Wednesday, May 29, 2013

Shunt surgery date, Valve replacement(s) surgery date set as well.

I talked to Dr.Bragg's Secretary today and as well afterward talked to the Cardiothoracic Surgeon's Secretary and here are the pile of dates we have set. I totally had thought the heart valve surgery would be in early Fall but she (Laurie)  asked me to ask Anna/Dr.Bragg this morning when I first talked to her (the Cardio-Surgeon's Secretary) to see how long after the shunt surgery Dr.Bragg would release back to Cardiology. It turns out Dr.Bragg will release me a month after her surgery (was my guess, obviously had to many surgeries with her!) and the heart-valve surgery is scheduled for Weds, July 24th at 7:30 with pre-op Xrays, EKG, etc the day before (23rd). I also meet with the Surgeon and Dr.Earing June 20th to go over the plan for this surgery.

Dr.Bragg's shunt surgery to move the TPL shunt from the pleural space and to place the Codman, programmable valve is then set for Friday, June 21st. They give the time of surgery the day before when the nurses/anesthesia call. Below are all the up-coming surgery dates as well as pre-op appts. While Dr.Mitchell and Dr.Earing are at CHW and see pts in clinic there + surgery itself is at FMLH (much like Dr.Bragg sees her pts at AFCH but does Adult pt surgeries in the connected Adult hospital). I've had many other surgeries at FMLH in the past so it should be ok, anesthesia typically has gone far better at UW but I also know Dr.Earing will be on this and with my Neuro-Endocrine dr at FMLH she can guide the use of the steroids/cortisol replacement pre/post surgery which will also be good.

Surgery date(s)
May 31, Pre-Op Appt, PCP, Dean
June 5th, Hand Surgery - Dean Medical Center
6/20, Meet with Cardiothoracic Surgeon (Dr.Mitchell), and Cardiologist - CHW
6/21, Dr.Bragg shunt revision to move TPL shunt distal end to abdomen, replace valve
7/23, Pre-Op Appt, CHW (Xray/Imaging, EKG, Anesthesia, etc)
7/24, OHS-valve replacement(s) surgery, 7:30-FMLH (Dr.Mitchell, Dr.Earing)

In an email this morning my Cardiologist mentioned they are trying to plan a ACHD-patient education lecture series and thought I might be interested in helping once recovered from the valve replacement-open heart surgery + suggested I should consider getting involved. I think it sounds kind of neat! I am typically always interested in programs to help other patients or providers better understand whichever issues it is we're working on, in this case Adult Congenital Heart issues.

The thoracic valve is being as aggravating as ever today, and especially bad tonight; I was talking to my Pain Mngmt dr via texting and she asked me to please call Dr.Bragg and let her know + suggested I call the on-call staff tonight but I will wait until tomorrow likely. YUCK! The worst part is definitely how irritated my neck/shoulders and mid-back are, right now secondary to the valve area discomfort. I am leaning back against pillows but still terribly uncomfortable and un-pleasant. I HATE THIS!

On a side note I am driving down to stay by a friend (MPS family) who lives in a suburb outside of Chicago the wknd of Father's Day,in June,  there is an MPS meeting we are planning to go to together. Her son has  a shunt and dx'd with MPS II + a cutie, always reminds me a lot of Zan and similar in age as well.

I'll try to update if there is anything new, the Secretary for Cardio-Surgeon's ofc had left a VM late this afternoon that I missed asking me to call her back so I will do that in the morning before or after a dental appt I have in the morning.
Thanks for stopping by,


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