Cheriz: My life with Cystic Fibrosis

It is June already.... Wow, has time been flying by! May was Cystic Fibrosis Month and I spent a lot of the month preparing for the Princeton Cystic Fibrosis Walk (June 10th). If you want to join us or donate, just click here !  I also attended the Bloomington Great Strides Walk in May! Andrew (my husband) was the guest speaker  (watch video at link ) at the walk. I'm so proud of him, he has really stepped up in the last year and has been getting a lot more involved with the CF Foundation! In the last month I have gotten even more involved as well. I decided to join the CF Foundation Champions committee. We discuss ways to improve daily care and improvements that will help the CF population today. I was also invited to apply for a position on the 2017-2019 (2 year term)  CF Foundation's National CF Adult Advisory Council . The council is made up of 12 individuals that are selected across the United States that are leaders in the CF community. The AAC is responsi...

Why it was AWESOME being born in the 1980s. Besides our mom's awesome hair-dos right? Well, there are some perks to being born in the 1980s with Cystic Fibrosis. You may think I'm joking. I mean, what perks? Right? We didn't have almost any of the beneficial medication or research that we do today. Because of this lack of research & proper meds the expectancy of life was around 10 years of age when I was born. Sadly, this was pretty accurate in my life as I watched 3 best friends pass away between the ages of 10-14. It was tough having CF or a child with CF in the 1908s. Our treatments took longer and the machines were wickedly heavy. Parents didn't have the vest machine, my own mother had to do manual chest percussion on me multiple times a day (up to four times). In the 1990s, pulmozyme was introduced and some research started to take off (but nothing like today). Most people in the 1990s still didn't know what CF was and had never heard of it. With a f...

My Big Doc Appointment: Okay, there is a lot to tell. So let's start with my working out & calorie counting. I know that sounds weird, but I forget to eat sometimes and like low calorie food. I don't care for greasy foods, sweets, or eating out. I'd rather have pickles, grapefruit, baked fish, and veggies at home.. Hence my problem. Low cal foods. So I count my calories. I have an app on my phone that helps me keep track and it subtracts what I have eaten from my goal. I set a goal at 3,000 a day. While I don't always make it to my goal, it sure beats the typical 800 calorie days I used to typically have... I also have been walking (with some jogging bits here and there) every single day my legs permit me. So since the 22nd I have done this for all except 2 days (where my legs were too sore). Those were my resting days. The last 3 days I have done a whole mile and I keep shaving time off. Today's mile was 15 minutes!!! Picture: As soon as we got home from...

July 2nd, What a Day: First, I must tell everyone that it's my mom's birthday! That's right my amazing mother is celebrating her birthday today. As you may know... I'm very much attached to my mother, probably too much. Not gonna lie. I call or text her at least 5 times a day. Judge me all you want. But she ain't you're stereotypical mom. She never tells me what to do, she never judges, she is more of a best friend than a parent at this point. Granted I still call her for an awesome casserole dish recipe, or advice on something I'm doing for the first time, for the most part, she is just someone I like to chat with and share lots with. Plus, she has been helping me with  wedding & CF walk stuff. Here is a post I wrote about my mom on Mother's Day that explains EXACTLY how amazing she is  right here ! SECONDLY, she got a pretty amazing Birthday present. Today is day that Vertex's Orkambi was FDA approval for patient use. What does this mean? W...

Long Day at Clinic: I had my regular Clinic appointment and I went through screening for another clinical trial! I've done two other trials in the last year and a half. Feel free to  Read about them HERE!  I really enjoy doing them! So I'm going to Dr. B's (Chicago's Cystic Fibrosis Institute's) Research Seminar on Sunday. Not only is it 3 hours of lecture about al the old and new trials, but outcomes and implications for us for the future! I love that he is honest, he tells the negative with the positive. Plus, its an amazing restuarant with a beautiful buffet. Shrimp cocktail, omeletes made to order, and even an amazing 3 tier chocolate fountain. I'll probably be a little tired for it, considering I'll be getting home late the night before from a Hockey Game! I was a little nervous about today too, because my lungs have been low the last couple visits. But I was excited to do the screening for the new trial (Inhaled Mannitol vs placebo). My appointment...

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...

5 Needles, 2 Xrays, 1 EKG & 6 Hours Later... And I'm eating at Joe's Crab Shack! That's right my boyfriend and I decided to go out to eat at Joe's since we were in the area and it was a REALLY long day. We both love Joe's, but live an hour and a half away. It's only 15- 20 minutes from my Doc's office though! And by the time I got done today I was worn out and starving!!! No, it's not the worse day I've had, but still really long! I had my last Clinical Trial Appointment for the current Trial I'm on and received my last IV (drug or placebo, I'm unsure). I only have one more follow up appointment and this trial is over. Doc is already discussing some new ones I could join! I've done 2 clinical trials this year. The first one was testing the outcome of switching the anitbiotic nebulziers by rotating the two back and forth. That trial was simple, since I have already been doing that for years. But this second trial was new for me. ...

Clinical Trial & Uh-Ohs: A lot happened this weekend. Thursday was my clinical trial and yay!!!!! my lung function was still same. It's 55% by Docs standards, but by the trial standard it would be considered 60 still. So don't freak out and think my lung function has dropped since I wrote the Blog Post  Welcome to the 60s (read it here) . So that's good news. In 2010, I was struggling in the high 30s and low 40s. Then in 2011 I switched to Doc B, also I was done with school. I had more time to focus on meds and exercise. My extra effort and my proactive doc brought my lungs up to 58  in 2011. And Thursday I was happy to see it at the same place. No decrease in 3 years!!!!! However, I've gotten into the mid 60s before. But that was only after hospitalizations and IV treatments. Well, in the last year I have been enrolling in a couple clinical trials. Most trials are 6 months long. I'm  currently in one now. Its a 3rd phase trial and the 2nd phase trials show...

