Cystic Fibrosis: Improving Outlook?

This month I had the pleasure of traveling to Las Vegas, NV to speak at the national respiratory conference, the AARC Congress. I was invited to speak about Cystic Fibrosis. My presentation was the title of this post. Cystic Fibrosis: An Improving Outlook? 

I gave a brief recap of the history of CF, medications, and the CFF (Cystic Fibrosis Foundation). I talked about the advancements being made in lung transplantation and how survival continues to climb post-op. Most importantly I talked about the advancements that have been made the past several years regarding Kalydeco, and other correctors and potentiators of the CFTR protein. The presentation was very well received and even Monica said she learned quite a bit! It was extremely rewarding on a personal level as it always is anytime I'm given the opportunity to speak to others about CF. I had some good questions and met several new people as well. I love speaking at these conferences! I wish I could make a living from it, lol! Minus the constant traveling that would be required of course. :)

Monica and I made it a couples trip as we always do anytime I'm invited to speak somewhere for a few days. It was our first time to Las Vegas. It was also our first trip without the boys. It's hard to believe that in almost 2 years we've never been apart from them for more than 24 hours. We handled it pretty good. They handled it great! They could have cared less, lol! When we were leaving they just kept waving and saying bye as if to say, "Get out of here already!" We did a lot of FaceTime calls with my parents and in-laws. Thank goodness for FaceTime!

We stayed at the Mandalay Bay. We were pretty impressed with it. It is huge! I expected a little more out of the room, but I guess it is just a hotel. :) I was expecting a little more of of Las Vegas in general because of all the hype regarding it. It was very neat though. Everything is very big and extravagant! We went to the Shark Reef aquarium at the Mandalay Bay, went into a bunch of shops, including the M&M store, the Hershey's Chocolate store, and the Coke store. As I said, everything is huge. Most of the stores had several stories. We saw the Blue Man Group, who I've wanted to see for years! They were GREAT!!! Highly recommend seeing them. We walked the strip a lot (about 8 miles a day). We walked through the Bellagio and saw the conservatory there. It was very neat and smelled so good with all the fresh flowers. We watched the fountain show at the Bellagio (only portions at a time) and it was pretty awesome. We got some desserts from Carlos' bakery in the Venitian. He has a bakery there and a restaurant, Buddy V's. We also ate at Caesars Palace's buffet. It was amazing!!! We ate A LOT! All you could eat snow crab legs! We probably ate about 5-6 plates between the two of us, of just crab legs! 

Overall it was a great trip, but we were ready to head home and see our boys! Here's a few photos from our trip:

Thankful Thursday: Good Trip, FaceTime & Being Back Home

It's Thankful Thursday again! Another week recorded in the history books! This week as always we have so much to be thankful for. Last week we were saying how thankful we were that we were going to be meeting our boys! We have had so much to be thankful for lately! There is always something to be thankful for, even in the midst of a storm, we can find thankfulness. This week I'm going it alone as Monica is very busy with nursing two boys every 3 hours. She needs her rest.  So here it is, my list:

Jeremy's List:

This week I'm thankful for a very good trip. I traveled to Kings of Prussia, Pennsylvania yesterday at 4:15 pm and returned home today around 3:30. I was gone less than 24 hours! I was giving a presentation I have given at several other RT conferences. The trip was a very good one! It was very quick, but very good. The hotel was very nice! I had the chance to meet up with a gentleman I met in New Orleans. We went to dinner when I arrived with several other people. It really was a good time! Got a full nights sleep, which I felt a little guilty for given that my poor wife was at home sleeping in 2 and a half hour increments. Got up and gave my presentation that went very well. I always fear it will not go smooth. Grabbed a quick bite to eat and was whisked away to the airport to fly home! I'm extremely grateful to those who made the trip possible and for their awesome hospitality!

I'm also thankful for FaceTime. FaceTime is like Skype between iPhones. It takes a lot less time to connect and I have found generally has a better picture and connection. I was missing my wife and boys pretty bad last night while laying in the hotel, and this morning I woke to FaceTime with my wife! It was awesome! I got to see her and the boys! Jace was awake and Jeriah was sleeping. It was great to get to see the 3 people I love most in this world! Thank you Apple for FaceTime!!

