Cheriz: My life with Cystic Fibrosis

5 years ago I decided to start blogging about my life. I wanted to take a more active role in the CF community, share my story with others, hear others' stories, and fundraise more effectively. I believe I have accomplished all this and more! I can't wait to see what more the future has in store. There were many topics I could have blogged about today, but I decided for a such a big occasion that I should talk about one of the biggest decisions I ever made. Getting my stomach tube!!! Also it (apparently FB says) is "Feeding Tube appreciation week" Let me take you back to when I was in 6th grade. (time travel music insert here). I weighed 45 lbs around 4'8 ft tall and ran out of energy so often, I'd stay in during recess or breaks to eat extra food and drink ensure. I struggled keeping up with my friends on Halloween, didn't have enough energy to even play sports. I struggled a lot, but I kept on pushing. Thanks largely to my family, friends, and ca...

Wowzer: I feel my life has been so busy in the last month or so that I can barely keep up with my blog. I discussed some great news in my last post! I was really nervous with my decrease in lung function this year. I wasn't completely sure a hospital stay or 2-3 weeks of IV meds would help (even with steroids). In 2015, I struggled and barely saw an increase after the IVs. So deep down I am always nervous. I was beyond relieved that I'm closing the gap in numbers and increasing. I'd love to continue the climb. So I have been pushing harder than ever. However, it's exhausting and I'm not completely succeeding at it. I have been keeping on top of the my meds. I have been doing all 3 sets of nebulizers, at least 2 (30 minute) vests. I've been walking a lot, because my  job has gotten quite a bit busier with it being warm out. I currently have 1 client house hunting, 1 working on getting approved, 1 contract in escrow, and a few other clients that are preparing ...

Road Block: Hit an Obstacle:  If you are new to my blog you may want to read about my past GI specialist appointments, colonoscopies, and weird diets they put me on HERE , since that has been my biggest obstacle to getting healthy. Post Christmas and all through January I was doing really well! Weight up to 107.8 lbs, lung function even around 55% again- up from 36%. Finally working out and eating right! And then BAM! GI problems all over again.  All of the issues are back. The diarrhea, bloating, but the worst is the intense stomach pains/cramps I get (that they say are my colon spasming). I've been having these issues really bad off and on for a couple years, but got worse when I had my g-tube taken out. Not sure if that is related or they just kept escalating and it was a coincidence. But either way, it is interfering way too much.  They tested for Celiacs and Crohns in the past, both negative. So the GI doc said it was my diet. So he told me "don't...

 Who Doesn't LOVE the Summer: Summer is very much welcomed in our house! Andrew has more time off in the summer. I'm excited he graduates from college this December! Since the Fall of 2013 he has worked full-time while going to school full-time (35-45 hours at work & 12-15 credits per semester). This fall will be a little easier, he only has 2 classes & his Capstone Paper/project. However, he has been working on that this summer so he's ahead of the game. I've been enjoying spending more time with him this summer. Last night we walked down to the lake and had a picnic dinner. Had to find a shady spot so I didn't get sunburnt, I burn fairly fast from daily antibiotics & fair skin. We got to use one of our wedding shower presents. My mom got us a lawn blanket that zips up, along with the shadowbox, and other items. We love to going to the band concerts & activities in the park. So the lawn blanket will get lots of use. We packed it all up in a pic...

Gotta Keep Chugging: 2015 as year has been amazing, but also difficult at the same time. I love the achievements, happy memories, and celebrations that have or are happening. For example: I turned 30 years old in April. If you don't remember, check out the photo album from it on my CF Facebook page . We turned my birthday party into a Bowling CFF fundraisier, raising $400 for our Great Strides Walk! In June, I also hosted & organized Princeton's 2nd CF Walk (first official Great Strides Walk) and we raised over $22,000 for the CF Foundation. And of course, ANDREW & I ARE GETTING MARRIED in August!!! As promised here are a few more photos from our wedding shower- It was a beautiful shower, THANK YOU! It has been an amazing year!!!! But, it has its rough patches too. I've had lots of GastroIntestinal Issues, was on IV meds that I didn't respond too, was on steroids and over 11 nebulizers a day for a long time... And I only saw a slight increase in my...

