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May 12-18

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It’s officially been 6 months since Aubrey got out of the hospital after her L-vad placement. We haven’t posted any updates in a while so I wanted to fill everyone in on what’s been happening these passed few months. You all were such AMAZING prayer worriers when we needed, so I thought it was only appropriate.

After our last post, life got very busy with weekly follow appointments, biweekly in home nurse visits, echo’s, 6 minute walks, adjustments to the L-vad settings and so much more! Aubrey has adjusted so well to the L-vad, but it was a huge lifestyle change getting used to being plugged into the wall or on batteries. She’s been a trooper tho! Her right ventricle is still trying to catch up to the strength the left ventricle now has with the assistance of the l-vad. Real quick we will go over some numbers…. A typical, healthy person has an ejection fraction of 55-65%. Before Aubrey got her l-vad she was less then 5%. When she got her l-vad her ejection was 45%! This is where it gets kind of tricky tho…. That was the left side if her heart. The right side was also struggling (which is why she had a TEMPORARY R-VAD that was removed in the hospital after she got a blood clot). The plan was never to keep the R-vad, it was just to use temporarily to give the right side some time to gain strength. 

When we went back about two months ago for a follow up they noticed the right side was still struggling and trying to keep up with her left ventricles new found strength. The best way to help the right ventricle was to turn down the L-vad’s setting which actually immediately reduces her ejection fraction back down to 20-30%. This is STILL a HUGE improvement from 5% and a measurement Aubrey had lived with for many years so it doesn’t put her at ANY additional risk what so ever. It’s completely safe. The main difference was when she was set at the original L-vad setting she had a ton of energy, but when they turned it down she lost some of that energy and we noticed she is back to sleeping a lot more again. We do plan to turn her L-vad back up at the next visit! 

As for life now, Aubrey is back in college doing 2 classes at a time, she is still living with her Papa Terry and grandma Kathy, who are her main PCA’s which is AMAZING and we can’t thank them enough for all they do (daily/weekly driveline bandage changes, medications, housekeeping for her etc). We could not have gotten thru all of this without them! Chapo, her bff and sweet dog is by her side all the time (learning not to step on her driveline or have accidents on her equipment🤦‍♀️…. It’s happened lol!). She is driving and recently accepted a work study position at her college. Her cardiologist is eager to move on to the next step which is transplant. He is very optimistic that her wait in terms of medical necessity and how they rank the need of recipients would be high. Aubrey is doing fine in the L-vad and is still recovering from the emotional/physical effects of the complications/infections and months in the hospital that we decided to pause the work up for transplant for a few months, but when she is ready we will all be here having her back and ready to support her however needed. 

She just got the call this week from her L-Vad coordinator that it’s officially been 6 months since discharge so her follow ups, phone follow ups etc will calm down a bit, so it reminded me that I should  probably post an update! Again, thank you to everyone that supported her thru this! Once we start the transplant process I will be updating this page again. We couldn’t have done this without everyone’s support! 

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