gaining clarity

Family & Friends~ Thank you for your patients as we wait and pray together. I know I've kept you in the dark the last few days, but we were in the dark too; being in limbo while Hoag and UCLA proceed with the news. I didn't want to post news when there wasn't any and it was too confusing to share because of working with two hospitals. Believe me, my head was spinning with confusion and I wanted to spare you that same pain.

I know this might seem like a sport, but my UCLA adult congenital cardiology team took the lead. They have been MOST helpful in initiating authorization, working to schedule the surgery, and have excellent "hand offs." They were willing to answer the 30+ questions that I emailed them and replied back with all 30 questions answered in 15 minutes; now that's what I call service! Because of the complexity of my case it was made clear that I have to have a cardiothoracic surgeon do the replacement surgery and with that said the UCLA team is 99% confident everything will be approved for me to have the surgery up there. If there are any issues that come up, they will be sent to the hospitals' medical director and will make a great case in my favor. So keep praying that everything will be approved. Let me share with you some details as they were many of our questions and perhaps yours too.

SAFE MODE
There is nothing I should or shouldn't be doing while in safe mode except to minimize exercise or activity if I feel poorly. There are no medications that are given to relieve the discomfort. Being in "safe mode" doesn't necessarily damage the heart. Most feel bad when their pacemaker doesn't increase their rate with activity and over the long-term, that would be a bad thing. It was thought strange that I feel worse at night while resting as most feel the opposite, while they do activity.

THE DEVICE
Because the battery is housed within the pacemaker devise, the entire pacemaker generator will be replaced. The wires do stay as long as they don't see any issues when they test them during the surgery and the entire pacemaker will be replaced with the newest version. It will be the same 8-10 year average with the replaced pacemaker. Wires generally are made to last forever and if they don't work properly, it is a bit bigger surgery. If that ever were to happen, the entire pacemaker and it's wires would be replaced. The newer pacemakers shouldn't be vulnerable to technology advancement, but specific questions I plan to address with another physician.

THE SURGERY
The surgery is expedited as STAT. This is because of my 3 month window and not wanting things to linger. It also means that any contact I make or my case coordinator makes has to be answered within 24 hours. It's likely they will be able to go over my previous scar without having to make a new incision. They do expect to run into scar tissue, but usually it's not a problem. I will require no prophylactic medications nor require to discontinue any of my current medications pre or post op. I will be given antibiotic at the time of surgery. I might be required to have a pre op x-ray to verify the location of the pacemaker, but more so to look at my lungs before anesthesia. It's likely I will be on a respirator for the short term anesthesia with ventilator, but I shouldn't wake up to it in. I will not require chest tubes nor will I be considered an ICU patient. It is expected that I will be outpatient, although this could change if there are any complications or just at the surgeons discretion. It is not necessary for me to meet with the surgeon unless I prefer to at the day of admission. If at UCLA, my surgeon will be Dr. Laks who has done my major heart surgeries at UCLA. If the surgery will be at Hoag, the UCLA team will be in contact to be sure that the technical issues are understood.

THE RECOVERY
I should be score for about one week but able to resume normal activities after that. Jay has already notified work and once a surgery date is decided he will take some time off to "nurse" me back to health. There are no restrictions to flying post op; Kauai here I come!

Thank you again for all your support. I hope that by tomorrow I will have more news to share.