Lung Transplant or No Lung Transplant?

For this edition of Sound-off Saturday, I wanted to re-post this blog from June on lung transplants. Make sure to check out the comments left by members below as I believe very good points were raised when it comes to transplant or not to transplant. I encourage you to add to the conversation.

**Here's is an email exchange between CFSteph and I about lung transplants and the mental aspect of being placed on the list. It is used with her permission. Please visit her blog to get some good insight into Cystic Fibrosis**

CFSteph:

I have question to pose to you:

As you may know by reading my blog I am entering the transplant stage of CF. I have really struggled with the idea of becoming active on the list.

What are your thoughts on transplants? I know you probably haven't given it much thought since your health is pretty good.

I guess I have always viewed it as a life saving operation to buy you more time. The thought now by doctors is do the transplant before you get too sick so that you have an easy recovery. What do you think about this?

Take Care,
CFSteph

My Response:

Wow, heavy question. And just so you know I absolutely love getting any and all questions and I am humbled that you would actually seek my opinion. So here it goes:

My thoughts have always been this, I'm not here for me. Meaning, I'm happy with the life I have lived and don't have a desire to extend that life by having a lung transplant. With that said however, I also don't feel like it is just my call. Like I said, I don't live my life focused on myself and I have always enjoyed blessing the lives of other people. Those people include friends, family, and strangers.

When I was younger I always said that I would refuse a lung transplant. That of course was when it was all about me. When I got to be in my late teens early twenties I said that I would get one only if I had a family and my wife or kids pleaded with me to get one. Now that I am older and wiser (haha) I have come to the conclusion that I will fight tooth and nail to keep the pair that I've got, but when the time comes, I am open to a transplant. I have been told straight up by my mom and girlfriend that it's not about me but about them :) They want me around (not sure why) and so for that reason alone I would go through with it. Now, like I said, I will do anything and everything to avoid going down that road (and as of now, I'm no where near sick
enough) but that brings me to the next part of your question.

I have always viewed transplants as trading in one set of problems for the next. I have always wondered though, "What would it feel like to take a deep full mucus free breath?" You know, the type I took when I was a young buck (or did I? I wonder that often). A lung transplant would give me that chance and as you said most likely extend my life.
Now the tricky part is timing. I have known CFers that had been in the 30 and 40 percent that recommitted their life to taking care of themselves and ended up back in the 60's or 70's. I have of course known CFers that did everything they possibly could and their lung function didn't change. So for me, I would make sure that I had exhausted all other options before going on the list

I realize where the docs are coming from and there is a lot to be said for that school of thought. Have they presented you with any studies that back up there position? If the numbers are there to support it then it would be hard to argue. I'm sure you have talked to many CFers who have had a lung transplant and it would be valuable to get there feedback as well. One in particular would be Sara over at oceandesert.blogspot.com. She's a friend of mine who had a transplant recently and would have some good info for you I am sure. I have had many other friends who have struggled with the same exact idea (as far as going on the list) so just know that you are not alone. You are having very common feelings and hesitations. I may not be the most valuable resource because, as you may have already gathered, I am very stubborn and often have a "nothing can stop me" attitude. Who knows, maybe one day that will be my undoing?

Ronnie

So what are your thought on this? I also encourage you to go by her blog and share your thoughts. Thanks

The First Time I Ran a Mile

Now, I must take this opportunity to first clear one thing up. The following story isn't of the time that I actually first ran one mile. That time would have been my junior year in high school when I ran a mile for time at the request of my football coach (it was 6m14s if you were interested). This is the story of the first time I ran a mile since my eyes have been re-opened after my 50 day hospital stay. The first time of running a mile since I started RunSickboyRun.com as an exercise journal that would keep me accountable in accomplishing my goals. That said goal, running one whole mile.

So two weeks ago Saturday, September 5th, I woke up not feeling so great. It was just a "typical" Cystic Fibrosis morning. I was a little achy, I had a headache and my lungs felt tight and junky. So, instead of the usual morning stroll, I hopped right onto my vest and inhaled medications. I generally like to "shake the cobwebs off" by taking a little morning walk, but not on this Saturday. I could feel the rumble in my chest as I took a deep breath in. I needed to inhale some albuterol stat to try and open myself up! As I was doing my treatments, Mandi asked when we were going to get our run in for the day. I said, "I don't know, what do you think?" in which she replied "After your treatments". Great, I thought, does she even know how I'm feeling, there's NO WAY I'm going to be able to run this morning.

As I sat there flipping through pages on the internet, I ended up up on my YouTube page. Right there on the front was my "Why Push Through the Tough Times" video. Right then I thought, man, I need to practice what I preach. I then started mentally preparing myself for the run that was ahead. I knew that all I had to do was run 27 minutes but that would be broken into 9 minute intervals. Granted, I knew it wouldn't be easy, but if I could do that when I didn't feel well, imagine how far I could go when I felt great!

