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 though..my 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!