Back to the 60s: Nope, I'm not in Hairspray again (I was in it in 2012- it was the most amazing theatre experience I've ever had...).  I seriously owe a lot to that cast, been two years (3 productions later) and still no experience can compare. Don't get me wrong all the my theatre productions (and casts) have been amazing, but Hairspray Cast went above and beyond to not just to welcome me, but to help me out. Read the two blogs I wrote all about that show and what they did for me right Here  and   Here , both blog entries describe the expereience and different aspects! Or you cand read all about theatre and the roller coaster it has been for me healthwise, by clicking the "theatre" label on the left hand side. If I'm not performing Hairspray again, then why do I have the song "Welcome to the 60s" in my head then.... Well firstly, it's a fabulous song If you haven't heard it, you must listen : But the real and even MORE EXCITING reaso...

I'm a Lab Rat! Yep, that's right I started a new clinical trial yesterday! I did one clinical trial from November of 2013 until last month and now I'm starting another one! I love everything about it (scroll down to read last weeks' post about why I do clinical trials). I was really excited to start this trial, its a new drug for me. My last trial consisted of me just doing meds/stuff I already do, this time I really felt more like a lab rat. Now, don't get me wrong, we aren't quite lab rats, these meds have gone through previous testing. Not that it matters much to me, I'd do it anyway. I've always been a little obsessed with experiments. Let's face it I was a Psychology Major and the classes I excelled at most were Statistical Reserach and Research Method classes, so yes.... you may call me a nerd. But I loved proving the importance of research through statistical analysis. I actually enjoy being involved in the clinical trials and reading the...

What I'm Doing: Well, life seems like it is pretty much back to normal now...Whew, the CF Walk in Princeton went well, I'm just filling out the "Thank You" envelopes I'm sending to our sponsors this week! I'm sooo beyond pleased with how the Cystic Fibrosis Great Strides Walk went in Princeton! I'm still in awe that we raised over $13,300 for CF Research! I enjoyed every bit of that day and can't wait for next year! Please  click here to read all about the WALK!  It was an amazing day! If you want to keep up to date about what else Cheriz's Supporters is doing to help cure CF or learn more about new advances being made in medicine for those with CF- "like" our  Facebook page here! So what else is going on in my life?  Now that the walk is over, I'm concentrating on getting everything packed up and ready for the move to Dekalb area! So excited to move, the area will be much better for me, less driving time, more time for focus...

Clinical Trial and My Clinic: So much to tell about today's doctor visit. I had my last clinical trial today! I started this trial in November and since then it has really helped me remain consistant with my medications. As a Pyschology major (and favorite class was my research statistics course)... Soooo yes, I'm a major nerd that loves experiments and crunching numbers to prove points...Therefore, I can't mess with data. So if Doc wants to keep me consistant with meds then enroll me in a trial. I refuse to mess up data for the well being of other CFers. So doing this trial really helped me keep on tops of all my medications. And guess what!! Even though this one ended today, I'm starting another trial in two weeks! It's with a new drug/antitbody that is suppossed to help keep the Psuedomonas Aeruginosa under control. I don't want to say much, but I hope I get the exprimental drug opposed to placebo. I really want to see if it makes a difference, I'm e...

7th Clinical Trial and Results: I had my 7th (out of 9) clinical trial today. Glad it is almost done, once it is over I can change some of my meds around. It's hard to believe I've been doing this clinical trial since October! This trial has kept me on my toes. I've been keeping up with my meds and have been compliant with them. With my work schedule it can be a little tought working around the different hours, but overall it has been working out okay. Today, at the appointment, they put me in a different room. I was in the exercise room, where doc does all the exercise type tests. Looks pretty cool huh. So now for the results. I'm kinda disappointed that my lung function didn't change. What a bummer, but I guess at least it didn't go down. Doc always says stable is good. But I don't want to think that the 50s is my baseline. But sadly, I think the 50s are my baseline. But that doesn't mean I'm not going to keep working extra hard to see if I c...

   Clinical Trial and Food (& recipes!):      Today was my 4th clinical trial visit, 4th out of 9... 5 more months to go! I was excited to see my Cipro (oral antibiotics) helped. My lung function was up from last month!  Read about my past Clinical Trials HERE in these 3 Posts!  It has been a roller coaster, but finally my lung function is going in the right direction. It was 58% today! Which is up from 50%..so YAY! Cipro is definitely working.And I'm almost done with it, so then hopefully no other antibiotics for a LONG TIME!  During this Clinical Trial we can't change my medical routine or do anything majorly different. So my plan (I hope it works!!!) is to prove I can keep my weight up without my use of my stomach tube and then get it taken out after the trial is over. I haven't used it in a couple months, so far so good. My weight at the appointment was 108 lbs. I need to stay above 105 at all times (even when ill) and try to maintain aro...

  Updates and Evaluating     I realize I have a lot of different topics that  I have been discussing lately and should probably let you know how each are going. So much has happened, let's see... I got sick a lot, 2 trips into the hospital in October, a month of Gastrointestinal Issues in November, Colonoscopy in December, My CFer Bestie Laura was admitted with low lung function/was put on 24-7 oxygen and starting fighting for a Transplant in December. I also have decided to focus on getting my lung function back, but since it has been slow paced and I have been doing more crafting and cooking lately! Well let's begin the updating: 1. School: I had to withdraw from last semester (my first semester of Grad School) and I'm currently hoping to start a new program in the summer! And my tuition appeal is still being processed, I emailed them yesterday to make sure they didn't forget :-) ( Read About Why I had to withdraw from school HERE) 2.Gastrointestinal Issue...