Thursday, April 25, 2013

Clinic Visit

I had my quarterly clinic visit today, which kind of crept up on me this time because Tim and I have been so busy lately. Usually I'm really good about planning ahead with questions, but this time I just showed up! I haven't been feeling the greatest this week. I woke up Saturday with a sore throat and post nasal drip (my first sign of a cold). It's slowly made it's way through my sinuses and now it's in the naggy cough & into my chest stage. I've even noticed that my voice is pretty hoarse tonight -- that could be a combination of hours of singing in the car (to and from Chicago) and coughing!

The past few months I've backed off of exercise, pretty much entirely, because I have been trying to focus on gaining weight. Even though I haven't been running or doing the workout videos, but lungs have been feeling very well since my last appointment...up until this week, of course! I always hate when I'm sick for clinic visits because I feel like it's not a true reflection of how I really have been feeling. I hate seeing low (for me) PFT numbers just because I have a cold. And that's exactly what happened at my appointment today.

As soon as I got into a room, I had one nurse taking my vitals and the other setting up the PFT machine -- they never move this quickly. Oh, and before I got my room, they weighed me in the hall and I was a whopping 109 lbs...still! That means no weight gain since January, but at least I haven't lost anymore! Anyway, once they did my blood pressure, O2 level, and temperature, the guy was ready with the PFT machine. He handed me the mouth piece and told me to start, but didn't give me nose clips. When I asked for them, he said they don't use them anymore - I was totally thrown off, I've never done a PFT without nose clips before! Haha! Either way, I started and as soon as I was on my first inhale, he told me to take a deep breath in. I was caught off guard because I wasn't preparing for it, but I did it anyway. My first FEV1 came out at a 74! Yikes!!! My chest is feeling pretty tight, but I was really bummed to see that low of a number. So I coughed my brains out for a few minutes and while the guy was sitting at the computer, he told me to start whenever I was ready. I said, "Well, I'm ready when you are!" He just told me to start breathing and was not really paying attention - it was quite annoying. This time, my FEV1 was 78 - better, but definitely not where I wanted it to be. As I was coughing from the second test, the nurse took the mouth piece away and I asked if I could do it a third time, he said, "No, this is good enough." Again, I was annoyed. I know that I've done this test a million times in my life so maybe he thought I didn't need to be coached, but to me, it makes so much of a difference when the person is actually paying attention and encouraging me! I'm not blaming him for my low PFTs - I know that my lungs are not feeling well right now and that my numbers probably wouldn't be any higher if I did the test three more times, but I was frustrated that he didn't seem to care.

Anyway, after that was over, I met with the dietitian I met her for the first time last visit, and she's wonderful. She remembered everything we talked about last time (even if she just looked over my chart before she walked in the room - at least she showed interest!) and asked how things were going. I voiced my concerns about still have absorption issues and we came to the conclusion to try adding a probiotic to my daily regimen to see if that helps. She also told me to continue to eat as much as I have been. She said I'm doing everything right, it's just not working yet.
Then she told me that one of my vitamin levels (Vit D) is actually high!!! I've had low vitamin levels as a child and transitioning into the adult clinic, so my doctor up'd my vitamin intake a lot over the past few years! It's finally paid off! I can cut back on the amount of Calcuim + D vitamins I'm taking. :)
We also discussed my lack of exercise. I explained that I stopped running because I felt like it was a major factor in my recent weight loss, but the dietitian explained that I should still really try to exercise as much as I can because it's still very good for my heart and lungs, but just make sure to replace the burned calories as soon as I'm done. Looks like I'll be picking up my running again - which, I'll admit, I've definitely missed!

Finally, I saw my doctor. She, too, was actually just getting over a cold, so she understood how I was feeling. Before I could even say anything about my FEV1, she asked how involved the nurse was. I told her that he wasn't really paying attention and apparently I wasn't the only one of the day to complain. Fortunately, my doctor was actually pleased with my PFTs today. She said that my graph still looks great and symmetrical to my last PFTs, and that my lungs are doing very well considering how I feel. I was glad to hear that she wasn't concerned. She's not too worried about my weight either. It's something that we're working on. She agreed that the probiotic should help and that I need to keep up my calorie consumption.

So just a few minor changes from today's appointment: Cut back on Calcuim + D, add Probiotic daily, increase exercise and continue consuming around 3,000 calories a day. I'm really hoping this combination will be successful for my weight and lung function!
These are my PFT graphs from January 2013
These are my graphs from today - I notice a big difference in the
bottom (don't know that that's for), but the angle of the
top is very similar to the Jan. ones which is great.


  1. Weight gain is currently my headache too! I lost over 10lbs from the flu and I seriously can't put it back on! I understand the frustration. As for exercise, muscle weighs more than fat so it may actually balance out.

    Good job on the Vitamin D. Most of America is Vit D deficient so that is pretty impressive especially for a CFer. Glad your doc isn't worried about your PFTs, I would be over the moon with those numbers ;)

    1. I'm really hoping this summer I can up my exercise by running and doing more weight training since I totally slacked this winter/spring. Without work, I'm sure I'll be burning less calories this summer, so hopefully that will help me gain a few pounds.
      And I hate to complain about seeing numbers in the 70s - I know that they are still "good" numbers, but that's around 10% below my baseline, so it was hard for me to see. I know that once I kick this stupid cold, they should go back up. :)

  2. Do you take Prilosec? I have noticed that it helps my enzymes work better and I am hungry more often. I take one tablet a day. I am so frustrated with weight gain right now, too. I am trying to eat and eat and eat but it never seems like enough. Hang in there!!

    1. I do take Prevacid and that was actually the first thing the dietitian suggested. But when she saw that I was already on that, she was more puzzled, and then suggested the pro-biotic. I'm going to pick those up this weekend and hope that they help! I feel your pain on the eating and eating and eating...3,000 calories a day is a LOT of food! It's not as glamorous as people might think...