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:

Hernia Recovery Update

These posts are more for me than anything. I think it'll be neat to have a journal of sorts to keep track of things we go through in life. With that being said, here's some rambling about what's gone on since the last post.

It's been 3 weeks to the day since my surgery. I'm still amazed at how much smoother the recovery has gone this time around. I expected that with the same size incision (actually it's an inch longer at 10 inches this time) the recovery would be the same as in March. It's been leaps and bounds better! I'm getting around almost like normal. I got the drain, staples and sutures removed this past Wednesday. The difference after that alone was night and day. The area around the drain had become very red and irritated and was the main source of pain. Coughing was still rather painful because of the drain and the staples.

Since those have come out I'm virtually pain free. I have one spot that gives me a lot of trouble only when I cough in any other position besides sitting. So for now, anytime I need to cough, I try to hurry and sit down somewhere so it doesn't hurt. As long as I'm sitting, it doesn't hurt at all. It's very strange. The nurse and doc said I may have some pain from where the drain was, and the source of my pain now is exactly where the drain stopped under the skin. Besides that, I feel really good! Now the hard part is taking it easy.

I feel really good, so I will be more inclined to start doing a lot more and lifting more. The surgeon told me I can increase the amount of weight I lift by 5 pounds each week, starting at 10 pounds. Pain being my indicator as to when I'm going too far. My first feat will be to tackle the yard. My sister was kind enough to mow the front yard for me after I got out of the hospital, after 2 weeks of not being mowed. It's been another week and a half and we've had a lot of rain since the last mow. It's looking like a jungle again. The backyard hasn't been  mowed for almost 4 weeks now. It really looks bad! They boys were out playing in the backyard today and Jace found some weeds that were up to his chest. No joke! His chest! It's gonna be a blast mowing that, lol. It'll be good exercise though. I do have a self-propel mower that I will take full advantage of as well.  I have a CF clinic appointment Monday. I'll post the results of that. I'm anxious to see where my lung function is at.

Everything has been going good around the Parks' home! The family is happy and healthy! Life is great!

If Time = Money, I'd be more Wealthy

I have a little over an hour of time added to my days now! How did I accomplish this you ask? I didn't switch to a different way of telling time where there are 25 hours in a day. I got a new nebulizer machine. Actually it's a compressor. I noticed that several of my fellow Cysters and Fibros had the same machine. I read several reviews on various CFer's blogs, did some research of my own on the internet and decided to purchase this specific compressor.

My treatments used to take me over 2 hours a day and I wasn't getting the full treatment. I often cut each treatment short so I wouldn't spend 2 1/2 hours sitting taking treatments. With my new compressor it takes about 30 minutes to complete my treatments on Cayston months and about 45 minutes on TOBI months. Each treatment runs until it is BONE-DRY! I'm getting my full treatments and have cut my treatment times by more than half! I couldn't be happier! In the CF world, this is HUGE! We spend so much time doing treatments and exercising, any way to cut down on that time, gives us a more normal life. This means more time to spend with my boys! More time to exercise! Less times that we as a family will have to show up late to family gatherings, etc. I'm ecstatic! So, if you're spending a long time taking treatments, I suggest taking a look at your nebulizer machine/compressor.

By now you're probably wondering what machine I purchased. Ok, I'll spill the beans. I bought an Invacare MOBILAIRE 50 psi compressor. To read more about it, click on the name.

Unfortunately, my insurance couldn't get me one. None of the companies my insurance gets equipment from carried the compressor. The Invacare website has it listed around $400. I was able to find one online for $275 with shipping included. I couldn't be happier with it! Worth every penny!

Just a little fyi for any CFers that read my blog. I love it, and feel obligated to share the knowledge. Hope it helps!

Surgery #2 of 2014

March 2014 surgery incision

For those of you that don't know, I had my second pretty major surgery of the year. In March, I had a bowel obstruction caused by scar tissue from two prior surgeries (1984 & 2005). It required emergent surgery. I had a short 5 day stay post-op and a 6 week recovery. It was much more painful than I remember from 2005. I had to dress a 2 inch portion of my incision that had been left open for draining purposes. Overall, it was a lot harder than I remember and a whole lot more painful (did I mention it was very painful). The surgery in 2005 was the exact same scenario, bowel obstruction caused by scar tissue, only it wasn't emergent. I don't have any pics from that surgery.

Fast forward to a couple months ago and I noticed a bulge in the center of my stomach near my belly button. I knew instantly it was a hernia. I could just tell. On the plus side, it didn't hurt. I had no feeling left in that area of my stomach from all the surgeries. After a couple weeks, it kept growing, sticking out more and more. I called and had an appointment to have it looked at. Fast forward 6 weeks, a CT scan and two more doctor visits and I had a surgery scheduled to fix it. I had my appointment with the hernia doc on a Wednesday afternoon. The only opening they had was for that Friday (two days from then). I'd have to wait another month or so before having it fixed if I waited. I scurried to make all the arrangements with work, etc. and went in Friday, August 1st to have it fixed.