After, my treatments finished, I started lacing up my shoes (which by the way are working out WONDERFULLY). We started the run by walking for two minutes as is required by the plan that I am on. That two minutes really seemed to fly by, and before I knew it, we were running. As time was clicking down, I remember looking at my watch and seeing that I had already run for 8 minutes and at that point I felt really good. It was then that I made the decision that I would continue running and not look at my watch again until I was physically unable to put one foot in front of the other.

I tried to get in some sort of zone between my strides, the ipod and the road. There are parts of the run that seemed to drag and forever and feel as if I wasn't moving at all or that stationary objects were somehow moving away from me. And then of course there were parts of the run that I'm pretty sure I blacked out because I can't recall a single identifiable object that we passed. What's funny though is a stationary object that was VERY identifiable ended up being my undoing.

As I made my way down A1A in St. Augustine Beach I noticed an electric speed sign that must have been set up by the police. It looked like it was at least 20 miles down the road. Of course the sign was probably only a couple of hundred yards away, but I never thought I would be able to make it. I cut myself a deal, make it to the sign, and then you can look at your watch. Well, I made it to the sign and my watch read 19 minutes and some odd seconds. Ok, push it to twenty I thought. Twenty passed. Ok, just push it until it feels like your legs are going to give out. That ended up happening at about the 23 minute mark when my body made it clear that I had had enough.

I was panting like crazy and coughing so much that there was no doubt to the people around that I had contracted Swine Flu. We ended up walking the entire way back to Grammy's house, but this time we took the beach. And if you're wondering why we didn't run on the beach, it's because we did a couple of days prior and my legs got incredibly dead very fast. I figured if I was going to give it my all that I had I would at least give myself a fighting chance.

Anyway, here's the moral of the story: When you're feeling sick, push yourself. Not only can it make you feel physically better, but you may get over a mental block as well. I know I did.

**We ended up driving our route to see how much distance we covered. I was shocked when we finished the course and the odometer read 1.5 miles!!!! Granted, I need to work I picking up the pace a little, but I'll take it!!!

Want to participate in CF awareness project?

I am looking to put together an informational flyer about CF called The Faces of Cystic Fibrosis. On it, I want to include pictures of CFers and a paragraph about the person (age, hobbies, occupation/grade, etc) and what they do to take care of their CF (treatments, medications, hospitalizations, exercise, etc). If you're interested in having yourself (CFer) or child (CF parent) featured, shoot me an email with a picture and bio about the CFer. Man...I just realized it's tough to address both CF parents and CFers at the same time, but I think you get the point...we want pictures and bios of CFers. You can send the pictures and bios to my email account at melin.amanda@gmail.com or you can send them to Ronnie and he'll send them to me. The sooner the better and the more I get the better. We are hoping to have an equal spread of males and females and a variety of ages. If I can't use them all on this flyer, I will save them for another project. Please include in the email if you're ok with me using these pictures and bios for other such materials. Below are a few examples of the kinds of pictures we're looking for:

If you don't know how to crop a photo or don't want to go to the work to do so, you can just send the picture as is and I'll crop it and make it black and white! Also, if you have a few you like, send them all on...I love pictures :)

Thanks so much for your help on this. I really really appreciate it!

Awesome Program to Help CFers!!!!

I wanted to do something a little different for this Thankful Thursday because instead of focusing on three things I am thankful for, I will tell you about one. Now, I'm very thankful for ANY program that helps CFers and their families and I'm thrilled to be able to shine a spotlight on the SolvayCARES scholarship program. I would encourage all of you to check out the different CFer profiles and stories by clicking here. Many of them are inspiring and it warms my heart to read of so many CFers doing so many positive things. I would highly encourage you to vote for the story that inspires you most as these kids are all competing for a scholarship. They've all already won a little something, so don't feel bad about picking a grand prize winner :)

This is an excerpt of an email I received from Solvay:

Anyways here is a little background on the scholarship:

40 SolvayCARES Scholarship recipients, one of whom will be named the 2009 Thriving Student Achiever, were selected to receive $2,500 for use during the academic year. As a special recognition for the amazing achievements of this year’s scholarship applicants, every eligible 2009 applicant was honored with a $500 scholarship. As a result, nearly 250 students are receiving educational funding this academic year through the SolvayCARES Scholarship program!

Furthermore, to celebrate the 17th year of the scholarship, this year's Thriving Student Achiever will be awarded $17,000! Voting for the Thriving Student Achiever starts today and ends October 15^th, click here to vote. You can vote online, call toll free or text so be sure to check out the site to learn more.

I encourage you to check out the video above and head on over to their website to look through the profiles and vote for your favorite! I think it's awesome that Solvay has a program such as this and I wanted to personally thank them for helping so many CFers.

