I'm feeling very frustrated with my current exacerbation: not sure what to do, when to go back to GP, when to make a fuss.I don't want to wear him out with my frequent flares, so trying to limit visits to really serious situations. But what the heck does ""serious"" mean when every day I'm spending at least some time with PF so low that ER guidelines would count it as severe or even life threatening? It can't acually be that though because I'm breathing, just not happily or easily.Not doing anyting about this means that I'm basically living in the upper regions of the red zone with occassional but all too short visits into yellow or sometimes even very bottom green. From time to time when PF is really low, I'm also getting a weird headache in reverse – instead of my head feeling tight, it feels full as if my blood vessels all became larger. I'm guessing that's my body responding to less than ideal O2 levels, but I don't really know since I don't have a pulse oximeter at home.This present exacerbation actually started at the beginning of August, but I didn't want to stop the pred taper so I just ignored it. That strategy was no longer possible about two weeks ago: the Jewish holidays were coming up, I had things to organize, and a health scare with my husband (he's ok) also drove home that I can't afford to be so ill day in and day out, that I spend most of the day sofa surfing between each of the days' tasks just so I have the energy and focus to get the tasks done. So I finally went to surgery walk in hours about 2 weeks ago and saw not-my-usual-GP - she wanted to send me to A&E, but I refused. Sent me home with a referral letter anyway and instructions to go back on 50mg of pred for three days, then down to 20mg until I saw my regular doctor. Five days later went to regular GP for follow up. He also wanted me to go to A&E - and sent me off with a letter for A&E asking them to consider hospitalization. Still didn't go because of my lousy experience last time and also because we were supposed to go on vacation. I finally gave in 36hours later after I realized I wasn't going to have much of a vacation when I was having so much trouble breathing I couldn't even sit at the beach comfortably and spent all of dinner talking in half sentences grabbing breaths in between. Finally called the after hours triage nurse who told my husband to take me to the hospital, which he did.... they were very nice, but confused since as per usual I wasn't wheezing and I wasn't silent and I wasn't bouncing off the walls scared and making a show of having difficulty. They sent me home several hours later after deciding I should just do nebs at home. I didn't want to stay in hospital for sure (we were on semi-vacation house sitting for a friend), but I don't really understand the decision given that my venous O2 was 7.8ml/dl and my venous sats were less than 50% - all of which suggests arterial sats in the 60-70% range which surely isn't good. Oh well.But I was such a mess the next day that when I went to the clinic to hand in paper work the nurse got worried, arranged an immediate appointment with the doctor, who sent me to the nurses's station for a steroid+ventolin inhalation treatment. The next time I saw my doctor, I was doing much better so I negotiated for a fast taper – he was leary of going down on pred at all. but I told him I was afraid my body would get used to the higher dose and then I'd need even more pred if things flared up again. So he agreed to a 5day/5mg taper. Since then things have stalled. Some days are better and I think things will turn around. Then I have a day like today where I woke with a sore chest from working hard breathing at night and have been sore on and off all day from muscle strain. On one hand I'm spending more time in the 40-60% PB range than I was two weeks ago, but I'm still dropping down below 30% PB at night and any time during the day when I let things go too long between doses of ventolin.I hate living off of ventolin. I just want to breath well on my own without some sort of ""crutch""..Under normal circumstances I'd make an appointment to see the pulmonologist and get his idea of how to get my breathing pre-ventolin out of the red-zone. But I'm between pulmonologists. So not sure what to do.Postscript: Just to give an idea of how messed up things are: 3 hours ago PF = 120=25% personal best (PB). Do neb. Things back up to 330 - just under 70% PB. But now three hours later, I'm back down to 150 which is 31% PB. My chest muscles are sore and I can hear that I'm not inhaling huge amounts of air, but I can still count to 10 out loud so I can't be too bad.
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