Not what I was expecting...

I'm in week 5 of the CFit program and it's going great! Three days of lifting and 3 days of running, combined with no soda intake during the week, a minimum of 44 oz of water a day, veggies at 5 meals a week and continuing to do two sets of treatments a day has been doing work on my body!! I'm loving every second of it! Part of P90X is tracking your reps/weights for all the exercises on worksheets. Watching the amount of weight I lift go up every week and number of reps on things like push-ups and pull-ups is awesome! The week 5,6, and 7 DVD's are some of my favorites.

I have yet to weigh myself on my scale at home, but at clinic yesterday they had me at a 5 lb weight gain! I'll take it! I got a compliment from a lady at church Sunday too. She said I looked good and she asked if I had put on some weight, lol! I take that as a compliment (she meant it that way)! I feel really good!

My runs are getting longer and more intense, but so far I'm able to do them with relative ease. My 35 minute run Saturday was a little tough, but all the rest have been good. I'm excited to have some nice weather in St. Louis finally. Now I can start running outside instead of on a treadmill watching Rob & Big episodes, haha!

As I said I went to clinic yesterday. I went after I got off work, which I always feel puts me at a disadvantage. I do a lot of running around at work and don't get much break time to hydrate and eat besides lunch. I was falling asleep in the waiting area before my PFT's, lol. My FEV1 was down to 58% from 64%. I was very surprised. It was not what I was expecting...

I could tell once I did my first attempt it was no good. I was really congested and not at all how I had been feeling. The other attempts were the same with no improvement. Whether it's because I was tired and junky from not having done any treatments since 5am or because I'm having a slight exacerbation, I'm not sure. Ronnie assured me that he had seen this before and it has happened to him. After starting an extreme workout regimen like the one I'm on, our lungs can get a little upset at us, lol. Maybe that's it, I made them mad. Either way I landed on cipro for 3 weeks. Hopefully it'll do the trick. I'm gonna push even harder than I was before. It's amazing how you push hard and always feel you're giving your all, then you get a little motivation and are able to push even harder. Last nights workout was proof! After I got done, I couldn't lift Jeriah (aka skinny boy) above my chest. My chest, shoulders and triceps were toast!

Ronnie told me a saying that works for him and it has stuck with me. I find that it not only applies to my CF but life in general in a lot of ways. "It's not about me." It's such a simple phrase. Since Ronnie told me that I've used it many times, even saying it out loud while running or lifting. It's not about me... it's about my wife and my boys, I do my treatments and push my body to the limits to improve my health for them. Powerful stuff huh?!

Anywho, besides the little speed bump of a dip in my FEV1, everything is going great! I'll keep you guys posted! Thanks for reading!!!

Thankful Thursday: PFT Results, Man Time & Nursing

It's Thankful Thursday! I'm excited to do a Thankful Thursday post! I've missed a couple in the last several weeks. This week we're excited to talk about a few things we're thankful for. If you're new to reading this blog, we do a post every Thursday where we talk about things we're thankful for. It's not just for the month of November, but all year round! It helps us to realize that we're surrounded by blessings everywhere we look, and hopefully helps us not to take anything for granted. There's always something we can be thankful for. Without making you wait any longer, here's our lists:

Monica's List:

I'm thankful for heat! As it's getting colder I am thankful for our furnace and the heat in my car. I'm more of a warm weather girl and tend not to like being cold. I was just thinking this morning about how in the past people had to keep fires going to stay warm. I am thankful it is just a click of a button away for me! Ahh technology!

I am thankful for Jeremy's jump in his PFT's! I can breathe a little easier now knowing he can breathe easier! ;) Whew... was I holding MY breath this whole time?! haha!

I am thankful for breastfeeding! Don't worry if you are squeamish about that stuff, I am not gonna get all weird and detailed! I am just thankful for the opportunity to nurse them! It definitely wasn't always easy but it's paid off in the long run! The boys nurse so good and fast now! There are many reasons I am thankful for breastfeeding: the bond is so strong, it's so convenient (always the perfect temperature, ready, and sterile), I don't have a ton of bottles to wash, they usually eat in less than 5 minutes, $$$ (I always joke, when people comment about them being breastfed, that we couldn't afford formula for twins anyway) :) I shed the baby weight Very fast, and I know that they are getting the very best I can give them! I plan to wean them around a year. They are already 7 months and time has already flown by! I know it's gonna be a blink of an eye and then they will be done nursing, forever. I am thankful for this beautiful stage in life, with my babies, and I'm trying to treasure every moment of it that I have left!

