Very Uneasy!!! Frustrated...

[Robyn10217]

So I went to my cardio yesterday cause I had a really bad echo come back.. I have been battling a very very small flare... I mean sed rate was 25 CRP 4.5... But chest pain was so severe it was so uncomfortable just to sit, short of breath walking and I couldnt lay down... So saw the cardio, she comes in sits down and says well I think that we need to wait till your lupus is under control and do the echo again... now I have been on prednisone for 4 weeks, 2 weeks of 40 mg and the bumped me up to 60 mg that I have been on for 2 weeks now... I have no swelling or joint pain, no rash... I mean as far as I know my lupus is under control... I need you opinion, does this sound like lupus that could be effecting my heart? I was told I have severe aortic stenois & mitral stenosis... apparently my tricupid valve has some damage too but she wouldnt tell me... I feel like these doctors are just trying to make excuses, and if it is the lupus is causes heart problems, still why wouldnt you want to fix it??
Oh just to add, I had my aortic valve replaced 2 years ago, tricuspid repaired & partial paricardictomy...

 

[kfay]

Robyn, Have you contacted your Dr's at the Mayo yet to let them know what is going on? If I were in your shoes, I would have already made arrangements to have everything sent there again and be on my way there to have a follow up appt. with them. I go there as well, so I know how it works having a local cardio and one there as well. Sometimes it gets a little hard, but I don't have any problems going around my local guy and having everything sent directly to my cardio up there to review, which she always so graciously does for me.

What has been your follow up schedule to date at the Mayo? When was your last visit? I think both your surgeon and cardio at the Mayo need to be made aware of everything and if your local Dr. doesn't want to involve them at this point, tough. You have the right to have your records sent there...I wouldn't waste another day on it. I had my local cardio's nurse just today send my Holter monitor report up there.


Kim

 

[Robyn10217]

yeah a week ago today I sent my report & images there... I called on monday to see if they recieved it and they still havent... today I also called medical records and having them send me all of my reports of my echo since my surgery to me... I have been dealing with this on & off chest pain for a year now.. and every echo that I have comes back positive... I saw my doc at mayo sept 2009, I was suppost to see her sept 2010 but money kinda got in the way.. so my date isnt to far off.. You have no idea how much it helps when some one replies & knows what you are dealing with... Thank you so much. Robyn

 

[kfay]

Did you send the reports there yourself or did your Dr. send them? My Dr. was supposed to fax an EKG a month ago and I called my cardio and told her to expect it, so after a couple of days, she e-mailed me and said she didn't receive it. I was not happy. When I called my local, they had "lost" my chart for the week. So, long story short, if you sent it, then you know it was done and it just has to get in the right hands. If your Dr. sent it, it really might not have gotten sent when you think it got sent, so you might call and push for some kind of proof that it was sent. I typically ask for it to be sent to me at the same time, that way I know they've at least had their hands on it.

They'll get your stuff and get right back to you. Who do you see there? Who did your surgery? And by the way, I know someone who had the same thing happen with her mechanical aortic valve she got there, but hers only last one year. She actually grew a large amount of scar tissue underneath the valve and they had to replace it. That was almost 2 years ago and she is doing fine (that was her 3rd heart surgery).

 

[Robyn10217]

well It was actually the hospital medical record that was suppose to do it .. and the hospital is in fargo, not that far from mayo...so I think I will call tomorrow..lol I see Heidi Connelly and my surgeon was dr. Harzel Schaff...

 

[Lynlw]

I agree with Kim about some times things not getting sent as quickly as we think they should. Sometimes when we want to make sure records or copies of the different tests get to another doctor ASAP, IF possible we have picked them up and either sent them ourselves or if they were close picked them up at 1 hospital and drive them to another. It just seems to cause me less stress than relying on other people...the fact I just MIGHT be a control freak, probably doesn't help.

 

[ALCapshaw2]

YEP, the BEST WAY to be sure your records are sent out, to the proper address, is to Personally go Pick Up Copies of your Test Reports, CD's, Tapes, etc. and Send Them YOURSELF.

 

[Luana]

YEP, the BEST WAY to be sure your records are sent out, to the proper address, is to Personally go Pick Up Copies of your Test Reports, CD's, Tapes, etc. and Send Them YOURSELF.

And while you're at it, make sure you keep copies for yourself.