Tuesday, April 26, 2011

PFT Results and Update from Clinic

So yesterday I headed down to clinic for the first time since getting out of the Hole. It's always nice to see where you stand after six or so weeks out from a tuneup and I was definitely excited to see how it would go. Now me and CF Clinic have quite a history together...and by history I mean a dysfunctional relationship. To say that I haven't been the best at going to clinic would be a gross understatement. The problem is that I've always had very consistent hospital stays and never really saw the need to check in with my doctors unless I wasn't feeling too hot. And lately I've been doing so many clinical trials that I could tell you almost week to week what my lung function is. Honestly, the biggest reason that I want to go to clinic is to see what my FEV1 is. But after much strong-arming and guilt tripping by my CF team I decided that I would bite the bullet and see them in clinic. I'm very glad that I made that decision.

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.

Comments (9)

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Good Job! Having those good appointments makes everything seem so much worth all the hard work. It's a great reward. Keep it up!
1 reply · active 727 weeks ago
You said that right! After my hospital stay I was none too pleased that my FEV1 barely budged. I knew I had to step it up!
Hey Ronnie, Congratulations that must feel awesome! Do you have any tips? Do you practice doing pfts on a regular basis? I recently had my quarterly appt and I had been running about 25 miles per week for the 3 weeks leading up to my appt and I went down in my FEV1 from 51 to 47%. I was so bummed and ended up crying in my appt (which I've never done.) I know that running is great and it gets me to cough up soooo much junk and I do lift weights regularly too but is there anything else you do? I mean that is amazing to jump up like that....12 %?! I have never had an increase like that. my pfts have just been hovering around 50% for the past 6 years. Any tips would be greatly appreciated:)
1 reply · active less than 1 minute ago
Great job on running so much these past three weeks!!! One thing to keep in mind is that you've been hovering around the same numbers for 6 years, so you can't expect to see a big jump in only 3 weeks. I had a steady decline for 8 years until I finally said "enough is enough". I was prepared to put in at least 8 years of hard work. Know what I mean? It takes us quite a few years to get to where we are, so it may take quite a few years to get to where we want to be!

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!!!
wow...great job! i know what you mean about getting comfortable. when i'm feeling pretty good, i find myself often skipping treatments. then, i get down again, and have to do more treatments. its a vicous cycle with me.
1 reply · active less than 1 minute ago
I think it's probably a vicious cycle for everyone! I think the key for me is too never be completely satisfied with the results. Now that I have a 73%, I really want a 78%!!
Congrats Ronnie! Such good news for you all :-)

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!
1 reply · active less than 1 minute ago
There is no such thing as a pathetic pace Kay! The only thing you need to be doing is moving forward and it sounds like you're doing just that :) I say go for the 10k in July...it's not like you're trying to break any world records!
Awesome clinic news, Ronnie! Keep up the good work. :)

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