Skip to main content

Happy Dance

Yay, I'm Pretty Happy! 

 You prolly (I always type prolly instead of probably, because that is how I always pronounce it) know that I had my Cystic Fibrosis Clinic today. Well, Doc B hates when I call it clinic (because its impersonal and he is proud of the fact he has a Private Practice for CF), but eh it's clinic in my mind. It's always a really long day when I have my appointment in the morning, since I have to get up at the crack of dawn to get all my morning meds done in time. I woke up at 5am and did my 4 nebulizers & vest. Shopping & lunch always follows doc appointments too... of course ;-)

Pic: So here I am getting ready. 

 I was a little nervous since I was in the hospital in January and was on IVs for 3 weeks (read about my Home IVs HERE), then got sick again in February & April and back on antibiotics (oral). I had no clue how my numbers would look. I've been working hard. BUT, with my lung function around 48% in January, 40% in February, then 56% in March, and back down to 50% on my birthday (that's right Doc appt & sick on my 30th bday), I had no CLUE where I would be today.

I've been feeling a lot better, more energy, slowly walking and doing more. So I'm building my endurance back up so I can exercise more. I've been working hard at eating more & keeping on top of all my meds. I've even been doing extra when I feel cruddy or wheezy. So I was hopeful. I wanted to be back to my baseline.

AND I was... I'm back to my average 55% lung function and my weight is even back up to 103 lbs. So I want to keep that up too!!!

Doc is super impressed I'm following up with GI doc to work out my stomach/ intestinal issues. Plus, I'm calling the Rheumatologist again (from 2013) to see how my blood work looks (long story). But, I need to know since my CFRA is getting worse (or whatever it is)!

I'm very much looking forward to this weekend. I'm celebrating my (rescheduled) birthday with some close family & friends ( my party is a mini CF Walk fundraiser). Plus, I'm getting my wedding dress altered and mom & I are doing some wedding errands! I'm putting up the CF Walk flyers around town & doing some CF Walk errands too!

Busy and productive weekend, but it's gonna be a fun one! And today was amazing, not only did I spend a great day with Uncle Brian & my mom, BUT I found out on I'm on the right track healthwise. Like I said in this previous post : it's like Babysteps) and it takes time! But I can do it, if I keep focused.

Doc B talked about new clinical trials I could do too, so I'll update more about that as I get the info!

So everyone do a happy dance, because even though I still have a lot of work ahead of me, I'm heading the right direction!

Oh and HAPPY EARTH DAY
(from a past Geology Major)!


Labels:

Comments

Post a Comment

Popular posts from this blog

First blog: Hello

My first Blog: A little About Me I'm not sure why I have decided to start a blog, however, here I am.  I have honestly thought about writing about my life for years, but have always chickened out. I have finally decided to share the experiences life has thrown at me. The biggest reason I have been asked to blog by people is because of everything I have dealt with medically. I have Cystic Fibrosis and a few other medical problems...This is probably the best reason why I should blog. I can relate to others who are dealing with medical problems, however,my CF is also why I did not want to write this blog. CF can be embarssing and annoying sometimes... but it  has helped define who I have become to be as a person. Therefore, (yes, even though I want it cured) I don't hate having CF. Let me start off with some basic info and statements. I'm 26 yrs old and have dealt with CF all my life. In this blog you will hear recent stories (good, bad, embarassing); a...
Read more

Holding Down the Fort

My husband, Andrew, is currently at Wartburg Theological Seminary and is starting his first week of his second year there. Every year he lives on campus for one week. He enjoys starting each semester on campus where he can build friendships with other students and professors. It's the only time he is on campus. Usually he does long-distance learning, online, from home. It was the only way we could manage him doing a four year Master degree program while working. This week is the hardest for us. However, we have something on Thursday and Friday this week, so Andrew will only be gone 3 days instead of the typical full five. So that will make this week a bit easier than the other semesters. It's hard for Andrew to be away, although I know he is having a blast. We send random pictures back and forth like a book he may be reading or a game I may be playing with our kiddo. It is hard for the kid(s) to not see Andrew every day. We are foster parents and stability is a BIG issue for ...
2 comments
Read more

Close to a Cure?!?!?! and Thank You!!!!!!!!

Help Us Find A Cure & Thank you! Lots of new meds and treatments are being researched thanks to the CF Foundation and the people who support it! Thank you soooo much everyone for supporting me and the CF GreatStrides Walks! I hope you enjoy hearing about the cool new ways steps are being taken towards finding a cure for CF and how everyone has helped me and us (the cf community)! New Treatments And Break Throughs: As you may know, from reading my last couple blogs. Some exciting news was released!  VX-809 + Kayldeco Phase 3 (6 month clinical trials) has started! Which means if all goes well, this could be on the market in the next year or two. This drug helps target the actual faulty gene. It will help improve our lung function (hopefully gain some back, the part that isn't damaged) and will help us to slow the decline of our lungs health tremendously! This is the treatment for my mutations!To read more about this new treatment click Here! Also, there are other medic...
Post a Comment
Read more