CF Happens

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

recent posts

  • Back Surgery is Scheduled!!

    First let me quickly tell you how home IVs went. Thankfully the pleurisy pain is gone! I asked to extend IVs one more week just to make sure I was as good as I could be. I finished 21 days of IVs on Tuesday the 29th. I’m feeling better lung wise. I’m basically back to my baseline which means my normal.

    Now on to the surgery date…my surgery is scheduled for Monday, January 13th. I won’t know a surgery time until at least the Friday before because they schedule his surgeries according to what cases he has that day. I will start IVs at home 14 days before my surgery so that I have good round of antibiotics in me leading up to surgery. I won’t need to be admitted before my surgery. I’ll just show up to the hospital for surgery and be admitted after surgery.

    Like I said in a previous post, I won’t know how long I’ll be in the hospital until after surgery. It all depends on needing a drain in my back and how my recovery is going. Fingers crossed that it all goes smoothly and there’s not too many bumps in the road.

    I’m ready to evict “Pete the peanut.” This lower back pain, hip pain and thigh pain is for the birds. 10/10 would not recommend having a schwannoma (nerve sheath tumor). If you aren’t up to date on “Pete,” I named my tumor “Pete” because he’s the size of a peanut (about 2cm in diameter) so “Pete the peanut” was “born.” haha

    I had the MRI of my cervical spine and thoracic spine to check for other tumors. There are no other tumors!! I think that sums up the latest.

    Until next time…

  • Neurosurgeon Appointment Update!

    I saw the neurosurgeon this morning. The tumor in my L2-L3 appears to be a schwannoma. A schwannoma is a benign (non-cancerous) tumor that develops in the nerve sheath, the membrane that insulates and covers nerve cells. Schwannomas are made up of Schwann cells, which produce the myelin sheath that insulates nerves. The tumor will be sent off for pathology after surgery to verify that it is in fact benign (non-cancerous) as with any tumor/mass that is removed. He said that the tumor has been there for a while but has obviously grown enough to protrude out of its happy place that it was in and is now causing the pain/nerve issues.

    The tumor is inside the spinal area. They will flip me over, face down, to do the surgery and go through my back. He will have to open up the spinal area to take the tumor out. He’s pretty sure he will have to put a patch (cow heart lining) on the area where he removes it from to seal it up so that spinal fluid doesn’t leak. If I DO need a drain I will be in the ICU for about a week after surgery. If I DO NOT need a drain, he thinks I would possibly be inpatient for a few days after surgery. He, obviously, won’t know what’s needed until he gets in there and starts removing it.

    He wants a MRI (with and without contrast) of all of my spine, cervical and thoracic, to make sure there aren’t other schwannoma tumors lingering. It’s not unheard of to have more than one but it’s not a given that there will be more. That MRI will be scheduled in the next few weeks. No matter the results of that MRI, we will move forward with removing the tumor in my L2-L3 that is causing the issues (lower back pain and thigh numbness/pain) right now. They will call me with the results of the new MRI when he has them. If anything shows up on the MRI we will address them with another appointment.

    I asked if it was ok to hold off on surgery until the first of the year because we are going on a trip in November and we also have family visiting for 2 weeks in December. He said that’s ok. It does need to be removed because if it’s not removed it will start causing more problems and be a more invasive spinal surgery. It’s not a rapidly growing tumor so there’s not a rush in that sense.

    The neurosurgeons nurse is calling my CF doctor to get a verbal clearance for me to have surgery in January. Once she gets the clearance she will call me to get a surgery date on the books.

    No, I’m not nervous about surgery. It’s not going to be an easy journey but it’s necessary to “fix” the problem. No, I’m not surprised that the surgery could more complicated/invasive. My body never goes by the books. I’m used to being a difficult patient in that sense. I just keep pushing forward. I do what needs to be done. It’s my life. I’m used to it. It’s nothing new for me. I’ll update when I have a surgery date and results from the new cervical and thoracic MRI.

    Until next time…