I'm thankful for getting to return home so quickly to my family! I missed them more than I thought I would. After all, I was not even gone a full 24 hours, yet I missed them pretty bad! I had a picture of both boys in my presentation today and was grateful everyone started clapping so I could regain my composure... I almost shed a few tears. Completely caught me off guard too! It was so nice to come home to my wife and boys today! While we were still in the hospital I had quite a bit of bonding time with Jeriah. Jace was kept in the nursery more because of his episodes and then had to have a test done. Today when I got home, Jace woke up to eat and stayed awake after. I carried him around for a good hour or two just talking to him and looking at him. They're both such good babies! It's great to be home!

So what are you thankful for today?!

Exciting week!

This week is going to be a very exciting week! We are so blessed and have a lot to look forward to this week. This evening, some friends invited us over for dinner. It's a friend of Monica's that she went to high school with, played volleyball with, and is close to. We haven't seem them in probably a year or so and are very excited to spend the evening hanging out!

Tomorrow we have an OB appointment! Who would have thought that I would get so excited about going to see that kind of doctor! Man how things change the older you get. I'm so excited to see how our babies are doing! I can't wait to hear their heartbeats and hopefully get to see them again! It has been WAY too long! We haven't seen them since they were 10 weeks old!!! That was over a month ago! We are super excited and should hopefully get to schedule an appointment for an ultrasound in a few weeks to find out the genders! WHOO-HOO!! It seems to be flying by. Monica's belly seems to be poking out little by little these days. I can't wait to post some 16 week photos this Friday!

I have my last set of double header softball games this Thursday. I really enjoy playing, especially when we win!

Friday we are off to New Orleans! I have the privilege of getting to speak at a respiratory conference at the national level about living with CF. I'm really excited to have several days with Monica. Things have been pretty hectic around here lately, and I can't wait to have 5 days away with each other. This is one of those times that CF has been a blessing! If I didn't have CF I would never have had this opportunity or all the others I've had this past year to speak to people about CF. This will be the second time I've gotten to travel to speak. It's very humbling. I can't wait to see the bayou! To hear the music, eat the food, and who knows.... maybe catch me an alligator! I'm very excited to try alligator too, by the way.

All in all it's going to be a good week! I'll keep you posted as things unfold!

Make an Impact

My presentation in Cape Girardeau was yesterday and it went pretty well! Everyone there said I did amazing, but for some odd reason I was a little more nervous than times before and it felt it didn't go as smooth. BUT the day was a success! Half the room or more were respiratory therapy students, and I got to have a heart to heart with them and encourage them not to get into the field for a paycheck, but to become a therapist for the right reason, to change people's lives. To help people and make a positive impact on them. I tried to give them an idea of not only how important this is, but that it really happens. That RT's, RN's, MD's, people everywhere can make a positive impact on someones life so much so that they'll never be the same!

Take me for example. There's this RT, his name is G.W. I call him G-dub! He took care of me on my first admission to the hospital when I was 18. I know I am blessed to have never been admitted before age 18. I wasn't taking care of myself though. G-dub wasn't afraid to point out the obvious and help me realize how blessed I am to have never been admitted. He really motivated me to start doing my treatments.

I only saw G-dub that one time, but never forgot him. Fast forward 4 years, and I got my first RT job at Barnes-Jewish on nights. Guess who my supervisor was...... yup, G-dub! I recognized him from the get go. Once I told him my story he remembered me, and went right back to busting my chops about my lack of doing treatments. I was doing them more frequently at this point but not daily. He would call me in his office every shift to ask if I did them or not and to check in with me to see how I was doing. He cared.

We became good buddies, and I told him when I was going to propose to Monica. He was ecstatic for us, but pointed out that my inconsistent treatment regimen had to stop and become a daily routine. He was the first to open my eyes to the fact that I would soon be responsible for my wife's well-being and I needed to have my own well-being under control first. It was a HUGE eye-opener. He cared enough to say it. Let me add that G-dub did indeed bust my chops, however, he could always tell what my mood was and whether to bust em bust em, or go easy and encourage me. He was way more than a supervisor, he made a HUGE positive impact on my life, and I haven't been the same since.

