Teens and Cystic Fibrosis

I found this post online and thought I would share. What do you guys think, does he make some good points?

Infants born and diagnosed early with cystic fibrosis are now growing up, going through puberty, and eventually, most are becoming mature adults with families of their own. The teen years are a challenge both to the parents and the teens. Teens are beginning to assert their independence, trying to be grown up, and rebellion is a stage most teens will go through.

Teenagers feel awkward and uncertain and often lose confidence in their abilities and skills. They may feel frustrated at the drugs they need to take or the time spent having physiotherapy. They may want to pretend they are normal when they are out with their friends. They may not eat healthy, take their digestive enzymes, and teenagers often start smoking at this age. Rebellion may be a perfectly normal part of going through puberty but teenagers with rebellious habits could lead to their death.

Start when your children are small to help them understand their disease. Talk about it openly and encourage them to talk about it. Help them to be educated about cystic fibrosis. You can encourage them to be normal and still impress on them the urgency of keeping up with their treatments. Teens are easily embarrassed but if they have a good self-esteem it will be easier for them to talk about their disease with their friends. If you find your teenager is not taking care of their health, have started smoking, or are not taking their medications get them in to their doctor or a good psychologist.

Teenagers can make it through this difficult time in their life. They need a good support system that should include parents, teachers, spiritual leaders, and a peer support group. If they are comfortable enough to talk about their disease and explain it to their circle of friends, they should be better about having treatments and taking medications.

You can help your teenager by offering healthy meals, being able to listen to them and understand their frustration and fear. They should be treated normally and a parent should not become overprotective. Parents can be a tremendous help to their teen by allowing them the freedom to make decisions, fall down, get hurt, and learn from their mistakes. You should step in if they are neglecting their health and not taking their medications, as they should.

Encourage your teen to be frank with their friends. To other people it may seem strange to take a handful of pills before each meal or snack; for cystic fibrosis teens it is a necessity.

Complications for teens are nearly the same as for a younger child. The danger is they will take unnecessary chances and forget to take care of their health. Repeated infections that linger may cause serious damage to their lungs. There is a danger of a lung collapsing, coughing up blood, and even stroke or heart damage. Encourage your teen to take care of their health especially if they have the potential life-threatening disease called cystic fibrosis.

Posted by David Hobson

Original article can be found at http://www.pressdistribution.net/8159/helping-teens-with-cystic-fibrosis

Home Depot Brings Out the Moron In Me

As this week comes to an end, I can only say one thing...I'm tired. It's been crazy since getting out of the Hole and things around here have been non-stop. The good news is that I have not let it stand in the way of treatments whatsoever, the bad news, I need to get my running shoes on!! I haven't missed a morning walk yet, but when my lungs are this healthy, just a morning walk doesn't cut it. Now, I haven't been totally lazy physically, but it could certainly be a lot better. It's going to take a TON of discipline these next few weeks to get back into my running schedule. If I'm not working, I'm working on the house and if I'm not working on the house, I'm shopping for it. I welcome you guys to call me out on running like you have so many times before; I need it!!

I didn't post a Thankful Thursday yesterday cause I wanted to make sure that you all had the Tylenol recall info as it relates to the CF community. That certainly doesn't mean however that I don't have things to be thankful for. I could literally write daily in a blog that had nothing to do with anything but thankfulness. I'm of course thankful for the new digs, but that leads me to what I was SUPER thankful for a couple of days ago. Home Depot workers.

