Monday, September 6, 2010

Your Next Adventure


Been thinking about you with your upcoming treatments and hospitalization. Unlike your first IV treatment, I will not be experiencing this one with you. But be assured, I'll be here with you every step of the way; good and bad. I'm hoping it is smooth sailing and this talk of constant vomiting will not be your reality. But if it is, call me, write me, skype me. I want you to know I am going to be your breath team leader!

I am glad you are going to be on disability during this treatment. It is a lot to take on and you need this time to heal, so this treatment can run its course and then you can move on with life. Feeling better and getting back to work.

I am so thankful for my disability benefits. Two years ago when my sinus infection got so bad, I went on disability for several months (on and off, including post-surgery). For short term disability, I received half of my paycheck. I could supplement my vacation/sick leave to receive a full paycheck. Additionally, the benefit also allowed me to work part time. So, when I was feeling up to it, half of my paycheck was covered by disability and the other half by working. It was the best of both worlds. I got to keep working, keep my projects going, yet still have most of the day to rest. I have no idea what long term disability would is scary to think that one day I might find out. Aside from getting sick and not being able to recover, one of my fears is not being able to work full time anymore. Or worst yet, to not be able to work at all. I know it is reality for so many CFers. But here is me, planning for retirement. I have no idea what the future holds. Nobody does. But I do realize this may be a reality for me at some point.

So, remember. This is your time to heal. I hope this treatment is what you need to get back on track.

Take care,


Sunday, September 5, 2010

Pulmozyme and P.B.


I have used Pulmozyme since Thursday evening, so far with no noticeable side-effects. I'm surprised, I thought at a minimum my throat would be irritated, but I am feeling pretty good. Sorry you are having cold symptoms. I hope it is not from the Pulmozyme and if it is, your body will over come it. Not that I want you to have a cold, but that would be a better scenario than medication side-effects.

I too feel so lucky that I have such great insurance. I am paying $30.00 for a 60-day supply. Are you using Pulmozyme once or twice a day? Right now I am using it twice, but I need to contact my doctor to make sure that is what she wants. At the office visit she said it would be just once a day. So glad the treatment only takes 5 minutes. It takes more time to clean the mouth piece than to administer the medication.

I still think it is funny we showed each other out P.B. (pot bellies!). Its funny because up until about 6 months ago, I had no idea that a P.B. is a CF trait. I cannot tell you how much grief this thing has caused me over the years. I have the hardest time finding clothes, especially dresses. I'd leave a dressing room in tears because everything I tried on would make me look so fat! It always puzzled me because I have a small frame and then this belly that just didn't fit with the rest of my figure. For example, I am 5'4" and I weigh about 123 pounds. But yet I wear size 9 pants (or 29" waist). Its crazy how big I have to buy to avoid the muffin top. (LOL) Being more educated now about this, I have a better time dealing with it. Plus, over the years, I have just learned what type of clothes to look for. Any ideas why CFers end up with these crazy bellies?

Saturday, September 4, 2010

Puzzled About Pulmozyme

Hey Colleen ~

Kings Island was so wonderful! We also took a trip to Hilton Head more recently and that provided me with the opportunity to rest and recharge. It was great! This was actually our first time at Kings Island. It's a few hours away. Growing up and to this day we always go to Cedar Point. It's an amusement park nearby with lots of scary rides and things for the kids to do. CF doesn't exist when I'm at amusement parks with the family...that's for sure!

Once again, our paths cross in a similar way. We both just started on Pulmozyme for the first time within the past week. I read that your previous doctor didn't want to introduce you to Pulmozyme until your health started declining. My previous doctor said the same thing! What is that all about? I'm so confused??? As soon as I switched docs a couple weeks ago, Pulmozyme was the first thing I was told to start. It just surprises me to no end when I hear how different each doctor approaches treating this disease. It can make it hard to know which path to follow...

I am also fortunate that my insurance covers the drug. I will only have to pay $15 for a 3 month supply. I was warned before filling the Rx that this drug was expensive and that insurance companies often denied covering it. I feel like I dodged a bullet on that one. The first 30 days was free anyway, so I got my supply a few days ago. I started it a couple nights ago and kinda feel like crap. I feel like I'm getting a cold, but the cold is not coming on full blown. I've got the sore throat, dry cough and my sinuses feel inflamed. Can this be the Pulmozyme or am I just getting a cold? The weather has changed drastically this week, so I'm just not sure whether this is just normal stuff or side effects.

So have you noticed anything different since starting the Pulmozyme?

It was great Skyping with you last week! I, for one, loved comparing our CF bellies! You can't do that with just anyone, you know ;-)

Hugs ~