Today I had CF clinic. It was an all around good visit. Sometimes I hate saying that I feel “good” because I know it won’t last forever. First up was lung functions. My FEV1 was 35%/.98L which is pretty much the same as last time. My weight was stable at 123 and my pulse ox was 95%. I met with the whole team of folks and was sent on my way. Can’t complain there. The pulled muscle I had FOREVER is finally better. Short and sweet update!
Until next time…
Still fundraising for transplant at www.COTAforShannonM.com. Thank you for everyone that has already donated, it is greatly appreciated.
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
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…
Today was originally a regular follow up but became an IV check up. All looks good. My weight is down a little from all the antibiotics wreaking havoc on my gut. My FEV1 was down a smidge to 34%/.98L but still around my baseline. I also had a dexa scan (bone density). I have a dexa every 2 years to check my bone health. In 2016 my scan showed osteopenia which is a step before osteoporosis. It just means that my bones are a little weak. With CF I don’t absorb nutrients normally because of my bad pancreas therefore I have to take vitamin and calcium supplements. 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 have been really short of breath and coughing more so I made an appointment with CF clinic. Today was the day. I did lung functions and they were actually up since I was last seen in November. My FEV1 was 37%/1.05L. I decided to do IVs in hopes of that I caught whatever this is before it got bad. I will be on cefapime every 8 hours and amikacin every 24 hours and have labs twice a week. I have a follow up appointment on February 7th.
Until next time…
Hello all! It’s been a little bit since I updated. I have had a hard time with switching antidepressants BUT I’m finally starting to feel like myself again. I still have some work to do but I’m getting there. Like I said in the last post I kind of regretted stopping the Effexor, well I’m back on it. The other meds just weren’t cutting it so I asked to be put back on the Effexor. It’s been 4 weeks and I’m finally feeling decent. I have lost weight from changing antidepressants. My appetite hasn’t been the best but it’s getting better. Continue reading
I started Symdeko April 19th. It started to affect my mood (depression and anxiety), my hair has been shedding and giving me slight acne. I decided to stop taking Symdeko mainly due to the depression and anxiety issue. I have not felt like myself in awhile. I made the decision to stop the Symdeko and the Effexor and find another antidepressant that will hopefully work better for me. Now I’m thinking maybe I should have just stopped the Symdeko, but I didn’t think it was causing any issues until I realized that was the only new thing. Now that I’m off of the Effexor I will try my best not to go back on it if at all possible since it was so hard to come off of it. Continue reading
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
When I was at CF clinic on the 2nd, I asked for oral antibiotics hoping I wouldn’t need IVs. Sometimes (not too often anymore) I can get by with orals instead of going straight to IVs. With my line of drugs that don’t work I’m limited. Well I had to call them back because my cough and wheeze were still hanging around. I asked only for a short burst of prednisone hoping it would help. You guessed it, I had to throw in the towel and ask for IVs because my cough was persistent and the amount I’m coughing up has increased. I went for lung functions and they were down a little (FEV1 34%/.98L). When compared to my last set of lung functions they are down 4%. Continue reading