Am I the only person who feels like an absolute moron when setting foot into Home Depot? They have hundreds of aisles full of millions of things, yet I can only identify a hammer. And that's only if it's a classic looking hammer like the one that came with my Playskool tool kit. I feel so overwhelmed in that store it's crazy. Luckily, they have some of the nicest and most helpful folk around. When Mandi and I went in there a couple of days ago, we had a worker willing to go on a wild goose chase with us all around the store. Without him, we would have been totally hosed. So thank you random Home Depot worker. I don't remember your name, but I will never forget your willingness to help :)

So that's it for today. Remember, call me out and help me get back on the running trails. I need to get in tip top shape for this little event I have coming up :)

Another Tylenol Recall

I certainly wouldn't panic, but it's always good for those of us in the CF community to know these things:

Bacteria identified in Tylenol recall

NEW YORK (CNNMoney.com) -- The Food and Drug Administration confirmed Wednesday that the bacteria found at the Johnson & Johnson plant that produced the recalled children's medicines was Burkholderia cepacia, a bacteria often resistant to common antibiotics.

Johnson & Johnson first identified the bacteria to CNNMoney.com earlier in the day.

The company said that although the bacteria was found on some drums used by its vendor to transport the raw materials, those contaminated drums never reached the Fort-Washington, PA-plant that made the recalled drugs.

According to the Centers for Disease Control and Prevention (CDC), B. cepacia is the name for a group of bacteria that can be found in soil and water.

The CDC said B. cepacia poses little medical risk to healthy people. However, those with certain health problems like weakened immune systems or chronic lung diseases, particularly cystic fibrosis, may be more susceptible to infections with B. cepacia.

The CDC also said that transmission of B. cepacia from contaminated medicines and devices has been reported in the past and that the bacteria has caused infections in hospitalized patients.

Johnson & Johnson (JNJ, Fortune 500) said that B. cepacia was found by a supplier to the factory that is operated by its McNeil division.

"Remaining drums from that lot were sent to us, all of which tested negative for bacteria. Samples of finished product also tested negative," said Johnson & Johnson spokesman Marc Boston.

However, the Food and Drug Administration's (FDA) 17-page FDA inspection report of the McNeil plant released Tuesday, said its review of seven vendor lots found some drums at the Fort Washington facility contaminated with B. cepacia.

An FDA official said, "To the agency's knowledge, no bacterially contaminated components were used in the manufacture of any of the recently recalled McNeill products. Also, testing done to date has not found bacteria in finished products."

"Still, the FDA felt there was the potential for contamination and that a recall of all of these products was prudent to protect the public health. Once again we advise that consumers not use these McNeil products at this time."

Johnson & Johnson could not immediately be reached for a response.

McNeil recalled some 50 children's versions of the non-prescription drugs on Saturday for quality concerns, including "tiny particles" in some of the products that the company said may be solidified product ingredients or manufacturing residue such as tiny metal parts.

The FDA said the recall affects some 1,500 "lots" of the drugs which were distributed both in the United States and internationally.

Original article can be found at http://money.cnn.com/2010/05/05/news/companies/childrens_tylenol_recall_bacteria/

Keep This Train Rolling!!!!!

It's good to be free!! First, I'd just like to thank everyone for all of your warm wishes and prayers while I was in the hospital. Second, well, I guess now that I'm typing, there is no second, so I would just like to thank all of you again!!

I was released from the Hole Monday afternoon and let me tell you, it feels good to be out. I don't know what it was exactly, but this last stay was a tough one. I'm the type of guy that NEVER minds being in the hospital. I can always see the light at the end of the tunnel and just knowing that I'll feel better at the end of my stay is always good enough for me. I think what happened this time was I just had way too much exciting stuff happening on the outside. I'm getting married this month. Mandi had her shower. We bought a house. We started painting the house. And by "we", of course I mean Mandi. I was reduced to being on speakerphone the first time she laid foot inside of our house as the new and official owners. I had to live through recall and pictures.

Now, let me be clear- it was a VERY good thing that I was in and got a tune-up. I thought of it this way. I made the decision that it would be better to be in the Hole a couple of weeks before we got married, then to be in a month shortly after we tied the knot. I could feel myself going down that slippery slope of sickness and knew that I had to go in to stop the slide. I am so blessed that things worked out, I responded to treatment and things only took two weeks. I don't know how much longer I could have stayed this time. My normal stay is 30 days, and thank you God, it did not take that long.

