frustrated.. Mad.. relieved all at the same time....

[Robyn10217]

So I have been in rochester, MN at Mayo clinic for over a week and a half doing tests... For months my aortic pressure gradient has been severly high. Will symptoms my doctor from home sent me to mayo the next day after another bad echo. So I got there and ran ekg, echo, labs, chest xray... ok they declared that I would need surgery and because I am a " Unique" case they would have to preform a the surgery at a different route due to scar tissue and inflammation from my lupus. The plan was apicoaortic conduit surgery. But because of my lupus causing such problems they were worried that I will have scar tissue develop & or my heart function would change and will need a transplant. So they brought my case to the board of cardiology to discuss my case to determine the safest way to do the surgery. THen I got a call to do a heart cath, I did it and it came back with the gradient not a servere. But I wasnt having any chest pain and I was feeling really good so I was expecting it to come back good. So after test for the heart and test for the surgery ( vascular, pulmonary, CT) They called off the surgery. I am glad that I dont have to have surgery but I am upset that I was told the worst and had to do all these tests.. And WHEN it comes back do I really I have to do it all over again???

 

[CATDOG]

Oh swell. What a ride on the lupie coaster. Sorry that you are going through all these trials and tribulation.
So do nothing for now??? I'm not sure what "apicoaortic conduit surgery" is but I'm glad you don't need it right now. Perhaps it wasn't all for nought. Your docs now know what they are looking for. They are better informed if things get worse again. Glad you are feeling better for the time being.

 

[Robyn10217]

for now I will start chemo (Cytoxan) treatments and go back in 6-8 weeks.. and of course if symptoms come back or get worse.

 

[Duffey]

I understand your frustration. It's hard to measure the severity without the tests so it's hard to say whether you'll need them all redone. Hopefully it will be a long enough time that you will have forgotten what you've just gone through.:smile2: