Today was CF clinic day. I am seen every 3 months, so today was a regular check up. However, I have been wheezing more so it was good timing. They had me do my lung functions at home on my home spirometer. My FEV1 was 35% which is my baseline (average). If you are new here the 35% FEV1 means I am using 35% of my lungs to breath. Most healthy people are 100% or more. They checked all my vitals and they were all good except that I had gained some more weight. Usually that would be a good thing for a CFer but I have gained quite a bit over the last 2 years since starting the new CF drug Trikafta. So basically they aren’t concerned with my weight but I am. The extra weight doesn’t make my breathing any easier that’s for sure.
We spoke about all my meds and what changes we could make, if any to change. They are going to try and up my inhaled steroid Budesonide (Pulmicort) in hopes that it will help with my wheezing. I have been wheezing a lot and getting out of breath easily with activity. My oxygen sats are fine so oxygen is not the answer. I am thinking it is a combo of the extra weight and the weather changing. The season changes mess with me every time.
They drew labs while I was there to check my thyroid, iron and vitamin levels to see if any of that could be contributing to why I’m always tired and sleep a lot. They decided to do an oral antibiotic, Augmentin, for 2 weeks and a prednisone taper over a 10 days. Hoping that combo helps with my wheezing and rattling in my chest. I see them back in December for another 3 month check up.
Until next time…
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…
February 2020 was the last time I was on IVs. I would like to think it is Trikafta making the difference. I usually do IVs every 3-5 months so that’s a plus of Trikafta. It makes me attempt to take the bad (weight gain) with the good. Oh I did my lung functions with my home spirometer. My best fev1 was 35%. So basically holding steady which is good. They had dropped a little over the last few weeks but managed to be back to my baseline today of course. Haha
With that said I have been fighting something for a few weeks. I’ve had an increased cough, coughing more stuff up (which is less since Trikafta), more short of breath, been using my oxygen at night to help, wheezy and fatigue. I made the call for IVs. I have a telemed appointment on Thursday with my CF clinic. So I called to see if they wanted to see me or would prescribe IVs without. Thanks to Covid I was about to get things going without being seen but still have me appointment on Thursday to check in. My port is accessed, labs are drawn and a chest X-ray is done. Busy day at the hospital. Now I wait for the home health to deliver my IV supplies. I will be on Zosyn every 6 hours for 2 weeks. Here’s to no sleep!
Mentally I’ve been in a funk. We are coming up on the anniversary of my moms passing, Jan 19. It’s always a tough time reliving it. We are coming up on 5 years. So my depression has been creeping up. I’m trying my best. Yes I’m still seeing a counselor and taking my antidepressants but that’s not a cure all. There are still bad days. I take what I get.
Until next 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…
I turned 40 on Saturday the 1st!!! Go me for hitting a milestone in life with CF. When I was born the life expectancy was 12. It is now 37.5, I believe. So to say it’s a milestone that I made it to 40 is maybe an understatement. I am just so excited to be a 40 year old who happens to have CF and is still kicking butt and taking names! Continue reading
Today I had CF clinic. Thanks to Trikafta my weight is up, not that I want it to be. haha My lung functions are holding steady at 37%/1.06 L FEV1. In October they were 36%/1.02 L FEV1. It is unclear if I will gain any lung function on Trikafta, only time will tell. I’m just happy if I hold steady and put off lung transplant as long as possible which gives us more time to fundraise. The hope is that Trikafta will extend the time between exacerbations (lung infection) needing IV antibiotics. Continue reading
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
The wait is finally over. Trikafta was delivered today! I will start it tomorrow morning. Now here is to hoping that I tolerate it well. I will update after I’ve been on it for a little bit so that I have something to update about. haha
I contacted my transplant coordinator and had her ask my doctor about me trying Trikafta (the new CF drug) in regards to my liver nodules. Doctor said it is fine to take it we just have to monitor my liver enzymes closely. Continue reading
The new triple drug for CF has been approved! You can read the FDA article here. It is supposed to help about 90% of the CF population. It is for my CF mutations (double delta f508). The name of it is Trikafta (elexacaftor/ivacaftor/tezacaftor). I can’t help but to think trifecta when I see the name…haha. Continue reading