CF Clinic Check Up

Today I had a follow up appointment from being on IVs. First up was vitals, all good some too good (weight….). Next up was lung functions. I’m holding steady for a year now. Of course there has been some ups and a lot of downs but I’ve managed to hold steady. My FEV1 was 36% / 1.00L. My sputum that I brought into clinic was a little pinkish from blood and is something to keep an eye on. If I have real blood then it would mean an admission to figure things out with more testing and to do IV antibiotics of course. Next up was pharmacy techs to go over my meds. I had stopped the azithromycin (Monday, Wednesday, Friday) because I didn’t see the point of it and wasn’t seeing any affects of it. I was then schooled in azithromycin 101 (because I was honest and told the truth that I had stopped it…haha) and told that it is not only for anti-inflammatory properties but it lessens CF exacerbations as well in studies. I will be restarting that one. I also questioned the singular (for allergies and asthma) because I once again wasn’t noticing any difference. I was told I could stop that one and see how I do off of it because it can have some psych side effects and we all know that I already have depression and anxiety and don’t need any help in causing problems in that area.

Doctor time! We discussed a lot today since it had been a year since I’ve been seen in person and not a Telehealth visit. He informed me that I am due for my bone density test yet again. I swear that thing sneaks up on me every time. I will be scheduled for that and if it shows no improvement since the last one, which showed osteoporosis, then we will talk about doing Reclast infusion once a year instead of the fosamax pill once a week to see if that makes any difference. I was started on Vitron+C (iron plus vitamin C) a month and a half ago because my iron was on the low side. He had them draw labs today to check my iron to see where it’s at. I’m not a huge fan of the vitron because it upsets my tummy in the sense of stinky gas and bowel movements. I told him my husband was really the one who wanted to know how much longer I needed to take it…haha. If I still need it we talked about doing an iron infusion instead of the pills. We will cross that bridge once we get results from the bloodwork.

CFers need colonoscopies starting at age 40 and I am 41, oops. Some clinics start at 35. So we will be getting that scheduled as well. He gave me the option to wait until I get the COVID vaccine or just do it now. I said do it now and get it over with because who knows when I’ll be eligible for the vaccine. It’s not pleasant so just get it over with. CFers have to do a much longer prep than you healthy folks. I will have to be on a clear liquid diet for a few days leading up to the prep to help clear out my colon. I also have to do more of a prep (lots of GoLytly), not looking forward to it but it must be done. My mom and grandma were prone to polyps so I need to get it done. I think that might be all. I’m sure I forgot something. I should have taken notes since it was such a long appointment…haha.

Until next time…

IV antibiotic time

I have been sick since my birthday, so 2 weeks now.  I tried oral antibiotics which didn’t help.  I threw in the towel and called my nurse to get IVs started.  I had a “sick visit” today since they wanted to see me and get lung functions done.  My FEV1 was down a bit to .91L/33% (last time was 36%).  I’m having more shortness of breath, fatigue and cough.  It’s been a long 2 weeks of being sick and not feeling good.  After seeing the doctor I went to the infusion lab and got my port accessed and had labs drawn.  Now I’m just waiting for meds to be delivered so I can get started.  I’ll be on IV Zosyn every 6 hours for 2 weeks.  Hopefully 2 weeks is all I need.  I think that’s all.

Until next time…

2 Week Trikafta Update

I’ve had a few people ask how I’m doing on the new medicine so I thought I would update.  Today is day 14 on Trikafta, the new CF medicine.  On day one I noticed a difference in my cough within about 4-5 hours from when I took my first dose.  My cough was more “juicy” and productive.  It was the medicine working to try and clear out the old mucus in my lungs.  I was coughing more and coughing up more than usual as well.  By day 3 my cough had changed back to my usual dry cough and was not very productive (my usual).  I’m coughing less but still having coughing fits as per my usual but they are less intense and I recover faster.  I also recover from being out of breath faster as well.  My sputum (mucus) is lighter in color and thinner (not as thick and sticky).  I’m not coughing as much at night, or at least I’m not waking up to my coughing as much.  I have not had any bad side effects thus far. Yay! Continue reading

Clinic day/follow up from hospital

Today was CF clinic day.  It was my normal 3 month check up that turned into a hospital/IV follow up.  It seems to happen that way most of the time.  I have dropped the prednisone weight I gained which I’m happy about because 5 pounds in one week was a bit much…haha.  No worries, I am not losing weight per se, I just had gained weight from being on high doses of prednisone.  I am just fine in the weight department. Continue reading

3 weeks of IVs complete

I finished 3 weeks of IVs earlier this week.  I do feel better than I did BUT I’m still having coughing attacks.  I’m attributing it more to asthma though.  I was offered prednisone at clinic on Friday (yesterday) but I declined for the time being.  I’m going to hold off and see if treatments and such can help.  We all know how much I love prednisone, NOT!  My lung functions were the same at FEV1 .96L/34%.  My first two attempts were 33% and my last one was the 34%.  I will follow-up in 6 weeks. Continue reading

Life update

I had a CF clinic check up yesterday and all is good.  My lung functions are up 3% to 36% from 33%.  They said I sounded good and looked good.  My BMI is great at 24, yes I have some extra weight to help fight off infection.  When I’m sick I can lose weight fast because your body takes the calories you take in to fight off infection.  Not that I feel comfortable with the extra weight but everyone says, “you look so good,” so I’ll take it I guess.  If the extra weight helps me stay “healthy” (whatever that is) I try to deal with it the best I can. Continue reading

Hiking Shannonigans

I have what I like to call my “bucket list.” It’s a list of things that I want to accomplish before my lungs get worse and don’t allow me to do them anymore. I don’t have a written out list so much but it’s in my head. I guess I should get it out of there. One of the top things I have wanted to do since moving to East Tennessee is hiking. Let’s just say that I don’t mean the repelling off the side of a mountain kind of hiking. That would just be stupid. Haha  Continue reading