Skip to main content

Updates Galore!

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 number of people come (even though they RSVPed). That being said, those who did come I think did learn quite a bit and enjoyed it. Plus, more cookies for them. lol

I did record it (but my phone kept stopping, so I had to restart it and it got a little jumpy). However, I will be posting that to Youtube tonight! I have been so busy with work, licensing stuff, plus now is the crunch planning time for the CF Foundation "Suzanna Lee Memorial Golf Outing," one of Peoria's biggest CF Fundraisers of the year! Suzanna went to my clinic growing up and her parents started the event in her memory 15 years ago! So this year is the 15th year, WOW. Way to go!

The BIGGEST update: I got my Colistin!!! Finally! I have had it before (in fact I got it for a month in 2015, and then just a couple months ago in 2016 too). But since March they have been having trouble filling it. So I have that, I believe I will be starting that after this round of Cayston.

Also, in the next 8 days I have TWO great strides walks. So that is beyond exciting. I LOVE going to the walks! Who doesn't want to spend a day walking and talking with good friends, while raising funds for the CFF!

So lots going on, I'm just trying to keep on top of my health too! So far it has been okay, but I know I need to get more active. Going to go for a walk today with my sister (as long as it doesnt rain).

Keep your eye on my Facebook/ YouTube page tonight, the video should be up then!

Labels:

Comments

Post a Comment

Popular posts from this blog

Today's BIG Appointment

 I discussed last week about my recent struggles & goals. I have been dealing with a lot all at once! Family planning (update on that in 2 weeks), my Grandma's funeral, lower lung function. Through it all I have remained very compliant with my meds! My health is VERY important to me. So this last weekend I took my vest machine, wabi sterilizer system , and packs of ensure to my parent's for the weekend. I wanted to make sure I did everything. While it was a sad occasion, it was still pleasant seeing almost all of the family together again. Actually 27 out of 29 of the cousins made it to the funeral. Grandpa is in the middle of the picture (can you find me?) LOL   On top of my medications I have been doing some dancing & walking, but no jogging or anything. I'm still counting calories on my fitbit (hitting over 3000) a day (& 40 grams of protein, 50 grams of fat at least). I knew I was feeling a bit better than before, but wasn't sure what to expec...
18 comments
Read more

My Clinical Trial Mess

A Clinical Trial Mess: Monday, I had an appointment for a clinical trial evaluation. Let me start out by saying, I always get  amazing care at my doctors...HOWEVER, this evaluation was done by a third party brought in to handle the research. The research nurse was a flibberty jibbet. She was nice, but kept just re-organizing her supplies, like she didn't know what to do. She seemed nervous. She mentioned she usually had another nurse with her. She took my weight, height, urine test, pre-med spirometry test (PFT-pulmonary function test) Next she decided to draw the blood, while waiting for the pft results to print. She got out the supplies and the sterile paper that she places it all on. She dropped te paper on the floor and proceeded to place the packaged needles and supplies on it.... So in my head I tell myself "Okay...( inhale control exhale my germfreak...) it's okay, it won't kill me..it only touches the bottom of my arm, not the actual place that she is dra...
6 comments
Read more

End of Summer -Updates!

Wow, I can't believe it's been a year since we moved our blog to www.MoreThanDNA.org! A lot has happened in that year. My husband and I became Foster Parents to some amazing kiddos and still have one of those kiddos living with us. We have loved having "Shoes" with us and can't believe how much he has grown and learned in the year!I'm so proud of him! We have court next week, so prayers that it goes okay (and doesn't get continued again- that just drags it out longer for the kids). He is now 39 months old and starting Pre-K this month! Other big changes include: Some renovation to our home (complete Bath rehab & updated plumbing throughout), I started a new gene-targeting medication (symdeko) that is helping to keep me stable these last 3 months, and I got an AffloVest! I'm loving my new portable vest! Also, career wise...we both switched jobs! Andrew also started Seminary this summer to get a Masters Degree in Divinity. He has always wanted to be ...
6 comments
Read more