**The only compensation I received from Solvay for writing this post is happiness. Knowing that so many CFers lives can be changed by receiving these scholarships and furthering their education puts a huge smile on my face. When I was born, the life expectancy was barely college age. Times are a changin'!

Great thing is, you can receive the same compensation by visiting

www.solvaycaresscholarship.com/

You Gotta Walk Before You Run...

...literally. One facet that I love about the running program I am on is the way it make me take baby steps. It's hard to believe that just 7 short weeks ago I was only running 1 minute at a time. I'm now on the home stretch of this program and I just got back from a 20 minute run! Now, I admit that I did stray from the program just a bit. For starters, I only ran 3 days a week instead of the 4 that it calls for and secondly, I often went beyond the time that is called for. I lift 3 days a week and I didn't want to double up on any one day and I also felt that it was important to rest one day a week. As far as pushing myself to go beyond what the program calls for: that's just in my DNA. If I felt like I had any energy left in the tank I would just go for it. I figure why not, right?

It looks like this thing is paying off as I am slated to run 30 minutes straight next week. If you're reading this thinking, "There's no way that I could run 30 minutes", let me tell you something: Those were the exact words that came out of my mouth 7 weeks ago. I remember telling Mandi that there was NO WAY I would be able to run for 30 minutes straight. I did however tell her that I would die trying (even though I knew I really had no choice in the matter...did I tell you that Mandi is an evil dictator running coach?) Well, I'm here to report that my attitude has surely changed. Next week is 30 minutes and beyond that who knows? 40 minutes? 50? One whole hour????? Only time will tell.

One thing to keep in mind through all of this though is when I run, I'm literally talking myself out of quitting the whole entire time. It's not as if all of the sudden I LOVE to run. I just know that I have to run. I know that all of the pain, all of the sweat and all of the tears (it's actually just from sweat in my eyes) will pay it's weight in gold when it comes to my lung health. Remember, at the beginning of this year I had to be on a machine to help me breath while I was in the ICU. Since I started running, I have regained my lung function and then some and it has stayed within a couple of percentage points for the last 6 months. If you ask me, I'd be a fool not to run. And even though I may never be able to "hang with the big boys" (or Mandi) when I run or even think about a marathon, it's not going to stop me from lacing up my shoes and hitting the pavement. If I just keep my feet moving, who knows what can happen?

I can tell you one thing, I'm through putting limits on myself.

This was my schedule for September 9th - 15th:

Wednesday: Travel

Thursday: 1 minute walk, 11 minute run (3 cycles)

Friday: Travel

Saturday: 1 minute walk, 11 minute run (3 cycles)

Sunday: OFF

Monday: Chest and Tricep

Tuesday: 5 minute walk, 20 minute run, 5 minute walk

My Top Ten Favorite Things to Drink

While I was thinking of a topic for a Top Ten Tuesday, I became very thirsty.

A star was born...

10. Red Stripe- I probably average 1 or 2 alcoholic drinks a month. It will generally be beer pool side and once in a while some wine with dinner. My beer of choice has been Red Stripe for as long as I can remember. I actually got the chance to take a picture in Jamaica drinking some Red Stripe with the locals.

9. Root Beer- My love for root beer started with my grandma's soda closet. She had this little closet off of her hallway that was always full of root beer (either Dad's or A&W) and Coke. I ALWAYS chose the root beer.

8. Muscle Milk Shake- By far the most tasty protein powder on the market. I generally blend it with milk, peanut butter, banana, oatmeal, yogurt and ice. It definitely tastes best after a hard workout at the gym.

7. Mountain Dew- I'll usually order this at dinner if I'm feeling a little low on energy. I'm not a big soda drinker, but when I'm eating out, this one is usually available for my drinkage. Code Red Mountain Dew isn't bad either, but I must say, it can't beat the original.

6. Chocolate Milk- Here's another love that was created during childhood. My mom always had chocolate powder available to stir into the milk to make a tall glass of goodness. I remember as a kid not stirring the chocolate in all of the way so I would get a random "bubble" of dry powder in my mouth. Man that was good!

5. Club Soda- This is my drink of choice the 1 time a year I'm caught at a bar or a club. I just get club soda straight up on ice with a lime. It tastes like a belong, yet I don't act like a moron and I can fool drunk people into thinking I have a VERY strong drink in my hand. It's amazing how easy it is to convince them that it's loaded with vodka even after they taste it.

4. Water- I probably don't drink enough of the good ol' H2O, but when I do, I prefer it right out of the tap. If I'm forced to get bottled water, I'll go with either Smart Water (cause I like the bottle) or Fiji Water (cause it tastes the best).

3. Sunkist- I buy soda from the store for myself about twice a year. Sunkist will get the nod both times. I don't know when the love for orange soda started, but I have to admit that I do love it deeply. My brother and I always fight over which orange soda is the best. What do you guys think? Sunkist or Crush or Other?