 

Jeremy's List:

I'm thankful for rising PFT's! If you've kept up with my blog, you'll know that I was recently admitted with an FEV1 of 56%. After 2 weeks of IV's it dropped another 3%. This was a huge shocker for my family, myself and my CF team. I was kept on IV's for another 4 days. They added cipro (an oral antibiotic) and prednisone. They thought I had some pretty bad inflammation in my lungs. I went back yesterday for a follow up PFT. And drum roll please.... My FVC was up from 77 to 85% and FEV1 went from 53% to ................... 64%!!!!! Needless to say I'm ecstatic! I can't wait to see what they'll be in February! Starting at 64% and continuing to do treatments and work out I'm really hoping I can see close to 70%. We were a little nervous for a while, but hard work and being dedicated to my health paid off. 

I'm also thankful for fall! I don't like cold weather, but I do enjoy fall. The colors of the leaves are shades of red, yellow, and orange all around our house. It really is beautiful. Plus, I know I'll get some good exercise in when I have to clean out the gutters and rake the yard. It'll be the perfect backdrop for the boys pictures in a couple weeks! 

I'm thankful for comradery and man time! Deer hunting season is upon us! I honestly could care less about shooting a deer unless it's a trophy buck. Besides, a CFer, coughing his head off in the woods hardly makes a good hunter (one of the reasons I probably see very few deer, lol).  I do like deer sausage and deer tenderloins though! Is goo! I enjoy hanging out with just the fellas. Building a bonfire every night, and hanging out. No showers, no shaving. You can belch and fart whenever you want with no regard to manners, lol! The part I enjoy the most is sitting in the woods. Alone with God's creation. It's so peaceful! You sit for hours admiring the woods and nature. It's awesome! It's one of the most relaxing experiences ever. Alone with your thoughts and God. If you've never done it, I encourage you to find some woods and sit in them for an hour or so in the fall! If it's during deer season though make sure and wear some blaze orange! Safety first!

So what are you thankful for today?!?!

Clinic Update & Sleepy boys

Yesterday I had my follow up appointment after 2 weeks of IV antibiotics. It did not go at all how I had envisioned it. I saw myself going in, blowing an FEV1 of at least 62% and getting my PICC line pulled. I would leave with a smile on my face, go home and take a long, hot shower! (With a PICC line you have to wrap your arm and hold it out of the water when showering. Makes it hard to enjoy a shower.) Then get back to work at getting my PFT's into the 70's! I was almost there with a 66% 6 months ago.

When I went in, I kind of had a feeling it wasn't going to go the way I had hoped. I feel slightly better, and my cough has lessened. Usually I feel like a new man after 2 weeks of IV's. My cough hadn't changed either. It is still a harsh, dry sounding cough and it's hard to cough sputum up. The only way to describe it is that my lungs feel swollen, or my airways are tighter than they've ever been. So, since I wasn't feeling like a new man, my cough was still harsh and dry, and I wasn't able to bring up sputum easy, I figured something was still going on and I'd keep my PICC.

I blew a 53% FEV1. That's down 3% from before I went in 2 weeks ago! I was shocked to see that I had dropped. For a brief second my heart dropped. I've been working hard the last 2 weeks. As soon as I saw it, immediately my mind starts going to things I could have done better. I blew as hard as ever trying to get that FEV1 a little higher each time. It actually dropped with each attempt. I've been doing these long enough to know that usually my 2nd, 3rd and sometimes 4th attempts are my best. Another indication to me something else must be going on.

On a good note, my weight is up to 160! Maybe my FEV1 dropped from the addition of 5 pounds of adipose tissue. :)

Sooo, after discussing with my CF team how I feel and my symptoms not changing, they came up with a plan of attack. My physician thinks maybe I'm having an inflammatory response (swelling) in my lungs. Here's the gameplan:

1. Add oral Cipro to the mix for 2 weeks
2. Continue IV Meropenum through Friday
3. Add prednisone (if the blood work does show I'm having an inflammatory response, he would treat it with prednisone. So he wants me to start it now prophylactically.)
4. PFT's in a week to see if the prednisone had any effect. Follow up with the blood work results and go from there.

Am I concerned? Of course I am. Am I worried? Yes, slightly. Scared? Maybe a little. I'm not okay with that kind of decline and am not going to accept it as "the disease running it's course." I'm glad that my team is not accepting that as the case either. My physician told me not to worry that they were going to get me better. I guess he could tell I had a million things running through my mind.

Oddly enough though, I have quite a bit of peace about it all. Jeremiah 29:11 " 'For I know the plans I have for you,' says the Lord. 'They are plans for good and not for disaster, to give you a future and a hope.' "

To brighten the day, Jace decided to have his first real belly laugh. I had just finished his bath and was drying him off and putting lotion and powder on him. Monica was feeding Jeriah in the living room. The Chase credit card commercial came on with the Katy Perry song "Roar." I randomly started singing it to Jace being silly and he thought it was hilarious!!! Every time I'd start to sing, he'd burst out laughing before I could get a couple words out. He just kept laughing and laughing and laughing! It was awesome!!! It was a textbook belly laugh, lol! Now we'll be trying to get it on video to share with you guys!

