CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

recent posts

  • I Got Paroled From Lockup (aka the hospital) Yesterday!!

    I signed my parole papers around 5pm yesterday. Unfortunately, Walgreens took longer than usual to fill my pain meds and muscle relaxer. I didn’t get to take another dose of pain meds until 9pm. I had to play a bit of catch up to get the pain under control again and a bit more tolerable. It is very hard to find a comfortable position to sit or lay in. Obviously, I can’t lay all the way flat because I will cough a lot AND it will take a lot of core muscles to get back upright. You don’t realize how much you use and rely on your back core muscles to move and lift yourself until your back is cut open. haha Every position feels like it’s pulling on my incision which of course hurts. Obviously, they had to cut through muscles to get where they needed to go. With that said, my back muscles are pretty pissed off right now. My incision is about 4 inches long and is smack dab in the middle of my tattoo. It may no longer say “Never Give Up.” We shall see once it’s healed. haha.

    Being restricted from “BLT” as my aunt calls it in her occupational therapist world is hard. “BLT” stands for Bending, Lifting and Twisting. For instance, when I drop something I can’t just bend over and pick it up. When I need something that is in a drawer below my waist, I have to ask someone to get it. This whole relying on someone to do simple things for me is hard and it’s only the beginning.

    My restrictions are as follows…no BLT (bending, lifting (more than a gallon of milk), twisting) for 6 weeks. No running, jumping or impact exercises for 3 months. But let’s be honest, I NEVER run or do impact exercises so I’m good there. haha. No driving for 2 weeks and obviously no driving if I’m still taking narcotics for pain control. They said If I feel comfortable enough, strong enough and I’m not taking pain meds I can drive before the 2 weeks are up. I have a follow up appointment with the neurosurgeon 6 weeks from surgery day, which is February 24th.

    My last day of IV antibiotics is Wednesday the 22nd. My left thigh is still VERY numb and the area of numbness is larger than it was before surgery. I’m hoping some of the numbness goes away. I will most likely have some lasting numbness in my left thigh regardless just from nerve damage that was done. The numbness is hard to explain because it doesn’t necessarily hurt per se, it’s just uncomfortable and feels weird.

    Thanks to my sister for helping me shower today for the first time since surgery. I feel a little more human, a hurting human but more human nonetheless. I think that covers everything so far. I’ll update again when there’s something to update about.

    Until next time…

  • Schwannoma Removal Surgery is Complete!!

    Yesterday was my back surgery to remove the nerve sheath tumor (called a schwannoma) in my L2-L3 area in my lower back. As you know, I named the tumor “Pete” because he was the size of a single (out of the shell) peanut and “Pete the Peanut” just sounded good and rolled right off my tongue. Haha.

    The surgical case before me cancelled so I was able to get everything going a few hours early. Surgery took around 3 hours. I was in recovery a little longer than I could have been. We had to work on getting my pain under control before moving me to my room.

    The surgery didn’t end up being as invasive as my surgeon had anticipated. I did NOT end up needing a drain, which is a good thing.

    I am on a neuro surgery recovery floor and not the CF floor. This makes getting all of my normal CF inhaled meds challenging because the RTs (Respiratory Therapist) that come to this floor are not the typical CF patient RTs. This means telling multiple people the same thing as far as what I need, when I need it and how I need it.

    SIDE NOTE: You MUST advocate for yourself when things like this happen. This is also why knowing the names of what meds you take, why you take them, the correct dosages and when you take them is SO IMPORTANT!! I’m very surprised that there are so many people that have no idea of all the meds they take and why they are taking them. Please educate yourself!!

    Now back to surgery update stuff. Haha My surgeon told Jason that he’s anticipating me being inpatient for 2 days. Obviously, that depends on how I’m doing in general. 🤞🏼🤞🏼 Fingers crossed that it is in fact only a 2 day stay.!

    I’m not able to do the vest as airway clearance at the moment so I’m using the tried and true method of “huff coughing” to help shake things up. Huff coughing is basically when you push all your air out of your lungs and then cough cough cough! With that said…coughing hurts so much right now but I can’t not cough, I have CF, duh. Haha.

    With me not being on the CF floor that means that I was admitted under neurosurgery. The internal medicine (floor doc) is also following me, as well as the inpatient pulmonary crew. My CF doctor has final say as far as lung stuff goes though.

    My left thigh is more numb than it has been before surgery and the numbness coverts more of the thigh surface. Obviously, the surgery really ticked off the nerves in the area that the tumor was removed. The area where my tumor was removed (L2-L3) sends feeling/sensation to the front of the thighs. I’m hoping some of the numbness goes away. I won’t be surprised if some numbness stays just from general nerve damage that’s been done.

    I will have a repeat lower lumbar MRI in the next few weeks to ensure all of the tumor was removed. They are sending the tumor to pathology to make sure it’s not cancerous, which is normal protocol.

    So long story short…surgery went well and it wasn’t as invasive as my surgeon thought it could have been. Now it’s time to heal. I’m in a lot of pain in my mid to lower back and left thigh. Yes, I’m taking pain meds and I’m staying on top of them to keep me covered. I’ll update again when I get settled at home, whenever that may be.

    Until next time…