I know this has been discussed but I was told at my EP appt yesterday that the whole "female" part of the CHAD score ... that if you have JUST that then it doesn't count but if you have more than just being a female then it counts. That makes ZERO sense. right? I was on xeralto but then had an aortic stent (see below) and was on aspirin for that and bleeding out of everywhere so everyone agreed to stop the xeralto for now. I am going off the aspirin soon so I could restart the xeralto.

Also I am on dofetilide..was on 500 mcg when I left hospital a year ago. Saw EP doc in may and he cut it to 250 because QT was around 510... (it was that on the 500.). Then yesterday they said they want me to go to 125 IMMEDIATELY. never mind that you could not GET 125 anywhere.. I was like -I've been doing this since January- have had oodles of EKGs and NOW you are going to switch it? I have been having more PVCs and stuff like that. That played into their decision I think. I did get my local pharmacy to get it in stock for me . yippee.. but then they talked about a drug with severe pulmonary side effects.. great.. and ablation. I have gone into afib once this year on the 250 mcg and had a cardioversion.- successful. But I do not get how all of the sudden this is an emergency.. when my QT has been that for a year.

And I am adult congenital. I. had an aortic Stent put in in May- twice.. I had developed an anneurism. That is going good but my adult congenital doc, who I like, doesn't like to dip his toe into saying what to do for the a-fib. So I am trying to find a place that might have a good adult congenital program but also have a good take on afib.. which an adult congenital program should do.

I go to UofMichigan which I really do like.. but recently I have started thinking maybe I should go elsewhere. At least to get a second opinion on it.. Any thoughts?

Amy



Edited 1 time(s). Last edit at 12/04/2019 05:04AM by Carey.

Are you sure your QT interval has always been over 500 or has it widened recently? It seems very unlikely that they would have given you a 500 mcg prescription with a QT that wide.

Before dofetilide it fit the criteria of being an candidate.. it was below 400. When I took the 500 mcg they let me go home from the hospital with it around 508. Then they let me stay on the 250 with it being the same. Now it actually went up a smidge to 511.. but I was having oodles of PVCs when they did this last ECG. So they took me to 125 mcg and I am suppose to get an ECG in a week. So yes it actually has been that high. it seems all very odd to me as well.

I'm not going to second guess a bunch of doctors way smarter and educated than me who actually have all your medical details, but they were definitely pushing the accepted guidelines. Guidelines say you should have been on the minimum dose or none at all when you left the hospital. But maybe they had sound reasons for doing that. After all, you're not exactly a simple case and you're dealing with a competent group of doctors. I doubt they did that through careless error or incompetence. When you see them next you should ask what their reasoning was.

As for a second opinion, that's always a good idea, especially when you're a complicated case.

Thanks.. I did talk to my congenital doc yesterday.. he did not have a reason. They said something like.. "sometimes we don't follow that." um ok. LOL. I am doing an EKG in a week on the 125.. I feel OK with that. the first night I was on the 125 I slept like a baby. which seems odd to me.