2. Powerade- I generally drink Powerade or water throughout the day. Occasionally I'll sneak in #1 if I'm dragging a bit or just have a craving. I go with Powerade over Gatorade only because it's cheaper. I also love their pink lemonade flavor (in fact, I just picked up a case of it two days ago!).

1. Coffee- I look forward to waking up in the morning just so I can have that first cup of coffee. Seriously, if coffee didn't exist, I could see myself laying in bed all day with no motivation in the world. There's just something about that first sip that just gets me every morning. I have literally NEVER turned down coffee no matter what time of the day it's offered. If you're brewing, I'm drinking (and smiling).

Let's Celebrate the Small Victories!!!!

I'm all about celebrating small victories when it comes to Cystic Fibrosis. After this report came out I think all of us in the CF community have at least a little reason to celebrate. I think this calls for a big slice of cake with buttercream frosting! Care to join?

CFRD Incidence, Mortality Rates Narrowed

Cystic fibrosis-related diabetes is present in 2% of children, 19% of adolescents and 45% to 50% of adults aged older than 30 years, according to a review of data from 1992 to 2008.

The review revealed that previously noted differences in cystic fibrosis-related diabetes between sexes and gaps in mortality have disappeared and considerably narrowed, with the exception of a higher prevalence in women aged 30 to 39 years.

“Diabetes is exceptionally common in cystic fibrosis, especially as cystic fibrosis patients get older,” Antoinette Moran, MD,toldEndocrine Today.

“In the past, the added diagnosis of diabetes has meant a patient (especially a woman) with cystic fibrosis is at increased risk for early death — this is no longer the case,” she said. “We believe the difference is that we are now screening effectively so that we diagnose early and we are treating it aggressively.”

Moran and colleagues at the University of Minnesota examined current trends in the incidence, prevalence and mortality related to cystic fibrosis-related diabetes using a comprehensive clinical database. The review included 872 patients with cystic fibrosis followed at the University of Minnesota during 1992 to 1997, 1998 to 2002 and 2003 to 2008.

Current trends

During 15 years, cystic fibrosis-related diabetes mortality rates decreased by more than 50% in women, from 6.9 deaths per 100 patient-years in 1992 to 1997 to 3.2 deaths per 100 patient-years in 2003 to 2008. Rates also decreased in men — 6.5 deaths per 100 patient-years in 1992 to 1997 to 3.8 deaths per 100 patient-years in 2003 to 2008.

The overall incidence of cystic fibrosis-related diabetes was 2.7 cases per 100 patient-years, with the exception of women aged 30 to 39 years in whom the incidence more than doubled.

Previously, diabetes was diagnosed as a perimorbid event in nearly 20% of patients with cystic fibrosis. During 2003 to 2008, only two of 61 patients diagnosed with diabetes died.

Cystic fibrosis-related diabetes without fasting hyperglycemia predominated in younger patients; however, the presence of fasting hyperglycemia rose with age.

Still, lung function is worse in patients with cystic fibrosis-related diabetes compared with patients without diabetes. Nutritional and pulmonary statuses were similar between patients with and without fasting hyperglycemia.

The data are “encouraging” because “diabetes is an expected condition as individuals with cystic fibrosis grow older,” Moran said during the interview.

The researchers attributed several reasons to the improved incidence, prevalence and mortality rates related to cystic fibrosis-related diabetes, including more aggressive treatment and early diagnosis.

Better antibiotics, digestive enzymes and respiratory therapies may have also contributed to the changes. “However, these therapies affect all people with cystic fibrosis and it is those with diabetes who have shown the greatest improvement,” Moran said.

Moran A. Diabetes Care. 2009;32:1626-1631.

If you'd like to stay up on current research articles on Cystic Fibrosis, I would suggest making your way over to the No Excuses blog. Amy does a great job staying current on all of the latest research.

Health Care Reform: He Said, She Said

Because I know not all of you, or any of you for that matter, read back through comments on this blog, I thought I would highlight an exchange from Your Health or Your Wallet? The "Choice" is Yours post from a couple weeks ago. I present to you a little "he said, she said" concerning health care reform....

He said:

One thought though... For CF'ers (and others as well) you aren't really buying health "insurance." Insurance is a bet, on your part and on the part of the insurance company. They are betting that the premiums they charge you, will, on average, be a larger amount than the healthcare they are obligated to pay for. You are betting that it will be cheaper for you to pay a monthly premium, just in case some huge medical bill occurs.

For CF'ers... it ain't a bet. You and the insurance company know there is absolutely no way you could pay premiums high enough to cover the cost of your care. So bottom line... you are asking other people to pay for care you can't afford for yourself.

