What happens to people turning up in the ER...? If you're acutely ill will you still get treatment? Or is it just 'non-acute' stuff that is being put on hold? People with serious illnesses, who are only going to get more complications by things being put on hold and therefore requiring more expensive long-term treatments....
Em... I don't know. Getting very tired of it all. Last time I went to the ER in a semi-conscious, very bad state, I laid on the floor of the urgent care clinic for over 3 hours. The wait at the ER was over 12 that night. If I ever get sick like that again, Glen and I have agreed to drive the 1.5 hours to a rural hospital - usually the wait times are less there. They won't treat me with meds as I don't have a diagnosis, but they can put IV fluids in me when I'm puking every 30 seconds.
As a student of community health, we're always being taught how much it costs a health care system when chronic cases aren't dealt with properly... seems like another big joke when we're taught that and then see this... do what I say, not as I do... that kind of thing.
Would having your mum test positive for it hold any weight in trying to get in to see someone or getting treatment? What harm is there in suggesting places in the US to you? I can't imagine what is going through your docs head. If you went and tested negative for it and they couldn't treat you, isn't that your problem not his...? Can he not suggest any private labs...? Would there be any harm in trying any of the appropriate meds and seeing what that does for your symptoms...? And did he really wait a month to tell you that he couldn't do anything for you for the next 2 months...?
Yes, if a family member has a diagnosis, then everything changes. People give your symptoms alot more validity most of the time, since porphyria is often genetic.
I don't understand what's going through my doc's head either. Late last night, while laying in bed, Glen and I were trying to figure that out too. I would think going to a US clinic would be good - ruling it in would mean proper treatment and slowing the damage; ruling it out would mean we could start looking for other causes.
There are no private labs here, we've now discovered. Only in Alberta, can they say, "Sorry, we're out of cash, we can't run your lab work", and then at the same time, make it against the law to pay that lab to run the test for you. And we even tried this - "ok we'll pay for the lab work NOW, and then when my name comes up later in the lab queue when cash flow is established, you pay us BACK". That way no one has privately paid, right? lol No go. There we go using logic again, silly us.
Side effects of heme therapy are very minimal (it's essentially a partial blood transfusion), especially compared to what I'm dealing with every hour of every day. But doc won't prescribe it since I don't have a firm diagnosis. Of course. I think if I was sick enough in an acute phase, they might prescribe it. Maybe. If they had it around - it's usually such a rare treatment, most hospitals don't even stock it.
About him waiting a month to tell me... ya. That's what makes me and Glen REALLY mad. Let's also mention that my first abnormal test happened in Sept, and I wasn't told until Nov. A full 2 months for a simple urine test. And then another month to tell me we have to wait. I'm just really angry and really hurt and feel so stupid for buying into this so-called fantastic private clinic. Argh.
We're thinking of maybe trying my previous GP out in Canmore - maybe there are differences in finances between regions in Alberta, I don't know. At least he was much more approachable, he just didn't have a clue what to do with me. Now we know what to do with me, so perhaps going back to him would be wise! lol I feel like a serious bother of a patient, but I just want to get well, that's all.
Ok enough already. lol Thanks for your concern. No beating your head against the wall, I do enough for the both of us. haha I'll get there somehow.
Hugs!
