Friday, October 30, 2015

Waiting for a port flush

Ahh Friday, how I enjoy you. I don't have classes or practicum on Fridays this semester, so those are my days to rest, recover, and rejuvenate. I'm getting quite used to my three day weekend every weekend. This Friday, I am supposed to be getting my monthly port flush out of the way. However, I have no idea what time the home health nurse will be arriving at my apartment. She called me yesterday to say she had a busy day and would text me about an hour before she arrived, so at least I get a little bit of notice. Yet I feel like I have to stay home all day, waiting for her text. I don't want to be far from my apartment and then have to rush home or stop running errands so I can be back in time, and I need at least 30 minutes to let the numbing cream work before the nurse arrives to access my port. I've been doing homework and went to my apartment's gym to work out, but now, I'm just waiting to get on with my day. Waiting for the text that says she'll be at my apartment in an hour. Waiting to know how I should plan the rest of my day. I love home health, don't get me wrong. I'm so appreciative that I don't have to go up to the hospital and that someone comes to my apartment to take care of my medical needs. However, one of the problems with home health is that most people who use it are not capable to live a "normal" life. The patients often don't have busy days, and the home health nurse can come whenever it works best for her. I am not the typical home health patient.

Hopefully she will text me soon. For now, I'll be waiting...and waiting...and waiting.

Monday, October 19, 2015


Hello blogging world!

It's been far too long. My fingers have been itching to write again, but I've been so busy lately, my writing has been pushed to the side. Hopefully I can regain a little bit of balance in my life and begin to write again more frequently.

So to recap my life: In May, I graduated from Baylor with a degree in communication sciences and disorders--speech pathology, a minor in linguistics, BIC honors credit, and highest academic honors. In August, I started graduate school at the University of Texas at Dallas. UTD has one of the best speech pathology programs in the country, and I am truly blessed to be here. I've learned so much in my last 2 months as a grad student! I love my classes and my practicum experiences, and I'm so excited to see how my journey through grad school unfolds.

Unfortunately, this semester my health has been a little rocky. My lungs were doing excellently--my PFTs were stable, I was set to participate in one of the upcoming vertex studies, and I was able to breathe about as well as I have in awhile. However, I got a cold in September that took a hard hit to my lungs. My PFTs dropped to 45%, a number I've never been close to seeing before. And honestly, I was scared. I was scared my health was taking a turn for the worse and it would be extremely difficult to get back on track. I was scared I was going to get behind in grad school and not be able to catch up. I was scared my short streak of decent health was gone. I was scared that I wouldn't be able to be in the vertex study. My doctor put me on three weeks of oral antibiotics with instructions to see her back at the end of those three weeks (which ends this coming Wednesday). Unfortunately, I can't say I'm back to baseline. I'm still short of breath at times and have a more frequent cough, but I am significantly better than 3 weeks ago. Hopefully that will show at the doctor on Thursday!

Also big changes: I've moved to a new city for grad school and changed CF doctors. While I loved the Austin center, that's way too far to drive for CF appointments, and I know I need a doctor close by. I love my doctor here, and the adult clinic is quite impressive. My doctor has made several changes to my CF regimen, so we're still experimenting to see what's best! When I went to the cf doctor in Austin, my mom always went with me to appointments. The social worker tried to get me to go to appointments by myself to "develop independence", but quite frankly I was plenty independent and just wanted my mom there to help me manage this gigantic disease and be my extra set of ears. Now that I'm in Dallas and she's not, I go to appointments by myself. It's definitely different. I usually have to end up emailing the nurse some follow-up questions I forgot to ask in my appointment. But I'm learning, slowly but surely. And I'm still so grateful whenever my mom does come up for occasional clinic visits to help me out!!

Enough procrastinating, I have a huge test I need to study for. Hopefully I will get back more consistent blogging about cf, my life, and my ideas and perspectives! Have a great Monday evening.