Wednesday, June 10, 2009

CF Clinic

Today I had an appointment with my CF doc. It went surprisingly well. We went over A LOT of stuff though, so I will break it down in sections.

The best news was my PFT's. Here are my numbers:
  • March 2009 - FVC 61%, FEV1 42%
  • April 2009 - FVC 72%, FEV1 49%
  • June 2009 - FVC 89%, FEV1 55%
I am really excited about that!! I haven't even been doing anything differently, but I am glad they have gone up so much. I plan on exercising more and seeing if I can get them even better. It is kind of weird, but I don't feel GREAT. I mean I feel okay, but not way better than I felt in March.. Either way, the numbers don't lie and they are fantastic.

My weight was 113 lbs. which is only up from 112 in April. Last year I weighed about 125. Dr. Behar would like to see me gain 10 more pounds. She said it will help fight infection and be better for when Rob comes home and we try for a baby.

She also said I should lower my insulin by one unit in the morning. Sometimes my blood sugar goes low around lunch time and she also thinks it may help with gaining weight.

As for the coughing up blood, we determined that it seems to be directly related with ovulation. I've noticed this over the past few years, and since increasing my vitamin K in April, the only hemoptysis I've had was a couple days before my period was due. She said as long as that is the only time it is happening, she isn't concerned. Does this happen to any of you? It's frustrating but I'd rather have a reason that it be a mystery. I know it's not infection because I don't feel sick plus I've been on antibiotics and it doesn't make a difference.

Also, this is kind of interesting and I wonder if anyone has an opinion. I told her that I was VERY short of breath last night, even after doing the vest and xopenex. She said that another patient before me said that exact same thing and thinks it has to do with the weather change and drop in the barometer. It kind of makes sense and I am going to take notice when it happens again. Let me know if you've ever had something like this happen.

While I was waiting to be seen by my doctor, I was approached about a research study. It is to determine the affects of Vitamin D levels in CFers. Of course I agreed to the study and they took a sputum sample and blood levels. I will have to go back and give samples again at the end of July after spending time in the sun.

FINALLY, I have had pretty bad back pain on the right side since last night, so I had a urine culture and x-ray of my kidneys done. Hopefully it is not a stone, but I will find out in the next day or so. The funniest part was when I went to have the x-ray, I had to put on a gown and lay on a table. I was embarrassed because my legs were stubbly..hopefully the tech didn't notice LOL


  1. Good job on the numbers they are amazing!!!!

  2. awesome job on the numbers girly!! WOOHOO!! :)

  3. Hi Seester!

    I was on facebook and I saw the link your blog and i wanted to tell you how proud of you I am.

    I'm going to make sure you gain 10lbs too. Really I'm an expert on gaining weight :-P

    I <3 you.

  4. Thanks for stopping by and commenting!

    Great job on those PFT numbers. I'm looking forward to seeing how high they can get with exercise!


  5. Holy cow awesome Blow!!!

    I have been streaking lately to. I think it is due to TOBI and aztreonam but I ll have to see if it happens around that time of the month.

    It has been really rainy here and the pressure is low not normal for Utah. I find myself needing to do more treatments.

    I will keep my fingers crossed there isn't a stone.