How Will HCR Impact the CF Community?

Since we haven't talked much about Health Care Reform lately, I thought I would re-post some of the past blogs we've had on the subject. I encourage you to click on the titles below and read through the guest post that we've presented here on RSR about Health Care Reform. Thank you again for those who contributed. If you are interested in writing a guest post on HCR (or any other topic) for this blog, please contact me and let me know what you'll be writing about.

Health Care We Can Afford? Not Likely.

Your Health or Your Wallet? The "Choice" is Yours

Why We Need Health Care Reform

Health Care Reform: He Said, She Said

I'm sure you have some opinions on this topic. I'm also sure that the opinions are very wide ranging by the readers of this blog. Please, take the time to leave a comment about how you feel. I'd especially like to hear your thoughts on how you think HCR will impact the CF community. I look forward to reading what you guys have to say.

My First Ever PICC Line

My first PICC line was somewhere around 1999 or 2000. I’m guessing around then because I don’t ever remember having them in high school which I graduated from in 1998. I started receiving PICC lines for the same reason most of you start getting PICC lines; my peripheral lines would start to blow anywhere between 1-3 days. With 2 week stays, that meant that there were times I went through MULTIPLE I.V.’s. As you can guess, that got old really fast. The other thing that was happening was because of my sensitive veins, they were having to pump the meds into me at an incredibly slow rate. Not that this was so much a problem medically, but mentally it was a little taxing being hooked up to my leash 24 hours a day. When I’m in the Hole, I NEED to be active. If I’m tethered to my I.V. pole that gets a little tough. So the decision was made for me to try a PICC line.

I can tell you exactly what I felt at that time: NERVOUS and slightly disappointed. Let me start with the disappointed feeling first (and I may be labeling the emotion wrongly). I’ve always tried to avoid the typical “CF road”. I think many of you understand that as I’ve talked to a lot of you on this exact subject. Whether it was PICC lines, oxygen at night or embolizations, I always felt like I was conceding to CF. Like I was giving in a little bit and letting CF win (I’ll do a full blog someday on why this is faulty thinking). Let me point out that I still feel the same about ports, but I’ve never felt that way about hospitalizations. Weird, I know.

Ok, back to the PICC line. When they wheeled me down to IR (Interventional Radiology) I think they could tell I was a little on edge. I generally don’t get nervous over anything like this (or ANYTHING for that matter) but this time was different for some reason. I was laying on the actual table for about 2 minutes when the nurse asked, “Is this your first PICC line?” “Yup” I answered. “Want some numbing medication for your arm and some medicine to make you relax?” “Yup”. About 1 minute later I fell into a sort of haze in which anything and everything was funny. It mattered not what they were doing to my arm, I was enjoying Planet Space Cadet way too much!

It was over before I knew it and I didn’t remember feeling a thing during the whole procedure. Sure I felt “tugging” or pressure here and there, but no pain to speak of. As the numbing medication wore off my arm was a little bit sore from the trauma, but a hot compress and some Tylenol nipped that in the bud pretty fast. Since that wonderful day in…well, in whenever it was, I’ve had over 30 PICC lines and am a proud owner of most PICC lines received at my hospital. I can no longer use my left arm due to a vain narrowing near my shoulder, but my right arm is still open, single and ready to mingle. I realize that at some point the PICC party will be over and I will be getting a port, but that time is not right now and I’m really not concerned about anything past today.

**If you click on some of today's links, they will actually take you to videos of both cleaning and discharging a PICC line**

Video Explanation of Manual CPT

Here is a video from Christina over at Nathan's Fight. She goes through (in hyper speed) what a typical treatment for little Nathan looks like. If you haven't been able to check out her blog, make sure to do so, it's definitely one of my favorites.

Cystic Fibrosis Airway Clearance Techniques on a Toddler

You've Got to Pace Yourself

I wanted to touch on a subject tonight that Mandi worked with me on for quite some time before I actually got it. That subject is PACE. No, not the salsa, but the rate at which one runs. See, one problem that I've always had, is that I go 110% no matter what I'm doing. Now, I understand that this may not actually be a problem most of the time, but when it comes to running, it has been. When I first started, I just wanted to get out of the gates fast and never look back. Let's just say that first run stopped before it really even started. I think I actually ran for about 30 seconds before I crapped out. That's also probably the time that Mandi started working with me on pace.

While I run, she's constantly saying, "Slow down if you need to, but just keep moving forward". It took me a while to get it, but at some point it finally sunk in. I mean, I'm not trying to set some kind of speed record here. I'm just trying to increase my distance little by little. In fact, I don't really care if it takes me 15 minutes to run just one mile, all I care about is that I ran that mile. I truly believe that the speed will come in due time. Right now, I'm just setting goals of either distance or time and trying to meet or go beyond the goal that is set.

