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…
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
I got home around noon today from the hospital which is record time for a release. It helped that I didn’t have to wait for my IV antibiotics to be delivered to me at the hospital. They delivered them to the house which is nice. Let me recap the stay for ya… Continue reading
Today I had a check up since I’m not feeling better after 6 days of IV antibiotics. My lung function was down again to .88L/31% FEV1. I started a prednisone taper on Tuesday, starting at 60mg for 3 days, 40mg for 3 days, 20mg for 3 days then 10mg for 3 days. I was hoping that the taper would help with the wheezing and chest tightness, so far it’s a no go. We decided that if I am not better over the weekend I am to call my nurse to be admitted. They want to add Colistin to my IV antibiotics but want to start it inpatient because of the history of kidney problems with it. There was that one time that my creatinine shot up to 7.0 with the normal range is up to 1.1. Therefore we have to watch it every time I’m on it or any IV antibiotics for that matter. So I will take the weekend to rest, do lots of treatments and hydrate and hope I feel better. However I kinda feel like I am prolonging the inevitable of an admission. Might need the heavy hitters to knock this one out. I’ll update next week.
Until next time…
Hello friends and family! Seems like I was just here updating you all. Well I am not feeling good again after only 2.5 weeks off of IVs. I started with the dry unproductive cough again which was what happened before I was hospitalized at the end of March. Along with achy and my chest is sore from all the coughing. Plus I still have the pulled muscle on the left side of my chest which seems worse the last few days. It hurts so bad to cough. I’ve been trying to brace myself when I cough but that doesn’t even help. It’s like something is stabbing me every time. Continue reading
I’ve been on IV’s for 13 days with no real improvement. I called my nurse to discuss changing antibiotics since I’m not feeling any better. We decided on IV Zoysn every 6 hours and oral Bactrim three times a day. I usually get an upset stomach and (TMI) loose stools with these two meds so I will need to take probiotics to try and help that. I will be on these two new antibiotics for two weeks with the hopes that I will start to feel better. We had to look at my sensitivities from my sputum culture to figure out what drugs should work and these two were the winners. Oh joy!
Until next time…
I started having viral symptoms on the 22nd)…fevers, body aches, chills, horrendous cough, horrible chest pain from all the coughing, shortness of breath, etc. I finally had enough yesterday and had to go to the ER. There was no CF clinic for me to be seen in this week so ER it was. I tested negative for the flu which I was exposed to. My chest X-ray showed no changes and no pneumonia, all good there. Labs showed that my white count was elevated so my body was definitely fighting something. I was started on IV Zosyn and oral Levaquin. I didn’t get to my room until 9pm. I did lung functions while in the ER and my FEV1 was down 10% to 28%. That’s a decent drop. This virus or whatever it is a doozy. Continue reading
Just a short update: I finished 21 days of IV Aztreonam on Monday. The Levaquin was not extended which I am grateful for. It causes me lots of arthritic pain and makes moving around painful in my joints, all over. As for how I’m feeling now…I’m decent enough. I still have a dry sounding productive cough. I will keep an eye/ear on it. Continue reading
Yesterday was surgery day for my gallbladder removal. My gallbladder has been bothering me for a few months if not longer. I had lots of gallstones per the ultrasound. On the ultrasound, it was also constricted like it does when you are eating when it wasn’t supposed to be because I hadn’t eaten for at least 8 hours. Then was the hyda scan which is where they inject a nuclear substance through IV and wait for it to get into your system so they can see the things they need to see. The hyda scan took longer than it should have because my gallbladder was playing hide and seek, it wasn’t showing up within the hour like it should have. I had to go back for more scans/pictures an hour later and if it hadn’t shown up so slightly at that point I would have had to wait 3 more hours! Thankfully my gallbladder showed up ever so slightly but good enough to show that it wasn’t cooperating. When I saw the surgeon 2 days later there was no debate, it was coming out. Continue reading