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’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
Well first of all my side pain is gone! It could have been GI (intestines) related because I did a “clean out” just in case and it seemed to help the pain. It didn’t take it away but it was less. What’s a “clean out” and why did I do it? A “clean out” is when I drink lots of miralax to get the poo moving in case there was a blockage starting. If a blockage gets bad enough it can require surgery. No thank you! So all is well in that area now, thankfully. Continue reading
A few days ago I started having sharp pain in my left lower side at the end of my ribs. I’m pretty sure I have pulled a muscle or fractured a rib again from coughing. There’s not much you can do for either except to manage the pain. Of course coughing hurts like crazy. I’m trying to master breathing and coughing with my right side only with no luck…haha. Just kidding. I might ask for an X-ray at some point if I require more pain management. I’m trying to just deal with it but it’s annoying. Just wanted to get this into my blog for my memory, which sucks. It’s just another part of my reality. Coughing sucks.
Until next time…
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
It was a good clinic visit today. It’s always good when they say that you look the best they have seen you look in awhile. I don’t know if I can attribute that to the Symdeko or just feeling decent. I’m not trying to sound like a doubting Debbie but I just haven’t had any major “ah ha moments” to convince me it is symdeko but I should stop that way of thinking. It is obviously working for the better, especially since I haven’t had any of the side effects. Continue reading
Interesting title? Let me explain. I was at a friends house on Sunday evening sitting on a bar stool at her kitchen island chit chatting with her while she was cooking/baking. Along comes a coughing fit. A doosey one where I see stars and shake. Well this one went a little farther and I blacked out for a second and fell out of the bar stool straight on my face. Yes, you read that right. Pictures below… 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
I called my nurse today and asked for the obligatory 3rd week of IVs. 14 days never seems to get me over the hump. Although, I would love to be needle free tomorrow, that will have to wait another 7 days. Continue reading
I managed to get myself up and out the door for 2 doctor appointments. I had a very hard day yesterday, emotionally and physically. I finished my Effexor taper the day before which brought on the emotional bad day of crying spells out of nowhere, rages, screaming/yelling out of frustration, brain zaps, can’t find the right words for things, wobbly, dizzy, etc. Physical symptoms are non productive cough which sucks. I can’t sleep for more than an hour at a time it seems. I can’t get comfortable. My anxiety is through the roof. Yada yada yada yada. Continue reading