A lot has been going on the past couple weeks, so I’ll spare you my usual ramblings and give some quick updates!
Has it been six months already? My old lungs were removed on the night of Jan. 15 and I woke up with new ones on the 16th. Thing is, they don’t really feel like “new lungs” anymore. The pain and discomfort has gone away, and CF already seems like a bad memory. They feel like “my lungs” now. I’ve already done so much with these lungs and I’m stoked to do even more. I will be traveling through New Mexico, Arizona, and Colorado in the first couple weeks of August. The best part is I’ll be seeing several old friends, meeting a relative, and hanging with Shelby (my sister). We are calling the August trip “Brad’s Victory Tour.”
A trophy for beating atrophy
I graduated! Again. This time from pulmonary rehab. My rehab instructor said I had the biggest improvement he’s ever seen—never thought I’d hear that I’m good at working out! Now I get to work out at a regular gym instead of at the gym of retired Olympic athletes. I went to Capitola after my last rehab visit to meet Kathleen’s family and hang out at the beach—which made for a nice celebration. At one point, Kristina was sitting across the beach. Feeling euphoric from my latest victory (and a good dose of coffee), I decided to run the length of the beach to meet her. I felt a bit like David Hasslehoff, minus the tan and bulging muscles. It was the longest run I’ve had outside the gym since my high school years. And dang, it felt good. Shout out to Kathleen for the celebratory photos!
Goodbye, Pickles and Tubbles
Pickles, my PICC line, and Tubbles, my feeding tube, are no longer necessities in my life. Hey, if you had pieces of rubber stuck in you for years, you’d name them too. Maybe. I had Pickles since last June (I used Chester, my port, before then—a total of 21 months of 3-5 IV doses a day) and Tubbles since 2010. They were good friends, sorta, but I shall not miss them. Pickles was removed from my arm a couple weeks ago. Tubbles will stick around for a couple months although I haven’t used him since last month.
The big-ish sick
I guess things have been going too smoothly lately! I finally had my first run-in with infection (which I consider to be quite extraordinary due to my crippled immune system). I woke up last Saturday with a fever and overall feels-like-I-got-hit-by-a-bus feelings. We went to the ER and spent 10 hours doing tests and receiving IV fluids (ironic that I needed an IV, since I got Pickles removed just days before). Somehow, the sickness went away really quickly, though! I feel better than fine today.
The next -plant
Got the transplant done, now it’s time for the implant. My cochlear implant surgery is scheduled for Aug. 31! Activation of the implants will be on Sept. 29. To say I’m excited is an understatement. I’ll definitely be blogging about the experience of being introduced to sounds again.
Speaking of deafness, I was asked by a transportation official over Twitter to suggest ways airports could better serve the deaf and hard-of-hearing. The person reached out to me after I mentioned how nervous I was to go through TSA while deaf, since officers can sometimes overreact if you don’t understand them. It’s cool to be able to use my experiences to provide practical ways others can help the hearing loss community.
I’ve also been given a new opportunity: to write a weekly column for Cystic Fibrosis News Today! It’ll be great to have a platform that speaks more directly to people with CF and their loved ones. More on that later, so keep an eye out for my first post!
Annnnd, on top of all that, I’ve created an Adamantium Joy Facebook page. The page will share blog posts from myself and others, as well as smaller “tid-bits”: informational posts about CF, deafness, and transplant; small updates; articles that I think will interest my audience; and hopefully some original videos I’m planning to create. Give it a “like”!
Very happy for you! I’m glad you have a lot going for you. It must feel great with no tubes connected to you! I described the feeling as “free” You will love the implant! Are you getting one cochlear to start off or two at the same time? Awesome pics, by the way!
Thank you!! I’ll be getting the Nucleus 7 and Kanso. Super lucky that the N7 is coming out right around the same time.
Wow, perfect timing! I just got the Nucleus 6 not too long ago. I’m not eligible for new ones yet. You’ll have to let me know how you like the Kanso. My audiologist was showing it to me, last time I saw her.
I will! I was kinda nervous to pick the Kanso too, but I’ve heard pretty good things about it.
I honestly did not like it. It’s bulky and I don’t like how it doesn’t rest on my ears. I feel like it would fall off very easily!
I was reading on an FB group about how a lot of people put a hat on top to help secure it and also hide it — apparently the hat doesn’t affect sound quality much! That surprised me. Hoping it’s true for me.
Hats work well for men, not women lol But, our hair does a good job hiding it!
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Hello Brad. I’m very happy to know you’re doing so well 🙂
I bet you must feel wonderful getting all the tubes removed! Looking forward to reading about your cochlear implant journey!
Best wishes to you Brad.