A Hopeful Update (from my mom)

We spent yesterday at Stanford with Becca. She went to have her pacemaker optimized. When they went to do it they found she was in A-flutter and had been on and off since March 25th (the day after we got home). Her flutter is very slow so slow her pacer does not pick it up all the time. Maybe that is why she has felt pretty crummy for about a month. She is also having many PAC’s which can bring on the flutter. They paced her out of the flutter and was able to optimize her pacemaker changing one particular setting pretty dramatically. All are hoping this will help her feel better.
She is also dealing with other things including hand tremors (maybe med related), feeling out of breath when doing very little and chest pain. Everyone is hoping with pacing her out of flutter and the optimization of her pacemaker she will be feeling better.
We will go back in a month in the mean time Becca will transmit via her pacemaker any chest pain or pulse fluctuations (could be flutter related), keep water weight down, continue to wear oxygen 24/7, and pray the optimization helps her feel better.
I can’t say enough about Dr. Feinstein and Michelle (his/Becca’s PH nurse). He is always asking questions and thinking! Michelle is always there, gets everything done!! Both know Becca so well!! Somehow they are keeping her on the children’s side so she can see Dr. F and Dr. Anitra Rumfh, the ACHD doc comes over. They KNOW she needs her PH team!! I guess that comes from being extremely complex even at the facility that specializes in Becca’s defects. I also need to shout out to Deb Hanish (I know she was sad to tell Becca she was in and had been in flutter for quite a while), Dr. Anne Dubin, and Dr. Kara Motonaga, who paced Becca out. And Dr. Tabitha Moe who is always there (here) for Becca when she is at home and works spectacularly with her Stanford team (Dr. Moe not only sees Adult Congenital patients but also sees adult cardiology patients if anyone needs a cardiologist)!!! It takes a Village folks it really does!!

Today Becca is hopeful…
We all are…
Thank you for your Love

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My Life As A Chronically
Ill Young Adult
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