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!
Colleen

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!!!

Hugs!
Stacey

Your Next Adventure

Stacey,

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,

Colleen

Pulmozyme and P.B.

Stacey,

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?

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 ~
Stacey

Kings Island

Stacey,

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,

Colleen

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.

What I CAN Do!

Hey Colleen ~

I am so thrilled that things are still going well for you! I know you were disappointed that you couldn't produce a sputum culture in order to attend the CFRI retreat. That is a bummer. However, how great that your lungs are that clear!!! My lungs have actually been feeling good for the past 4 days or so. It took a couple weeks for the Doxy to kick in, but it seems to be going OK now. I just learned more about the mycobacterium that I cultured prior to my tune-up. If you haven't yet, read my blog post from today for those details. I have a clinic appointment next Wednesday. I may be starting a one year course of treatment. I really hope that knocks my lungs back into shape. It's really frustrating that every single time I go off of abx, I have an exacerbation within days.

So, with the frustrations and helplessness I have felt over the past couple months, I chose to focus my energy on positive things that I CAN do for myself. One of those things is exercise. My doctor allows me to replace one vest treatment a day with a one hour session of cardio exercise. The vest makes me itch, so I love the option to opt out of a daily treatment. I used to run, but I realized that I got bored a lot while running. I also had no motivation to really push myself when I got tired or winded. I would have a great day where I could talk myself into finishing a few miles, then the next day I had to drag myself through one mile.

About 3 years ago, right around the time my CF symptoms started getting worse, I was introduced by a friend to an aerobics class. It includes 40 minutes of cardio and 20 minutes of strength training. I find that for me I need to work out in a group-type setting. Knowing that others are watching and that if I quit, they will know, makes me continue. Even when I have little breath left. Even when I feel a wall of exhaustion. I guess it's peer pressure? Whatever it is...it works! I have gone to these classes religiously 4-6 times per week. On occasion, I'll even try to stay for back to back classes. It helps me feel healthy, even if my doctors tell me I'm not. It helps me feel strong. It helps my mood tremendously. Basically, I'm addicted.

I know you are aware that my PFT's have dropped 30% in the past 3 years. When I look back, I shutter to think how much lower they may have gotten if I hadn't been so active during those years. I feel like being introduced to this type of exercise program came at just the right time in my life. I also know that many with CF are not physically able to participate in this type of aerobic activity. It's not that they don't want to...it's that they just physically are unable. I think that's what motivates me to get my butt out of bed and work-out each day. As long as I am physically able, I MUST take advantage of my abilities. One day I may not be as able.

So what are some of the things that you do for your health, while dealing with this relentless disease of ours?

Hugs ~
Stacey

When to ask for meds...

...is a question I always struggle with. It's hard to judge my "normal" cough with an increased-we-have-a-problem-cough. Generally, the only time I need meds is after catching a cold. It always ends up in my chest with lots of coughing, especially at night. Ok, that is easy to judge. But after being on IVs my lungs are so clear, looking back I realized maybe my lungs needed these meds long ago and I just didn't realize it. So now what? Freak out at any little cough and call up the doctor? Probably not that extreme, but I think I have to be honest with myself in understanding that I may need antibiotics more than before. Not because I am sicker, but because I should of been on them regularly all along. I am more educated now. But the question still remains...how will I know? Can I trust myself to know?

I think you have a good plan. Regular clinic visits. Discuss your syptoms with the doctor, gauge your lungs with regular PFT results. Aggressive care is good, but really assess when you need treatment. Don't think about how often others with CF are on meds; make the judgement based on your own body.

This Sunday will mark my third week off IVs. I am still feeling good: clear lungs and clear sinuses. With everyday I am hopeful to have at least one more day feeling good. I'm sorry you had a change in symptoms. How are the new meds?

Stay strong,

Colleen

Can I Trust Myself?

Hey Colleen -

Sorry it's taken a while to get back. It was a pretty crazy week. I know that you read about my reaction to the Nafcillin in my Confessions blog. That was a huge bummer. It stinks to think that the entire category of Penicillin drugs won't be an option for me. I had a clinic visit on Wednesday and got my PICC pulled. I kinda spouted a bunch of blood. I soaked through a paper towel. I had to hold my arm over my head for about 5 minutes, while the Dr. put pressure on it. The removal itself was completely painless, though!

The thing that bummed me out most about the clinic visit is that my PFT's did not improve, not one little percentage point. UGH! They are not horrible, but I expected that all of that work would have given me some kind of tangible benefit that I could see on paper. Not this time... I do, however, feel good.

