Things changed and I did not HOCM, but a sub-aortic membrane. I had open heart surgery to correct it and removed some extra muscle April 10, 2015. I am now going into surgery next week at KU Medical Center in Kansas City to have my pacemaker/icd removed that I do not need and really never did! I have been mis-diagnosed 4 times until I went to KU Med and met the right doctor who gave me the correct diagnosis. Wow! Shock and surgery asap as I was in congestive heart failure. I will be glad when this last surgery is done and over with. To all that are waiting for surgery, good luck and waiting is the hard part!
Wow...how a easy test can change everything! I almost hate to write this journal here...feel a little guility. Had my TEE test yesterday and I was hoping to get the news that I wasnt quite ready for surgery...well...it was much better than that! Apparently a muscle that lies just under the aorta is enlarged and making the aorta shoot the blood out pretty fast and thus my heart is not filling with the blood it needs. The aorta valve is a little thickened but not stenoic (msp)! What...are you kidding.. was my reaction! WONDEFUL NEWS NO VALVE REPLACEMENT NEEDED. My heart rate is alway elevated so they need to get it down hopefully with meds if not the worst that can happen may be a pacemaker. I could have just cried...I can't believe it. My husband and I just sat there is awe and feeling truly blessed. I just kept asking...so no valve replacement?? Doctor said not in the near future but I can't predict 10 years down the road!
So, I wanted to share my good news here, since i have relied quite a bit on the news here and other patients opinions which have helped me so very much!
I will probably check back every now and then to keep up with some of the people I have met here.
Please take care and thanks for such a great place to seek support and information.
I have been experiencing dizziness or lightheadedness for lack of a better description for a couple of weeks now. I did go to my GP and he said was am "little" low on Potassium so they gave me a prescription. I was suppose to go back this week but the doc had a family emergency and now I don't go in until after Thanksgiving.
My question is, has anyone that has Aortic Stenosis had this symptoms and should I call the Cardiologist?
They don't last long. Seem to come and go and I can go a couple of days and not have any and then the next day have several! I have not fainted and they are not caused by excersise. I can be sitting at my desk and get them. Any comments are appreciated!
I do not have a date as of right now, I do not have a lot of symptoms. Swelling in the ankles, a little out of breath if I take stairs. I am in the process of checking out my options for surgery. Would like to do it close to home, but the closest hospital does not do minimally invasive surgery. No sure about the mini-cut.
I am looking for patient info from people who have had a mini sternomy (msp) and then people who have had the minimally invasive (maybe robotic) surgery. I can travel about 3.5 hours away to possibly get the minimally invasive and wonder if it really isn't a better way to go..less blood loss and healing time.
I am scared to death and even though I do not have a date, the doctor says it will be sooner than later!
I have read a lot on this site and seems like there is so much information...I am sure I will come to lean on it for support.