This Week: Well, this week started off really nice with the 4th of July, my mom & sister's Birthdays, etc. But a lot is going on right now! We are starting to finalize wedding stuff with the caterer & flowers, etc. Got almost 50% of RSVPS back, a few invites had to be re-sent out due to people moving, etc. But so far wedding stuff is going smoothly. My sister & a couple bridesmaids have been planning for our wedding shower this weekend. We decided to call it a wedding shower, instead of a bridal shower, because its for Andrew too. I think it is silly for him not to be there, the wedding isn't about me, it's about us.  He's looking forward to it too and I have been super impressed with my sister's mad organizing skills. She has been simply amazing and so far we haven't had to many bumps in the road with wedding planning. It takes organization, but its pretty much like planning a CF Walk or other event. Picutre: My sister & I One aspect of ...

Regular Doctor Visit: As you may remember I'm doing a clinical trial right now.  Today was my 3rd week/ Appointment for it and it ends next Wednesday. Shortest trial ever! It was a simple one too. It's just a new breathing nebulizer to try out. I wrote about my diet and GI issues in the past and yes, they have been solved. But now I'm losing weight like crazy because I can't eat anything that has decent calories. So sadly, I am below 100 lbs. In fact, now my low weight, energy, etc is effecting my lungs too a bit ( I think), since my lung function dropped more. I'm at 50%. Not 53, 55, but 50. Which is okaaaaay, as long as it doesnt go lower. We usually have to take action with meds or IVs or something when its below 50%. AND since IVs didn't work in January, I really need to get these numbers up. Picture: Me chilling, reading a magazine I've been getting delivered to me since, well over years... Ha, ever since a friend got me the subscription. I keep r...

Getting Some Answers: My wedding planning is over and the wedding is coming up soon. We get married in 2 months! Also, the CF Walk I'm in charge of is on June 27th, so two weeks and that is done (if you want to donate to it, here is my page: http://fightcf.cff.org/goto/CherizKunkel  ). The Clinical Trial I'm on has two more weeks as well and its done! Life has been so busy lately, that even though I love everything that has been going on... I can't wait until life is a little simpler. But I guess life isn't really ever simple. The clinical trial is going pretty well. I miss being on hypertonic saline, but it's only a four week trial. The actual breathing treatment/ trial med doesn't take that long to do. So that is nice. However, the trial med has a more rigorous cleaning/sterilization process after each use. That takes time to do and makes traveling a bit harder. That didn't stop me from going to visit my sister for a few days. She moved to a new pla...

Lots going on medically: This week has been a big week! For example, did you know: this weekend is "National Walk Weekend" and there are over 150 Cystic Fibrosis (Great Strides) events (walks) taking place across the country just during this weekend! How awesome! Make sure not miss out on Princeton's Walk today as part of my team (Team CF2) here !  But wait there's more exciting news!... The FDA advisory board recommended approval of Orkambi (a drug that targets an underlying defect for mutations DDF508). It was named Orkambi just recently, it is a combo drug of Lumacafter & ivacaftor. Side note: Ivacaftor is also know as Kalydeco (which was another drug that targets the faulty gene & its protein product, CFTR. This was for people with the mutation G551D ). Kalydeco & Orkambi are two drugs to actually target the defect, which means we are heading in the right direction. Side note: this is not a cure, actually the 2 drugs haven shown to help les...

