• Looks like I forgot to update back in October. I wasn’t feeling good at the beginning of October so I did a round of oral Levaquin for 14 days and prednisone. It didn’t really do much but I held on until last week. I started with a sore throat and sinus drainage on Thanksgiving day. I went to the walk-in clinic last Saturday. It is always a gamble going to doctors that don’t know me or my CF history. I started another round of oral Levaquin (Saturday) and prednisone (Monday). I have a sinus infection that has made its way to my lungs. Today I had a regular CF clinic check up. My lung functions are pretty steady considering I’m sick. My FEV1 was .93L/34%.

    My lungs sound junky, especially in the lower lobes. We decided to make a plan since I will be out of town until the 12th. I will finish the Levaquin and prednisone at the end of next week. If I’m no better by the time I get back in town I will start home IVs. I will do cefapime which is a push (just a syringe of medicine that is pushed in over 10 minutes) every 8 hours for 14 days. I will not be surprised if I end up on IVs because it’s been awhile.

    I have been having random bruising the past few months so he put in orders for labs if/when I start IVs since they will be drawing labs anyway. My labs were all fine in September but things change. I’m also being referred to an allergy doctor to talk about doing asthma medicine shots, like Dupixent. My asthma has been a problem a lot lately. I’m hoping that will help with my wheezing and shortness of breath.

    The national CF conference was not too long ago and they discussed doing an abdominal ultrasound every 2 years as a maintenance test just like the bone density scan. Mainly to look at the liver because the liver is not always good in people with CF. I think that sums up life to this point. I will update about how I feel and if I end up doing IVs.

    Until next time…

  • Today I had my 3 month check up. First stop was the lab for my yearly labs. I managed to con my nurse into waiting on my glucose tolerance test for awhile. I hate that test. It upsets my stomach and sometimes gives me a headache from all the sugar. Plus being stuck 3 times in the hand (my arms are too scared for blood draws) in 3 hours sucks. Next stop was pulmonary function lab..My lung functions were basically the same. My FEV1 was 39%/1.08L. Last time was 40%. So holding steady is good. Last stop was clinic…oh yeah I was weighed in the pulmonary lab and I have lost weight which is good. With Trikafta I gained a lot of weight. I think I’m down about 10 pounds. I’ll take what I can get! I haven’t really been trying that hard. I did start calorie. counting and watching my diet but I saw that I was rarely going over my allowed calories so I stopped counting. haha. My doctor said my lungs sound good and I look good. My oxygen company contacted me to let me know it was time for my reevaluation to see if I still need oxygen. I haven’t used oxygen in about 2 years so I will be saying bye to my concentrator and portable oxygen. I’m ok with that because I wouldn’t fail the 6 minute walk showing I need oxygen. I just liked having it as a crutch just in case I was having a bad day. I can always get it back if needed. I see him back in 3 months for another regular check up. Now I just wait for my lab results.

    Until next time…