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.