The title of this post says it all. I have a twitter follower request from a 24 year old woman waiting on her new lungs. Cystic Gal got her lungs right around age 30. The boy JM I've mentioned before got his lungs in December. Even Grey's Anatomy today was about a CF patient getting his new lungs! I read Facebook posts, blog posts, tweets, and news articles about people getting new lungs. I even cut open a sheep's lung the other day in my Anatomy & Physiology II lab. Lungs lung lungs. I like mine. I'd like to keep mine. I hope to never have to give them up.
My good results from Cayston at the last check up gave me hope. If I stick with Cayston, Albuterol, Pulmozyme, and the Vest, plus my cardio I'm adding next quarter...well, let's keep these air bags healthy!! Sound like a plan?
At my last appointment, I spoke with JM's mom. She spoke about his year prior to his transplant. It was a very tough year for him, brought on mostly by his own personal life choices that had finally all caught up with him. She asked me a question that never in my wildest dreams would someone ask me at this point in my life: "Have you ever had to be on a ventilator?" The look of shock on my face was clear. Of course not. I'm 20, healthy, and living my life. Why on earth would I be vented? Well JM had and his mom described it as one of the most terrifying things.
Hello, motivation.
While my doctor's have never even whispered the word "transplant" to me, and my PFTs are too high to even think about it, it sure has been on the front of my mind a lot. I'm actually kinda bullied into being on top of my treatments by the overwhelming amount of transplant talk. Is that a good thing? Maybe. The result of the lingering topic is good, but being scared into good health isn't. I'm hoping that I can alter my own attitude from being afraid to being proactive. Either way, I plan on keeping these lungs forever by taking care of them and staying in shape.
I once told my friend, crying, that if I was ever excited about being on a TX list that she needed to snap me back into reality. While it may be an exciting time for many people, and congrats to them, it is some place I hope to never be.
I apologize if some of you find my last statement offensive. It is not meant to degrade anyone, but simply voice my personal feelings about the situation in regards to myself.
On a lighter note, I'm done with Winter Quarter! I get a short break, then back for 2 days, then off for MARDI GRAS! Sophomore year is flying by. WEIRD.
Sorry for being MIA lately. I really had to buckle down and focus all free time on school. You even missed a leg injury that I really thought was a fractured bone!! 2 weeks later (today), it still hurts to the touch and sometimes even to walk. So maybe I did do something to it. Regardless, I'm a quick healer and was walking normally by the next day.
That's all for now. Hope to be back posting more often now that I'm done with finals!
-Annie
Thursday, February 24, 2011
Monday, February 7, 2011
Interview with Fatboy and Beautiful!
Many thanks to CF Fatboy and his wife Beautiful for taking time out of their busy schedule to answer a few questions!
Fatboy's interview!
1. Tell the blogging community a little about yourself, Fatboy.
We live in Tampa and I graduated high school with a full-ride scholarship to USF (Go Bulls!), which I promptly lost and had to get a job. 13 years later, I finally graduated and got on with my life with that monkey off my back. I proposed to Beautiful the month after she graduated from USF (we dated her whole time at college) and were married that fall. That was 4 years ago! We now have a townhome, 2 cars, 0 kids, and 0 pets - almost average by all accounts.
2. When were you diagnosed and how did your family react?
I was full of crap coming out the chute, so they knew I had issues. I suppose they were freaking out about how to pay for all the surgeries I needed and relieved to know what was wrong with my older sister. She lost her fight a couple years later, so all of their energy was spent keeping me going, and here I am - 32 years old living life better than they could have dreamed 28 years ago.
3. What are your gene mutations?
ΔF508/ΔF508
4. Tell us a little about your medical history; surgeries, hospitalizations, and anything else other than CF that plagues you!
Meconium ileus, jejunal atresia, 10 sinus surgeries, and countless blockages. I have a knack for getting in-grown hairs that require a trip to the family doctor for some scalpel work. Other than that, CF is pretty much the root cause of all of my health issues, though I may be facing diabetes (even from otherwise healthy family members) and rheumatoid arthritis in the next 10-20 years.