I'll leave you with a couple videos of our boys falling asleep after being tuckered out from a hard day of being a baby!



Trip to The Hole

Looks like its time for a tune-up, which means a trip to "The Hole." It's been over a year and a half since my last admission! I'm very proud of this and it proves that hard work pays off. I've been faithful to two treatment sets a day and exercising (although the exercise hasn't been consistent). 

However, my admission this time is proof that sometimes, even when you're doing everything right, CF still can get the best of you. No matter how many treatments or hours spent exercising, admissions and exacerbations are inevitable. That's CF. 

It seems unfair, it can be frustrating, but it is what it is.

I'm going in with a smile! I'm like Forrest Griffin after he takes a beating in round 1, standing in his corner smiling at his opponent. As if to say, "Yea you got that round, but I'm coming for ya now!" Makes me think of the Disciple song "Game On." So, touché CF, touché. After some IV antibiotics and a couple weeks of intense treatments I'll be back where I was and hopefully higher. My goal is still 70%. I know I can see 70% again, maybe higher. I was getting close. In may of this year I was at 66% after almost a year of rising PFT's! My FEV1 this time is 56%. 

This time is different. Usually when I need an admission or antibiotic pills it's because I had a bad sinus cold that turned into a chest cold and caused a drop in my PFT's. This time feels more like a true CF exacerbation. I don't have any cold symptoms. My PFT's are just down. 

I knew this was coming. Most of us do. I have my own red flags. 

1. When I lay down at night and I cough a bunch as soon as I lay down. Normally I lay down and go to bed without coughing any. When I'm gettin sick I cough a lot when I lay down for a couple minutes. 

2. I cough a lot more all the time. I always cough, but when I'm sick I cough more. People who are around me start to notice my increased coughing too. 

3. I get winded doing things that shouldn't cause me to get winded. Such as carrying the laundry upstairs, going up  a couple flights of stairs at work, and when I exercise having to take breaks or go at a much slower pace. 

4. I am grumpy and irritable. Unfortunately my wife notices this one the most. I get complainy (if that's a word). I become a "negative Nancy" whining about work, people driving, and other insignificant stuff. 

5. I am more tired. Usually I'm up for hanging out later with friends and doing stuff in the evening. I don't want to spend my life being a fuddy-dud. I want to enjoy every moment! When I'm sick, I never want to do anything. All I think about is staying home and relaxing. 

So, I'll be spending the next few days to week in the hospital getting my IV's and taking treatments. Then I'll be at home finishing them up. Ideally I would like to stay in the hospital the entire two weeks or however long it takes. While I'm here I'm forced to focus on my health. When I'm home there are a million distractions that prevent me from taking 4 treatments a day and focusing on my health. With the boys now, it would be very hard on Monica to be home alone for 2 weeks. Granted she'll have help, but it's not the same. So, We agreed that I should probably spend a week in. My CF team usually only wants me to stay for 2-3 days and then go home. They're reasoning is that I'm at risk for catching another "bug" while I'm in here. It's a very valid point. However, I'm here 40 hours a week when I work. I'm already highly at risk. I think the benefit of 4 hand clap treatments and no distractions outweighs the risk of getting more sick. We shall see! I'm not good at being outspoken and expressing my concerns. It's something I'm working on.

I'll be posting updates and hopefully some videos (the boys will most likely be in them :)) 

Thanks for reading to long-winded post!

View from my room on the 13th floor

PFT Update & Pics of the boys

If you recall, my PFT's had dropped after the boys were born. Five weeks ago they were down 6%. The drop was due to a stop in exercise and lack of adhering to a twice a day treatment regime. I was put on cipro for 3 weeks to see if it would boost my PFT's. Go figure, the week before my clinic appointment I injured my ribs playing at the pool. I couldn't give a good effort on my PFT when I went back after the 3 weeks of cipro. My FEV1 was 59%, which was down 1% from where it was before the cipro. So after two weeks of letting my ribs heal, I went back yesterday for another set of PFT's.

Last week I was feeling very congested and like I may be having an exacerbation and need to be admitted. However, if this was the case, I would fail my screening appointment for the Phase 3 trial of ivacaftor and lumacaftor, which was today. SO, my doctors wanted to see me and possibly postpone my screening appointment so I could make sure to get into the study (barring nothing else causes me to fail the screen).

My FEV1 was 63%. A far cry from where I would like to be (>70%). It's up nonetheless. This means I should be good to go for my screening appointment today! Whoo-Hoo! Here's to getting into the study and getting the "real deal!"

I'll leave you with some pics of the boys!







Never knew how good I could feel!

