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Thursday, May 31, 2012

Thankful Thursday: Amazing wife, family and AC

Hey it's Thankful Thursday time again! I really enjoy doing these. I always look forward to Thanksgiving every year, so I can tell people all the things I'm thankful for. Honestly, there is a lot one can be thankful for! This is a brilliant way to share those things all year round! So here's our list of what we're thankful for! What are you thankful for?! I know I ask this every time, but it's not just a rhetorical question, we would love to hear from you!

Jeremy's list:

I'm thankful for a hard-working dedicated wife! Monica and I both work full time. She is considered part time but requests to work full time hours. I wanted her to switch to part time, while she was taking a few classes and because we were doing fine financially with her only working part time. She however wants to work full time! For now anyways. We are hoping to do IVF soon, which costs a cool $19K. She has been working so hard at work, and doing cakes on the side to help us save the money to do IVF. Out of the total $19,000 we only need $8,500 more to have saved up all the money we'll need!!! We can't take complete credit for that however. We have some amazing people in our lives and received 2 gifts from some incredible people totalling $3,500! In the process of saving for IVF, we also have been trying to get completely out of debt, minus our house. In the past 2 years we have paid off $15,100 of debt, which included a few hundred on credit cards, both of our cars, and 2 of our 4 student loans! We are extremely proud of this feat, but more so I'm amazed at my wife! She has not wavered from our goal. We have taken one extravagant trip as a reward for doing so well, but other than that, she has not wanted to buy anything. She's used to nice stuff (she's spoiled) but she's not high maintenance and has been so humble and goal-oriented when it has come to our finances. I'm really impressed and amazed. When I first found out about The Total Money Makeover from a friend, I thought "Oh man, don't know if Monica will go for this." She jumped on board and it has been awesome what we've accomplished, through the many blessings from God of course! :)

That leads me to my next point. I'm thankful for Mike Romero and Dave Ramsey's Total Money Makeover! Mike is a high school buddy that lives in Denver, CO. He introduced me to the Total Money Makeover about 4 months after we were married. There are all kinds of finance books out there, but the Total Money Makeover works for us. We love it! It has helped us establish a written budget we write and stick to every month and has been the reason behind being able to save for IVF and get rid of so much debt! A big thanks to Mike and his wife Katie, who are expecting YAY, for helping us get started with the makeover! I highly recommend the book to all who would like to take control of their finances but need a little help. That's my thankful list! And now..... heeeeeeeeeeeerrreeee's Monica's!!!!

Monica's List:

I'm thankful for such a Great church family! The support system that we have really helps Jeremy and I to keep our positive attitudes. I never have to wonder if there is someone praying for Jeremy and I. We have many prayer warriors at our church who take the time to let us know they care and are praying. And I KNOW that when they ask, "How is Jeremy doing? I've been praying for him." they REALLY GENUINELY care and are in fact going to God on his behalf. That is so humbling! I couldn't ask for a better church family, and that's exactly what they are to us, our family! Part of that family are our great pastors Arlie and Treva! These are two of the most wonderful people you will ever meet! I could get chocked up just thinking about how much they mean to us! They are always there to encourage and teach us in our faith, visit when Jeremy is in the hospital, fellowship with us, and simply be a listening ear when needed. We love you Arlie, Treva, and our church family at Friendship Assembly of God! You are all AWESOME!!

I am thankful for warm weather! Jeremy and I LOVE summer! We love being outside and for the most part don't mind the extreme heat! Some of the things we look forward to in the summer: vacations, canoe trips, six flags/hurricane harbor, swimming, barbecues, going to the lake, evening bonfires, being tan ;) and so much more.... I could just keep going! I'm just so happy it's summer! (Can you tell?!) ;) On that note, we are off to Six Flags now......... YEAH!!! Enjoy your summer everybody!!! I know we're going to!

I am also thankful for AC! HAHA! While I love the heat, there are definitely times where I enjoy walking into my nice cold house... like right after I just ran my 5 mile trail in 90 degree weather..... yeah, the AC is pretty awesome then! We are a very spoiled nation and I am thankful that I was born an American with all of our modern conveniences! I am so blessed!! Thank you God!

Tuesday, May 29, 2012

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


01/04/2016: FVC 77%, FEV1 57%, weight 156
09/21/2015: FVC 81%, FEV1 55%, weight 156
08/10/2015: FVC 76%, FEV1 53%, weight 158 (Oral antibiotics)
04/30/2015: 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. 
04/16/2015: 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)
04/06/2015: FVC 83%, FEV1 57%, weight 155 (feeling improved, not baseline)
03/16/2015: FVC 76%, FEV1 53%, weight 160 (sick, oral antibiotics)
11/24/2014: 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.)
08/01/2014: 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)

Monday, May 21, 2012

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!

Thursday, May 17, 2012

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!!!

Thursday, May 3, 2012

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?!