5. What has been your greatest motivation throughout the years to stay healthy?
Times past, nothing. Now, I have Beautiful. I'm not allowed to die before her.
6. What has been your greatest challenge?
Finding balance between relationships, work, health, and "me time." I am a workaholic who is a recovering lazy butt by nature (though never really by actions - strange, I know) who is finally living the dream of owning my own company, working from home, and finally trying life with one income for some added sanity. This constant drive to work has a negative impact on my health because stress directly affects my weight and ability to fight off infections while wife and "me" time are left fighting it out for the available time when I'm not working.
7. Who is your greatest inspiration and why?
I'd have a hard time deciding between Beautiful for putting up with me and Joseph in the bible for all the crap he went through being sold into slavery and how he persevered to become the second most powerful man in the land. I sometimes think I have his determination, and that helps keep me going sometimes. It's a great account of a great man, for those who haven't read the whole thing.
8. What is your greatest fear about having CF?
Leaving Beautiful with a mortgage and a bunch of business deals that she would have to make contact with to tie up lose ends and some freak thing where my life insurance gets denied on a technicality, leaving her only with what we have saved. I do NOT want to leave that as legacy!
9. What are you most grateful about for having CF, if anything?
It keeps me humble. It's my thorn in my side. That's all I have to be thankful for having it, even though some nice things have come from the people I meet and things I do, but I'd never wish it upon my worst enemy.
10. What are your goals for your CF health and your life in general?
I will be here for the cure and the eventual progress with transplants to get new lungs after they perfect the whole rejection thing and will outlive everyone in my generation and above me, looking like a pro athlete all the while; the more like a linebacker, the better.
11. So why did you enter the blogging world and what did you hope to accomplish with it?
Unrelated to CF, I started blogging in 2005 and made quite an alias name for myself back then. One thing led to another to another to another, and when I was finally ready to turn my CF health around, blogging about it was the natural thing to do. I aim to change the standard of thinking about CF and what people can do with it and how they can beat its natural progression.
Now that all of those tips and steps are there, I am moving more into motivational topics. It's so easy to default to letting life get you down, even for healthy people, so anything I do to put some positive things into daily living to stand out from the din of depression that is the majority of life's input into our minds will hopefully help others, too.
12. Continuing with the previous questions, what HAVE you accomplished with your blog?
I've heard from quite a few people that I've done just that already, so I aim to keep on keeping on. So far, moms have changed their thinking from despair and grief to hope while guys just like me have ditched the idea that CF has complete control over when we go on IVs, making gaining weight a key component to healthier life.
13. Why did you decide to sell the CF Awareness Bracelets and how would someone go about ordering one?
I decided to sell them after we attended our Great Strides walk and they gave us yellow bands for the leaders (Hello, Lance Armstrong) and blue ones for the other walkers. What the heck? CF's color is purple. I looked around and couldn't find any purple CF awareness bands online. I'm out of stock right now, but we just ordered more this week, so when they arrive in the next couple of weeks, they can be snatched up at http://www.cffatboy.com. Coming soon, we will have some more options for CF awareness, but we are going to work out those details when I have finished some more projects.
14. So I read on your blog the other day that your wife is now working with you. How’s that going?
We are 2 days in and so far so good. We just celebrated our second company anniversary on Groundhog Day!
And let's hear from Beautiful!
1.Tell us about yourself, Beautiful!
I'm 26 years old. I'm a University of South Florida graduate. I majored in Business Administration with a minor in Marketing. I married the best husband ever, 4 1/2 years ago. I enjoy shopping, scrapbooking, reading, and blogging.
2.When did you and Fatboy start dating? How did you meet?
We started dating right after I graduated from high school. Our families went to the same church, so we met doing youth group activities together. We dated all through my time in college, and got engaged as soon as I finished my degree.
