Cheriz: My life with Cystic Fibrosis

Update Time: Make sure to read the previous posts about me being in the hospital and coming on home IVs to fully understand these next updates. Okay, whew where to start. First of all, I made my first VLOG today. So I'd encourage you to watch that to really understand what I have been dealing with last night/ today... Here is the video: Incase it doesn't load correctly you can go to my youtube channel HERE & watch it. Sorry about the bad camera angles...I don't have a laptop with video capability. So I had to choose between a desktop in my bedroom or my phone. So I made this lil masterpiece with my phone. I'm sure Ill get the hang of the camera angles as I do more. Normally, I wouldn't post a whole blog with my video (defeats the purpose). However, this is my first VLOG and I have some updates on the medical situation I talk about in the video. My nurse came to do my afternoon med, since I don't feel capable of keeping on top of everything an...

Planning and IVs: If you haven't read my last blog entry, you will want to scroll down and read it. Otherwise, you may be a little confused. I was admitted Tues night into the hospital and thankfully discharged on Friday night. Whew. Doc knew I wanted to be home for the weekend, I had lots of plans. Saturday morning I headed back to my hometown to sign a contract and pay the wedding venue deposit. I went for lunch with mom and even got to hang out with my Dad for a while. I talked to my Caterer and set up another appointment to finalize everything. That night Andrew drove home for Grandma Loebach's birthday. She cracks me up. We got her a card and Andrew picked her out a bright pink nail polish called "Young and Cheeky." She kept saying she was 19 instead of 91 and even asked Andrew to paint her nails with it. Adorable. Andrew dropped me at Mom's so I could do night meds & IVs. He had to head back early because he was due at work at 7am the next morning.  ...

My start to 2015: I started planning my wedding, got started on the CF Walk for Princeton , and I was ready to begin a new clinical trial! However, over the last few months I started to drop in lung function. It was always little by little and since I wasn't feeling sick, we kept holding out for an increase.  Read more details in t his blog post here! Why weren't we worried? Well, we were cautious. But I'm allergic to all of the options for oral anitbiotics and most IVmeds used to fight the Psudeomonas in my lungs. Therefore, we like to exhaust all other options before IVs to make sure I don't build a resistance or even an allergy to the only 3 IV meds I can be on. However, on Jan 7th (as you have read if you clicked the blog post above) that my lung function was 48%. In October 2013 it was 64 right after IVs in the hospital and my baseline for 2013-2014 was around 57-58%.  I started to nocitce I would get out of breath walking normal amounts or doing any type o...

Does One Affect the Other: In short, No not really. So why write about it. Well, they don't affect each other directly. I actually have found putting together the wedding to be fairly simple and fun. Nobody ever said "Oh its is fun and so easy" You always hear one of two replies. The first being "Its so stressful and time consuming" and the second "It's fun, you'll love it."  So I'm going to assume most people love it and hate it. In this post I'm going to explain some reasons I find planning a wedding easy and enjoyable, as well as some difficulties (including CF topics). Reasons why it has been easy for me. I know the area, venues, caterers, Djs, Photographers in the area. I'm the organizer of the Princeton CF Great Strides Walk  and I've planned numerous other events too. It's all about being strategic and well planned. I took one day I had free and made all the calls for multiple quotes. I knew which caterer I wanted...

Too Busy for My Own Good: My Family bought tickets to the Rivermen (Hockey) Game for Christmas for my Dad. The game we got tickets for was Saturday the 10th! Growing up we went to tons of Rivemen Games. For my 9th Birthday my family and a friend got to go to Rivermen and I LOVED it. I even met some of the players, got signatures, and a hockey puck from a game. We loved Rivermen, but as we got older we just stopped going. Too busy with high school and college, etc. Dad had mentioned it a few times, so we deicded to surprise him! He loved it! Actually we all did! Above  Picture: The Family at the Hockey Game! We love you dad!  So we decided to come home friday night (before the game) and have Dinner with Andrew's parents. Then Friday night Andrew dropped me off at a girlfriend's house, so we could talk wedding/bridesmaids stuff. Saturday Morning a friend (a bridesmaid) did engagement photos for us for free. If you didn't know we were engaged, then read the post called OUR...

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...

See all the Pictures (let it download)! This is a picture reveiw of 2014! 2013 was a tough year medically. But then again, every year has its up and downs.  Read & see our picture reveiw of 2013  (cuz whew it was a doozy). While 2013 was medically exhausting, 2014 was a year of more emotional up and downs. Follow along my year with all the pictures that captured the moments. The year started off with my needing oral antibiotics (CIPRO).  Which I've been developing a more severe allergy to them. My lungs got better... and I was doing a clinical trial! My stomach tube was leaking so bad This blog post  here explains a lil how I felt & feel  trying to keep up My stomach tube was trouble almost all year! In April: Andrew planned a great date at Starved Rock and spent the next day with my family for my 29th Birthday! I starting heavily planning for our FIRST Princeton CF Walk We celebrated Andrew's Birthday in May ...