Man I feel great! I really do! I haven't felt this good in a while. What do I think has made the difference??? Running. Monica and I started running a while ago, but it wasn't until recently that I began taking it serious. I've had to have my hospital admissions like every other CFer, but this past year has been different. I was admitted in July of '11 then again in February '12 and almost again a month ago. Not good!

I'm used to only be admitted every 2 years, maybe every year and a half. I have definitely noticed a shift in the progression of the disease in the past couple years. I've had to work way harder at keeping my numbers up and feeling good. Up until now, I haven't really felt like myself. It seems I had always been fighting being "sick." My numbers were like a roller coaster. After my admission in February I felt much better, but the numbers were still way down. Then last month my numbers were down again to 59% and I felt pretty crummy.  My most recent FEV1 was 61%. Which, by the way, I am not satisfied with.

I want to see mid 70's again! If I ever saw 80% I'd flip out!

I think I may be well on my way judging by how I feel. But, history shows that "feeling" doesn't always reflect in the numbers. Hopefully come November 26th those numbers will be at an all-time high for the past 6 years. The highest my FEV1 has been in the past 6 years was 74%. I'm shooting for 75%. :)

I'm signed up for two 5K races. One in October and another in November. My buddy and I are training 4 days a week for it. Let me tell you, it's no joke.Whoo buddy! My legs are feeling it and my lungs too!

Moral of this post: If you are wanting to be healthier and in better shape, run. You may not be able to run just yet, but everybody can walk. Start by walking for 30 minutes a day. That's simple. Pick a TV show you can do without and walk instead. It will pay off and before you know it you'll be setting new records for yourself in running! Get out there! As Nike says "Just Do It!" and as Ronnie says "GET MOVING!"

Feels Like Fall

It officially feels like fall here in St. Louie! Our house is a cool 71 degrees with no ac or heat on, and it's just chilly enough outside that the good ol sweatpants and house shoes went on today. It's really overcast and kind of windy out too. Perfect for an evening in! We'll probably watch a movie after eating a big hearty meal, and snuggle on the couch under a blanket. I forgot how much I do enjoy fall. I would rather live in a climate where it's sunny and warm 24/7, 365, but I enjoy fall.

Soon we'll start having bonfires, drinking hot chocolate, and dressing in hoodies and sweats. It may sound silly but I think there's nothing more comfortable than a hoodie. I love wearing hoodies. They're perfect to take naps in! lol! In college I wore hoodies all through the fall and winter, and took a nap almost every day in a big leather chair in the "quiet" room. Good times!

Another advantage to cooler weather, it makes running slightly easier. When I don't have gallons of sweat dumping off me, I find I can run a little farther and faster. Tuesday I was able to complete 4.5 miles without stopping for any walk breaks. It took me 46:42. Monica's fastest time is 43 minutes I believe. Yesterday I ran it again. I didn't stop this time either and completed it in 43:15! I shaved over 3 minutes off my time. It was slightly cooler, and may have made a difference. If I can break 40 minutes, I'll be ecstatic! I'm trying to gear up for a 5K in October that benefits lung transplant patients. My goal for that is 25 minutes or less. Really I would like to only run 10K's. I think I'm getting close to being able to complete one. A few more weeks of running 4.5 miles and I'll start running 6.1, which is a 10K.

Hope everyone is enjoying this cooler weather! (If it's cooling down where you live) I know Monica and I are. Hopefully my updates on my running abilities will encourage you to get out there and GET MOVING!!

Thankful Thursday: Morphsuits & Running Buddies

HEEEEEY! It's Thankful Thursday again! That means another week has passed us by. Hope you all lived it to the fullest and soaked up the best out of each day! It's that time of the week for Monica and I to reflect on our lives and find things to be thankful for. Like I always say, there's something to be thankful for.... always. This week Monica is working on a cake and has been one busy little bee the last couple evenings after work, so I'm going to go this one alone. She's in the kitchen working away, but is here in spirit.

Monica is one of those few people that are beautiful just as much on the inside as out, and she's GORGEOUS on the outside! She can always find something to be thankful for and see the bright side of things.

This week I'm thankful for a little spandex wonder known as a morphsuit. They are one of the most awesome things I've ever seen!I've wanted one for over a year now, but never wanted to spend the money to get one. I made a little extra cash recently and splurged (haven't done that in a while as we've been sticking to our budget very snugly) and buy me a morphsuit! My patience was rewarded! They have just released a blacklight responsive line that glow under blacklights! Of course, if you know me, you know I love blacklights!It's just so awesome when stuff glows, I can't explain my fascination with it. I purchased a neon orange morphsuit. They have morphsuits of all different varieties! Here's the link if you want to check them out. link :)Now I just need the matching fanny pack, sunglasses, and sweatband set!

