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Showing posts from November, 2016

Frustation with Hospital Doctors

Today marks day thirteen in the hospital. I'm torn on how I feel about this whole hospital stay. I do understand the necessity of my being in the hospital this time. There are times I can do IVs at home and manage on my own. Usually that is when I only decreased a little in lung function and we feel confident I can boost my numbers on my own.  But with a drop in lung function from 60% to 40% I know I can not do it on my own and I fully supported my CF doctors decision to admitt me.. (Read about why Orkambi has been rough so far HERE ) Since being admitted on the 14th of November, I have been feeling a little better. No more fevers, coughing/asthma attacks, better energy and mood., but my lung function isn't better. My biggest problem with this hospital stay has been the hospital doctors (not my CF doctors, but the general doctors that are put on my case). I have had to remind them more than once to wear isolation outfits when they come in (including masks). Here are a few c

Orkambi & the Hospital

I haven't really felt up to blogging or doing anything since I got sick. I have been having a few breathing problems and more asthma attacks the last two weeks. I had my regular Cystic Fibrosis Clinic check up on Tuesday of last week. I knew it wouldn't be great, but I had no idea how bad it really was... At clinic we found out my lung function dropped majorly from my "baseline" of 58% to around 38%.  My Respiratory therapist responded "Dang, that's transplant range, we gotta get those numbers up." It's scary to think one sickness, one medication and my lung function can go from 58% to 30s. Where I struggle to breathe and could be listed for a transplant. But I have faith, hope, and trust. This is why. My doctor(s) at the CF Center are very proactive! My doctor told me I had a couple options: 1. be admitted 2. Stop Orkambi 3. Keep doing Orkambi, but switch up some of my meds at home and call in a few days for update Of course... I decided

"Do not send me to my grave"

I do not post a lot online about Politics, especially on my blog. I believe everyone has a right to vote for who they want (the whole point of Democracy). While I think my candidate is always the best choice, so does everyone else. I always hope voters educate themselves about the people running and understand what their platforms mean. I am breaking my usual silence on politics in the post, because I also believe in freedom of speech. I'm do not write this to bash one person and praise another. It is more to have a place to speak my mind on our current situation in America. I have a lot of worries about Donald Trump being America's President-elect. Besides his hatred for people of other nationalities, color, religion, sexual orientation, etc. Since this blog is focused on sharing my life with Cystic Fibrosis with the world, I will  focus my biggest concern. My title "Do not send me to my grave" explains my fear for my life with Donald Trump becoming President. My