I would much prefer an insurance system that functions as insurance, and find the best way to provide that as cheaply as possible. And then find a way to deal with those who are un-insurable. Rather than designing all kinds of perverse incentives into an insurance system, to deal with people who insurance isn't really the appropriate means to pay for care.

Some more random comments on the post above:

Strike all pre-existing condition clauses?

We don't demand that you be able to buy fire insurance to pay for the damages AFTER your house has burned down. Or flood insurance AFTER it is filled with water. Or car insurance AFTER you've gotten in a wreck. Or life insurance AFTER you've died. If we required the above, it should be pretty obvious that what you are buying is no longer "insurance" in any sense of the word.

So why do we demand that people be able to buy health insurance AFTER they have gotten sick?

As I said above, if you have a pre-existing condition, you aren't insurable in the true sense of the word. I'm not saying I know what the solution is for those with pre-existing conditions, but I do think that basically dismantling the insurance system to deal with those issues is the wrong way to go.

More random comments:

"fair pricing despite level of health"

I assume you mean by "fair" that all people pay the same price, regardless of their health?

Once again, compare this to other insurances you buy. Do people demand "fair" pricing for car insurance for someone with a perfect 10 year driving record versus the high school student who has been in 3 accidents already? Or "fair" pricing for life insurance for the 20 year old health nut versus the 95 year old chain smoker? Or "fair" pricing for home insurance for the $100,000 home versus the 4 million dollar mansion?

So why do we demand that all people, regardless of health status, pay the same amount for health insurance?

I know, I know... people don't always have a choice in their health status, while most of the above situations are a choice. But for those who do, I'm not sure I see why their shouldn't be a consequence for health choices. For those who have no choice in their health status... like I said, I'm not sure insurance is the appropriate vehicle for paying for health care.

"My choices in my care should not be made by my pocket book, but they are, all the time."

Not trying to be offensive, so if it sounds that way, blame it on the limits of internet communication...

Why shouldn't choice in health care be made (at least in part) by money? You make choices every day based on money. Where to live, how big your house is, what kind of car to drive, what kind of job to take, what to eat, how to entertain yourself, etc. Why should health care be any different?

In my mind, part of the problem with the current insurance system is that there isn't ENOUGH decision making based on cost. With most PPO type insurances, there is very little connection between what I pay, and how much something costs. I might only pay 10%, or a $20 co-pay, for something that costs far more. Of course, I am also paying for the rest of it, but through my premiums. There is very little direct connection between the value of a health service, and how much I pay for it.

I really think the HSA route is the way to go, because it has a huge connection between cost and value. We just switched this year, and I find myself constantly asking "Is what we are going to pay for this really worth it?" (just like I do for everything else I purchase.) I NEVER recall thinking that on our PPO. If people aren't asking that question, health care is only going to get more expensive, not less. And the public option makes even MORE of a disconnect between the cost and the value.

She said:

Few things that I feel like addressing:

1. Your analogy of other types of insurance is flawed in several ways. If all insurance was ran like health insurance, then we would have a lot of problems. Say that you had a small fire in your house five years ago. It caused no structural damage, few possessions were damaged, you didn't even use insurance money for it, but called out the fire department just to make sure your house was safe. Now five years later you buy a new home and want fire insurance. If they were like the insurance company, they could deny you because of your past history of fire. Or say, you are going to get car insurance. You've never had an accident and have a perfectly clear record. You expect to be covered without a problem. However, it seems your family members seem to crash into anything on the road, and off the road, and have several tickets. The insurance company denies you because of your family history of car wrecks. Both would happen if insurance was ran anything like "health insurance".

Also, not having fire insurance, I take a financial risk if something happens. Not having car insurance, I take a fiscal and legal risk. Not having health insurance? Not only is there a huge financial risk, but you are also risking your life. No other insurance is that true of.

2. Making decisions based on pocket book. Yes, I decide where I live, what I spend descresionary funds on, and how much I drive based on pocket book. But I can live in a cheaper house, not buy that shiny new computer, and drive a 10+ year old car... it's not going to kill me. But not getting drugs, going to the doctor, and millions of other things that are involved in health care very well could kill me.

3. I think of health insurance, or how I think health care should be paid for like the police, or the fire department, or like countless other services that my tax dollars go to. I haven't needed police help in years, but I'm very happy they are there if I need it, and I know that my community is a better place for it. My neighbor had a garage fire this week, that without the quick reaction of my neighbor and the fire department, I would have lost my own home. Again, something I pay for, rarely use, but am very glad they are there when I need it. I don't have kids, but I know that my community is better by tax dollars that go into their education, removing them from abusive situations, and helping them get vaccinated if they can't afford it. I've never been on food stamps, but I know that my community is better if everyone has something to eat. The same thing could be said about healthcare. Yes, I use it often, and many people out there wouldn't, but everyone's lives are made better by everyone having a chance at health. I don't understand how anyone could think differently.

