Cheriz: My life with Cystic Fibrosis

Clincal Trial Appt Outcome: As you may have read on my Facebook or My Twitter  I was a little nervous that I'd end up on IVs today. I was also very nervous about driving in this CrAzy weather. Luckily, Andrew was able to drive and after the appointment we stopped for Subway real quick. I mean $2 subs who can say no?!  And a subway cookie- heck yeah! The appointment today was my final appointment for the KB001-A Trial I was doing, if you want to read the basics about the trial (posted on CFF) then click HERE!  I didn't mind have the 2 hour IV once a month (for roughly 6 months), I'm just excited to read the results and that I got to be 1 of the 180 particpants in the nation that got to be involved! Right before that psuedomonas antibody trial I did a trial that helped proved the effectiveness of switching Cayston (inhaled aztreonam) & Tobi every other month. That trial was super easy in the sense that I have already been doing that for years. If you want to read...

Phantom Limb, I Mean Phantom Tube: Well, you   heard right... I'm back to having trouble gaining weight. It's because the amount I need to gain is 8 lbs. Which can take me a couple months. It's a slow process, but as long as Doc. B sees progress he will be happy. And happy Doc is what I'm aiming for, considering I promised him I'd put a tube down my nose/throat into my stomach every night if I have weight troubles again in the future. I'm at a really funny & ironic point in my life with weight. The truth is I finally figured out how to keep my weight up without using the G-tube (stomach tube) I had. I didn't use the tube for over a year to prove I didn't need it. I had many reasons I wanted it out. Here is my list I gave the doc: 1. It leaks around the tube & Surgeon said I'd have to just put a bigger tube in. 2. The leaking causes the stomach acid to eat my skin, leaving in sore and raw. 3. I have to wear gauze and bandaids everyday...

A Flexible Job That Helps Me Maintain My Health: A few weeks ago I wrote a blog post all about why I pursued Real Estate and why going back to Grad School isn't an option for me anymore. If you don't remember reading about my blue print sidewalk chalk drawings or my childhood design portfolio, make sure you  Read It RIGHT HERE! After reading that & understanding why I'm pursuing Real Estate and how it will help my Cystic Fibrosis as well. I'd like to announce my GOOD NEWS! I got an A on my Real Estate Final!!!!  Finally, I feel like I'm turning my life long hobby into a career: see pic right.  That doesn't include my magazines and yep, I have the fallingwater Lego set (but its not finished yet). Got an A on the final...that sounds good right, well let me explain. I'm not done yet. I have another 5 week real estate class (where its more hands on & case studies). Then after passing that smaller final exam, I can register & pay to take the ...

Racing up 58 Flights For Me: Aw, isn't he sweet! Andrew (my Boyfriend) raced up the 58 flights of stairs in Chicago at the Cf Climb to raise money for our Team ("like" our  Facebook Page) ! He raised $425 today and did an amazing job! I'm soo proud of him! To read about last year's climb (for pics) click  here for CF Climb 2013! Right Pic: Andrew enjoying the breakfast and fueling up before the  climb!  Below: Andrew's time recorded!  This year Andrew did it in 22 minutes and 13 seconds! Which means his avearge (if I did the math right) was 22.9 seconds per flight! He may have been a little disappointed since his time was slower than last year, but I think at least some of that had to do with the way they had the people line up this year. Pic Right: Andrew just coming out of the stairwell...  Last year they announced 3 groups to line up to sort of divide the people up. This way the fastest people were first and didn't have to go around slow...

To Do a Bucket List for Cystic Fibrosis: Lung function is one never ending battle we face. We can do all our meds, be compliant, and try really hard, then still see a decrease in lung function. We never know where we will pick up some bacteria or bug that will undo the work we have done! Its exhausting to think I do 9-11 breathing treatments and over 3 hours of therapies a day and see a decrease. I hope someday this will change. I had Clinic (regular CF appointment) on Monday. My mom went with me to keep me company. I live an hour and 45 minutes from my Doc office, so it can make for a long day. This appointment was faster than most (lately I've had Trial appointments at the same time). My lung function (FEV1) was 52% by my Doctor's standards. Normal (non-CF lungs) tend to be between 90-120%. I'm okay with 52, but I wouldn't say I'm happy about it. My lung function has been pretty stable in the 50s lately. BUT, my goal is to always keep it above 50% & stri...

On Dating Someone with Cystic Fibrosis: If you haven't read the first part: Cheriz's perspective on dating & having CF, or you just want to refresh your memory, check it out : Right HERE!  And Now Andrew's perspective on dating someone with CF!  Well to start off, I will introduce myself formally. My name is Andrew and I am dating Cheriz who, as all of you know, has Cystic Fibrosis. I am 23 and am currently studying to be a high school history teacher. I attend class full time and also work full time. We have been dating for the last two years as of October 27 th , and it has been two years full of ups and downs, but I would not trade them in for anything in this world. I do not consider myself a writer and actually am very self-conscious about my writing; I do not even let Cheriz proof read my papers. The purpose of this blog post to help spread the word that dating someone with CF is possible and actually is one of the best things that have happened to me in ...