Pierre42
04-26-2013, 10:51 PM
So they say "you always remember your first time".... Oddly enough I remember very little of My First Time In Intensive Care (though I remember everything surrounding it).
A little over 2 yrs ago I was diagnosed with Wegener's.
Symptoms started with a stabbing earache (cleared up with antibiotics).
Then (a week later) purpura just above my ankles (after flying from Australia to Hawaii), which cleared up the next day - then (surprisingly) a week of nothing (literally alcohol-filled bliss - a work conference).
The following week began the constant high fever and extreme muscle fatigue, progressing to an occasional but constant dry irritated (but deep and chesty) cough that produced nothing.
A couple of weeks of intense tests (full blood work, etc) my GP merely concluded "you appear to be fighting off a massive infection, of which there are absolutely zero outward signs" and resulting in presenting myself to the emergency ward at the local hospital (Sydney Royal North Shore). (My GP was great, the moment this was obviously major and obviously beyond her she packed me off to the hospital).
On the third (or fourth?) day in hospital (by then I was on an Oxygen tube most of the time) I began coughing up blood and my ANCA test came back (finally) with a positive result. Chest x-ray showed "a shadow on the lung".
An almost futile attempt at kidney biopsy (by then I was coughing convulsively every 15-30 seconds) turned up the third agreement and I was literally rushed into ICU, a Doctor jogging at my side incanting consequences at me and pushing forms in my face - I remember signing things and saying "do what you need to do, just make sure it doesn't hurt".
They didn't tell me (until afterwards) that the anaesthetics (or whatever you call them) used to keep me unconscious (comatose?) for an extended period of time (two weeks of my life I am glad I will never remember, what I DID see as I awakened was appalling enough) do funny things to your mind. For whatever reason I went into a paranoid (as opposed to euphoric) trip in the last few days as I regained consciousness, and it was .... unpleasant.
Treatment including plasmapheresis, high doses of IV cyclophosphamide and prednisolone, and tubes *everywhere* (they had to make many extra holes).
Oddly enough apparently I'm "a thrasher" and had to be chemically restrained as well.
Upon regaining consciousness I was literally as weak as a newborn kitten (which I found to be an exceptional learning experience), and I spent the next two weeks in a normal ward doing basic physiotherapy. It was several days before I could feed myself, most of a week before I could stand unsupported. The worst of it was not knowing how long it would take me to recover (or even if I would ever fully recover).
All the doctors could tell me was "everybody is different".
I spent the rest of the two weeks doing "a zombie shuffle" around the ward, and more often than not scaring the nurses as I pushed the limits of what they considered "safe for someone in my condition".
By the second week out of hospital I was feeling "myself" enough to be back at work (desk job, I'm A Network Engineer). Admittedly mostly I had simply decided that pushing myself back into a normal life would help me cope with normal life again, that and I won't know my limits if I don't push myself. The first few days I left work a little early (tiring very easily), and it took about a month before I wasn't almost completely exhausted by the end of a full working day.
Having spent a few weeks with my lungs filling with blood (plus several days on an oxygen tube, several more on a ventilator) it took me about three months before water on my face in the shower didn't trigger a minor "panic attack" (immediate fear-of-drowning reaction). Nothing major just that spike of adrenaline rush. The weird thing was that even the first time I had a sense of feeling mentally detached from the panic, and being able to understand it as a purely physical reaction.
After about 6 (or was it 7?) weekly "pulses" of IV Cyclo I went on oral (with rapidly decreasing levels of Prednisolone), and stayed with it for about a year.
Now I'm on Methotrexate (20mg weekly) and Prednisolone (5mg daily) plus Vitamine D, Calcium and Folic Acid.
I've been lucky in that I've not had any unpleasant side-effects from medications (no nausea etc) worse than a rash of acne and a little weight-gain while I was on a high dose of prednisolone.
Until a minor flare-up of purpura this month (which have since disappeared, and bloods are now saying "close to normal") I've not had any obvious Wegener's symptoms (nothing you could see without a bloodtest) since my trip to the ICU two years ago. Having said that, I have been back in hospital a few times - mostly for bouts of cold/flu/bronchitis/pneumonia that needed IV antis - but those are more due to the side effects of treatment than the disease itself (also once for a cholecystectomy, but that was completely unrelated).
Currently I do bruise a little more easily than before, and any injuries (minor cuts, etc) take noticeably longer to heal - but other than that I am back to "outwardly normal" these days. I have lung-condition at the botttom/worst end of the scale of "normal for my age", but sustained no long-term kidney damage.
