surgery. A few days after the surgery I ended up with bronchitis. Hmm coughing my head off and having holes through my stomach was not a good mix.

      Thanks for the nice comment as well! I hope you stop back soon!