CF Happens

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

recent posts

  • My Lungs Are Major A$$holes (As I lovingly Call Them)

    DISCLAIMER: This ended up being a longer post than I anticipated. I elaborated on quite a bit of things, threw in some educational stuff and answered some questions that I’m commonly asked.

    Welp, I caved and asked my CF doctor for prednisone. You know my asthma is really bothering me if I’m asking for prednisone. Ugh. Me taking prednisone isn’t ideal in the big picture.

    One of the nurse practitioners (NP) called in the prednisone. My doctor may be off for spring break with his kids. It never fails that he’s gone when I need him..

    Unfortunately, prednisone doesn’t work the wonders it once did and it takes much higher doses and a much longer taper than it used it, if it works at all.

    I’ve tried to push through it but I can’t do it anymore. My lungs are very tight and breathing treatments are not giving me any relief. I’m unable to do simple things like walking across the house from one side to the other without getting out of breath. Therefore, doing any house chores, or much of anything really, is ridiculous.

    I also did my home spirometry and my FEV1 is down to 27% which I very much expected.

    Unfortunately, on top of CF I have really bad asthma AND bronchiectasis. The “cystic” part of CF refers to the formation of cysts in the lungs (as well as the pancreas). The “fibrosis” part of CF refers to the scarring and thickening of tissue in the lungs (as well as the pancreas). Asthma causes airway inflammation and narrowing, while bronchiectasis involves permanent damage and abnormal widening (dilation) of the airways. Bronchiectasis is irreversible because the damage to the airways is permanent. I always say that it seems very counterproductive having all of that going on in these little ol’ lungs of mine. Below I added a graphic showing the difference in symptoms for asthma and bronchiectasis.

    I basically have bronchiectasis because of CF from repeat lung infections. Bronchiectasis makes it really hard to clear the thick mucus that my CF body produces constantly. Since I’m not able to clear the thick mucus it sits in my lungs and breeds infection. Thanks to CF, I grow pseudomonas ariginosa in my lungs all the time. There’s no way to ever clear my lungs of all the mucus therefore I’m unable to rid my lungs of pseudomonas.

    Many people ask me if the doctors can just go in and suck it out (a bronchoscope). I sure wish! Unfortunately, that’s not an option. My body is constantly producing more mucus so it would be a never ending process. The times I have had a bronchoscope, it really pissed off my lungs causing major bronchospasms which is when the muscles that line the lungs’ airways tighten and make breathing difficult. I get bronchospasms with some of the allergic/adverse reactions to different medicines I’ve taken as well.

    When I had my first bronch back in 2008, I needed to be intubated at the end of it and be on the ventilator for about 12 hours. Putting me on the vent was to try and get my lungs to calm down enough from the bronch that really pissed off my lungs.

    Yes, I was asleep during the bronch so I didn’t know I was being put on the vent at the time. I became slightly aware I was on the vent while I was still intubated in my ICU room because they had lightened my sedation a bit and I started to thrash around, “like a bucking bronco” according to my mom I tried to pull the vent tube out that was in my throat. Oopsie. I was then put in restraints around my wrists and they upped my sedation a bit to calm me down. They gave me a pen and paper so I could answer my mom and my husband’s questions. I told them to take lots of pictures (of me on the vent) because obviously I wouldn’t remember it. So me! haha

    Not knowing that being put on the vent was a possibility after the bronch (if my lungs weren’t behaving) made coming off the vent traumatic in a sense. When it was time to take me off the vent they stopped my sedation to wake me up and that’s when I really understood that I was on the vent. Even though I was being my silly self asking for pictures to be taken while I was sedated and on the vent, being truly aware of what was going on was scary and freaked me out, just a tad. I’m the type of person that wants to be told what all the possible outcomes are and what to expect…the good, the bad and the ugly. My doctor failed to let me in on his little secret that me being put on the vent was a possibility. Not cool doc, not cool at all. Had I known being on the vent was a possibility, I could have mentally prepared myself. My husband failed to let me know that he thought it would be a possibility as well. Thanks for the heads up. Rude!