4. HSAs are a crock. Spend a single day in a hospital and the $6,000 bill will eat through nearly every HSA account I've seen. Let's hope you don't need surgery, ongoing medication, or more than one day in the hospital... because not only is your healthcare money gone, but you also can't be insured again.

He said:

1) Sure, the analogy isn't perfect. But it is true that people are demanding things of health insurance that we don't demand of any other insurance we buy. And those demands transform it into something that is no longer insurance.

2) Again, I'll agree health care is somewhat different than other things you buy. Although where you live or what you drive could also kill you. My point was more that your comment implies you should be able to decide on your health care options regardless of cost. That isn't reality, just as you don't make any other decision regardless of cost. Which is why people argue that public healthcare always leads to rationing. Because when we don't pay for it directly (ie we make healthcare decisions with little regard to the true cost) we end up demanding far more healthcare than if we paid for it directly. We demand more healthcare than we can collectively pay for. And since the gov't controls the public option, they end up deciding based on the collective pocketbook. Which is exactly what many people are opposed to.

3) So did your neighbor have fire insurance, or did the fire department pay for all the damage caused to his house by the fire? The police only come to collect the evidence after the crime. They do nothing to reimburse you for the ongoing effects of the crime. The fire department shows up to put out the fire. They do nothing to pay for the damage your house suffers (in fact, that is why you buy fire insurance.) I would argue the healthcare equivalent to the police or fire department would be EMTs, which, oddly enough, already exist.

4) Our HSA is working just fine, thank you. And yup, one day in the hospital (which my wife already had this year) will wipe out your HSA account for the year. Which is exactly why you have an insurance policy connected to it. After her hospital stay, we had paid our deductible, and the insurance covers 100%. If I desire, next year I can switch back to the PPO that my employer offers, although I see no reason to do so. HSA's provide an incentive for me to actually attempt to save money, to consider whether the value of the service is actually worth what I am paying for it. It works exactly like insurance should... I pay for the little day to day stuff, but have insurance in case of an emergency. It's not a crock for us, and is actually working quite well so far, even with a major hospital stay.

Here's a great article in the WSJ with some excellent suggestions for how to reform the system, without going to single payer...

http://online.wsj.com/article/SB10001424052970204251404574342170072865070.html

So, who do you think wins this one? The "he" or the "she"?

I love that they both took this opportunity to share their opinions. Thanks guys! If you'd like to share your thoughts and opinions on Health Care Reform please contact me for the opportunity to write a guest post.

The First Time CF Rocked My World

The date was 1990 (my best recollection) and I was playing outside in my front yard. While I was running around in my own little world, I heard the phone ring. As I sprinted to go inside, I heard my mom yell "I got it", so I stopped just short of the front door. I then heard little bits and pieces of my mom's conversation with the mystery man or woman on the other end of the phone.

The following is how I believe the conversation went, with what I actually heard bolded and the rest from what my mom told me the doctor said.

Doctor: Hello, is Christine there?

Mom: This is she.

Doctor: Hey Chris, this is Dr. CF

Mom: Hi, Dr. CF

Doctor: I have some unfortunate news to share with you.

Mom: Ok

Doctor: I'm under the impression that Ronnie and Robbie were good friends, would that be correct?

Mom: Yeah, they're in the hospital often together.

Doctor: Well, Robbie recently underwent a surgical procedure to fix a problem that he was having.

Mom: Ok

Doctor: During surgery, Robbie's lungs unexpectedly started to fill up with fluid.

Mom: Oh no!

Doctor: All Robbie had to do was cough to clear his lungs, but we just couldn't get him to do it. He was in a lot of pain and probably lost much of his strength to muster up the cough.

Mom: And?

Doctor: Robbie died on the operating table. I'm sorry. I thought that you and Ronnie would like to know.

Mom: Well I'll tell Ronnie what happened.

Doctor: We're very sorry.

Mom: That's ok, I'll go speak with Ronnie.

So as you can see, I didn't actually witness most of the conversation had between my mom and the doctor (which by the way could have been a CF nurse). After my mom said "Oh no" I knew it wasn't good and started to walk away from the door. I'm not sure if I knew about Robbie's surgery or not, but I just knew that Robbie was dead. It wasn't common for any medical professional to call the house and my mom's reaction kind of tipped me off. I remember walking towards the street, already feeling a deep sense of sadness for my loss of a great friend. Robbie was my first CF friend and one that I spent a lot of time with in the hospital (this was before they kept us separate). I started walking back towards the door and heard my mom say that she would talk to me and hang up the phone.