The Price Of Freedom Is Eternal Vigilance - so I bloodtest regularly, and the moment my biology does anything odd I'm asking my GP for an opinion.
A little over 2 yrs ago I was diagnosed with Wegener's.
Symptoms started with a stabbing earache (cleared up with antibiotics).
Then (a week later) purpura just above my ankles (after flying from Australia to Hawaii), which cleared up the next day - then (surprisingly) a week of nothing (literally alcohol-filled bliss - a work conference).
The following week began the constant high fever and extreme muscle fatigue, progressing to an occasional but constant dry irritated (but deep and chesty) cough that produced nothing.
A couple of weeks of intense tests (full blood work, etc) my GP merely concluded "you appear to be fighting off a massive infection, of which there are absolutely zero outward signs" and resulting in presenting myself to the emergency ward at the local hospital (Sydney Royal North Shore). (My GP was great, the moment this was obviously major and obviously beyond her she packed me off to the hospital).
On the third (or fourth?) day in hospital (by then I was on an Oxygen tube most of the time) I began coughing up blood and my ANCA test came back (finally) with a positive result. Chest x-ray showed "a shadow on the lung".
An almost futile attempt at kidney biopsy (by then I was coughing convulsively every 15-30 seconds) turned up the third agreement and I was literally rushed into ICU, a Doctor jogging at my side incanting consequences at me and pushing forms in my face - I remember signing things and saying "do what you need to do, just make sure it doesn't hurt".
They didn't tell me (until afterwards) that the anaesthetics (or whatever you call them) used to keep me unconscious (comatose?) for an extended period of time (two weeks of my life I am glad I will never remember, what I DID see as I awakened was appalling enough) do funny things to your mind. For whatever reason I went into a paranoid (as opposed to euphoric) trip in the last few days as I regained consciousness, and it was .... unpleasant.
Treatment including plasmapheresis, high doses of IV cyclophosphamide and prednisolone, and tubes *everywhere* (they had to make many extra holes).
Oddly enough apparently I'm "a thrasher" and had to be chemically restrained as well.
Upon regaining consciousness I was literally as weak as a newborn kitten (which I found to be an exceptional learning experience), and I spent the next two weeks in a normal ward doing basic physiotherapy. It was several days before I could feed myself, most of a week before I could stand unsupported. The worst of it was not knowing how long it would take me to recover (or even if I would ever fully recover).
All the doctors could tell me was "everybody is different".
I spent the rest of the two weeks doing "a zombie shuffle" around the ward, and more often than not scaring the nurses as I pushed the limits of what they considered "safe for someone in my condition".
By the second week out of hospital I was feeling "myself" enough to be back at work (desk job, I'm A Network Engineer). Admittedly mostly I had simply decided that pushing myself back into a normal life would help me cope with normal life again, that and I won't know my limits if I don't push myself. The first few days I left work a little early (tiring very easily), and it took about a month before I wasn't almost completely exhausted by the end of a full working day.
Having spent a few weeks with my lungs filling with blood (plus several days on an oxygen tube, several more on a ventilator) it took me about three months before water on my face in the shower didn't trigger a minor "panic attack" (immediate fear-of-drowning reaction). Nothing major just that spike of adrenaline rush. The weird thing was that even the first time I had a sense of feeling mentally detached from the panic, and being able to understand it as a purely physical reaction.
After about 6 (or was it 7?) weekly "pulses" of IV Cyclo I went on oral (with rapidly decreasing levels of Prednisolone), and stayed with it for about a year.
Now I'm on Methotrexate (20mg weekly) and Prednisolone (5mg daily) plus Vitamine D, Calcium and Folic Acid.
I've been lucky in that I've not had any unpleasant side-effects from medications (no nausea etc) worse than a rash of acne and a little weight-gain while I was on a high dose of prednisolone.
Until a minor flare-up of purpura this month (which have since disappeared, and bloods are now saying "close to normal") I've not had any obvious Wegener's symptoms (nothing you could see without a bloodtest) since my trip to the ICU two years ago. Having said that, I have been back in hospital a few times - mostly for bouts of cold/flu/bronchitis/pneumonia that needed IV antis - but those are more due to the side effects of treatment than the disease itself (also once for a cholecystectomy, but that was completely unrelated).
Currently I do bruise a little more easily than before, and any injuries (minor cuts, etc) take noticeably longer to heal - but other than that I am back to "outwardly normal" these days. I have lung-condition at the botttom/worst end of the scale of "normal for my age", but sustained no long-term kidney damage.
The Price Of Freedom Is Eternal Vigilance - so I bloodtest regularly, and the moment my biology does anything odd I'm asking my GP for an opinion.