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!

Back to Blogging!

It has been FOREVER since my last post! Rob came and left, but we had an amazing time together while he was here. It was soo busy and felt like a whirlwind. Here is how it went:

Sept 1: HE'S HOME!! I got all dolled up and went to the airport to get him. I was an hour early and paced around until the plane landed. Then I stood by the escalator and totally freaked out when I saw his boots! I held him and it felt like we were the only ones in the busy NYC airport. Once the butterflies settled, we headed to a luxury hotel for the night. We were treated like celebrities when they heard he was home from Iraq. The staff was super attentive and strangers even bought us wine. We had the best time and it was great spending the first 24 hours alone..something we never did in the past.

Sept 2: My nanny had her breast surgery, so we drove the hour and a 1/2 to my parents house to see her. It went well and we were pleasantly surprised to see that a few hours after surgery she was sitting up playing cards, eating dinner with us and complaining of no pain.

Sept 3: Back down to Long Island to spend the day with Rob's mom, who took the day off of work. We had lunch at P.F. Chang's and did some shopping.

Sept 4: Nanny decided last night that her bandages were uncomfortable, and at 1 a.m. ripped them off...so we drove back up to my parents to be there for her second surgery to drain the fluid and swelling that occurred. This time she had to have a drain put in, but was sent home a few hours later.

Also, from the hospital we went home, showered and attended Mike & Amy's rehearsal dinner. It was a good time and everyone was excited for the big day.

Sept 5: Pretty much our only "non-travel" day. We were at my parent's house and didn't go out all day..it was great to not be in the car! Rob has become somewhat gym-obsessed and decided he needed to workout. He convinced me to join him, so we searched the house for some weights and other random equipment we could use. Needless to say, I ended up being the barbell...

Sept 6: Mike & Amy's wedding. It was a beautiful day out and most everything went perfectly..let's just say it was a good thing Rob was around to chauffeur the girls in the morning to hair and makeup appts. Thanks, love, for being a good sport!!

Sept 7: We drove out to CT to visit some of Rob's family.

Sept 8: First Yankee game at the new stadium!! We loved it, but of course miss the nostalgia of the old stadium. Oh, and the Yankees won =)






Sept 9-11: We rented a beach house on Long Island to getaway for 2 nights. The weather was cold, windy and rained the last day, but we still had fun. We played cards, went to a wine tasting, peach picking, had a clambake and visited an awesome aquarium.
















Sept 12: Rob went to another Yankee game to spend some quality time with his dad and brothers.

Sept 13-14: We drove down to Cape May, NJ where my parents were on vacation. It is a beautiful Victorian beach town and we had GREAT weather! We went on a horse and carriage ride, ate delicious seafood and got some sun, finally!!















Sept 15-16: Back to Rob's parents house to spend some time with his family & friends.

Sept 17: Time to say goodbye. I dropped him off at the airport and of course cried like a baby =(
Only two more months to go...

For those of you who have asked about the baby making...unfortunately this month wasn't it. Peeing on a stick has become so heartbreaking for me, that I almost dread it. I had to take a test this weekend because my doctor said if it was negative she wanted me to start IV antibiotics. So, it looks like I will be doing that this week. ::sigh::

Rob and I talked about it though and he did make me feel better. We have this big PCS move coming up and we want to take a trip to Italy in January, so maybe the timing wasn't right. Plus, the IV should get my weight and PFT's up which will be better for pregnancy. That is what I am holding on to for now, and if we don't get a positive test before we move, then we are going to see an RE in Georgia.

Well, that is all for now! I will keep you posted on the IV and such! xo