I'm also thankful for running buddies! Recently, as I discussed in the previous post, I started getting up at 5 am to be able to get 2 vest treatments in a day and started running again. This time it's going to be a routine. My last FEV1 was 59%. Unacceptable. I was feeling pretty crummy like I may need an admission. Hopefully my efforts will deter this as I go to clinic a week from Monday. Several of our friends have gotten into running recently. My main man told me him and his bro-in-law were gonna start running on tuesdays and thursdays and then a weekend run. We started this Tuesday. Boy are we outta shape! We did the Cliff Cave loop by our house that is supposed to be 5 miles. That's a good distance. We had a really good time though! Got to chat during our walking times and came up with our weekly game plan. I'm so pumped for this you can't imagine!

I HAVE to run. There is no option when you have CF. Ronnie Sharpe's blog title photo is right on point, "Running because my life depends on it." The only way I will see an increase in PFT's is to make running a regular occurrence in my life. Having 2 buddies to run with is gonna make that a lot easier to stick to! After our first tuesday I ran again on wednesday for 2.4 miles and we ran a 5K (3.1 miles) today. I finished the 5K today with a time of 29:33. I've never timed myself at a 5K before but I'm pretty happy with that.

Well I've babbled enough about what I'm thankful for this week! Now it's your turn! Leave a comment telling us what YOU are thankful for! Don't forget to type your name or better yet sign in so we know who you are! Happy Thankful Thursday everybody! Hope this next week is the best ever!

PFT History

Here's my PFT History! Well, since 2006 anyway. I threw my weight in there with it, just to help show that BMI usually correlates with PFT's. As CFer's our target BMI is 21-23.  That is where we will have optimum nutrition and have the best PFT's.

To find out what a PFT is, click here.

The percentages below are called percent of predicted values. They take your age, height, and weight and can estimate how much air (in liters) you should be able to move in and out of your lungs. When you blow into the PFT machine it measures the amount of air (in liters) you move and compares it to the predicted values. Thus, you get a percentage.

My predicted PFT values in liters as of 5/21/12: FVC 5.83, FEV1 4.84

PFT's:

03/31/25: FVC 94%, FEV1 70%, weight 198

11/25/24: FVC 83%, FEV1 64%, weight 195

01/23/23: FVC 80%, FEV1 65%, weight 193

11/08/21: FVC 81%, FEV1 64%, weight 194

04/26/21: FVC 82%, FEV1 61%, weight 197

10/12/20: FVC 83%, FEV1 60%, weight 197

06/29/20: FVC 85%, FEV1 62%, weight 190

12/02/19: FVC 91%, FEV1 65%, weight 183 (on Trikafta)

08/29/19: FVC 82%, FEV1 56%, weight 183

02/04/19: FVC 79%, FEV1 53%, weight 183 (off trial due to liver enzymes)

10/22/18: FVC 80%, FEV1 57%, weight 186 (Trikafta trial)

07/02/18: FVC 76%, FEV1 52%, weight 168 (on Orkambi)