    Time came for the tube to be pulled (extubation)…the RT (respiratory therapist) took his sweet time getting set up to pull my tube and suctioning out any secretions (aka mucus) in my vent tube, which he didn’t do a great job because the amount of mucus that came out with my tube was a lot. My husband, who was a trauma medic in the Air Force at the time, later told me he was about to shove the RT aside and pull my tube himself because he could see how scared and uncomfortable I was and the RT was being so slow.

    With that said, for obvious reasons, I’m not a huge fan of bronchoscopies and only want them on a “must do” basis. I’ve had 3 or 4 more bronchs since my first one but did not need to be put on the vent for any other bronchs.

    I’m hoping I can get some relief because I’m kinda miserable with the whole not breathing able to breathe well.

    Until next time…

  • That Struck A Nerve…(And A Lung Update)

    Well hello y’all…here I am again to give an update on my stubborn body. My body is very complicated and body that likes to throw curve balls all the time. I make my doctors use their degrees to the fullest extent! Buckle up…

    I have been dealing with my hands going numb, mostly at night, for over a year probably. It has gotten much worse in the last few months. I wake up multiple times a night with my hands throbbing in pain. I then have to sit up, most of the time stand up, and let my arms hang down until the throbbing stops enough to be able to lay back down. Rinse and repeat ALL night long. I already get up multiple times a night to pee, thanks to taking blood pressure meds and simply being 45 and premenopausal. haha

    Once I’m up and moving in the morning, my hands are much less numb, although it takes some time. In the morning, grabbing a cup and holding my morning pills takes patience. Also, when I squeeze my breathing treatment meds into my neb cups, it’s uncomfortable.

    I saw my primary doctor today about the hand numbness. I’ve had enough of it and need sleep! We decided that I would try the nerve pain medicine, Lyrica. I have avoided taking all nerve pain meds so far, even with having the nerve sheath tumor in my back that was ultimately removed, obviously. This numbness and throbbing pain in my hands is very uncomfortable and hurts. I’m now willing to see if the nerve pain med helps because I’m pretty miserable at night.

    If the Lyrica doesn’t help, we’ll start with finding the source of the hand numbness and throbbing pain. The first step will be a nerve conduction study and an EMG. The nerve conduction study and EMG that I had for my left thigh numbness and pain was very uncomfortable.

    Now to answer common questions I have gotten about the hand numbness:

    No, it is not carpal tunnel. This is most likely from something being compressed in my neck. It is ONLY my hands that go numb, not my arms and shoulders. The neurosurgeon that did my back surgery already did a cervical and thoracic (neck and upper back) MRI to check for more nerve sheath tumors before my back surgery, around October of last year. There were NO other tumors. So no, it is not another tumor causing issues and nothing to do with my back surgery. There was nothing alarming on those MRI scans. This has NOTHING to do with me having CF. Except for the fact that I’m just rare in general. Just like the genetic disease, cystic fibrosis (CF), duh. haha. I think that covers the questions I’ve already gotten from friends and family.

    QUICK LUNG STATUS/UPDATE: I’m finally on the tail end of whatever virus it was that tried to take me out. My asthma has been quite the butthead the last few days. I’m super tight and breathing treatments really don’t give me any relief. Also, the last few days I have been getting out of breath super easy with little activity. Much easier than my liking, but that’s a given. I’m letting it be for now and not asking for anything like antibiotics and/or prednisone. I’m trying to give my body a break and time to really get over whatever this virus is/was. Thankfully my pulled chest muscle is much better. Every once in a while, if I lean a certain way while sitting, I still feel a rubbing/popping where the pulled muscle is/was. That’s a lot of fun…NOT.

    SIDE NOTE: my blood pressure was high at both of my doctor appointments today, yearly gyno appointment this morning and primary doctor this afternoon. We are going to get back to checking my BP regularly at home again. I got away from checking it once it finally got lowered and stayed steady with the 2 BP meds. It’s probably elevated for a few reasons. One, being that I’m so out of breath. My heart is working a little harder pumping to compensate for my crappy lungs. They always check my BP right when we get into the exam room after I just walked back to the room. Secondly, pain can cause your BP to go higher. Ok, I think that sums everything up. haha

    Until next time…