My mom came outside and broke the news to me. "Ronnie, your friend Robbie was having a surgery and something went wrong. He died during the operation." Boom. The weight of a thousand bricks felt like they had just been thrown on me. There I was, a little 10 year old boy, being told that my 12 year old friend will no longer be there to hang out with in the hospital. The one guy at the time that "really got" what I was going through would never be able race me down the hall on our IV poles. Some one who I looked up to as the older "cool kid". I can still remember his smile and how it lit up a room when he walked in. He was always happy and never complained. He always "looked out" for me and treated me like a little brother. His laugh was infectious and bright teeth would glow as he cackled. Robbie was my first of many CF friends that I have lost but it still feels like yesterday that it happened.

Of course there were a million questions running through my head after my mom told me the full story. It never once made me question my own mortality, but I just couldn't understand how he could die. I knew he was "sicker" than I was, but I didn't think he was that sick. Why did he have to go into surgery? Was he in pain? What if his mom didn't smoke inside the house, would he still be alive (yes, you read that right, she smoked in the house)? The biggest question I had then is still the biggest question I have now...

Why didn't you just cough Robbie?

I lost Robbie almost 20 years ago, but as I write this, I realize how much I still miss him.

Went to the Grammy's!!!

Here's what I'm thankful for on this great Thursday....

- Home. There's just nothing like being home. It's not that I don't have a great time on a vacation (thus my need to take many of them) but I must say, I relax WAY MORE at home. I'm a big routine kind of a guy. When I'm on vacation, my routine gets completely thrown off and I feel like I'm constantly playing catch up. I explained it this way to a friend recently: Being at home feels like a vacation and a vacation feels like work. Am I the only CFer who feels that way?

My home may be smaller :)

- Grammy. As in Mandi's grandma. She was actually willing to put up with me this last week and make me feel like one of her own. She has such a warm soul and an open heart that it is pure pleasure being around her. She also has one of the best memories ever. She can recall stories from 1947 while I have a hard time remembering what happened in 2007. And as a bonus, she makes some of the best goulash (not Hungarian, grammy style) ever!

Get it?

- Tylenol. I woke up with a headache behind my eyeballs this morning. One of those "head in a vice" and my eyes are going to pop out kind of headaches. I tried the whole rubbing the temple thing. No luck. Squeezing the muscle between my thumb and my pointer finger? No dice. I then just started to press on my eye balls hoping that making them bleed would let me forget about the head pain. Then Mandi reminded me that they actually made little white pills that help these sorts of things go away. Thank you Tylenol (the generic brand, whatever your name is).

I only took 3, don't worry.

My Health Renovation

Guest post by Elizabeth Haran

ren·o·vate

tr.v. ren·o·vat·ed, ren·o·vat·ing, ren·o·vates

1. To restore to an earlier condition, as by repairing or remodeling.

2. To impart new vigor to; revive.

I have gone through many stages with my CF, trying to hide it as a kid for fear of being “different”, complete denial and non-compliance in my early college years, and finally an acceptance of what this disease really means for me and my future. About 6 months ago I entered a whole new stage, “renovating” my health. Yes, there are certainly parts of CF that are out of our control, but to a certain degree our health is dependent on how hard we are willing to work for it. I learned this the hard way. In the Fall-Winter of 2008 I was put on IV treatment for what I thought would be my standard 3-week clean-out. Instead I spent 10 weeks on home infusions and for most of that time extremely ill. For the most part I spent my days moving from my bed to my couch, every move I made sucked the energy out of me. I was barely able to get myself in and out of the bath tub and standing in the shower was not even an option. I ran a fever for weeks, at times reaching as high as 106 and my whole body ached. My doctor went through 6 different drug combinations during this time, never able to find one that actually seemed to make me feel better. He sent me to an infectious disease specialist who really had no other suggestions. I had an air-quality specialist come in to test my home to make sure there was no mold that could be contributing to making me sick. No significant mold levels were found.

I was feeling completely helpless and I looked my doctor in the eye and asked him if I was dying, because I was beginning to believe that was what was happening. His answer was that he did not think so, that I was just going through a rough patch. I have been treated by my CF doctor for the past 23 years; I trust him completely, but I wasn’t convinced on this one. Fast-forward to the end of that ten week period. My doctor figured out (not soon enough) that I was having a reaction to one of the meds called “drug fever.” While that could account for some of the symptoms that I had experienced, I got my PICC line pulled with an FEV1 not any better than when I started! 10 weeks of pure hell….for NOTHING!

Well now, almost a year later I can look at that experience and say that maybe it was not for nothing after all. There was something to gain and it may have been a blessing in disguise….

I continued as usual for the three months following the end of IV treatment trying to recover, only to have another PFT done in March, and blowing my all time low (FEV1 of 43%.) My fear kicked in again…it prompted me to make numerous drastic changes to my daily routine and as a result I have greatly improved my health. It was at this time when I stumbled across cf.com and subsequently runsickboyrun.com. I spent endless hours reading and researching about the tactics that other CFers use to maintain their health. I was surprised (or more like shocked and appalled) to realized how many things I was doing WRONG. I thought I did so much day to day to take care of myself, when in reality there was so much that I was not doing that I should have been. I decided that it was time for a “health renovation!”