01/04/16: FVC 77%, FEV1 57%, weight 156
09/21/15: FVC 81%, FEV1 55%, weight 156
08/10/15: FVC 76%, FEV1 53%, weight 158 (Oral antibiotics)
04/30/15: FVC 85%, FEV1 58%, weight 158 (I'm told this is my new baseline since I haven't been in the 60% range for a year. 
04/16/15: FVC 74%, FEV1 46%, weight 154 (all time low, had some sort of viral sinus thing, turned chest cold. admitted for IV's, tried aztreonam as opposed to meropenum)
04/06/15: FVC 83%, FEV1 57%, weight 155 (feeling improved, not baseline)
03/16/15: FVC 76%, FEV1 53%, weight 160 (sick, oral antibiotics)
11/24/14: FVC 84%, FEV1 59%, weight 151 feeling more towards my baseline but not quite there. Fighting a chest cold at the time. Happy with these numbers, all things considered.  08/25/2014: FVC 80%, FEV1 56%, weight 146 (lungs feel good. Still a decent amount of pain with PFT attempt. No plans. FEV1 likely much higher than reading due to inability to give full effort because of pain in incision.)
08/01/14: Hernia repair surgery 05/29/14: FVC 84%, FEV1 55%, weight 150 (no change in how I feel. No plan by the team. Thought to still be recovering from surgery and possibly allergies, although have never had them previously and FEV1 was higher before IV's)
05/19/14: FVC 77%, FEV1 55%, weight 150 (after 2 weeks IV's, felt worse. D/C'd IV's, started prednisone and oral antibiotics)
04/30/14: FVC 84%, FEV1 61%, weight 150 (felt very crummy, went in for 2 weeks of IV's)
Side Note: I had two PFT's after surgery. I believe one was two weeks post-op and I blew a 47% FEV1. The other was 2 weeks later and I blew a 53% FEV1. My weight had dropped to 143 lbs.  
03/12/14: Emergent bowel obstruction surgery
03/10/14: FVC 78%, FEV1 58%, weight 160 (after being in CFit for 4 weeks)
11/13/13: FVC 85%, FEV1 64%, weight 157 (after 4 more days of IV's, a week of oral abx and a week of prednisone)
11/04/13: FVC 77%, FEV1 53%, weight 160 (continuing IV's and adding oral antibiotics & prednisone. Blood work to see what's causing drop.)
10/21/13: FVC 78%, FEV1 56%, weight 153 (admitted for IV's)
06/24/13: FVC 75%, FEV1 60%, weight 153 (twins were born in April, tx's have lacked. Put on Cipro for 3 weeks)
03/04/13: FVC 82%, FEV1 66%, weight 152
11/26/12: FVC 85%, FEV1 64%, weight 149
08/27/12: FVC 83%, FEV1 61%, weight 152
05/21/12: FVC 77%, FEV1 59%, weight 151
02/16/12: FVC 79%, FEV1 60%, weight 154 (after 2 weeks IV's)
02/02/12: FVC 80%, FEV1 62%, weight 148 (sick, admitted for 2 weeks IV's)
01/09/12: FVC 79%, FEV1 61%, weight 150 (sick, put on oral antibiotics(pills) for 3 weeks)
09/26/11: FVC 89%, FEV1 70%, weight 152
06/20/11: FVC 84%, FEV1 65%, weight 150 (after 2 weeks IV's)
06/06/11: FVC 76%, FEV1 53%, weight 148 (sick, admitted for IV's)
04/14/11: FVC 80%, FEV1 62%, weight 150
01/10/11: FVC 78%, FEV1 59%, weight 148
10/11/10: FVC 76%, FEV1 60%, weight 146 (sick, oral antibiotics)
07/08/10: FVC 82%, FEV1 63%, weight 143 (after 2 weeks IV's)
06/21/10: FVC 76%, FEV1 50%, weight 142 (admitted for IV's)
03/08/10: FVC 82%, FEV1 66%, weight 147
12/07/09: FVC 86%, FEV1 65%, weight 149 (after 2 weeks IV's)
11/23/09: FVC 81%, FEV1 63%, weight 149 (admitted for IV's)
10/19/09: FVC 85%, FEV1 67%, weight 152
09/21/09: FVC 82%, FEV1 62%, weight 157 (sick, oral antibiotics)
06/08/09: FVC 85%, FEV1 68%, weight 148
03/23/09: FVC 80%, FEV1 67%, weight 150 (sick, oral antibiotics)
12/18/08: FVC 88%, FEV1 69%, weight 149
11/24/08: FVC 74%, FEV1 60%, weight 147 (sick, oral antibiotics)
07/07/08: FVC 90%, FEV1 70%, weight 146
06/16/08: FVC 82%, FEV1 65%, weight 146 (sick, oral antibiotics)
02/28/08: FVC 81%, FEV1 66%, weight 150
11/15/07: FVC 79%, FEV1 70%, weight 150
10/11/07: FVC 85%, FEV1 72%, weight 148 (after 2 weeks IV's)
08/30/07: FVC 78%, FEV1 63%, weight 152 (admitted for IV's)
05/21/07: FVC 79%, FEV1 68%, weight 152
02/15/07: FVC 85%, FEV1 74%, weight 148
01/08/07: FVC 85%, FEV1 64%, weight 146 (sick, oral antibiotics)
09/14/06: FVC 103%, FEV1 84%, weight --- (after 2 weeks IV's)

I feel fine...

What up followers! Well I had my clinic appt. today and sadly the news I got was not what I was expecting. My FEV1 was 59%. 3 months ago I had my very confusing bout with my PFT's when I was feeling really crummy, they were at 62%. After 2 weeks of IV antibiotics, usually I would see a jump of 7-8%. At that time, I saw a drop of 2%. Now this time after 3 months of working out, not missing any treatments (I never do anyway) and lots of running, they were 59%. Needless to say I was very confused by this. I spent the drive home and some of the evening mad and upset at these results, as I'm sure most of you reading this with CF can understand. My frustration got the best of me at the time. I wasn't so much upset at the number or the fact that I will obviously have to add more exercise and will be adding hypertonic saline to my mix of medications. That's going to be my life with CF, adding meds and adding to my treatments as I get older and the disease progresses. I've accepted that fact. At the moment all I was thinking was "Where am I going to add time in my day to get this done?"

Some CFers out there are lucky enough to work from home. I'm hoping someday God will open a door like that in our lives, but as of right now, I work 40 hours a week. It seems as though there is always something going on in our lives. Almost every evening there's something competing with my treatment and exercise time. That's life though, there will always be something going on. My dad always had this saying growing up that still rings in my ears, "Son, you have time where you make time." As much as I hate to admit it, this is true.