An important part of meeting or exceeding those goals is pace. Just put one foot in front of the other and keep that going until you can't physically do it anymore. If you feel your lungs tighten up, than slow down! Trust me, there are often times that I am probably "running" slower than I actually walk, but the important thing is, I'm still running. Don't worry about how you look, don't worry about what people think, just worry about placing one foot in front of the other and moving forward in a running motion. Next time you run, do the same thing, just try to do it a little bit better.

Every time I set out to run, I just want to be better than the Ronnie that ran the last time.

"You'll never, ever regret a workout upon it's completion" - FB Friend

Top Ten Reasons I Prefer Hand CPT to the Vest

Before reading this list, know that I do my vest religiously and that I am VERY compliant with my treatments. Just because I prefer a hand pound to a vest treatment, doesn't mean that I blow off my vest treatment. In fact, I spend two hours a day on my vest. When I tell my doctors I'm compliant, I mean it, and I'm not going to lie to them. Plus, as I've already told many of you, the vest is certainly better than a sharp stick in the eye. Bottom line: You HAVE TO do your treatments if you want to stay ahead of this disease.

Without further ado, the top ten reasons I prefer a hand pound to the vest....

10. I can do it in the car. - I do get a lot of funny looks, but I am constantly pounding away on my chest as I drive and am sitting at lights. I especially like it when a song with a good beat to follow is on.

9. I don't have to worry about being hassled by airport security because of my hands. - I always get some sort of comment when putting my vest through airport security from "This is the biggest c-pap I have ever seen" to "How exactly is this box supposed to help your chest?". And of course, I can ALWAYS count on extra time as they make sure it's not some awesome bomb that I built.

8. It brings back fond memories of my childhood. - I don't know how, but my mom, dad or my step-dad pounded me twice a day everyday from the age of 6 months to 20 years. I was literally a grown man sitting on my mom's lap as she clapped away. But my fondest memories come from lying on the "wedge pillow" while trying to squirm away from my mom's grasp as she continued to "slap" me.

7. It doesn't give me hernias. - After my surgery for a complete intestinal blockage I had two subsequent hernias. They at least partly attributed this to lugging around my "old-school" vest. Lucky for me, the insurance company agreed and provided me with a new spiffy one.

6. I bring up mucus from my lower lobes. - I never feel like I'm getting much out of my lower lobes when I have on my vest. My lower lobes also seem to give me the most problems. Often times, after my vest, either Mandi or myself will whack away for a while and try to get the stuff out that's way down in there.

5. It puts me to sleep. - Even to this day, I almost ALWAYS fall asleep while getting pounded. When I'm in the hospital, it's common practice for the RT to have to shake me awake so that I can change positions.

4. My hands are a lot lighter to carry around. - A part of me always dreads traveling, even if just for the night, cause I always have to deal with my vest. Not only do packing it up and unpacking it bother me, but then lugging it around just kind of pours salt in the wound.

3. It makes me cough more. - I RARELY cough when I have the vest on. I have to be incredibly junky or be supplementing with some sort of breathing exercise to work up a productive cough on the vest. Conversely, it's really hard for me not to cough while getting a hand pound.

2. It's a cool bonding experience between Mandi and I. - From the very beginning, Mandi has been more than willing to "feel the burn" in order to give me hand CPT. The more she does it the better she gets (although she was a natural) and I'm pretty sure that she would make an excellent RT.

1. Plain and simple: For me, it's more effective than the vest. - I guess that doesn't really need an explanation.

So what do you guys think? Am I way off the mark? I know that in the CF community it is different strokes for different folks and there are those of you who swear by the vest and hate hand pounds. Maybe you guys could leave me some comments as to why the vest is better? And if, like me, you prefer a hand pound over the vest, leave me some points that I missed!

Pictures of Breaking but NOT Entering

As many of you saw and read, Ronnie and I were in California this weekend. Ronnie surprised me with the trip as a late birthday gift. He just said, "Hey, pack a bag, we're going to CA." It was the BEST gift he could have gotten me. We had an incredible time together and I have never been to CA except flying through the airport to and from Asia.

As I said, WE had an awesome time. Ronnie's dog, Jezzabel, did not! We left her at my house with my brother (my brother and I live together, cute I know). For some odd reason, JBell thought she could claw her way out of the house, and meet us in CA. Check out the damage:

Jezzabel is eating us out of house and home.

She couldn't quite reach the doorknob to let herself out.

A closer look at the criminal damage...we're pressing charges.

She was apparently hungry for dry wall as well.

"Running" Up My Lung Function

Guest Post by Jessica Muir

My name is Jessica and I’m 29 years old with Cystic Fibrosis, diagnosed at 5 months of age. I went to college for 4 years and graduated with my degree in Nursing. I work full time as a RN at an outpatient surgery center. I’ve been married for 5 years and have 2 dogs. To sum it up, I like to live life to the fullest. I love to be surrounded by my friends and family. I have a major love of cooking, shopping, running, being outdoors, entertaining, laughing, positive thinking, and keeping an open mind.