I saw G-dub at the conference yesterday. It was awesome to see him again. Guess what he did while we caught up? Busted my chops! hahaha! They needed busting. I woke an hour earlier than  normal today to do my treatments. Making sure that I'd get 2 sets of treatments in today. And I will continue to do that. Why? Cause G-dub made an impact on me a long time ago and I know he's looking out for me. We had a broment, and he told me I needed to be doing my treatments twice a day with exercise, not once. He's also working on helping me get an IPV! If you've never used one I suggest looking into it! They're are awesome for moving that "Marlboro pudding" (as one of my patients called it) out of your lungs! There's a new portable IPV unit out. Looks to be a game changer, lol! G-dub's a believer and thinks it will significantly increase my PFT's so I say, Hey, Let's do it! :)

Has anybody made ever made a life-changing impact on you? Have you impacted somebody's life? You most definitely have the ability to! Stay positive and be an encouragement to the people around you and people you meet! You never how you'll change someone's life by simply caring! Even if you only meet them once...

More presentations?

First let's start out with a little late Thankful Thursday action, then we'll get into the presentation business. Monica and I were gone to the state fair all day yesterday with her family so we were unable to do our usual Thankful Thursday post. When I say all day, I mean all day! We got up around 7:00am left at 8am and didn't get home until 11pm. We were whooped! BUT, it was a GREAT day! So what are you thankful for?! I know there's something so tell us by posting a comment below!

Jeremy's List:

I'm thankful for these:

     

           

These are Asics Kinsei's! They are Monica and I's new running shoes! The top 2, with the orange, yellow, blue and red are mine. The bottom ones with the yellow, pink, purple, green, and blue are Monica's! They make a HUGE difference when running! Monica had wanted a new pair of running shoes for awhile and we had been looking. She did some research and found that Asics are supposed to be the best running shoe. We went to try some on and found out that the Kinsei (pronounced ken-see) are Asics' best shoe. Of course then that's what I wanted to by her! Only the best for my wonderful wife!!! She had been running in Nike Shox. The salesmen (a friend of ours) had a horrible look of shock when he heard this. She has never had problems with her feet or knees and has been skiing her whole life, but after a month of running her knees were starting to hurt. Our friend said the Shox HAD to be the source of this pain! :) The new shoes are awesome! I'm thankful for them and the motivation they give me to run more!

I'm thankful for opportunities! After I gave a presentation to my department last October, I was asked to give it at the Missouri state conference, which you may recall me talking about. I'm not sure if I've mentioned anything beyond that or not, but I was asked to give the presentation 3 more times!! Next monday the 13th, I'll be traveling to Capo Girardeau to give it at a local respiratory conference. Then on September 7th, I'll be giving it locally in Fenton, MO. Lastly, on November 13th, I'll be in New Orleans, LA to give it at the AARC Congress (the American Association for Respiratory Care national conference)! Crazy how fast things happen sometimes isn't it?! I count it as a huge blessing to get to spread awareness and be able to take my wife to see New Orleans! Can't wait! I'll post more as these events unfold!

So what are you thankful for today my friends?!?!

Thankful Thursday

Well as I mentioned in my previous post, we want to start doing Thankful Thursdays. Ronnie and Mandi at runsickboyrun do a post every thursday where they each say a few things they are thankful for. I love it and look forward to reading the things they are thankful for! Like them, Monica and I agree that there's ALWAYS something to be thankful for! So anywho, here's my list:

I'm thankful for my health! That may sound weird to some, but I really am. I see so many people at the hospital (where I work) everyday that have so many various health problems going on, that it makes me thankful for my health! I have complete use of my arms and legs, I'm thankful for that! I can talk and don't have a tracheostomy (a hole in your throat to breathe through)! I'm just thankful that I am in good health, able to exercise and live my life to the fullest!

I'm thankful for sunny, hot days! I really dislike the cold, I'd be ok with 2 or 3 weeks of snow and cold weather a year, and then back to the 80's and sunny! I don't mind sweating at all. My blazer has no AC, so when it gets hot..... I sweat! lol! It seems all my vehicles have lost their AC at some point despite efforts to fix it. So I just accept it, and sweat! To me sweating comes with sunny days, and I love sunny days so much that I almost love to sweat! Haha, I'm saying sweat a lot, I know. Sunny days put you in such a good mood and seem to give you extra energy, which in turn gives me more motivation to GET MOVING as Ronnie says and exercise! Spring and Summer are my favorite seasons and I look forward to them every year, no matter how hot it gets!

