Update
Update
Okay, I have a little more news, though not much.
First of all, trying to schedule this stinkin' stress test is stressful enough in and of itself. My card wanted me to schedule it with my EP and talked to him about it 2 weeks ago. I was given the impression that his office would call me. When two days passed and they hadn't, I tried calling them. I was given to the voice mail of their "scheduler" and left a message. Didn't get a call back that day, or the next morning. SO I tried calling again. This time I actually spoke to the scheduler and told her what I needed. She said she'd have to talk to the doctor and she'd call me back... 6 hours later I still hadn't heard from her. So I called again. She tells me she hasn't talked to the doc yet, but he's just walked into a patient room and will catch him when he comes out and call me right back... I never heard from her. The next morning I call AGAIN. I get her voice mail and leave a message. You guessed it... I still didn't hear from her. So I call again and this time she's gone for the day! I asked if there was anyone else who could help me because I have no faith in this person calling me back. I'm told that the office manager will... call me back. 30 minutes later (and 15 minutes 'til closing) I still hadn't heard anything, so I called AGAIN. This time, I get put through to the office manager. When I explained what was going on she was very appologetic and said that they had just fired their scheduler for this very thing. When I told her WHEN I'd made these phone calls she responded "Oh, no. Don't tell me my new girl is doing the same thing!" Yes, yes she is. So the OM tells me she'll get right on it and take care of it herself. She even said she'd call me that evening around 8 to let me know what she'd found out. Low and behold, someone in their office was ACTUALLY capable of making a phone call! I got the call, but still did not have my stress test scheduled. She said she'd call me in the morning... Morning comes and is nearly gone and still no phone call. I call them, asking for the OM (she told me to) and she tells me she's waiting to hear from the doc. Apparently when they let the old scheduler go the doc started scheduling his own procedures and no one other than him knew his schedule (What?!). She says she'll send him a message and hopefully she'll hear from him by afternoon. Guess what... No phone call. The doc didn't even call her, nor did his nurse, who she says she paged and emailed several times. She tells me that she'll get it handled and call me. Nothing. By Friday I'm still hearing the same song and dance. She tells me that go into the office especially and she'll call me on Saturday. No phone call. So here it is Monday, and once again I'm calling. This is when she tells me that no one in their office knows how to order this kind of stress test, because it's so rare (an MVO2). I'm confused by this, since I've had at least 4 that I can remember. I told her this and she asks who did them. I told her, and then recommended that she call my card to find out what needs to be done. And I FINALLY got a phone call back from her around 4 o'clock today (after I'd called her 2 times before that)! I'm "tentitively" scheduled for Thursday at 1, with some other doctor!? When I told my card all of this she said if she'd known they were going to schedule it with another doc she would have scheduled it herself.
Okay, so that's the saga thus far on my stress test (I did say it was stressful). On to what my card had to say about the conference with the other cards.
My card says that she presented my case to cards such as Carol Warnes and Gary Webb. And even they aren't sure if the beta blockers are helping or harming. Apparently there isn't enough data yet to know if treating ventricular disfunction with betablockers is the right thing to do. It's only a guess. So right now we're going to wait on the results of the MVO2 and decide from there if we're going to cut back on my toprol. I think my card is leaning that way at the moment. She talked about cutting that back, then trying to increase my vasotec some more (right now I can't do any more because I'm light headed enough at the 40 mg/day), then add aldactone to the mix.
The other thing she talked to me about is sending me off to either the Mayo or Dr. Webb (he's in Philly now, though he used to be in Toronto). She asked me if I had a preference. Personally, I want to go with whatever will get me the most answers, but I don't know who that would be. The advantage of going to the Mayo is that Dr. Sebrina Phillips (one of the ACHD cards at the Mayo) has seen me (when she was in Texas) and knows my case. Dr. Webb, on the other hand has never seen me personally, but my card did send him my files when we were considering my valve replacement 4 years ago, so he's not completely unfamiliar with my case. My card tole me to talk it over with my husband and figure out where we'd rather go... I don't have a clue. Plus, we still have to figure out if insurance will pay for it, and how we'll pay for the flight and hotel to get to/stay in either place, not to mention finding a time when I won't miss school (work). I told my card the soonest I'd be able to do anything would be Thanksgiving, but my husband is thinking more along the lines of Spring Break. I had hoped to actually get to go on a vacation with my husband this year for Spring Break
... Oh, well.
Anyway, I just had to vent. I know you all can't make a decision for me, but does anyone have an opinion?
Thanks,