I'm just over 2 weeks out from surgery. This time has been much, much better! So much less painful than in March. So far the toughest part has been not being able to hold my two precious boys. It's a 6 week recovery again and I can't lift anything over 10 pounds. They didn't leave any part of the incision open this time, thankfully. However, I do have a drain in place. It honestly hasn't been that big of a deal. I expected it to be much worse. I have to empty it once a day and that's about it. The past few days it has been causing me a lot of pain. I think mostly because my body is trying to heal itself, but can't because there's a suture and large tube in the way. It's very red and irritated. It keeps forming scabs that get torn off (which is causing most of the pain) from the dressings and from moving around. The skin around the drain is extremely tender. My incision on the other hand is doing great! It looks awesome so far! The surgeon did an excellent job of putting me back together. He used a biologic mesh to hold my guts in and reinforce the area. The scar will look phenomenal compared to the two I had prior. It looks like someone drew a line down my stomach with an ink pen. It's put together so well and I think it'll leave a very nice, neat looking scar. It's hard to tell from the pictures, but it's much better than the one in March I promise.

Thankfully, my lungs have remained healthy through all of this. I give all the credit to God! I've stayed faithful to my treatments and kept myself busy, up and moving around to help keep my lungs healthy. I haven't had PFT's post-op yet, but I know they'll be much better than the last go around. My FEV1 dropped to 47% after the surgery in March, which was pretty scary. Even though I knew it was because I was still in a lot of pain and couldn't give a maximal effort, seeing that 47% was scary. I know I'm doing much better than 47% this time and for that I'm extremely grateful.

I get the drain and all 29 staples and 7 sutures out this coming Wednesday! I couldn't be more excited! I'm anxious to get on with my recovery. I feel like I never fully recovered from the surgery in March. I got the hernia so soon, I never got to get back into running and working out. I'm extremely motivated! I've been down and out for almost 7 months when it's all said and done. I'm ready to get back at it! I should be back to tip top fighting shape after this surgery and am looking forward to getting myself back into the best shape of my life!

I'll keep you all posted on how things continue to progress! Thanks for reading!!

Feeling good + More Florida Pics

I have been feeling really good as of late! It's so awesome! I'm not coughing near as much when I lay down at night to sleep and can chase the boys around the house, go up flights of stairs at work, etc. without getting super winded and hacking up a lung. I'm actually feeling really good despite slacking on my exercise. I think it is due in large part to taking better quality treatments. Oh and prayer. :) I'm told there are a lot of the cornerstones at our church who have been praying for me. I believe that prayer works wonders!

I've been making sure to sit up straight and keep good posture during treatments. I have a tendency to slouch and roll my shoulders forward really bad when I'm sitting at the computer. This helps me breathe deeper, plus I'm making a more conscious effort to breathe deep. I've also been taking the time during and after treatments to hack up as much stuff as I can. The boys usually join me in the bathroom for "coughing/spitting time." They both just stand and watch, lol. At first they kept getting serious/concerned looks on their faces. I made sure to keep looking over smiling and laughing to assure them daddy is ok. Now they come to know it as routine. Jeriah often will stand close to the toilet (not too close cuz toilets are yucky) and try to spit into it. He leans his head back, then throws it forward as he "spits." Sometimes he actually does spit on the floor, lol. I've been feeling really good lately and hope it continues!!!

Here are some more pics of our trip to Florida from my sister-in-law's fancy camera!

Satellite Beach, Florida

We took a family trip at the end of May to Satellite Beach, Florida. It was the boys' second second trip to the beach. The first time they were a month and a half old at Gulf Shores, AL. They're two spoiled boys! It was a great trip! We spent a lot of time on the beach. We swam, boogie-boarded, and played in the sand. The men all went on a deep sea fishing trip that ended up being a flop. Our captain did more time fishing off the back of the boat, than finding us fish to catch. We spent a decent amount of time shore fishing. I bought a new 15 foot pole and a big reel for shore fishing in the ocean. Too bad I didn't catch anything, lol. My brother-in-law managed to reel in a 5-6 foot nurse shark though. It was awesome!

The boys were very tentative of the ocean. It took them a couple days to warm up to it. After they got used to it, they would walk out into them (only up to their knees) and play in it. They loved the sand! They had a lot of fun playing in it. We had a couple canopies that we set up and the boys spent a lot of time playing under them in the sand. Monica and her mom made the boys and our niece a make shift pool by digging a hole, putting a shower curtain inside the hole and filling it with water. It worked great and they loved it!

As many CFer's have noted, I felt like I was able to breathe so much easier there. Missouri is a very humid state. Our summers are hot! Temps in the 90's - 100's with anywhere from 60-80% humidity. Beach air is so much easier to breathe! It's a lot easier to clear secretions too! They've already proven that with studies in Australia (that's how we got hypertonic saline treatments). Not to mention playing in the crashing waves is one heck of an airway clearance treatment! Works twice as good as the vest! The real question is... When are we moving to a beach Monica?? ;)

Here's some pics from our trip! Enjoy!