3.When did he tell you he had CF and how? How did you react? How were you able to accept it?
I kinda always knew something was "wrong" with him, but I didn't know what it was. It was pretty sad and scary to think that he was never going to get better. I just had to decide that I would rather spend as much of my life with him for as long as he had, then to leave him now because of the fear that he might get sick sometime.
4.What roles do you play in Fatboy’s health?
I try to encourage and remind him to do all of his treatments everyday. I keep track of all of his prescriptions and fill his pill container with his daily vitamins. I also try to plan meals that I know I can add a little extra calories/fat to his portion, like topping his half with extra sauce or cheese.
5.You have a blog of your own! Why did you decide to start blogging and what did you hope to accomplish with it?
Jesse had been trying to talk me into my own blog for a long time. I honestly didn't think that anybody would read it. Then I realized how much time I spent enjoying other people's blogs and thought I would finally give it a try. I really enjoy it because it gives me a chance to process things that happen in our lives and share them when I'm ready. The best thing about blogging has been all of the CF friends I have been able to meet. It is so great to get to know other people that are going through the same things that you are.
6.Are you excited about working with your husband from home?!
I am so excited about starting to work at home. We have been wishing we would be able to do this for a long time. I can't wait to see what great things we are able to accomplish this year by putting all of our energy in one direction!
Thanks again! Please pay them a visit at www.cffatboy.com and www.kristinology.com!
-Andrea
Fatboy's interview!
1. Tell the blogging community a little about yourself, Fatboy.
We live in Tampa and I graduated high school with a full-ride scholarship to USF (Go Bulls!), which I promptly lost and had to get a job. 13 years later, I finally graduated and got on with my life with that monkey off my back. I proposed to Beautiful the month after she graduated from USF (we dated her whole time at college) and were married that fall. That was 4 years ago! We now have a townhome, 2 cars, 0 kids, and 0 pets - almost average by all accounts.
2. When were you diagnosed and how did your family react?
I was full of crap coming out the chute, so they knew I had issues. I suppose they were freaking out about how to pay for all the surgeries I needed and relieved to know what was wrong with my older sister. She lost her fight a couple years later, so all of their energy was spent keeping me going, and here I am - 32 years old living life better than they could have dreamed 28 years ago.
3. What are your gene mutations?
ΔF508/ΔF508
4. Tell us a little about your medical history; surgeries, hospitalizations, and anything else other than CF that plagues you!
Meconium ileus, jejunal atresia, 10 sinus surgeries, and countless blockages. I have a knack for getting in-grown hairs that require a trip to the family doctor for some scalpel work. Other than that, CF is pretty much the root cause of all of my health issues, though I may be facing diabetes (even from otherwise healthy family members) and rheumatoid arthritis in the next 10-20 years.
5. What has been your greatest motivation throughout the years to stay healthy?
Times past, nothing. Now, I have Beautiful. I'm not allowed to die before her.
6. What has been your greatest challenge?
Finding balance between relationships, work, health, and "me time." I am a workaholic who is a recovering lazy butt by nature (though never really by actions - strange, I know) who is finally living the dream of owning my own company, working from home, and finally trying life with one income for some added sanity. This constant drive to work has a negative impact on my health because stress directly affects my weight and ability to fight off infections while wife and "me" time are left fighting it out for the available time when I'm not working.
7. Who is your greatest inspiration and why?
I'd have a hard time deciding between Beautiful for putting up with me and Joseph in the bible for all the crap he went through being sold into slavery and how he persevered to become the second most powerful man in the land. I sometimes think I have his determination, and that helps keep me going sometimes. It's a great account of a great man, for those who haven't read the whole thing.
8. What is your greatest fear about having CF?
Leaving Beautiful with a mortgage and a bunch of business deals that she would have to make contact with to tie up lose ends and some freak thing where my life insurance gets denied on a technicality, leaving her only with what we have saved. I do NOT want to leave that as legacy!