Here's my biggest fear right now... I don't know if I can trust my instincts to know when I'm going to need more treatments or medical intervention. When I had the 30% decline in my pulmonary function it completely snuck up on me. I had no major indicators that told me that my health was declining. My body compensated. I am going in to see my Dr. every 9 weeks, so I'm sure we'll catch it pretty quickly. I think having healthier lungs over the years, compared to others with CF, has given me a false sense of security. I've now just completed a tune-up and I can no longer hide in that comfortable state of denial. I have made a decision that I want to be extremely aggressive with my care from this point forward. If I have a choice between orals and IV's, I'm doing IV's. If I have a choice of whether to treat the mycobacterium that I cultured, I will choose to treat. I think the past year has scared me straight. I just need to work on learning how to "read" my body, like others with CF have seemed to master.

I know you wanted to update me about how it's been for you post-IV's. I'm hoping it's all good! Let me know...

Hugs -
Stacey

It's No Big Deal...

Stacey,



"It's no big deal" is how I would summarize my whole attitude with CF. And in a way, for me, having CF really isn't a big deal...at least not at this point in my life. When I look around at those with CF waiting for a lung transplant or recovering from one, I think to myself, THAT is a big deal. When I see people much younger than me who can't work because of the 6 hours they need during the day to administer treatments, I think THAT is a big deal. When I see those in and out of the hospital for weeks at a time, parents who have to plan a child's funeral, young women giving in to the fact that they will not be able to have children...I think you get my point. That is not to say that we, however, should minimize our relationship to this disease, its just hard because this disease is affecting me so different then it does with other people. Maybe one day that will be me. It's hard to think about.



A lot of people don't even know I have CF, mostly because of my "No Big Deal" attitude. It is like I am almost embarrassed to tell people I have CF because I don't want them to get the wrong idea. When I tell anyone that I have CF, I feel like the next thing I have to say is "but I am REALLY healthily" or "it's mild." I can't just say it and let it be what it is. In a way, I feel like I am trying to protect people in some way. Or maybe you are right...I can't just admit to myself that it is a big deal, mild case or not.



I guess I have a few good PICC line stories of my own. I would find people looking, but like you said in your Confession's blog, its expected...I would do the same. I found people at work asking the most questions, which I also expected. I did catch one guy in the grocery store staring longer then the normal glance-and-look-away. The only really awkward moment was doing my treatments at a friends house during a 4th of July party. I tried to just find my own space and do my own thing. Most people would just walk by with no reaction. Almost everyone at the party knew what I was doing and why. But one person walked by and stopped and looked at me like I was shooting up heroin or something. It was priceless. Wish I had a camera. I couldn't help but apologize and say something like this will only take me about 10 minutes.



The PICC line removal was painless. No blood. There is a little scab right now and it is healing fine. My skin is super dry, so I am just trying to keep lotion on it. Good luck with your appointment. Let me know what happens. Stay strong. Stay positive.

Re: PICC is Gone

Hey Colleen ~

It's gone? Just like that? Did it bleed a ton when it came out? I have an appointment on Wednesday. I'm going to do a PFT and we'll decide what to do. I am actually hoping its gone by the following week. I really want to take a couple day trip with the family and it would be a bummer to have to take care of it out of town. I think mentally I want to keep the PICC for what it symbolizes, but physically, I will be happy when it's gone.

I have been trying to be kind to myself. I got a mani/pedi today and ate a Twix bar...YUM! I feel like I'm allowing myself little pleasures to make up for the stress that this has caused over the past weeks.

I just posted a blog about strangers reactions to my PICC. I would love to hear what your experiences were over the past couple weeks. I didn't mention this in my blog, but today at the mall I had the cashier at Justice ask me what was going on with my arm. She was curious, because she is going to nursing school. I was honored that she asked, but embarrassed when I told her. I did the whole "It's no big deal" thing. It's just a little lung disease, nothing horrible. I think this is my reflex response in an attempt to spare other people's feelings. It IS a horrible disease and the treatments ARE a big deal. I just can't say it out loud. Maybe then I would have to admit it to myself... Do you ever react like this???

I'm so proud of you, that you made it through the treatments and are back to "normal"!