That leads me to my last little tidbit...if you didn't already read somewhere: My numbers are UP!!! I blew a 89%/73%. That 89% is my highest since a 91% in 2003. The 73% isn't the highest I've had, but it's only 2 points off from being so! It's such a good feeling to see all of the hard work and dedication paying off. I bust my butt everyday to take care of myself and push the envelope of treatments and exercise. It of course makes that commitment much easier when I see it yielding fruit. Now it's just a matter of keeping this train rolling!!!

The Ten Things That Make My (CF) Life Easier

This idea actually spun off from me thinking about how thankful I am for different things in my life. I then got to thinking about how much easier my (CF) life is because of certain things I've either bought, inherited, or stumbled upon. Here is the top ten, actually 16, and why I think they make my life better.

16. Good Veins- Having hoses running through my arms has given me the privilege of avoiding multiple sticks most of my life (except this time). I'm not sure if it's something I've done, or just inherited, but I do know that they have made my CF experience more enjoyable. I've had 30+ PICC lines though so who knows how much more they can take.

15. Foot Orthotics- The jury is still partially out on how much the orthotics will help me maintain my running schedule, but so far, so good. I haven't had any major pain to speak of since getting them made for me (Thank you POA and Lindsey).

14. Gyms- I've lived in Arizona my whole life and so far it's been 100+ degrees every summer. That's certainly not optimal outside work out weather. Luckily for me the concept of indoor gyms has been around since before I was born and I have taken full advantage of them. I've had a gym membership since I was 16 years old and although I have had several seasons of my life of consistently going and not going, the gym seems to always call me back to her.

13. My Friends- I've been blessed to always find myself with good friends. Friends who are there for me when I'm sick, but don't treat me like I'm sick when I'm healthy. They've always been understanding in that a CF life is atypical in nature but that it's important for that life to be as "normal" as possible. Often times it's completely forgotten that I'm "different" and they're always there to hold me accountable if I'm screwing up.

12. inCourage Vest System- Admittedly, I would choose a hand pound over the vest every day of the week. I got pounded by hand for the first 20 years of my life at least twice a day and I think it helped me immensely. But with that said, the vest is certainly better than a sharp stick in the eye and I'm thankful that I have a very light and portable one. I take it with me on every vacation and it's very easy to slap on while I work or browse the Internet. It's definitely an easy way to get in all of my treatments and I know that it's doing my lungs good!

11. Wintergreen Mints- It's probably just me, but I swear I breath better when I'm sucking on a wintergreen mint. I usually will have one in my mouth before doing PFTs as I think it opens me up a little. I of course have no scientific evidence to base this on, but sometimes believing that something good is happening is just as good as something actually happening.

10. Baby Bottle Cleaner- This is a fairy new piece of equipment in my house but so far it has produced wonders. I'm actually new to the whole nebulizer cleaning thing (didn't start consistently cleaning my nebs until March of this year) and I started with a hot pot at first and then moved on to just throwing them in a pot of boiling water. Now, I throw them in a baby bottle cleaner, add water, push a button, wait six minutes, and then presto bango, CLEAN NEBS! It's amazing I tell you and what I time-saver.

9. Protonix- So I used to throw-up every single morning of my life from about 1994 to 2004. This of course can be a major problem because I would eventually just be puking up stomach acid, which is not friendly on the throat, mouth and teeth. I had the same routine going of feeling sick almost immediately upon entering the shower and then about 5 minutes later I would start throwing up mucus that I had swallowed the previous night while asleep. I realize that much of this was probably psychosomatic and had just become a habit that I had fallen into, but when I started taking Protonix regularly the throwing up became less and less common.