9. What are you most grateful about for having CF, if anything?
It keeps me humble. It's my thorn in my side. That's all I have to be thankful for having it, even though some nice things have come from the people I meet and things I do, but I'd never wish it upon my worst enemy.
10. What are your goals for your CF health and your life in general?
I will be here for the cure and the eventual progress with transplants to get new lungs after they perfect the whole rejection thing and will outlive everyone in my generation and above me, looking like a pro athlete all the while; the more like a linebacker, the better.
11. So why did you enter the blogging world and what did you hope to accomplish with it?
Unrelated to CF, I started blogging in 2005 and made quite an alias name for myself back then. One thing led to another to another to another, and when I was finally ready to turn my CF health around, blogging about it was the natural thing to do. I aim to change the standard of thinking about CF and what people can do with it and how they can beat its natural progression.
Now that all of those tips and steps are there, I am moving more into motivational topics. It's so easy to default to letting life get you down, even for healthy people, so anything I do to put some positive things into daily living to stand out from the din of depression that is the majority of life's input into our minds will hopefully help others, too.
12. Continuing with the previous questions, what HAVE you accomplished with your blog?
I've heard from quite a few people that I've done just that already, so I aim to keep on keeping on. So far, moms have changed their thinking from despair and grief to hope while guys just like me have ditched the idea that CF has complete control over when we go on IVs, making gaining weight a key component to healthier life.
13. Why did you decide to sell the CF Awareness Bracelets and how would someone go about ordering one?
I decided to sell them after we attended our Great Strides walk and they gave us yellow bands for the leaders (Hello, Lance Armstrong) and blue ones for the other walkers. What the heck? CF's color is purple. I looked around and couldn't find any purple CF awareness bands online. I'm out of stock right now, but we just ordered more this week, so when they arrive in the next couple of weeks, they can be snatched up at http://www.cffatboy.com. Coming soon, we will have some more options for CF awareness, but we are going to work out those details when I have finished some more projects.
14. So I read on your blog the other day that your wife is now working with you. How’s that going?
We are 2 days in and so far so good. We just celebrated our second company anniversary on Groundhog Day!
And let's hear from Beautiful!
1.Tell us about yourself, Beautiful!
I'm 26 years old. I'm a University of South Florida graduate. I majored in Business Administration with a minor in Marketing. I married the best husband ever, 4 1/2 years ago. I enjoy shopping, scrapbooking, reading, and blogging.
2.When did you and Fatboy start dating? How did you meet?
We started dating right after I graduated from high school. Our families went to the same church, so we met doing youth group activities together. We dated all through my time in college, and got engaged as soon as I finished my degree.
3.When did he tell you he had CF and how? How did you react? How were you able to accept it?
I kinda always knew something was "wrong" with him, but I didn't know what it was. It was pretty sad and scary to think that he was never going to get better. I just had to decide that I would rather spend as much of my life with him for as long as he had, then to leave him now because of the fear that he might get sick sometime.
4.What roles do you play in Fatboy’s health?
I try to encourage and remind him to do all of his treatments everyday. I keep track of all of his prescriptions and fill his pill container with his daily vitamins. I also try to plan meals that I know I can add a little extra calories/fat to his portion, like topping his half with extra sauce or cheese.
5.You have a blog of your own! Why did you decide to start blogging and what did you hope to accomplish with it?
Jesse had been trying to talk me into my own blog for a long time. I honestly didn't think that anybody would read it. Then I realized how much time I spent enjoying other people's blogs and thought I would finally give it a try. I really enjoy it because it gives me a chance to process things that happen in our lives and share them when I'm ready. The best thing about blogging has been all of the CF friends I have been able to meet. It is so great to get to know other people that are going through the same things that you are.
6.Are you excited about working with your husband from home?!
I am so excited about starting to work at home. We have been wishing we would be able to do this for a long time. I can't wait to see what great things we are able to accomplish this year by putting all of our energy in one direction!
Thanks again! Please pay them a visit at www.cffatboy.com and www.kristinology.com!
-Andrea
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