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Lisa_S
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Discussion Starter · #1 ·
Hi all - bear with me, this is going to be long.

I've been feeling kind of flare-ish since last December, with odd rashes, fatigue, malaise, fevers, insomnia - all symptoms that I chalked up to other things (of course....)

I finally saw my family doctor about my insomnia in March when I realized it was affecting my work, and he suggested a) I might be depressed, and b) I should get some additional blood work done to rule out anything lupus-related. So I had the blood work done, and went in for my regular annual visit with my nephrologist, which had been scheduled months in advance - things have been so stable, he's been happy with regular blood work and annual visits.

My nephrologist said something was definitely going on with my kidneys, and scheduled a biopsy, which confirmed Class III nephritis, and he put me on prednisone and Imuran, and things are settling down on the kidney front.

During all of this, I tried to get an appointment with my rheumy, who was on sabbatical. The Rheumatology triage nurse booked me into the next available rheumy appointment, which I cancelled. Perhaps it was a dumb move, but I didn't want to see a random doc, if I needed to see someone else, I was going to see someone of my choosing. So I got a referral from my family doc. 6 weeks later, I get a notice of an appointment in September from my first rheumy, and not the one I wanted to see. This means I won't be able to see a rheumy until 6 months after I am in a clinically confirmed flare..

So I start trying to figure out what the blazes is going on. It turns out that the rheumy I'd asked to be referred to looked at my file, and said "she's a patient of Dr. X, so he needs to see her" and sent my file back to my original rheumy, who of course is on sabbatical. And because I haven't been in to see my rheumy in a couple of years - I've been healthy!!!! - I've been de-rostered, meaning that I'm treated as a new patient, and can't get an appointment right away. I was never informed that if I didn't go in within a certain period of time, I'd be taken off his roster, and I basically wouldn't have a rheumy. I explained all of this to his secretary, and all she could offer was that if I'm feeling really bad, I should call the rheumy on call.

In the meantime, my kidney function is improving, but to be honest, I'm still not feeling 100%, I still have fatigue, brain fog, and fevers. And now I'm angry and feeling let down by the health care system as well.

So, opinions please! I have an appointment with my rheumy on September 2nd - how would you all address this? To be honest, I don't even know if my regular rheum has any control or knows about the system, so while I'm very frustrated and angry, I don't want to blow up at him if he didn't know. But I want to discuss it, and to discuss it in a way where hopefully I can maintain control of my frustration and anger (I tend to cry when I'm angry, which really takes the sting out of it...)

I'm also kind of worried that he'll tell me I should have just emailed him (I work for the university where he has a faculty appointment) but I've always resisted using my position to get any kind of preferential treatment in the health-care system - it goes against my very Canadian tendency to respect the queue, but the downside to that is that I did have an option, which I didn't take, so is this really my fault...?

Thoughts? I've considered writing it all down rather than trying to relay it verbally, but I also haven't figured out what my desired outcome is, except to have been seen 4 months ago...

Lisa
 

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Hi Lisa,

Let me see if I have gotten this straight.

You are seeing your old rhumey Sept. 2nd the one that was on sabbatical?

If that is right, maybe ask him what to do when he is gone and you need to see him.

I guess I am a laid back person. If you are getting into who you want, I would let it go. Stressing over this isn't good for your body and lupus.

Sorry I am not much help.
I hope you get to feeling better.

Love,
Lyn
 

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Hi there,

I can understand your frustration and I'm sure we've all experienced the let downs of systems at some time or another. I think that you explained the situation here well enough and I would mention it to your doc in that way but without getting angry (as you say the system is certainly not his fault). He may well tell you that you should have e-mailed him and if he does I'd keep that option in reserve if ever needed again - after all, we know you're not going to abuse of that if you don't need to. I also wouldn't feel that it is your "fault" - It's just one of those things in life and we know to do differently another time.

I think that generally speaking, even if we are well, it is best to keep a scheduled 6 month or 1 year appointment (whichever is needed to stay on the books) so as not to fall into this trap.

I hope the appointment goes well and that you can finally discuss your flare and where to go from here.

hugs :hug:

Katharine
 

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Hi Lisa,

Good luck with your appointment on the 2nd...not really long to wait now!

As his secretary has said, give the on-call Rhuemi a call if required before then!

Try not to get into all this at your appointment....you need to be focusing on your health issue first and foremost with your specialist! At the end of the appointment perhaps mention you have a few difficulties and what should you do for the future. Ask him what happens inbetween appointments if you are ill and who to contact for care etc (he may be willing to give interim care by e-mail/phone).

Take care,
 

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Hi Lisa, sorry you are having to deal with this as well as a flare. The others have given good advice, it isn't your fault. Do as Lesley advises though and mention it at the end of the appt so it doesn't take all your time up. Maybe he won't mind you emailing him, I hope you manage to get something in place that you are happy with.

Take care

Deb x
 

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Howdy Lisa,
Sorry to read of your troubles, both physical and with our wonderful Albertan medical system.
I think I would simply lay it all out and if the specialist acts up, throw something heavy and lethal at his head.:lol:
All the best.
Douglas+
 

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Lisa_S
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441 Posts
Discussion Starter · #7 ·
Thanks all. You're right, the focus for my appointment needs to be my health, so thanks for that reminder.

At heart I'm a "systems" person, so nothing is more likely to drive me crazy than systems that don't seem to be working.

Lisa
 
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