CF Happens

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

recent posts

  • Hello IVs…It’s not been long enough

    I received an unwanted wedding anniversary gift today, such is life with CF. I’ll back up to fill you in.

    I started the lisinopril (blood pressure med) at my last CF clinic appointment 2 weeks ago. I followed up with my primary care doctor regarding my elevated BP issues last Wednesday. She upped my dose of lisinopril from 10mg to 20mg. A dry hacky cough is a very common side effect of lisinopril and of course I got that side effect. It increased when we increased my dose. This brings me to Sunday night. I was coughing all night and tried sleeping sitting up on the couch to see if it would help me stop coughing as much. No such luck.

    Monday I slept off and on all day because I was so sore and worn out from coughing. I had also pulled some chest muscles from coughing so hard. I was also running slight fevers off and on that would break with Tylenol. I didn’t take the lisinopril Monday through today (Wednesday). My primary doctor was of course ok with me not continuing it. She changed my BP med to Losartan 25mg. I’ll be starting that tomorrow morning.

    Now to the reason home IVs are back in the picture. I had a sick appointment with one of the nurse practitioners in the CF clinic today. My thoughts are that all the coughing I was doing because of the lisinopril aggravated my CF bugs (pseudomonas) that live in my lungs all the time. They were like, “hey, you didn’t forget about us did you!?”

    My lung functions were .80L/29%. Not to shabby considering the lung pain I have at the moment. She initially suggested oral antibiotics and a prednisone taper. I had to let her know oral antibiotics don’t really work for me anymore. She’s not one of the NPs that I usually see, so she didn’t know how complicated my body is. haha. She agreed that I should start IVs at home and do a prednisone taper. She sent a message to my doctor to verify this was the course of action he would go with.

    She suggested IV cefepime (2g) because my last sputum culture showed my pseudomonas was sensitive to it. It will be every 8 hours via IV push for 14 days. IV push is fancy wording for it’s in a 30cc syringe and I’ll push it in my port over about 10 minutes. I often do IV zosyn but your bugs can build up a resistance to different antibiotics if they are used a lot. We are trying to not let that happen since we are so limited in my drug sensitives and my long list of allergies.

    That’s it for now. I’ll update more later on the MRI I had of my brain that was to make sure we weren’t missing anything regarding my headaches, which the headaches have been better by the way. I just wanted to get this update posted so you were up to date.

    Until next time…

  • Taboo subject…death and dying

    If the topic of death and dying is triggering for you, I suggest you don’t continue reading.

    A fellow CFer (in a CF women’s group I started) asked about end of life decisions as far as a living will and a DPOA (durable power of attorney) and what she should have in place. Her father is dying (not from CF) and as she’s by his side she realized she needs something in place for her wishes but didn’t know where to start.

    I wrote some thoughts in my notes app on my phone regarding death and dying a few days ago after watching a documentary on medical aid in dying (MAID). The point of this post is not the topic of medical aid in dying. I don’t feel the need to tell you my point of view on that subject because that is a personal thing and the way I feel is the way I feel. Anyway, that documentary got me thinking about end of life, in regard to my life with CF.

    My mom and I talked about end of life and death often because it’s my reality with an incurable genetic disease. Our family has never shied away from the topic. My mom had COPD. When she was visiting me in Tennessee the week before she passed away the topic of what she and I wanted at the end of our lives came up. Who would have thought that conversation would come into play a week later. She didn’t have anything in writing like a living will or a DPOA. My family listened to me when I shared what my mom told me her wishes were.

    I have a living will stating what my wishes are along with a DPOA stating who can make my healthcare decisions if I’m unable to make them. My CF hospital and my transplant hospital have a copy of both.

    POSSIBLY TRIGGERING PART: Now onto my feelings on dying in regard to my own life. Am I afraid of dying?? That’s a weighted question. Obviously I don’t want to leave this world where my people are and I don’t want them to have to live without me. I don’t want my loved ones to hurt when I die and they have to continue on without me.

    The fear comes in with not being able to breathe. I already get anxiety when I can’t catch my breath “easily.” It’s scary when I feel like I can’t get enough air in. This is the reason I take LOTS of breaks when doing basically anything physical. I usually push myself too far because I’m stubborn and don’t want to need breaks. When I have to catch my breath I concentrate on my breathing to focus on getting the air in slowly and not in a panic. This is my life with 30% lung function.

    I don’t swim anymore (aka go underwater). I either stand or sit on the stairs on the pool. haha The thought of being trapped” underwater and not being able to get to the top to breathe kinda freaks me out.

    Randomly I also have a little fear of throwing up and aspirating into my lungs (vomit going into my lungs). I feel like my body would try to instinctually breathe as I was throwing up because I am already hyper aware of my breathing. I’ve thrown up twice in my life that I can remember and that was when I was a kid. I hated every second of it! I will do everything in my power NOT to throw up. I lamaze breathe my way through feeling nauseous. I also have anti-nausea meds if I need them. I know that most people say “if I just throw up I know I’ll feel better,” I am NOT one of those people. haha

    I say all that to say, talking about death shouldn’t be a taboo subject. Talking about death doesn’t mean you are speaking it into existence. Death is going to happen to everyone. For those of us with chronic diseases, death due to complications from that disease is a reality. It’s not a fun reality but you can have a say how it goes. You can be in charge of it.

    I speak from experience when I say talking with your loved ones about how you want your end of life to look is worth it. Knowing what my mom wanted helped to make those decisions. If you have a hard time talking about your wishes with someone, you need to have a living will in place so you can put in writing what you want. Also you should have at least one person you can trust to fulfill your wishes if you are not able to with a DPOA.

    Losing loved ones isn’t fair. Living life without our loved ones isn’t fair. Death isn’t fair.

    Until next time…