CF Happens

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…