Tuesday, April 26, 2011
PFT Results and Update from Clinic
We did all the regular stuff that I'm sure most of you do each and every clinic visit. My visit started off with the social worker and we just discussed some different themes I see happening in the CF community right now and what we'd like to see in the future. Fortunately, I'm not having any insurance issues or family issues at this time (although with Mandi in the house that could change at the drop of a hat...kidding babe). This was followed by a visit from the dietitian and an intern and Glenda, who is like the CF czar. Glenda makes sure that I'm always on top of my game and was one of the main reasons that I made sure I got to the clinic. She can guilt trip with the best of them :) We went over the basic stuff like how my lungs were doing if I had an increase in cough, how my appetite was and overall how I was feeling. We of course had to go over my medicine list, and you would think at some point I would write it down or have it on my phone, because I seem to always struggle to come up with all of my meds. I'm sure each clinic is a little different from place to place but I'm also sure we have common themes that are similar. But this is basically how clinic goes each and every time.
I almost forgot about the most exciting part! My appointment actually started off with a visit from Darcy who does our PFT testing. Now I felt pretty good heading into the appointment but knowing that my last FEV1 was at 61% and that I haven't been able to run for a few weeks because of my foot, I really wasn't sure what to expect. To my delight and surprise I blew in a FEV1 of 73%! According to them that was one of my best in clinic FEV1 in years. I also blew an 85% FVC which you have to go back to 2003 to match. I got to say it felt really good to see that number increased so much and just validates all of the commitment and hard work I've put in since I've gotten out of the Hole. It's been very rare for us to miss a day in the gym and if we do miss, we make sure to get a walk or a bike ride in. We've also been eating much better and although that may have no effect on the lungs, I can definitely tell and how it affects me overall.
Now the key is to not get comfortable. I can be some fat cat who thinks he has it made just because I have a really good PFT or I can use this as even more motivation. If anything what this shows me is that if I work even harder I may be able to raise those numbers up even more. I haven't been perfect since I got out of the hospital, but I strive to be perfect in taking care of myself each and every day. After the test today I thought to myself what would've happened if I was 100% compliant on both treatments and exercise this entire time? Of course I'll never know the answer, but moving forward I have another chance on trying to achieve perfection. Getting comfortable has always been one of my big battles especially during these times that I feel great. I have to remember that CF never takes a day off and I can't afford to either.
Labels:
Attitude,
CF,
Clinic,
Cystic Fibrosis,
PFT
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PFT Results and Update from Clinic
2011-04-26T01:00:00-07:00
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Attitude|CF|Clinic|Cystic Fibrosis|PFT|
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Heather · 727 weeks ago
RunSickboyRun 96p · 727 weeks ago
Emily · 727 weeks ago
RunSickboyRun 96p · 727 weeks ago
The key is to just stay after it! Don't be discouraged by one PFT result. PFT tests are very finicky and for all you know your numbers could be better today. Use those results as wind to blow your sail and move the boat forward, don't turn your sail and try to go against the wind.
As far as what I do...Before I get out of bed, I lay there for about 5 minutes and take deep deep breaths, as deep as I can, and exhale. I try to get all of that mucus out that made it's way up my lungs while I was sleeping. I do 3 to 4 treatments a day (albuterol/atrovent, Pulmozyme, HTS, Inhaled antibiotic, Advair, Vest) and I make sure to do SOMETHING each and every day. Whether it's the gym, walk/run, bike, skip, whatever.
Stick with it Emily and remember, even if your numbers don't go up, imagine them being the same in 5 years...that would be quite a positive thing!!!
amanda · 727 weeks ago
RunSickboyRun 96p · 727 weeks ago
Kay Wharton · 727 weeks ago
I'm with Emily on not really seeing my PFTs budge much...but at 49 yrs. I am happy with holding steady around 47-50 FEV1. I'm trying to step up the jogging as had been just been jogging 1/4 mile/walk 1/4 mile to get a mile of jogging in until recently as I would get too winded to do too much at a time. Learned through Jerry Cahill about jogging with O2 and can actually get out and run for about 40 minutes (although I don't even want to know how many miles I'm covering...it's a pretty pathetic pace I'm sure). Just happy to be doing it and getting that head-clearing feeling I've been missing from jogging. Hoping I can pick up the pace as I get in better condition. Have been doing weight program for 2 years now which helps too. Do cough up a bunch when jog and have less coughing throughout the day too which is nice at work.
I'm thinking of trying the "Run to Breathe" 10k that BEF is holding on July 9th in NYC. Anybody else up for it? I'm trying out a 5k this weekend. Had trouble today keeping O2 at 90 or above....think its the rainy weather.
Go for the 78% Ronnie. You can do it!
RunSickboyRun 96p · 727 weeks ago
Sherry · 727 weeks ago