8. Insurance- I know that I have some problems regarding insurance right now, but there is no doubt that I have been blessed with great medical care my whole life which has been paid for by my insurance company. I've really never had a struggle with getting stuff paid for, and with the exception of one time, they've never put the heat on my doctors for all of hospital stays (a direct phone call from me nipped that in the bud).

7. My Blog\The Internet- This blog has provided such a great accountability tool for me and a great way to express my views and opinions on CF and life (which happen to a lot of overlap). The Internet has allowed my to connect with people out there that I otherwise never would of as well as keep up with the happenings of the CF community and research at the click of a button. Have a question about Cystic Fibrosis? It's only a click away and you can actually get a straight answer from somebody who is going through the same kind of things.

6. Invacare 50 psi Compressor- Going from the PARI ProNeb to the Invacare Mobilaire has made a world of difference. I've cut my treatment times down by at least 50% and the medicine just makes me feel different when going in. It feels like it is having a larger impact on my lungs and it one of the best investments into my health that I've ever made.

5. My Love of Sports- Everybody who reads this blog knows that I preach being faithful with your treatments and staying active. Fortunately for me, I've always been 100% with staying active because of my love for sports. Whether it was tee-ball, YMCA basketball, high school football, or church league softball, I've always been involved in some type of sport. In fact, my longest career thus far has been coaching football which I did from 1998-2004. It required that I stay active just so I could keep up with my players!

4. Patience- Here's the deal, not everything in life is going to work out the way you want when you want. Throw a chronic disease on top of that and your life can be completely different than you ever imagined. There are ups and there are downs, but I've been given the gift of patience by God to see me through the down times. I realize that there is a plan and although I may not know exactly what that plan is, I know that He does and He'll accomplish His Will through me. I also know that His Will in my life will be 100% perfect and I was the man that he chose to carry it out. Sometimes it just takes a little patience for His Will to unfold, as it's not my timing, but the Lord's.

3. Mandi- There is no doubt that when God created Mandi, He had me in mind. There is no other way to explain that a woman exists that has everything I've ever hoped for and has opened my eyes to other qualities I never knew I needed. She is the biggest reason why I'm so committed to staying healthy. I want to be around for her for as long is absolutely possible. Not only do I want to be around, but I want to be the boyfriend/husband that she's always dreamed of. She is truly my best friend and a gift sent by the grace of God because I truly don't deserve a woman like her.

2. My Mom- When I thought of qualities that I knew I needed in the eventual mother of my children, many of them came from what I saw in my mom. She has absolute unconditional love and I knew that her family was what she cherished most. She has sacrificed more than I can list in order to provide me the best care possible starting in early childhood by selecting a job because of the benefits. She lived without so her kids could live with. She was incredibly soft and nurturing yet showed tough love when I needed it most (which was often). Most importantly though, she raised me to live my life and to never ever use CF as an excuse. That put me on the path in which I still live today, and for that, I'm eternally grateful.

1. My Faith- Truth be told, God has provided everything to me that has made my (CF) life easier. He chose my mom , He created Mandi, He gave me my talents and character, He provides me resources, and He put specific people in my life at specific times. I know that He also allowed CF into my life for a reason and that He also promises not to give His children things that we can't handle. He has already set my plan in motion and has given me the proper tools to navigate through life. I trust His plan is perfect, and thus far I wouldn't change a thing. Most of all, when I can't do it on my own (which is 99.9% of the time) He's there for me. When I need His strength it's available. When I need His grace, He provides it. When I feel uneasy, He gives me peace that passes all understanding. When I have doubt, He gives me clarity of mind. When I have sorrow, He is there to give me comfort. And when I have death, He will bring me home to spend eternity with Him.

Here's how I look at it: God and I signed a lease on my life when I was born, I don't know when the lease expires, but I do know that I'll go WAY OVER on the miles.

Mandi's Tonsil Stones

**If you have a weak stomach, you may not want to watch this video. I never knew what a tonsil stone was until this night :)

Shout Out to the Rollmans!!!!