I also learned today that I don't really know how to respond to the question "How do you feel?" I know that may sound funny, but they always ask when my numbers are down, "Well, how do you feel?" I always say fine, because for the most part I always do feel fine. I've come to realize I think that my definition of how I feel and the CF team's are different. When I think of how I feel, I am thinking in terms of at the moment. Do I have a stuffy, runny nose, sinus congestion, chest cold, coughing all night. That is my definition, however I believe their definition when asking how I feel is how has your mucous been? Thick, more of it, more color to it? Do you feel run down, tired a lot? Have any other CFers run into this? I was talking to my mom on my way home from clinic today and she was asking me these questions. I told my team I have had some increase in sputum production and it seems to be quite thicker and more green as opposed to the usual pale yellow color. But when I said I feel "fine" they said there's nothing to worry about then and we shouldn't do anything. Probably just had an off day or something.

I guess I need to change my definition of how I feel in my mind so I can relay what's going on with my health more clearly. I also think it comes from this deeper desire to not want to seem whiny or weak. I don't like to admit defeat or admit that I don't feel good even when I don't. I'd rather hide it and try to get better on my own by doing more treatments and intensifying the things I do to stay healthy. This obviously is a downfall of mine. Anybody else relate? I'm learning to get over this and call the clinic when I feel crummy instead of waiting 2 weeks til I'm really sick and then call. I guess that's part of being a man and wanting to feel tough and manly. :)

Lastly, I did get a bit of good news today! They discovered what my other gene mutation was. Up until this point, my chart always had one listed as Delta F508 (the most common CF gene), and the other unknown. I had some genetic testing done, and it came back that I have 2 Delta F508 genes. The team was unsure of how the other hospitals could have missed this, but the last time I had been tested was in 1989. It's good to finally know what my gene mutations are. Hopefully within a year or so they expect to see some drugs coming down the pipeline for DF508 CFers. Until then, it's time to GET MOVING! Keep running, keep knocking out treatments every day, and as Tony Horton says on P90X, keep pushing play! For all you CFers out there, keep at it!

Thankful Thursday: Running spots, fishing and momma

It's Thursday, which means it's time for our second rendition of Thankful Thursday! I know we missed last, and I feel terrible about it. We had a very busy week where there was something going on every night of the week, and it completely slipped our minds, until I was doing my last Cayston treatment around 10:30. So now that I'm finished with my excuses, let's get back to being thankful! Here's my list:

I'm thankful for nearby places to run! Since about February Monica and I have started running on a regular basis. Which makes me very anxious/excited for my next clinic appointment. My appointment just happens to be this Monday, May 21st. I'm really hoping my PFT's are up! Last visit was after 2 weeks of IV antibiotics and my FEV1 went from 62% (down from 70% 3 months prior) before IVs to 60% after 2 weeks of IVs. So I'm hoping with the addition of all this running, they will be back up! As I was running at a park nearby our house, Cliff Cave Park, I was thinking about how happy I was that we have such a nice park close by where we can run. It's a 5 mile loop, all paved, half of which is in the sun (so you can get your tan on) and half that winds through the trees. It's really nice and we love to run there. Sometimes you'll get lucky enough to see deer playing and eating, even though it's in the middle of the county. It's also right next to the Mississippi river, which presents a fishing opportunity and it has several hiking and biking trails through the surrounding woods. It gives a nice place to go run, and it's only 5-10 minutes from our house. With it being so close, it's much easier to get motivated to run and especially when it's so nice. On those lazy days where I feel like 5 miles would suck all the life out of me, I run the road by our house. We're right at the entrance to our subdivision and the main road outside the subdivision is an outer road to the highway, it has pretty minimum traffic one way and VERY wide shoulders. We always have a place close by to run, which is great! I'm very thankful for that!

I'm thankful for fishing! Fishing is something as a kid I didn't like to do. My dad and uncle would put a bobber, hook and worm on  our poles and we would sit. And sit some more.......... and still sit....... for what felt like HOURS! All with no success. Growing up I never understood why people would fish. My brother-in-law, Ricky, who was a buddy long before he became my bro-in-law, has always been into fishing. The first year after Monica and I got married, we went on the annual family trip to the lake. Ricky convinced me to get a pole and fish with him there. He said everybody fished and I would wish I had one if I didn't. So I got one, and we went fishing. Since then I'm hooked! Hahaha, get it, hooked! :) I really enjoy it. Ricky says it's because I'm getting older and appreciate things more. He could be right. I like how relaxing it can be. Being in nature is awesome to begin with and I love water. I always end up "swimming" when I fish, retrieving a snagged line, and usually lose a lure. Second to last time I went I broke my reel. BUT, I enjoy it nonetheless and am thankful I discovered it. What do you have to be thankful for?! I know there's something so let us hear it!

