Long Overdue Update

Wow, it’s been a long month.

I’ve lived with Wally the Wound Vac (yes, it has a name thanks to my friend Sue) for 4 weeks now.  Yes, it’s a huge pain in the neck…and shoulders…but IT’S WORKING!  My tunneling wound went from 10 cm deep to about 3 cm deep in the 4 weeks I’ve been wearing it, so it is totally worth it.  The visiting nurse comes Monday, Wednesday and Friday to change the dressing and the drainage canister.  Each visit takes about 45 minutes but it doesn’t hurt.  It does smell.

The one major problem I’ve had, which has nothing to do with the wound vac itself, is that so far my health insurance company, United Healthcare Oxford, is refusing to cover it.  It’s insane.  It’s literally the only thing that has worked after 2 months of daily packing and dressing changes, a hyperbaric chamber, and weekly visits to the surgeon for debridement.  They claim it’s “not medically necessary.”  What?!  My doctor’s staff has been fighting it but so far the insurance company has not reversed it decision. 

Obviously, I still have the wound vac and I’m still using it and it’s working.  The problem is that the wound vac requires supplies—specifically, canisters where the fluid drains, and the dressings and suction tubing which the nurse changes.  Because the device is not currently being covered by insurance, 3M, who provides the device, will not send me any additional supplies beyond what I received in the hospital.  This has meant stretching each canister to longer intervals, and seeking out additional supplies on my own.  My visiting nurse has some available that she has provided, and when I posted about the problem in one of my Facebook support groups, another member shipped me some extras she had left over from her treatment.  Thus I’ve managed so far but it’s crazy that it’s come to this.

I saw the surgeon on Monday and he was very pleased with the progress.  He told me to take a 1-week break from wearing the vac, to give the wound a chance to air out a bit, let the skin recover, and just get it good and clean in the shower for a while.  So for the first time since September 27, I’m walking around unencumbered.  I feel so free!  I will see the PA next Monday and we will decide what the next treatment will be and whether or not I will resume the wound vac.

So now that the wound vac is off, I can see what I look like.  It’s not pretty.  My breasts, especially the one with the wound vac, is pretty severely misshapen.  My body is full of wrinkles, puckering, and sunken areas.  My breasts extend around to my back and are flat (I call them hamburger buns), heavy, and look nothing like a normal breast.  My abdominal scar is ragged and hard.   

I was always aware that the goal of the initial surgery was to do the fat and blood vessel transfer, and a follow up surgery, commonly called phase 2, was often necessary and would focus on more cosmetic concerns.  Many women in fact opt not to do phase 2 if they are satisfied with their initial results, but most people need more surgery.  There is no timetable for the second surgery and it can usually be scheduled as soon as 3 months after the initial surgery but can delayed based on the patient’s schedule.

Unfortunately, this will not be the case for me.  Because of all the issues I’ve had, the surgeon has told me to expect 2 subsequent surgeries, not one.  The first follow-up surgery won’t be scheduled before next spring. The surgeon wants to wait about 6 months so that all the scar tissue is fully established and has time to soften.  In addition, because so much cosmetic work is necessary, it will need to be split into multiple surgeries.  So I get a phase 2, and phase 3, and then we’ll see. 

These follow up surgeries will be nothing like the initial surgery.  They will be outpatient, only last maybe 2 hours, and recovery will be relatively easy.

This year has been the worst year of my life.  I was hoping that when we turn the calendar over to 2024 I could start to rebuild my life a bit and figure out what my future will look like.  Maybe even take a vacation or two.  However, with 2 more surgeries on the horizon, I’m not sure I’ll be able to do that.