Medical Update: If you don't know I've been having a lot more GI problems. I've always had issues with my intestines. Ha, that's an understatement. I've had almost 25% of my intestines removed over the years. It started at birth! (Read about my medical history HERE ). Picture Right: I'm a few weeks old here, you can see the scarring on my stomach from the surgeries I had. But I've really noticed more issues since 2013. By issues I mean : stomach pain, cramping, not wanting to eat all the time ( I know, crazy huh), and the ever so fun diarrhea. I use the word "issues" cause it's easier and let's face it, prettier... I was hospitalized for the bathroom issues in late fall 2013. But we think the IV antibiotics destroyed all the "good" bacteria in my gut, hence the inflamed colon (which is pretty annoyingly painful) & the diarrhea. But the bathroom problems are getting worse.. and I actually sometimes wonder if I could even...

Back to GI Office: As you know I went to the GI doctor's little over a week ago and had a horrible experience. It was just the worst doctor I have EVER had and considering my MANY medical problems that's saying something. If you didn't read about why I went to the GI or how that office visit went (check it out right HERE ). Mom went with me again, we had lunch and got to spend the day visiting. I always like to take someone with me, so I super happy she could come with me! Luckily, this doctor was AMAZING. Which Doc B said he would be. Let's call this new, nice, smart doctor (Doc K). I explained all the pain and bathroom issues, etc. Here is what he suggested for our plan of action. First, rule out food allergies & intolerance issues, and get a blood test for Celliacs (just to cover our bases). If diet and food changes don't help, then time for Upper & lower endoscopy with biopsy of tissue. So here is the game plan: Get the blood test for Celliacs ...

In Shock from the Doctor: Let me start by saying I LOVE DOCTORS. I'm not being sarcastic, I'm sincere. I have an amazing Cystic Fibrosis Doctor, I had a great GP growing up, Amazing CF Pediatrician,  great eye doctor, Cerebral Palsy Specialist, etc. Seriously, I've never had much complaint! I had a doctor in the past that was a lil apathetic about treating my CF,, he wasn't as aggressive as I wanted. He was a good doc, but not right fit for me. For example: That Doctor would tell me I was doing a great job, my lung function was good enough for my age, and keep it up. My CF Doc now (Doc B), tells me how great I'm doing, but also encourages me to jog and exercise. He emphasizes the extra stuff I can do to REALLY help me make the most impact! I love that and respect that. I feel he won't let me slide and get away with missing meds or slacking off, which is what I want! Aw, Me and Mom so happy to be at the GI and excited to solve this issue. Little did we know.....

Don't Forget To Fight: I'm not the toughest person, but I'd say my Cystic Fibrosis has done a great job of toughing me up. I mean that in a good way. I have endured a lot of needles, surgeries, pain, doctors, and more. But because of these experiences (some I'd call traumatizing) have made me realize that I can face anything. I'm not afraid to work hard for what I want and I know how to deal with anything life might throw at me. Well right now, life is pretty good. I haven't been on IVs at all this year, only in the hospital for 1 night (for my stomach tube surgery) AND (other than post surgery weight loss) my weight has been stable and slightly increasing ( very slowly). Overall, it has been a pretty stable year. Granted I couldn't work a lot of the year do to my stomach hole leaking issues, then the surgery, plus I've had some weeks where my intestines were acting up (tiny blockages, etc). Still this is a big improvement from 2013 (Here's a rev...

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...

Pre-Op Appt:  I had my consultation with Doc C. (my surgeon). Yep, Doc B ( my CF Doc) and I were right. I need surgery. Oh, boy! (sarcastic voice) But, it could be worse. I could still need a G-tube. Let's catch ya up if you are new or don't know the details.  Here is the 3 link journey through my life with a stomach tube! First: Why I got it and I how I feel about it:  "Tu-be or not Tu-be" Secondly , The day I got it out:  "Amazing, Terrifying,& Disbelieving News" Lastly , my problems once it is out:  "Healing & Fighting" which led to this surgery & post... You may be a frequent reader and have read them, but just in case the links will fill you in! Okay, so what's the problem? Why do I have to have the surgery. Well, #1 I've lost lots of weight since it came out.  I'm a 100.0 lbs (almost below triple digits). I worked soo hard in college to get into the 100s, I think I will cry if I drop to the 90s. I'm bu...