(no subject)
CF update:
I'm on home IVs again.
The thing is that my last bout of IVs, which I finished two months ago, failed. I started them because I had a virus which went to my lungs, and I never really recuperated from that. So I finished those IVs with lung function of 38% [and feeling accordingly], they sprung to 43% after two weeks by some kind of a fluke [because I was still feeling like I'm in my mid-thirties lung-wise], then dropped to 37% after a month [which fit quite well with how I was feeling energy- and breathing-wise].
At that last CF check-up I caught a cold. It passed.
Then I got another cold. It also passed.
The problem is that I felt progressively weaker and more out of breath after each of these little quirks - it's maddening how a tiny case of sniffles weakens me.
And then, last Saturday and Sunday, we had that awful sandstorm here. I've lived in Beer Sheva since 1996 and have seen my fair share of sandstorms and they're impressive, but that was the worst I've ever seen. It was up to Hollywood's disaster movies' standards.
I don't think I've caught my breath after that entirely.
This latest Friday night John and I made another trip to the emergency room [second in two weeks; there should be a membership card for people like us, I don't know, come 9 times, get VIP treatment the 10th time you come around, or something to that extent]. I was so out of breath I was dizzy and lightheaded and kind of high - somewhat like when I take Percocet, except I haven't taken any. My oxygen levels were 93% - which is lower than my usual [I'm at 97-98 usually, which is fantastic], but not too awful - as dizzy as I was, I feared I was under 90. I occupied a bed and an oxygen mask for two hours, then the doctor came in [they had an awfully busy night] and said he wants to admit me, I refused and said I'm feeling better and will be seeing my CF doctor on Sunday, and we headed home.
On Sunday I indeed went to my CF clinic and started IVs. Fortum and Amikacin, my default and my only option - everything else I'm allergic to. So if the antibiotics fail this time, I'll be getting hospitalized and do the stuff I'm allergic to, but works better.
The semester ends in two and a half weeks, which is how long I have to do these IVs - I do 3-week courses, after the third week I have to stop the Amikacin anyway and Fortum on its own is worth shit. So if I have to get hospitalized, at least I won't be missing school. Perhaps it's a good idea in any case to do some more aggressive treatment, which, hopefully, will hold me longer. Because with the F+A combo recently I've done IVs in August, in October and now in December, and clearly they're not too effective.
I'm not doing well at all. I'm weak and achy as I always am, particularly when I'm sick, but the worst thing is that I'm absolutely out of breath after every single thing I do. I mean, to get undressed and put pajamas on? You'd think I ran, I'm so out breath. Shower? That's like an aerobics class. Going to the university and walking from the bus stop into the campus and to my building [approximately 7 minutes with my slowness]? Wow. I honestly don't recall it ever being so bad. Anything that's not sitting/laying and doing the most sedentary things like reading/TV/computer is extremely difficult. I can feel my lungs straining, and that's most likely to be psychological, but my breathing muscles all hurt like crazy when I came home yesterday after just two classes. Every breath is literally a chore.
I'll also be honest and admit that I've been having, well, not full-blown panic attacks, but episodes of it several times a week.
Emotionally being in such a poor shape is extremely hard on me. I don't handle being sick very well.
I'm on home IVs again.
The thing is that my last bout of IVs, which I finished two months ago, failed. I started them because I had a virus which went to my lungs, and I never really recuperated from that. So I finished those IVs with lung function of 38% [and feeling accordingly], they sprung to 43% after two weeks by some kind of a fluke [because I was still feeling like I'm in my mid-thirties lung-wise], then dropped to 37% after a month [which fit quite well with how I was feeling energy- and breathing-wise].
At that last CF check-up I caught a cold. It passed.
Then I got another cold. It also passed.
The problem is that I felt progressively weaker and more out of breath after each of these little quirks - it's maddening how a tiny case of sniffles weakens me.
And then, last Saturday and Sunday, we had that awful sandstorm here. I've lived in Beer Sheva since 1996 and have seen my fair share of sandstorms and they're impressive, but that was the worst I've ever seen. It was up to Hollywood's disaster movies' standards.
I don't think I've caught my breath after that entirely.
This latest Friday night John and I made another trip to the emergency room [second in two weeks; there should be a membership card for people like us, I don't know, come 9 times, get VIP treatment the 10th time you come around, or something to that extent]. I was so out of breath I was dizzy and lightheaded and kind of high - somewhat like when I take Percocet, except I haven't taken any. My oxygen levels were 93% - which is lower than my usual [I'm at 97-98 usually, which is fantastic], but not too awful - as dizzy as I was, I feared I was under 90. I occupied a bed and an oxygen mask for two hours, then the doctor came in [they had an awfully busy night] and said he wants to admit me, I refused and said I'm feeling better and will be seeing my CF doctor on Sunday, and we headed home.
On Sunday I indeed went to my CF clinic and started IVs. Fortum and Amikacin, my default and my only option - everything else I'm allergic to. So if the antibiotics fail this time, I'll be getting hospitalized and do the stuff I'm allergic to, but works better.
The semester ends in two and a half weeks, which is how long I have to do these IVs - I do 3-week courses, after the third week I have to stop the Amikacin anyway and Fortum on its own is worth shit. So if I have to get hospitalized, at least I won't be missing school. Perhaps it's a good idea in any case to do some more aggressive treatment, which, hopefully, will hold me longer. Because with the F+A combo recently I've done IVs in August, in October and now in December, and clearly they're not too effective.
I'm not doing well at all. I'm weak and achy as I always am, particularly when I'm sick, but the worst thing is that I'm absolutely out of breath after every single thing I do. I mean, to get undressed and put pajamas on? You'd think I ran, I'm so out breath. Shower? That's like an aerobics class. Going to the university and walking from the bus stop into the campus and to my building [approximately 7 minutes with my slowness]? Wow. I honestly don't recall it ever being so bad. Anything that's not sitting/laying and doing the most sedentary things like reading/TV/computer is extremely difficult. I can feel my lungs straining, and that's most likely to be psychological, but my breathing muscles all hurt like crazy when I came home yesterday after just two classes. Every breath is literally a chore.
I'll also be honest and admit that I've been having, well, not full-blown panic attacks, but episodes of it several times a week.
Emotionally being in such a poor shape is extremely hard on me. I don't handle being sick very well.