CF Happens

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

recent posts

  • 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…

  • “Are you feeling better yet,” “When will the IVs start working?”

    I’ve had people ask “how I’m feeling now that I started IVs,” “how long until the IVs start working” and “how long until I start feeling better” so I figured I’d make a blog post to help everyone to possibly understand how IVs work, for me.

    Unfortunately, for me IVs don’t work like magic like they used to. I’ve been using oral antibiotics for 44 years and IV antibiotics for 31 years so it’s a given that because the bugs in my lungs become resistant to the antibiotics over time. I’m very limited on what antibiotics I can use. I’m allergic to quite a few antibiotics, so those are out. I give a sputum sample at every CF clinic appointment. That sample is sent to the lab. It “cooks” for a little bit to see what bugs grow in my sputum. Then they test a bunch of antibiotics on what grows to see what antibiotics “should” work.

    I grow pseudomonas in my sputum currently and have for 30+ years. I have grown other bugs but they aren’t there at this time and haven’t been for a long time. With that said, antibiotics will never kill all the pseudomonas that lives in my lungs. CF causes thick sticky mucus therefore it holds onto anything and everything. My body produces the thick sticky mucus all the time, so I can never get rid of it all. So it’s just a vicious cycle.

    Now back to “when will I feel better,” that’s a good question. I have no idea. It’s just a wait and see kind of thing. Antibiotics never make feel great like they do for “normal healthy people” when they get sick. I wish it was that easy for me.

    Unfortunately, this is what life in “end stage CF” looks like. You eventually run out of options to treat exacerbations (being CF lung sick). When I say “end stage CF” I don’t mean I’m dying. “End stage” is the term when you are getting the end of the life of your lungs you were born with. When you are running out of treatment options (ie; antibiotics that work), getting lower lung function, lower quality of life, increase in frequency of lung infection exacerbations, need for oxygen, etc you are getting closer to needing a lung transplant, if that’s the route you chose to take. So no, I’m not dying, you’re stuck with me for a while longer. Haha

    I’m hoping that the pleurisy pain will be gone by about Sunday or Monday with the higher dose of prednisone on board. As far as the IV antibiotics go, I won’t feel a ton better just because they never make me feel a ton better. It is what it is. I’m used to it, it’s just a part of having CF. As long as the pleurisy pain is getting better, my cough is decreasing, my wheezing is getting better and I’m not achy anymore, I’ll stay the course of 14 days of IVs at home. If I’m no better at the end of next week, I’ll call my CF doctor to let him know so we can come up with plan B.

    I hope that helps explain that I don’t really have an answer to the question, “when will you feel better.” haha. I wish I did have an answer but I don’t. I just keep pushing every day. I’ll keep everyone updated as there are things to update. Thank you to everyone that has reached out to check on me. It is greatly appreciated.

    Until next time…