I am so grateful to the members of cf.com and to Ronnie for motivating me to take control of my health and ultimately helping me increase my FEV1 by 23% since I became a member of cf.com!!! I had always been relatively compliant with my medications and treatments and “got by” but this was not enough anymore. I made a pact with myself to be 100% compliant 100% of the time. I have stuck to that over the past 6 months (no matter how early I have to get up to fit my treatments in, or if I am struggling to keep my eyes open to do my treatments at night)….and as I sit here typing this feeling better than I have in years…I am so glad that I have. At my last clinic visit 1 week ago I had an FEV1 of 65% and FVC of 118%. I have been on a “PFT high” ever since, and am more motivated than ever to work as hard as I possibly can to keep that number rising!!!

Here are the changes that I have made to my routine over the past 6 months…

1. I switched from using the Hil-rom 104 vest to using the Respirtech Incourage vest system. I like the features that this system offers and I personally find that it makes my vest sessions more productive.

2. For years I had been using the PariTrek portable compressor for ALL of my nebulizer treatments completely unaware that this unit is NOT supposed to be used for Pulmozyme or Tobi. I have now switched to using the DeVilbiss PulmoAide.

3. I began taking PharmaNAC Fizzy Tablets 2x/day.

4. I began taking a multi-strain Probiotic daily.

5. I began using the NeilMed Sinus Rinse with sterile water, and sterilizing the bottles after each use. I had sinus surgery as a child, and thankfully have not had many sinus problems since, however I still LOVE this rinse!

6. My doctor had been prescribing me Advair for a couple of years but I would rarely remember to actually use it. I now use it 2x/daily.

7. Over the past few years I really fell out of any sort of exercising routine. I was really getting no physical activity at all. I now have worked my way up doing 45-60 minutes of cardio 4-6 days per week. I also take 1 hour Pilates classes 2x/week. I truly believe adding exercise to my daily routine is one of the MOST IMPORTANT changes I made!!!

8. I am ashamed to say that I used to NEVER sterilize my nebulizer sets, just rinsed with soap and water and sometime even used them while they were still wet. Yikes!!! I have since started sterilizing after every use using the Phillips Avent IQ24 electric baby bottle sterilizer and the Germ Guardian for drying.

9. I have become much more germ-conscious (i.e. I constantly wash my hands, try not to touch my face unless my hands are clean, I never go anywhere anymore without hand sanitizer in my bad and have bottles of it all over my house and in my car. I also make it a point to change my bedding more often than I used to.)

10. For years I have been spending a majority of my time in the basement of my house. It was our family room/office. A few months ago we had some water seep in through the basement floor during a bad rain storm. This wasn’t the first time this happened and as stated above we had recently had the house tested for mold and got a clean report, but I was armed with my new “proactive” attitude and decided that it was the end of the basement for me. I banned myself from the basement. Although there are no visible signs of mold or dampness, why should I put myself in an environment where I could possibly be at risk for making myself sick? The answer is simple…I shouldn’t. This definitely wasn’t the most convenient decision considering the layout of my house. Losing the basement meant losing a significant amount of usable living space and involved some rearranging. I now only step-foot in the basement to do laundry and when I do this I wear a mask.

11. I bought two Alen350 Hepa Air Purifiers, one for my bedroom and one for my now office/TV room where I spend most of my time while I am in the house. Also I never opened my bedroom windows during allergy season…so at the very least I could be sure I was sleeping in good clean air.

12. I have not yet decided to take Mucinex on a daily basis. However, there have been two times in the past few months that I have felt like I was starting to get sick and I have immediately started taking Mucinex for 10-14 days. My doctor’s opinion on this is that it will do very little for people with CF, but it has helped me to kick two minor colds without them turning into full on exacerbations. So in my opinion it is doing something to help and I will continue this routine when I feel I need to.

It is hard to say which of these things has specifically made the most difference in improving my health, but I plan to keep it up! And I will constantly be looking new things to contribute to my “renovation.”

Elizabeth Haran is a 26 year old, who was diagnosed with Cystic Fibrosis at 6 months. She was born and raised in Brooklyn, New York where she currently lives. She graduated from St. Joseph’s University in Philadelphia, Pennsylvania in 2005 with a degree in Marketing. Her interests include photography, reading, music, the beach, shopping, spending time with her family & friends, and of course WORKING OUT and staying healthy!!

Note from Ronnie: I just wanted to give a big thank you to Elizabeth for writing an outstanding guest post for RSR. She is a great example of a CFer who decided that "enough was enough" and to take CF head-on . She has shown that although it may take some changes, through a little bit of hard work and dedication, we CAN have some control over this disease. I encourage you to leave Elizabeth 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.