Lastly I'm thankful for opportunities. I was given the privilege of speaking at the Missouri Society for Respiratory Care state conference about living life with CF to RT's from all over! It went phenomenally well! I met some amazing people, and reconnected with a close friend, G.W.! He is one of those RT's that I talk about in my presentation. He truly cared about my health and whether I was taking care of myself and really pushed me and motivated me to take better care of myself. He always watched out for me and has ever since! I guess that's another thing I'm thankful for..... people who care! It seems I'm surrounded by them and I feel tremendously blessed! Going back to the presentation, I've had offers to speak at another conference, have my presentation published, and give 2 presentations to groups of kids! When God opens doors, He opens doors! :) The presentation will be at the bottom after Monica's Thankful Thursday list if you care to watch it!

Monica's List:

I'm thankful for cake... yes, you read that right C.A.K.E.... CAKE!!!! It comes to my mind because I stopped trimming and undercoating the cake I'm working on, to write this. Fancy that! ;-) Seriously though, I LOVE what I do!! Ever since I can remember my dream job was to be a cake decorator! For those of you who do not know, I am a baker and cake decorator. I am so thankful that I am able to do what I love! I know many people who wouldn't be able to say that... so I know it's a blessing! I am thankful for my job! I work at Costco as a baker and do specialty cakes on the side. I work with some awesome people and have a great schedule! I actually look forward to going to work most of the time! I just can't complain!! I am thankful for actual cake though, I don't eat it very much (You're probably thinking, "Yeah right!!"), but when I do I am thankful that it tastes SO GOOD!!! Thank you God for cake! MMMMM....Who wants cake now?!

I am thankful for our mini vacation to the Ozarks for Jeremy's presentation! We actually had a lot of down time together and I treasured every minute of it! Life can get so busy and it's easy to get distracted by all the things that have to get done. It was nice to slow down and spend quality time together, just the two of us! I am thankful for my hubby! To say he made me proud when he gave his presentation would be the biggest understatement of the year! He is a Wonderful man! He has fixed dinner twice this week, for me, while I've been busy working on my cake. I am very appreciative of such a good helpmate and a man who isn't lost in the kitchen!

I am thankful for God's word, the Bible. It has become so precious to me! God never ceases to amaze me! He continues to reveal Himself to me through His word, and I am so thankful for that! I never put it down without feeling he poured something back into me! I am thankful that we have a personal God who cares about our every need... and want! He has blessed me more than I could ever explain! I could go on... and on... and on... of the things I am thankful for and the blessings He has placed on my life. But I will stop there, until next thankful Thursday! What are you thankful for?!

CF Talk

What up ladies and gents! So I'm not sure if I mentioned it yet in a previous post (pretty sure not) but in October of 2011 I was asked to give a presentation to my department about what it is like to live with CF. I work at Barnes-Jewish as a respiratory therapist. So I gave it and it went over really really well! I gave it 3 times in 1 day actually so all the shifts could hear it. When the director of our department heard it, she said she wanted me to be submitted to give the talk on a state and national level and work on getting it published! Total shock to me!

Well I got approved on the state level!!! On April 27th I will be giving my presentation to RT's from all over the state, some from out of state, in the Lake of the Ozarks at the Lodge of the Four Seasons Resort!! The conference is called the MSRC (Missouri State Respiratory Care) Conference. I also found out that Monica can go with me! Whoo-hoo!! So she's gonna chill at the resort, shop, swim do whatever while I attend some other presentations and earn some CEU's and then we'll have our evenings together! I'm really excited about the opportunity and can't wait to see where this thing goes from here! I also signed myself up for a 5K down there! Monica and I have been running 5 miles once a week so I think I should be moderately prepared as a 5K is only 3.1 miles. My goal is to run the entire thing, no breaks! Right now I wouldn't make it, but hopefully by then I will! Who wants to sign up for one with me?!?! Any takers?!