This is pretty long, so I sub-headed it for those of you who don’t like reading and just want to skip to a part 🙂 You’re welcome, lazy people! (But you will miss all my fantastic Easter egg GIFs/pictures/videos if you don’t read. Do you really want to take that chance?)
In the last few months I’ve been trying a million new things in an effort to rescue my lung function:
- I started taking supplements.
- I now have a respiratory therapist who comes to my house 3 times a week.
- I do my breathing treatments 4 times a day instead of two.
- I’m exercising 2 hours a day instead of the measly 15 minutes that I thought I was only capable of.
- I got a new Vest this week!!
- I decided to go back home to Pittsburgh to get a second opinion about fixing my lungs as well as to meet their transplant team, because I decided to have it done there instead of Tampa (in 15 years).
- 999,994 other new things
My doctors finally cut me off from Prednisone steroids (waaaah) so it left me looking for something similar that could give me the same effect. After some research, I found out that the Turmeric I was already taking was actually an awesome anti-inflammatory that had similar effects to Prednisone. I quadrupled the dosage (which is still within the recommended amount) and it actually makes a difference. Prednisone is like taking magical rainbow unicorn potion, so it’s hard to measure up to that, but Turmeric at least helps the inflammation in my lungs.
I also threw in some Omega 3 Krill Oil and Ginseng for shits and giggles, but I can’t really tell that they make a difference with anything. If anyone with CF reading this takes something natural that you feel makes a difference please let me know!
My respiratory therapist just suggested drinking a ton of lemon water to help with a more productive cough (the polite, girly way to say “bring up more mucus”). That’s next on my list to try.
My doctors begged me to try working with a respiratory therapist and since I’m game for just about anything right now, I said ok. Now, Ana comes over my house for an hour on Mondays, Wednesdays and Fridays to beat the crap out of me – literally. For this therapy, she cups her hands and beats on my back, sides and chest for about an hour. I ended up with some sweet bruises and broken blood vessels the first time, which left me looking like someone gave me hickies in super awkward spots and then punched me afterward. I must be in a weird relationship.
Ana’s really sweet, but so far I hate it and can’t tell a difference. Everyone swears it’s so much better than doing the Vest or Flutter, though, so I’m hanging in there for final judgement.
Breathing Treatments and NEW VEST!!
Growing up, and even later in college, I actually only needed to do my breathing treatments once a day and most of the time I had no problem when I even skipped them. Now, I started doing them 4 times a day out of necessity.
I’m pretty stoked I got a new Vest this week though! I read about it on another CFers blog and it’s supposed to work better than the original. Something fancy about how it goes through different cycles and has a different “waveform pulse” than other Vests. The verdict isn’t out yet on this, but I think I like it so far.
I’ve obviously had an excruciatingly difficult time breathing for the past year, so when I exercised it was usually only 10-20 minutes, 3-4 times a week. It sounds crazy but even 10 minutes was extremely hard.
My two CF doctors I see on a regular basis never really said anything about the 10-20 minutes, so that’s what I kept doing until, on my most recent visit, I saw the chief pulmonologist and he just blatantly told me that wasn’t nearly enough and I needed to amp it up to around 40 minutes everyday. This coincidentally happened to be the appointment my roommate went to with me so he also encouraged me to follow through with everything that was discussed that day.
Now, I aim for 2 hours every day. I usually take a few 30-minute walks (one always along the beach to make my soul smile), ride my bike or jump on the elliptical. It’s extremely difficult but, once again, I’m determined and willing to try anything. Sometimes I even question if 2 hours is enough.
The Grand Finale – Going to Pittsburgh
I finally decided when the time comes that I’m going to do my transplant in Pittsburgh (if they’ll take me).
- They’re one of the best lung transplant centers in the U.S.
- They take complicated cases like mine (growing Cepacia makes it high risk)
- My mom and dad won’t have to leave home to come take care of me for months.
- I’ll have my family and best friends in the entire world near me.
- Bailey will get to experience snow and I guarantee she’ll love it
The huge downside is I’ll have to live there for probably around 2 years (2 very, very cold northern years)- approximately 1 year to be on the list and then 1 year afterward for recovery and all follow-up appointments. The other downfall is being 27 years old and having to tell people I live in my parents’ basement (kidding, kidding – love you guys!).
I was extremely depressed about thinking of leaving the ocean and my life in Florida to live in a super small, dying suburb of Pittsburgh (sorry to everyone I just offended), but then I actually got excited thinking about being able to see and hang out with my best friends again.
Soooo all-in-all things are looking up right now and I’m feeling pretty good about everything. I still just need to get past this head cold and get this PICC line out so I can do yoga again 🙂
P.S. Watch this Living Extreme video about CFers pushing their limits in sports. Pretty spectacular and encouraging for my plans to run a 5k in December!