CF Happens

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

recent posts

  • Here’s the latest

    I saw the ENT (Ear Nose and Throat doctor) yesterday to check on the ol’ sinuses since MRI showed inflammation in my sinuses. A MRI is not the go to diagnostic test for sinus issues. A sinus CT is the correct test to really see what’s going on in the sinuses. The MRI was more of a “is there a random tumor hanging out in my brain that could be contributing to my headaches” and not for a look at my sinuses. There was no random tumor in my brain so that’s good. haha.

    Anywho, the ENT said my sinuses look really good. My last sinus surgery was in 2001. In that surgery they put “windows” in my cheek sinuses. “Windows” are basically drilling holes in the bottom of the sinus cavities to keep them draining and not holding gunk (bugs/bacteria) in them which causes problems. It’s weird to me that sinuses are just holes in your head that hold nasty stuff that cause pain and pressure. The ENT said that she could order a sinus CT to get a better look at the sinuses as a whole. I told her that I’ve been radiated a lot lately so I’m good with NOT doing the CT and just getting seen by her if/when I have an issue come up. She was good with that. Check that one off the list!

    My CF doctor called me today to get my permission for him to send my MRI scan images and medical records to a consulting Neurologist to get a more qualified reading than just the radiologist reading of my MRI. This will prevent me having to make an appointment with said Neurologist and have to wait 6 month to be seen. Of course I said “uhhh yes send all the things needed!”

    I saw my PCP today for a follow-up about my blood pressure since starting Losarten 25mg/day a few weeks ago. My BP has come down some but not down to where she would like it. She would like my top number to 130 or pretty darn close to it. On average, my top number has been around 138-145 maybe. She upped my dose of Losarten to 50mg/day. I’ll do that for a week and if it isn’t down, consistently, around 130 then I’ll up my dose to 75mg/day and do that for a week. If 75mg/day doesn’t do the trick then I’ll up it to 100mg/day, etc. She thinks 50mg/day will do the trick though.

    I have my nerve conduction test (EMG) next week. I’m hoping that I will get some answers about why my left thigh is STILL burning. As we know, my body doesn’t play by the rules or go by the books so who knows what I will find out. Fingers crossed!! I think that brings everything up to date. As usual, I’ll update when I have something to update about.

    Until next time…

  • 14 days of IVs complete…tomorrow morning that is!

    I forgot to update what my chest X-ray showed when I started IVs 14 days ago. It showed my usual chronic changes related to CF and bronciectasis with inflammation. One part of CF is the fibrosis which is the scaring in the lungs (and other organs as well) that happens from disease progression. Nothing new to note on the X-ray really which is good.

    My labs for the last 2 weeks have been good. Cefapime isn’t as harsh on the kidneys or liver like some antibiotics are.

    To answer the burning question of “are you feeling better?” Yes, I’m feeling much better than I was when I started IVs 14 days ago. The increase in dry cough that started from taking the lisinopril (blood pressure med) that then made the bugs that live in my lungs all the time mad, is much better!

    With the increase in cough came pulling muscles in my chest from coughing so much and so hard. Unfortunately, I do this often. Since you can’t take a break from breathing or coughing, to give your chest/lung muscles a break, you just brace where it hurts when you cough and hope for the best. Haha

    I did my overnight oxygen study Monday night (at home) to see if my oxygen was dropping at night which could be contributing to my headaches. Good news…I DO NOT need oxygen at night! My O2 sats were good. I’ve never really had problems with my sats even when I’m having a lot of trouble breathing. It’s more inflammation that makes getting the air in that is difficult. Supplemental oxygen won’t help that.

    With that said, my headaches are so much better since starting the blood pressure meds. I haven’t been having a headache every day all day which is so nice. I started losartan 25mg a few days after I stopped the lisinopril. My blood pressure has come down to around 138/88 ish (give or take) for the past few days. I see my PCP next week for a follow up on the blood pressure issue.

    With my husband having been an Air Force medic and still having his BP cuff and stethoscope, he’s been taking my BP daily. I told him that those medic/EMT certificates never expire when it comes to his sick wife. Haha. He takes great care of me and for that I’m so thankful.

    I had my MRI of my brain/head a few weeks ago to make sure we weren’t missing anything in regard to my daily headaches. Nothing big and alarming to note so that’s good. It showed inflammation in my sinuses which is nothing new. I’ve had multiple sinus surgeries over the years. CF can affect the sinuses. CF bugs can grow in the sinuses along with nasal polyps. The junk that grows in the sinus can then drain into the lungs and create many more infections and need for antibiotics. Lungs and sinuses have one tract from one to the other so it’s no surprise that they share bugs. With that said, I have an appointment scheduled with the ENT later this month to look around and make sure things look good in there. I’m NOT a fan of the “brain probe” but I gotta do what I gotta do.

    Fun fact…CF has been diagnosed in some cases after a patient saw an ENT for chronic sinus issues and having lots of nasal polyps. Doctors have said, “I’ve only seen these kind of polyps in CF patients.” Which then prompted a sweat test or genetic testing via bloodwork to rule out or diagnose CF.

    Lastly, I have my nerve conduction study/EMG on my left thigh scheduled at the beginning of July. I’m hoping for some answers on the thigh pain because yes, it still hurts.

    I think that covers all the things and it is enough if you ask me.

    Until next time…