Cheriz: My life with Cystic Fibrosis

Big News, Big Times, Big Change: I had my post hospital Doctor's appointment on April 21st and it went well. I posted a video on my CF facebook page. My weight is back on track, heading up. Also, my lung function was around 55%, so that's almost my baseline. I got to take my needle out that night. OH BOY!! I loved being needle free! Whoohoo no more IVs!!!!! In the last week I have been super busy with a few different things. 1. Work. I have a new client AND I had all my post licensing webinars & exams this last week! 2. More CF Foundation Volunteer work. I held a presentation in my home town, where I discussed CF, the different mutations & severity of classes, as well as fundraising for great strides. I talked about the history of the CF foundation, care centers, and more about our local IL CF fundraisers. Overall, it wasn't a big turn out, so I was a little bummed. My hometown has always supported my CF cause, so it was disappointing not to have a good numb...

Cheering Today: I'm VERY excited to say that I came home last night! I got home around 6pm, I unpacked my hospital bags, got all my meds sorted out, and made room in my medical/linens closet for the IVs supplies. Not to mention room in the fridge for the meds :-) (does this look like your linen closet? It might if you have CF...lol) If you read my last post you know that Doc re-did my lung function test on Monday. He said I'm on the right track and I have improved. I'm around I'm high 40s for lung function, since he said I am up 10% ish. I still have a ways to go. I'm usually around 58% lung function if I'm feeling well and keeping on top of everything. Which is super hard sometimes, especially on home IVs. I posted the schedule I will be following now that I'm home in my last post. I REALLY want to see 60% again! I haven't seen the 60s since 2014 and it was only a short blip. It's not ALL about the numbers though. I get really out of breath ...

Newest Hospital Update: As you may have been reading, I was hospitalized on last Wednesday (my 31st Birthday). Tomorrow will mark a full week in the hospital. When I was first admitted I couldn't have done a lap around the hallway without a huge cough attack. Today, I can do 3 laps (getting out of breath) with no coughing attacks! Whoot whoot! I have been posting updates via videos on my Facebook Page . The last one I posted was "Not a Happy Camper" (where I didn't have any hot water for 4 days and I had been waiting for my breakfast for almost an hour and a half).  Good news. They did bring me a new tray right away and they fixed my hot water later in the day. Since my water wasn't fixed in time for my shower yesterday, they had me shower in the (empty) room next door. Haha, I was a little jealous of the windows next door... (I mean look at that beach!)... Haha, my room has birds on the windows. The beach is a lot nicer, but that's okay. At least I go...

Since My Birthday: Well, good news since the last post (when I was admitted at my last appointment, unfortunately on my 31st Birthday)! My port has been working since we used the de-clogging medicine. Whew! I was honestly wigging out about the idea of replacing it.  I posted a video describing more on my CF Facebook Page, Here ! So luckily since that worked we haven't had too many speed bumps. I hope I'm gaining weight. I know my breathing is a bit better. Not coughing all the time anymore. Only coughing with increased movement or activity. I had a bit of an asthma attack trying to shower & wash my hair. But, to be fair that it is a bit of struggle when you can't get your chest wet at all. I end up doing the hokey pokey in and out of the shower with arms, legs, etc. I wash my hair typically in the sink.So it takes time and some movement, etc. However, I'm more upset that I left my blow dryer at home, I have been frustrated that I can't dry my hair flat/strai...

All the Updates: Well, to update you from my Colistin problems last week. No, I never got my Colistin. They still couldn't give me an update. They said there was nobody there that I could talk to that would be able to solve it. They said they would contact me when it was fixed, that was on Monday. I wasn't going to hold my breath. I called Doc Monday and explained to him that Colistin sounds like it wasn't going to happen and I was just getting worse. He called Tuesday saying they could see me first thing on Wednesday. Wednesday (yesterday) was my 31st Birthday, BUT I just want to get better. Being healthy for Andrew, being a future mom (foster/adoption), and being around for family and friends is WAY more important than whether I have a "Good" Birthday. So I agreed. (I posted a Vlog on YouTube about it). I was frustrated to drive all the way up there (took 4.25 hours) then we'd have to drive another hour to the hospital if admitted. Getting up at 4:00 a...

My Struggles and Triumphs: I have some not so great news to share, but I dread just posting negative blog posts. So for every "Struggle" I will share a "Triumph" -  Struggles in RED, Triumphs in BLUE I was going to make a quick update video for my YouTube about all of this but I have lost my voice . So blog it will be...   However, I'm fortunate to have this blog and be an actual "voice" for the CF Community  --- Thanks to  my readers :-) As you read (or may need to click here to catch up) in my last post, I had my Cystic Fibrosis Clinic last week. Monday, I found out at the Doc's I dropped in lung function again (2x in 2016 already) . I'm down to 42%. Yipes! Since Colistin helped me bring it back to at least the low 50s last time , it should do the trick again ! Please take a minute to read about my struggle in January to get Colistin and why oral antibiotics no longer are an option for me and WHY get sick is getting harder to r...