Sandy 's Journal

It's been apparently a very long time since I've been on here- though I do read Adam's information and have attended some of the webinars over the years.  It's been about 7.5 years since the surgery, where I had the aneuryzed(?) portion of my aorta replaced with a dacron tube, and, since they were in there, my bicuspid aortic valve was replaced as well. 

In January of 2024 I quite suddenly became quite ill, and ended up in septic shock before what was wrong was determined.  Turns out the bacteria pseudomonas aeruginosa had taken up residence inside my body.  That is quite a common bacteria - according to everything I've read - and most people resist it quite easily.  BUT - for people with artificial body parts - the bacteria can latch onto that artificial body part and then form a 'biofilm' to protect itself when bombarded with antibiotics.  After my initial treatment, the bacteria took over again in about another week, resulting in further tests and questions about what artificial body parts I had.  I was on IV antibiotics for a total of about 10 weeks that time, and stayed negative for 6 weeks of testing and another 2.5 months, and then it re-energized again.  

So back in (another) hospital for about 11 days (until blood cultures came back negative), another six weeks of IV antibiotics at home and now oral antibiotics for life is the plan.  (I had TEE's twice to look at the artificial valve - and nothing was seen.)

A 'radioactive' PET Scan in November showed that it is most likely that the bacteria has attached to the dacron tube that replaced the ascending aorta, but there are differing opinions.

I am sharing this here in the hope that it will be helpful to someone else.  I can't offer preventive advice (which is always my goal) - as I have no idea how/why this happened, but I can share that it did happen, and if it has happened to others - you are not alone.  

A

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...