That's what I've taken away from my doctors appointment today. I've been feeling fantastic lately: lots of energy, been coughing up way more mucus than I thought I could possibly have in my lungs (sorry, TMI) from all of my running, less bloating/stomach issues...all around very good! So I was anxious for my doctors appointment today to see if my PFTs would reflect the way I feel....of course they don't! They weren't bad, but they weren't 90 like I wanted.
My current FEV1 is 85% which is only slightly up from last time so it's considered 'unchanged' which is a good thing. As long as it's not going down, then we're good to go. My doctor and the guy who did the PFTs with me both told me that it's good that I'm not going down and I know they're right, it's just frustrating that I've been working so hard at running that I was expecting a bigger result. I was able to give a big sputum sample (sorry again for TMI) today which typically isn't me but I explained to her how I'm getting so much more up from all of my exercise and she was very happy about that. She said that being in the mid-80s could just be my baseline and that anything from 80-120 (someone please explain to me how you can have over 100% lung function) is considered normal so she's very please with where I'm at. I'm not mad about where I'm at because I feel excellent and that's what matters!
My weight has gone down to 115lbs but we contributed that to the added exercise and burning calories, so I need to continue stuffing my face - even more than I do - so that I can add a few more pounds back on. It seems like, from looking back at my health stats, that 122lbs would be a good goal for me so that's what I'll shoot for. Any suggestions on how to keep weight on while exercising would be excellent. :-)
We also discussed my new job and that Tim and I have to move and depending on my insurance, my goal is to continue going to this clinic. I do NOT want to leave because I love my doctor and nurse, and I'm willing to make the trip as long as insurance allows it. I'll know more about this in a couple months once I get all of the new stuff straightened out.
So, overall I'm going to keep running at least two miles 2-3 days a week and increase my calorie intake to hopefully gain a few more pounds before my next visit this fall. I'd say that's a pretty good visit. :-)
Hi Colleen! Great news on the appointment. I know how frustrating it can be to work so hard and not see any major improvement but always look at the bright side, you didn't go down. As for your weight, I have lots of ideas on how to add pounds. I have been struggling with it all my life. This made sound weird but something that helped me was keeping a food journal, even if just for a month or so. This way I knew that before I went to bed I had to have 2500 calories in me. (Caloriecount.com is helpful) Things that I eat to keep my weight on include, Ensure Plus (I know it sounds disgusting but if you are really serious you will take it down like a pro...at least I did. Strawberry is actually tasty) I also eat Double Stuf Oreo Cookies before I go to bed, they are full of calories and very yummy to eat. I drink Whole Milk Chocolate Milk, lots of cheese and add peanut butter to everything like pretzels, carrots and apples. If you set a goal, like you will eat 2500 calories a day for two weeks, it is much easier to do than to think I need to gain XX pounds by my next appointment. Again, the journal really helped me. I was down to 113 in May and am now about 120 plus I have CFRD, so you can do it if I can :) Good luck, let me know if you have any more questions via FB.
ReplyDeleteOh, also with starting a new job (that is sooo exciting!!) it will be really important to pack on the pounds, I always loose weight with stress.
Amazing! Colleen please don't be disappointed, this is par for the course. It took my lungs an entire year of running to see dramatic improvements in my PFT's (we have to remember that ours are damaged and will take more time than usual to begin repairing and rebuilding).
ReplyDeleteCalories and proper nutrition are so important for CF but also for your muscles for running and to remain injury free. I would agree with JWags but one thing I found that helped me was to fix a shake immediately after running to replace those burnt calories immediately. My shakes included yogurt, and type of or combination of frozen/fresh fruits, and depending on the fruits I would add peanut butter or almond butter or sunflower butter. I also have a fat soluble powder that I got from my nutritionists at CF Clinic that I add a scoop of for added fatty goodness. I don't fill my caloric needs with "junk food" because they are empty calories. They help you meet the quota but don't add much or any nutritional value that the rest of your body needs. Remember you are NOT just all CF, your muscles and heart need wholesome goodness too!!!
Way to go girl. So proud to call you Cyster!!
That's so awesome! It's hard to make your FEV1 go up when it's already so high! I'm so excited for you and how well you are doing with your running! You motivate me to try harder with my working out. I'm right there with you for traveling to clinic. There is a new adult CF clinic in the city I will be teaching, but I just really love the doctors and nurses who are at the one that I go to now. So I will be traveling as well. Congrats on everything! I'm so happy for you and everything going on in your life! :)
ReplyDeleteI had an appointment on Thursday, too, with very similar results. I was hoping for a PFT increase, but remained unchanged.
ReplyDeleteAs for 85% being your baseline... I think she means that 85% might be 100% for you. The PFTs account for a 20% error on each side. The PFTs measure the percentage of a predicted value, so basically the 80-120% window takes different lung sizes into consideration. Person 1 could have smaller lungs with a maximum FEV1 of 80%, while Person 2 could have larger lungs with a maximum FEV1 of 120%. Those would both be considered "perfect scores" for those individuals. I don't know if that makes sense in writing.
Hooray for your appointment!
Awesome news! Don't get discouraged about not seeing your PFTs go straight up, mine were stuck for about 2 years in the 80's but the important thing is that they don't go DOWN! :)
ReplyDeleteThanks for all of the kind words, tips and advice, girls! :)
ReplyDeleteIt's going to be a crazy couple of months so I hope I'm able to keep up with my eating/calorie intake and my exercise!