I’m honored to have been asked to do a guest post. I’m thrilled to share my story with the CF community, and am hoping my story will touch someone else’s life. Also, a huge thank you to Ronnie, whose blog I follow daily, and whose story has inspired me as well.

I never really understood how important exercise is with CF. To be completely honest, I had no idea how beneficial it could be. I’ve always been compliant with my treatments and medications and thought that was it. That was the best I could do.

However that all changed this year when my husband and I decided to talk to the CF doctors about starting our family. Overall they gave us such positive words, clearance from the CF aspect, and tons of encouragement. The only thing that they reiterated was to have the best lung function possible. I thought to myself, what else can I really do? I do everything possible now and was happy with myself for that. I’ve always been considered “healthy.” Then they started to ask me how often I exercised. Uh, well how about not at all? I am embarrassed to say for one, I didn’t exercise, and two, never put the obvious together that exercise could mean better health, especially with CF.

That day in December 2008 at the doctors changed everything and opened up a whole new chapter for me. I was on a hunt for information and others with CF who could inspire me. I joined CF.com, CF2chat.com, searched for CF blogs, anything and everything possible on CF and pregnancy. I was even inspired to start my own blog. I had no idea that these amazing resources were out there for me!! It was a whole new world to me, and I don’t know what I would have done without this abundance of information. The people I’ve been able to meet along the way have changed my life forever.

I started to research forums, and ask questions on the CF sites about who exercised, including what they did, and how it affected them. I was blown away! How had I never done this before? Swimming was the best exercise people recommended, but I have no pool, so cardio plan B. was it for me. I started to run. That day I was so happy and must have had an endorphin rush. I quickly decided today was the day I’d start my exercising, and I went outside and ran a mile to start my program. I haven’t stopped since.

The forums and fellow CF patients then gave me the courage to really branch out and dig deeper to make the most of my clinic visits. I was grateful to be labeled as healthy by my CF team, but now that wasn’t enough. I wanted to be even better, and make myself the absolute healthiest I could be, especially since we were trying to start our family. I asked the doctors to actually explain FEV1/FVC. I’d always been happy with my #’s, but NOW I understood what they meant. It turns out, I wasn’t happy with them and I wanted to push further. Through my questioning we also agreed that Asthma plays a huge part in my lung function. Sometimes I was treated for just the CF when actually I was having a major Asthma exacerbation. Bottom line is I took control. I did it for me, my family, and hopefully soon a baby. I actually did become pregnant in March of 2009, unfortunately I miscarried in May. This has only pushed me harder to exercise, knowing that I want to achieve motherhood.

Aside from the daily routines of (Vest 30 minutes, Pulmozyme once daily, TOBI 2x a day every other month, Colistin 2x a day every other month, 5% Hypertonic saline once daily, Albuterol as needed, Ultrase MT 20 (5) with meals, Ursodiol 3x a day, Nexium daily, Zithromax daily, Prenatal vitamin daily, Zyrtec D daily, Singulair daily, Advair 2x a day, Flonase daily…… I started a running program.

I wanted to run a 5K, so I chose to follow the “Couch to 5K” program. I’m happy to say that after training for the 5K, I ran it October 4, 2009 and completed with a time of 39:03.

What I do now is, at least 4 days a week I run for a total of 24-30 minutes with a cool down. It ends up being about 2 miles or more, and I couldn’t be happier. I actually feel the difference in my lungs. Running has been the best thing I’ve done for my lungs, and I’m amazed at how great I feel.

I’ve also been lifting weights. I use 10 pound weights and do 3 sets of 15 repetitions of a variety of exercises, 3 days a week. I feel a difference, and feel that having stronger core muscles has been beneficial to my lung function.

I bought a home FEV1 monitor. I wasn’t sure about purchasing this at first. I was afraid I would obsess about it. When I thought about it, I’d rather know what my lungs are like and have better control over my health. So I purchased the monitor. I am so happy to have such a powerful tool at home. This way I don’t have to wait for a clinic visits every 3 months to know my lung function.

I’m happy to say that I’ve seen a steady increase in my lung function since I’ve been running and it feels wonderful!

August 2008: FEV1 1.67

January 2009: FEV1 1.72 (after starting running program 1 month prior)

July 2009: FEV1 1.84 (bought monitor)

August 2009: FEV1 1.86

September 2009: FEV1 1.90

October 2009: FEV1 2.00!!

I haven’t blown a 2.00 since June of 2006!

It’s been an amazing experience to see an increase in lung function. I will continue to run and strive to push myself to the limits. Let’s see how high that FEV1 can get!

Please feel free to follow me @ http://www.jess-m.blogspot.com

Note from Ronnie: I just wanted to give a big thank you to Jessica for writing an outstanding guest post for RSR. I have been following her blog for quite some time and her determination is quite an inspiration. She has shown just how much exercise and running can help our lung function. I encourage you to leave Jessica your encouraging comments as well as any questions you may have!

If you are interested in writing a guest post for RSR simply send me an email with a little bit about yourself and what you'd like to write about.