Cheriz: My life with Cystic Fibrosis

Follow up: First of all, look Andrew & I are making banana bread. It's either to celebrate the good news of the purple machine arrival or console me for not getting it.... We'll see. And yes, for those of you who know Andrew went to culinary school. This WAS a joint effort. haha, I cracked the eggs & put the banana in..... and we used our awesome Christmas present (Love our KitchenAid). If you aren't quite sure what I'm talking about... a pretty purple machine? It's been the topic of conversation on my Facebook page called " Cheriz: Living with Cystic Fibrosis "  (consider "lliking it" to keep updated on everything) and I've also talked about it a little bit on my blog over the last 9-10 months. See, It's about getting a new Cayston Machine.  Cayston is one of the nebulized antibiotics we (CFers) can take to keep infections & the bacteria in our lungs at bay. For example: 80% of CF patients have psuedomonas aeruginosa in ...

Doc appointment:   This is gonna be a quick blog post. I just got home from the Doc's and I'm super tired. So here's the update. Mid January I went into the hospital and was on IVs for 2 weeks (my pft was 48%). After the hospital/ IVs it only went up to 52%. So doc added some nebulizer antibiotics. Today I had another check-up and my lung function tests were low. Like lower 40s. So Doc had me take a couple puffs of my albuteral inhaler and retry the pulmonary tests, they went slightly up (around 49%). So pretty much the hospital & IVs didn't do anything,  and neither did the Colliston nebullizer. So what now? Well, Doc wants me to continue the Colliston & Tobi, but add a 3rd albuteral & vest per day. So that means 5 nebs, half hour vest in morning, 1 neb & half hour vest mid day, and 4 nebs & half hour vest at night.   Picture right: My night meds tonight! Also, I'm going to be going back on prednisone (20 mgs a day) for another. Meanwhille...

Juggling the Medical Stuff: I'm glad my life has been busy, since being busy keeps me focused. Plus, I love it , which most of you probably already know. I just prefer to be busy with more of the non-medical stuff  rather than medical crap. I feel like I'm a pro at Juggling life and medical problems.  For example: I'm getting married this August and I am planning the Great Strides Walk in Princeton (June 27th). I LOVE planning events, I'm super organized person (to a fault sometimes).  I wanted to make sure to plan the  wedding in Jan/Feb, so I could focus on the walk in April/May. Both events mean a lot to me and I wanted to make sure to plan each the best that I coud. And I'm pretty excited that I'm turning 30 in about 1.5 months!!!! How exciting is that???  For a long time I thought I'd never get the chance tobe 30 years old, or marry, or grow!  But I am, thank you to new research!  My lung function is around 52% which is okay, but it is at the ...

Rescheduled Doc Appt & more:  I was supposed to go to Doc's today for my post "sick" appointment. However, my car was acting up and I need to get it looked at before I go traveling 2 hours to docs. If your unaware of my being in the hospital and on Home IVs recently, you may want to read this post I wrote here for the info . A lot has been going on, with my trying to get back to my nomral baseline with health, planning my wedding, the CF Walk, and preparing for the licensing exam. Lots to do, but don't worry I LOVE IT. I thrive on being busy. Granted a lot of it is planning related, which I can do at home with the luxury of my meds and food nearby, but still busy. My rescheduled appointment is on the same day I start the new clinical trial on March 9th! The last month or so I've shared a lot about my current health issues and past ones (if you don't know my history or CF story, check out my CF history page of the blog here  or just look at the tabs I...

Happy 3 year Birthday/Anniversary to my Blog!    I can't believe I have been narrating my life in a blog for 3 years. Seems a little self centered when you think of it that way. HOWEVER, I'd like to think of all the changes that have come about because of my blog in the last 3 years! I wrote a blog entry on my Blog's 1st anniversary and 2nd anniversary . In my 2nd year blogging anniversary post I brought my readers up-to-date with the changes I had made since I began blogging. Read those entries to remember where I was in life at those points. Since the 2nd anniversary (in the last year), I've moved to the DeKalb/Sycamore area, decided to go back to school to get my real estate licenese (and finished all my courses). Plus, I got engaged to Andrew (and will be marrying him this fall)! I'm one lucky lady! In the last 3 years, not only has my life changed a lot, but my blog has really grown! I enjoy blogging about how CF influences my life. Why? I guess 1. It...

One miracle please: I know my next post is supposed to be about CF & Marriage (and I actually started writing it). However, I'm saving it until tomorrow, because this is more important.  Also, quick update: I'm off IVs and now doing double doses: Tobi & Colistimethate nebs to try to increase my lung function.  I added this blog entry today, because I got to thinking...Where to begin... Well, Cystic Fibrosis is tough and mean. It may seem like a lot of work (and it is...). Doctor's appointments every few weeks,  doing 9 nebulizer treatments a day, doing vest therapy twice a day, doing stomach tube feedings, surgeries, constant coughing, fighting infections, etc. BUT, none of that bothers me and isn;t why it's tough. Why? Because its just something I have to do to live and be healthy. I think of it as the same as eating or sleeping. It just means the amount of time in our day that is dedicated to keeping our bodies healthy is a lot more than the average person...

Docs Appointment Today: Yep, I had my 2 week (14 days) post (Hospital/on IVs) appointment today, It also is 5 days post switching up the IV meds from Aztreonam to Pipracillian. Make sure to read the posts below to get caught up, before reading my current update.  First off, I'll explain some of the simple stuff from today's visit. My weight is only down 1 lb, so that's not too bad and Doc is pleased I'm feeling better each day. I have more energy, I'm not coughing as much and when I do its productive and not dry. Which means the 2 IV meds, 6 nebulizers, 3 Therapy Vest treatments, and 1 steriod (on top of my usual pills) were working. So that's good. And I'm keeping 100% complaint. However, 5 days on the new IVs hasn't been enough for my body to really pump my lung numbers back, so my actual FEV numbers (lung function tests) were the same from last week, so that's a bummer. BUT, since I'm starting to see a difference in how I feel that means we ...

Time for an Update: Tuesday is my follow up appointment to see how these new IV meds are working. As you know Doc changed my IV meds out for different ones, because my first 7 days worth of Aztreonam & Tobra didn't do much and I still felt sick a week later (this was last tues). Well, he switched it up from Aztreonam (the med I usually do on IVs) to Piperacillin (which I haven't been on in since around 2010). Piperacillian is slightly related to another antibiotic that I'm allergic to, so he was hesitant. But, I told him I had done it before and was fine. And he knows we are running out of options for meds (I'm allergic to the 3 main antibiotics that CFers take for their psuedomonas).   Picture right: Some of the medical supplies I got. And guess what.... I think its working. My energy is coming back, my coughs are actually getting better. I haven't used my rescue inhaler for a couple days, AND I can tell I'm on the right track. So I did 7 days on the ...