Wednesday, October 7, 2009

CF Update

So when I saw Dr. Behar a month ago, my FVC was 48% and my FEV1 was 35%. She wanted to see me back in a month and had expected me to be on IV's by then. Well, my CF nurse Madelint was trying to get in touch with the insurance company to get approval for a PICC line and home meds, and they didn't get back to her until today. When I heard she was having problems getting it set up, I decided to start Tobi and Augmentin. I also added Singulair for these damn allergies and started doing 7% hypertonic saline twice a day like they asked me to..which burns the hell out of my throat by the way!! How do you guys do this stuff? Anyway, I went back today, and get this - right after I finish my PFT's, the power goes out! The whole building lost power and it was still off when I left my appointment. I was glad that I was able to get my PFT's done numbers were 73% (FVC) and 51% (FEV1)!!! I was soo happy to hear that. I told Dr. Behar that I think the Singulair made the biggest difference in my shortness of breath and she agreed that it seems like my biggest problems are allergies/asthma related. She told me to stay on the Singulair and to add Zyrtec to see if that helps even more.

As for the IV, the idea is to get me in the best shape possible before pregnancy, so I decided to wait until December/January since my lungs are in good shape now and we won't be trying for a baby again until Februaryis,h after we move.

My mom came to the appointment with me today and had a lot to say on the baby front. She always seems against me having a child. I understand that she worries about my health, but I am doing everything I can to take the necessary steps to being healthy enough. She acts very unsupportive and brought me to tears in the office. I think her biggest fear is me living so far away and her not being there to help. We talked about it on the drive home and she said she would try to support me more, so we'll see.

They ran out of flu shots, so I was pretty bummed about that. Dr. Behar sees patients upstairs as a regular internist and told me I could get my shot up there, but with the lights out, there was no way I was going to attempt 3 flights of stairs in pitch black. It was bad enough I had to pee so bad I used my cell phone as a light, which let me tell you , didn't do much!

I know this post is long already, but the best part of my appointment today was when I was leaving. I ran into a CF friend who I met on MySpace. We never met before but joked about running into each other someday. Well today was the day, and it was PERFECT timing! She had twins in December. We talked for a few minutes and I think it was good for my mom to see how well she was doing and that CF women can have babies and be okay. It was right after my tear-fest and she felt like an angel to me. She told me she went through testing and had to have an IUI and she said it worked the first time around.

On the way in to my appointment I ran into my pediatric CF doc, who no longer treats me, but had for over 20 years. He told me that Rob and I should sit down with him and have a talk about all the baby stuff and what the best way is to do it. I am going to schedule that for December while we are home for the holidays. I can't wait for that appointment!


  1. GREAT job on those numbers!!!!!!! Seriously, that is so awesome and I'm so happy for you! If you'd like to write a guest post on the changes you've made and the result, I would love to host it on RSR. Let me know!



  2. Great news on the numbers!! Way to go :) I know that's the best feeling in the world!! This time of year for me too, the Asthma is the worst :/ Glad things are looking up!
    As for having a baby, you know I'm thinking of you. I'm so glad that you ran into your friend, truly like an angel was sent! I've met some CF'ers on Facebook which I actually got to meet in September, it was AWESOME!!! Keep up the great work! :)

  3. wow thats great, I once got my lung function upto 52% and I was sooo happy! Can't seem to get it up there again!

  4. glad your numbers are up! i agree i hate the hts!!! it burns my throat too! it even gives me a little heartburn! and i can't keep my mouth on the mouth piece while i'm doing it, i side breath it lol. and i still cough and gag and borderline throw up sometimes. just to let you know my mom and dad were terrified when i got pregnant. my dad never told me he told someone he worked with and they told me. and i'm actually healthier now than before i got pregnant!

  5. Woohoo for a 26% increased FEV1!! I am proud of you, cyster!!

    You and I are going to have to talk babies soon. Patrick and I won't be too far behind you on trying to get preggo.

  6. thanks girls so much!

    jess - i am thinking of you too on the baby subject! i hope it happens for us soon :) and that is awesome that you got to meet up with some cysters! it is good to have people who understand.

    candice - that definitely does make me feel better about ur parents and ur health being even better!

    cara - whenever you are ready to talk babies, let me know!! ive been at this for a little while and would love a cf buddy to go thru it with =)

  7. Yay for the improvement!
    I am wishing the best you and Rob on the baby front. I know how much you guys want this :) Hopefully after your talk you mom can be a bit more supportive!

    As for the hypertonic I don't have much irritation anymore but when I did I drank tea with honey. I also found this throat soother tea that I drink when I am on TOBI too because TOBI gives me a sore throat!

  8. Yay for a good appointment!

    I had to switch to doing my hypertonic only 1 time a day and sometimes every other day b/c it makes me loose my breath.

    I take singular -which I love. But we added allegra and its AMAZING. One of my biggest issues is asthma/allergies. I also do symbicort.