Sandy 's Journal

Six months after - my strongest feeling is gratitude. For the medical professionals, for the support of friends and family, and very much for all the information and support that continues to be shared on this site. Thanks and best wishes to all.

My surgery was four weeks ago today - and my follow up visit was one week ago yesterday. I did well in the hospital - was out of ICU early Thursday morning following the surgery - and walking later that day. I was put on oxygen after a couple days - and apparently had an a-fib episode, and was put on the amiodarone (sp?) which I will finish next week. Was released Monday morning. Stayed in Durham overnight (as we had the airbnb for a week) - and my companions gave me pain pills on the four-hour trip home (we also stopped to walk). Then I lost the next three days - have VERY limited memory of anything that happened after Wednesday morning until Saturday morning. I had not heard people talking of that - but I definitely lost those three days. My sister says I didn't remember anything of the hospitalization during that time, and I kept asking her the same things over and over (fortunately, she had come to stay with me). I was dizzy and nauseous most of that two weeks - but got my staples out on Halloween and decided I must have had staple poisoning - because I almost immediately felt better. Have felt better, started walking more after staples out, and am beginning to work from home a little bit. Am truly thankful, greatful and blessed - and mostly posted this because I had not seen anyone else talk about losing three days - but apparently it's a not uncommon effect of the anesthesia... They also told us in the follow-up that I was anemic (as most people are) when discharged from the hospital - which we had not heard before - and may have explained some other symptoms. I have seen others talk about drinking lots of water - they said I could go to the local hospital for IV fluids if I wanted when I was dizzy - but I just decided to try drinking more water - and over time it worked. Thanks to all for all the information shared, and again, especially to Marie for recommending Duke.

Had a brain MRI for the study today - they asked if i'd like music - I said sure... First song - "Another one bites the dust"! They told me I had to quit laughing because my head was moving... Hope I still think it's funny tomorrow - but it's great to go in laughing...

Many thanks again to everyone. I've double Checked the list I made from being on this site and think I'm ready. Thanks again to Marie for recommending I contact Duke - I'm going to be a study participant for the 'best' temperature to cool to. Truly grateful for this site and all who have shared.

I received a call from Cleveland Clinic this morning - the surgeon assigned would be Dr. Bakaeen. I haven't seen his name in any threads on here (though, of course, I haven't read everything). Does anyone have any info to share? I did search his name on (as well as off) here - and see good reviews. Happy to know they will do the surgery (as I wait anxiously for news on Evan). Thanks for any feedback.

Maybe since the arch is a ways from any valves, I haven't seen anything on here from people who have had to have a portion of their arch replaced. Is there anyone on here who has or has had that? I've seen that there are places that do 'regional antegrade cerebral perfusion' which allows your brain to not have the blood flow stopped - has anyone had that? Does anyone have a good way to ask a hospital if they perform that? Thanks in advance.

A special thanks to Andria - for asking many of the questions I have, and to all who provided feedback to her (and thus to me and probably many more). Still have lots of questions - so I'm still reading...