Tuesday, December 28, 2010

Looking Back on 2010

Hi Stacey!

There is something about the week between Christmas and New Years that I just love.  The hectic-ness of Christmas is over, but yet the holiday is still lingering in the air.  The decorations are still up, but with new, unwrapped gifts under the tree.  The good feelings of sharing with family and friends hangs around for the week.  It is the week you can sit back and reflect on Christmas and enjoy the new memories shared with loved ones.  It is also the week the current year comes to a close and we look into a new year to follow.  As I sit and think about 2010, I can't help but remember how we instantly connected with our health journey. 

Its hard to believe we have been friends less than a year. Just this summer we both experienced our first IV antibiotic treatment and first PICC lines...within a week of each other.  We shared the emotions that came with facing a disease that we were previously both able to classify as "minor."  You where there for me as I worried about the significance of my treatment.  You listened when I needed a friend the most.  You understood.  You where going through the same thing.  You where feeling the same emotions. We become Soul Cysters. 

As we look to this new year, we will both continue to manage our health and emotions.  CF will always be there, always need attention, always require maintenance.  Knowing there are others who understand makes it a little easier.  Knowing others who can relate to the complications in my life makes it a little more manageable.  It is not fair that anyone have to face these conditions.  But I feel so blessed to have a friend like you, when in reality, our friendship is made possible my CF. 

Happy New Year!

Saturday, October 30, 2010

A Huge Hooray & A Little Anxiety

Hey Coleen -

I just read your latest post about your 112% PFT result! Holy cow! I am so proud of you. You have been working so hard to stay on top of any sinus infections and I know you have been so compliant with your Pulmozyme and Acapella. Now you have proof that being proactive really is key. I know how happy you must have been to see those numbers :-) I wish I could have been a fly on the wall and seen your reaction. You, my dear, are inspiring!

So the last time you wrote you wished me well on my next adventure with IV's. An adventure it has been. I was on the Tigercycline for one week, then had to go off due to debilitating nausea. I then went on Cifoxitin, which I had to go off of in week 4, due to bone marrow failure. I was REALLY, REALLY sick for about a week. Having no white blood cells is the pits. I also had to have my PICC pulled and it was found to have been infected. My bone marrow has now recovered and I am preparing to be admitted again on Monday to have another PICC placed and start IV Amikacin. If we can get 6 weeks in we will be happy.

So, I got pretty depressed after I failed the Cifoxitin. My body felt broken, my spirit felt broken, I felt worthless. It was really, really hard. As my energy returned, my mood improved. I felt more willing to get up and around. I think I've come to the conclusion that I make a really bad sick person. It just doesn't suit me...but I guess at times I don't have a choice.

So I haven't thought much about my upcoming admission, but I can tell I'm nervous, because my fingers are bloody stumps. I only chew on my fingers when I am FULL of anxiety, which is not too often. I think it's the whole PICC thing. It took them 3 tries to get my last one placed. This is the third time I have to get on in 4 months time. Am I being a HUGE wimp? I know CFer's have to go through so much more invasive procedures than getting a PICC. Why is it creating all of this anxiety?

Anyway, I'm soooo happy for you! I saw you were in Arizona recently. What for & did you have fun? I loved your post on your to-do list. When you come to Cleveland to go to Progressive Field you will be hanging out with me!!!


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 be...it 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 ~

Monday, August 9, 2010

Kings Island


One day, not so long ago, I was thinking about good blog topics for us to explore all that we have in common. One random thought was Kings Island, as any girl living in Ohio would have something to say about this place. Then, a few days later, you post something on your Confessions blog about going to Kings Island. Not that I needed any more proof you are my soul cyster, but really? For having never met each other, I can't believe how connected we are sometimes. :)

Anyway, living in Chicago as a young girl, I remember my Grandparents taking to me to Kings Island. I was very young (maybe 4?) and I don't remember the details, I just remember being there with Grandma and Grandpa. Kings Island is a special place to me because it is one of the few memories I have of my Grandpa...being there with him.

What does Kings Island mean to you?
Did you go as a little girl?

Lots of love to you,


Sunday, August 8, 2010

The Exercise MUST

Exercise has become the key to my health. I have been exercising regularly since 2000. I've always had a gym membership. For a long time I thought I was exercising to "stay skinny" but I have learned over the years that it is really about my health and keeping these lungs clear. It is my main form of mucus clearance. I keep a goal of trying to get to the gym four times a week. Additionally, I use the Acapella for mucus clearance. I try to use it every night. Some times I forget. Yeah, I'll admit it.

I keep things changing at the gym or I will get bored and not go. I do something different each time I am there: elliptical, weights, bike, walking, swimming, water aerobics, yoga. I try and rotate between these options. Some times I'll stay home and do an aerobics video. I just have to keep things changing.

Actually, I have to admit, I am proud of myself for keeping with a regular exercise routine. I hear the excuses people make to get out of exercising. Its weak. I don't want to be that person. (And by this I just mean the general population...not excuses CFer make).

I have some experience with Yoga and I love it. Believe it or not, it is the ultimate form of mucus clearance. Yoga involves deep breathing, which really gives the lungs a super workout. It may not get your heart rate up or you may not break a sweat, but it does lead to that productive cough!

I completely agree about keeping up with exercise while we are healthy enough to do so. I have learned that I am so lucky to have my health. I'm not going to take it for granted. Some days its not easy. My head hurts, I'm tired, I just want to be lazy. But in the end there is noting more satisfying that a good workout.