Monica's List:

On the heels of Mother's Day, I am thankful for my mom!! If there's one person that I've never had to doubt loves me, it would be my momma. I could never express how much she's impacted me and done for me! I would say my mother is a very strong woman! Strong in her faith in God, strong in her providing for our family, strong in her will, strong in her control of her emotions. I can honestly say I've never seen my mom completely lose it! That can't be said for a lot of women! It seems like nowadays there are many women who are still actually little girls... like they never got to that point where they grew up and become a woman/lady and put their childish ways behind them. I know many women who fly by the seat of their pants and blurt out every little thing that comes to their mind, like they have no filter or discretion (and then later blame it on pms or who knows what else?) My mom IS NOT one of those women! She taught me by her example, to love God first, to be generous and faithful with what God gives you, to love people, and so much more! For that I am so thankful! Proverbs 31:25 describes a wife of noble character saying, "She is clothed in strength and dignity...". I pray God make me like that! A strong Woman of God! Seeing how strong a mother's love is just fuels the desire in my heart to be a mother that much more and I can't wait to see what God has in store!

 I love you Mom!!! I could never say thank you enough!!!

Thankful!

Does anybody ever feel like they have days where they are just surrounded by negative things? Well, I do. It just seemed like today at work, everywhere I turned people were telling me all kinds of negative stuff, just complaining about other people and carrying on about things that annoy them. I find myself getting caught up in it at times and going along with the conversations. Then later I feel bad for being a complainer. I hate complaining by the way. :) I just feel that there are way too many things to be thankful for, than to spend time focusing on negative things or simply just being a whiner/complainer. Today was one of those days. Everybody I talked to had something to complain about. At the end of the day I found myself in not the best mood, even though my day at work went really well, and we have plans to hang out with our awesome friends tonight! It was as if the negative rubbed off on me. haha! I was just thinking of all the things I'm thankful for!

I'm thankful first and foremost for my relationship with Jesus! It has completely changed my life. I grew up in church, but when I truly gave my heart to God and developed a relationship with Him it has changed my life!  I'm thankful for the amazing wife I've been blessed with! Monica is so good to me! It's an unbelievable feeling to know that you're loved! I know my family loves me, but for someone who is not related to you to come along and love you for you.... it's awesome! I love her more than I ever thought I could love someone. I'm thankful for my family. My parents made so many sacrifices for my sister and I and my extended family as well. They have given us the best life! They are two of the most selfless people I know! They are extremely supportive and give of themselves to everyone they meet who has a need. I'm thankful for my health! My FEV1 last visit was 60%. It went down 2 percentage points after 2 weeks of IV's. Stumped me along with my CF team. I felt better so we rode it out. I've been doing my part staying on top of treatments and exercising and have been feeling really good lately! I'm thankful for that, my PFT's could be much worse.

I could keep going, but I don't want to bore anyone. My buddy Ronnie does a thing called Thankful Thursday where every week him and his wife say a thing or two they are thankful for. I really like it! We may just have to start that on our blog too! There's ALWAYS something to be thankful for! What are you thankful for?

What's to come!!

What's up guys! I'm posting again!! I can just sense everyone's excitement! Monica said the blog is really boring right now and I need to post something again to keep everyone's interest. Let me just say we have been overwhelmed by the success of this thing so far! The number of people checking it out and commenting on facebook are crazy! Very cool indeed!

I figured I'd just give an idea of what's to come in the future, things I'm looking forward to posting someday. First, I want to get my treatment schedule on here. What meds I take and how often and what kinds of therapy I do and how often. Let me clarify one thing while I'm at it too, I am not in any way shape or form looking for sympathy or pity. Anything I post is to help educate people and to connect with the CF community. I am not one for pity parties. I don't like to whine or listen to whining, so please don't confuse anything I/we post on here as anything other than what it is. Just a post to educate, inform, and for people to enjoy! We want this blog to be as fun and crazy as we are!! WHOO-HOO!!!

I'd also like to post my PFT history. PFT's are Pulmonary Function Tests. These test measure the volume of air you can move in and out of your lungs. The main one we are concerned with as CFer's is the FEV1. This measures how much air you can forcefully blow out in 1 second. It directly correlates with how "blocked up" your lungs are with mucous. Over time with CF the lungs fill up more and more and the number drops. So, it's a way to track the progression of the disease and tell when it's time for a "tune-up" which is another thing I'd like to cover someday. Routine hospital admissions are called "tune-ups" by us CFer's.

Monica and I at some point will be going through IVF (in vitro fertilization), which we will post on here for all to follow our journey through! Which hopefully will result in some babies! :) So there's a lot to come here on A Walk in the Parks with 65 Roses!

Is there anything anyone would like to see posted?! Leave a comment and let us know!