Hugs ~
Stacey

PICC is Gone

Stacey,



Yes, sadly, Thursday afternoon I had to say goodbye to my PICC. I had a follow up visit with my clinic. The doctor thought I was doing well and she did not see the need to continue with treatments. When she proceeded to say I could have to PICC pulled, my first reaction was to just say no, I want to keep it. Please don't take it away yet. But I knew there was no logic there. I asked if I need an appointment to have it pulled and when she said no, they could do it right here at clinic, I felt unprepared. Like I need more advanced notice. But, knowing it was time, I took a few deep breaths and within seconds, the line was out. Good-bye. Now that it is gone, I have become thankful to have my arm back...I can take a normal shower, sleep on my left arm, and I'm back to water aerobics!

Stacey, I know life is busy and I have a funny visual of you in the grocery store finishing off your IVs, but I hope you can find time to relax and heal. I only had one infusion a day that took about an hour, the rest was all push medications that only take about 10 minutes. Try to give yourself one treatment a day that you can have to yourself. To enjoy your time. Read a book, watch a move, write a blog.

Colleen

Love of the PICC

Hey Colleen ~

I completely hear you on this one! I am starting to really become fond of the PICC. I had a completely pain free blood draw today. Even with the IV's they used to place near my wrist, I always had some pain and discomfort while getting or giving anything from it. Today, there was no pain! Yay, for no pain!

I can tell you I'm having some of the same reluctance about going off of this poison. It seems to be working so well. I didn't realize how bad I felt before. Feeling bad was my normalcy...and I was totally unaware. I don't even know at what point it got that way. I can't remember the last time I walked up ONE flight of steps without needing a few minutes to recover. I would get completely winded. A couple days ago I noticed that I went upstairs and my breathing didn't change at all. I could talk normally when I got to the top of stairs. No huffing and puffing. It was an AMAZING feeling!

I still have about 2 weeks left on this drug...BUT what happens then? What if I decline quickly again. I often find my mind floating to thoughts of "what-if". I guess life is full of "what-if's". It's just such an uncomfortable place to be. I give my self a little bit of time to feel that fear, then I move back to the present. Today, I feel great! Today, I can play with my kids! Today, I can work! What a gift life is...not to be taken for granted.

I'm a little jealous of the quiet time that you take for yourself while infusing your IV's. Things just never seem to slow down here. I am trying to continue working full-time, then there are the kids to think about. This morning I woke up at 7am and went grocery shopping before the work day started, all while infusing my IV's. I kid you not, I unhooked myself and did the saline and heparin in the frozen food isle. I must have looked like a freak, but you gotta do what you gotta do!

Here's my new baby...

This is my new comfort shirt. Piper got her new lungs a few weeks ago. While waiting she had these shirts made. This reminds me that I can get through the tough times. It reminds me of all of the CFers who have had it tougher than us. If they can do it, so can we!

Hugs ~

Stacey

Love of the PICC

Stacey, like you I am having a Love/Love relationship with my PICC. As horrified as I was to have it placed and as hard as it was emotionally to accept I now needed IV antibiotics, I have found a comfort with the PICC. I am use to it. I love how I can get blood drawn from it. But even more so, now that my treatment has come to an end, I am finding I don't want to have the line pulled.

Its hard to explain. I have found a comfort to having the PICC and using IV antibiotics. Maybe I am going through some weird withdraw, but I actually miss administering my IV meds. It was a comfort. Knowing I was receiving powerful medications was a security I never felt before. I used the time being hooked up to IVs as relaxing time. Reading, blogging, movies, baseball...it was my time. My time to heal. It reminds me of a poster I saw at the infusion center the day I had my line placed..."Quite, you are now entering a healing environment." I carried that message with me. My IV time was my healing environment. It's powerful. I don't want to lose it.

*side note* That t-shirt I am wearing is a comfort shirt as well, it's my security blanket. I've had it since 1992. It is a Beasite Boys t-shirt. I feel so comfortable when I am wearing it. I immediately put it on after returning home from having my PICC placed.

Introduction

Stacey and Colleen where first introduced by fellow CFer Josh, because he felt we had too much in common to not know each other. The fact that we have a lot in common is an understatement. From our symptoms to our emotions to our worries to our outlook on life, we truly have so much in common...and so much to talk about. This was further emphasized when Colleen learned Stacey was to receive her first IV antibiotic treatment within a week of Colleen beginning her first IV antibiotic treatment. We have found comfort in sharing our experience and have been talking ever since. Stacey and Colleen have become Soul Cysters.

Discovering just how much we had in common, we have realized we have more to talk about then we can possibly imagine. This forum is for us to share our stories with each other. Within this blog we will both be blogging on the same topic. It is our way of sharing our stories with each other. It is our way of documenting our lives, how we are the same and discovering areas where we are different. There is so much to say, it's worth blogging, it's worth preserving, and it's worth sharing.

Stacey and Colleen