Quick update: My lung function is up to 33%/.94 L from 21% when I went into the hospital. We are happy with those numbers. I was hoping for 30% or over so I’m happy. I did however pull another muscle from coughing and it hurts so bad. I was surprised I did that well on PFTs with it hurting so bad. It hurts all the time but much worse and stabbing when I move and cough. I’m getting some pain meds for it so hopefully they will help take he edge off so I can do a treatment and not be in so much pain. My weight is down just a tad but that’s to be expected when fighting off an infection like I am. I’m still needing oxygen at times. I’m trying to go without while around he house but when I’m out and about I’m needing it. Also I’m sleeping with it as well. I will see clinic in 3 months unless something comes up. I do see transplant clinic next month so I will update after that. Thanks for always checking in on me.
Until next time…
Being in limbo sucks. I’m not sick enough for transplant just yet but I’m sick enough to be limited in what I can do. It’s like do I wish to get sicker so I can just get a transplant and be done with it, as if it’s that easy, or what. No I don’t want to get sicker but it’s bound to happen. It’s the nature of having cf. It’s a mind trip to say the least.
I’m having a hard time breathing today. Just feeling short of breath, so I’m hanging out on oxygen at 3L. I did go for labs this afternoon and they were good. My creatinine (kidney level) was good which is one of the major ones we keep an eye on with the colistin IV. I’ll have more labs done on Thursday before my clinic appointment that afternoon. I’m anxious to see what my lung functions will be. I don’t feel like they are great if I were to do them today but I’ve been wrong before. We shall see. I’ll update after my appointment.
Until next time…
I got home from the hospital on Tuesday afternoon. It was a long week in lock up. I survived though. I have major steroid brain after having a lot of IV solumedrol steroid (80mg a day) while inpatient. I am now tapering down from 60mg prednisone, a long taper. I’m so fuzzy, scatterbrained, antsy and swollen feeling…so annoying. I’m having a hard time even focusing on this post, I’m trying not to be all over the place…haha. Continue reading
So I forget about the online results and notes that my hospital has and got an email that I needed to update it, so I checked it and lo and behold there were the results from dexa scan were there with a note from my doctor. Long story short I have osteoporosis now and not just osteopenia (the step before). I have to continue with the calcium and vitamin D and start to take the fosamax that I haven’t been taking for whatever reason, can’t remember. Continue reading
3/27/19: I saw the pulmonary doctor on service and he said I have pneumonia (which basically means I have an infection in my lungs duh). My white count was 20,000 when I came I to the er and came down to 15,000 today. Normal range is around 5,000. So I still have a ways to go. The 3 antibiotics I’m on are fighting whatever it is. I’m Staying on the steroids until I’m not short of breath anymore. Coughing fits are the worst because it takes me a minute to catch my breath after. Going to the bathroom is another task. I did however walk a half a loop of the floor with PT this morning. I had to take a breather.
3/28/19: I had a chest CT which didn’t show any major pneumonia compared to my past ones but did show some area of “fluffiness” which is the infection. Mind you my lungs are full of mucus that holds bacteria all the time, it’s just whether it’s flaring up or not and if we treat my symptoms or not. With all that said they are thinking about changing one of the antibiotics because my white count went back up to 18,000 today. That could be from the steroids or they infection. The floor pulmonary doc is consulting with my doc as to what he wants to do. He mentioned colistin IV and that’s the one that made me have my kidney injury where my creatinine went up to 7 and normal is .5-1.1. If they decide to use it I’m in the right place so they can give me fluids to keep my kidneys flushed and check kidney levels daily. Now how am I feeling you ask…pretty much the same. Just talking and coughing gets me out of breath. I did get more sleep last night even between all the nighttime nurses.
Until next time….
Hey all! Well the oral antibiotics didn’t do anything and I was getting worse. I was having a hard time maintaining my oxygen saturation. I was dropping into the 80’s when moving around doing anything. I have stayed hooked up to oxygen and gotten up to the lower 90’s when on 4 liters of oxygen. I was originally on 2.5 liters and had to bump it up because I couldn’t get my sats up. Continue reading
As I sit here doing a breathing treatment, which includes the vest along with DuoNeb, Budesonide and Pulmozyme, I think how stupid all of this is. I know it’s what I have to do but the vest makes it so hard to breathe when I already don’t feel like I can get enough air in. Let me rewind a minute…I called my doc for a prednisone burst/taper for my severe tightness and wheezing. I finished my taper of prednisone yesterday. I’m not feeling better so I called back and asked for antibiotics. I started oral Bactrim and Levaquin yesterday. I have a CF clinic appointment on Thursday so we shall see how I am then. Continue reading