What do you do when you feel ill?

[gwenllian111]

By this I mean, if it's the weekend, or in the evening, and you suddenly felt ill - would you go to the GP (in the UK we have an out of hours GP service), or would you go straight to the ER?

I don't see much point in seeing my out of hours GP really, only in that, they can't do bloods, and I tend to find that their knowledge of WG is so limited, that they can't really help... The last time I felt very ill, I had severe pain upon swollowing, so I went to the GP first. The doctor looked at me as though I was compeltely wasting her time, and sent me home. I cried walking back to the car, as the pain was so bad! So I took myself to the ER, and as it happened, I had an inflammed vagus nerve, and my bp and pulse had also dropped very very low. I was admitted on IV morphine and IV pred for nearly two weeks, - and the GP thought there was nothing wrong with me!

So, anyway, when you're ill - do you tend to bypass the GP and go straight to the hospital? Or do you have direct access to a rheumy?

[pberggren1]

That's a tough one.

If I suspect it is a flare I get on the phone right away to my Rheumy. If my Rheumy is away I go to my GP or ER. I guess it depends on how bad it is and how desperate I am. My Rheumy was gone for 2 weeks over Christmas break but was able to get a hold of my ENT. If I wasn't able to get a hold of my ENT I would go to my GP or ER.

[Jack]

Very much depends on the symptoms I'm getting. If I suspect a Wegener's flare, I would be on the phone to the renal department who look after me and they would tell me to come straight in for blood tests or a consultation if it looked serious.

Before Christmas, I had a pulmonary embolism and rang my GP. He told me to come in immediately so that he could check me out. He then rang the hospital and got me onto an assessment ward within the hour.

If I just feel crap (quite common), I wrap up warm and sit in front of the TV.

I only go to ER for obvious stuff like broken bones.

[Sangye]

It depends what's going on. I have a pretty good sense of my Wegs symptoms--some flare up from over-exerting but resolve with rest, and others signal a more serious flare. I also know my general low energy vs the extreme weakness I get when the Wegs is very active.

Because JHU is 1-1/2 hrs away, if I have an urgent problem, I page my rheumy or hematologist and ask them what to do. Sometimes they say go the the ER, sometimes just wait, maybe just get blood work in the next few days, etc... I can also email my rheumy and hematologist during the week for general, non-urgent questions and to ask if I need to see them or get a test done, etc...

[pberggren1]

Phil Seo is You're Rheumy, right Sangye?

What does a Hematologist do?

[elephant]

If I feel like crap and have a fever over 102, I will call the doctor. If there are more symptoms along with it like nausea, chest pain, dizziness , joint pain, shortness of breath ..I'm going to the Emergency room. No fever, but somethings not right I will leave a message with the nurse. If it is after hours and have a fever of a 102 for a couple of days and not getting better just go to the emergency room. Or if you feel something is not right just go to the emergency ( after hours).

[Sangye]

Phil, my hematologist technically just takes care of my blood clot issues. But he likes to be more involved than that. He's an exceptional doctor who always wants to know everything that's happening with all his patients.

Last spring when I kept getting hospitalized for pneumonia but still felt awful, I couldn't get into Dr Seo or get any messages to him. It was a weird thing. I emailed my hematologist with the situation and he got me right in. He's the one who increased my Cellcept to 3,000 mg "just in case" it was a Wegs flare. That hunch saved my life.

[pberggren1]

That's awesome Sangye. It's good to know you have a good and caring doc like that. He sounds fairly knowledgable about WG.

[renidrag]

I am seeing a Hemotologist on the 19th for a follow up to the embolism 12/12/09. All my Doctors are affiliated with the same HMO here so they can all comunicate. What questions should I be asking? I just assume the filter is working and the coumadin and lovenox will level off my INR. Then get off the Lovenox. What will they be looking for?
Thanks, Dale

[pberggren1]

I'm not even sure Dale. I not sure what Coumadin and Lovenox are. I think Coumadin is a blood thinning drug? What exactly is an embolism and INR? I think others like Sangye will be able to help you with this one.