“Man Up” Is Something We All Know; But “Woman Up?”
I’ve written about my November 2011 stroke, my late wife Sylvia’s January 2012 death from Alzheimer’s, and my journey back from my stroke and my grief with the help of my knowledgeable healthcare advocate, Lisa. These challenges have been difficult and, I feel, impossible to have managed alone. With my own SOUL SHERPA to handle the management of my and Sylvia’s medical and emotional care (not to mention the legal and financial technicalities) things worked out better than they ususally do in difficult cases like these. Although Sylvia did die from an incurable disease, she was always safe and surrounded by me and Lisa, especially after we had to move her into a skilled nursing care facility when it became obvious her life was in its final stages.
Managing the paperwork and the proper care decisions was fairly easy for Lisa. She made certain over a year before our respective downturns began, that I address every pertinent piece of paperwork Sylvia and I could possibly need: a Durable Power of Attorney for Healthcare, a HIPAA release, and a POLST. That just covered the medical front. There were also legal and financial forms. Suffice it to say, Sylvia and I had everything in place to manange both of our medical care plans in advance of needing them. I had the benefit of reviewing this paperwork with my general doctor, at Lisa’s suggestion, before I signed them in the presence of a notary.
Lesson: Be prepared BEFORE your medical emergency arises. Use the proper medical and legal documents to state your wishes (all of them) as thoroughly as possible. Then confirm with an independent third party who knows you and your health history well. You will be glad you did. Something extraordinary can change your health, emotional, legal, and/or financial status in the blink of an eye. The best defense is a good offense.
Lisa learned this first-hand in January 2007 when, suffering from intense pain on the left side of her mouth, she was told those four root canals she underwent over the last six weeks were not the solution to her facial pain problem. That proved to be an unnecessary cost totaling almost $10,000 for unnecessary care. At 46, Lisa had no professional healthcare agent named, just family members who tried their best to be of emotional and practical support as best each could.
Finally, after 10 weeks of continued pain, Lisa reached out to the Orofacial Pain Practice at U.C.L.A.’s School of Dentistry. It was on her first visit, still feeling the ongoing stabbing pain of electrical shocks on the left sides of her upper and lower jaws, that she was diagnosed with trigeminal neuralgia, the “Suicide Disease.” Initially thinking all she needed was oral surgery to correct her problem, she was told she needed major brain surgery to separate an artery compressing her left trigeminal nerve at her brainstem. Shock set in. Lisa was frozen and couldn’t act. No loved ones around her were of much help, due to their own shock and lack of education allowing each of them to truly understand her diagnosis and what her proposed surgery (vascular decompression of her left trigeminal nerve) meant. For about a month, with Lisa suffering excruciating pain, things were in free-fall because she and her loved ones weren’t sure what to do.
A professional 24/7 healthcare advocate would have been helpful in preparing Lisa and her loved ones for her surgery and her recooperation phase. After experiencing these procedures (taken from her operation report) you’ll see what I mean.
Lisa was “positioned supined with her head turned to the right; her head was immobilized in the Mayfiekd 3-point headholder.” Once an insision was made behind her left ear, more cutting and cauterizing occurred, until it was time for the Midas Rex drill which “was then used to place a single bur hole.” It was through this quarter-size hole Lisa’s neurosurgeon, Wesley A. King, M.D., was able (with the help of a microscope) to see her left trigeminal nerve and the artery compressing it. With steady hands, Dr. King separated the artery from the nerve. To protect the nerve, it was wrapped in shredded teflon so it wouldn’t be in contact with any other structures in the area of Lisa’s brainstem. Once Dr. King sewed Lisa up, her anesthesia was withdrawn and she was awakened. According to Dr. King’s report, ” The patient was wide awake, moved all exremeties well and was quite conversant.”
When asked about being “quite conversant” in the post-op recovery center, Lisa says she felt although her head had been hit by a truck, she didn’t have the luxury of keeping quiet. Her surgeon was right next to her. His memory was fresh; Lisa didn’t have a knowledgeable healthcare agent who could step in and speak for her. She had to go with the best opportunity available. It was less than an ideal time for Lisa, but what was her choice? On a morphine drip for intense pain, Lisa did “woman up” and thoroughly questioned Dr. King.
This is the kind of woman who helped herself, me and my late wife, Sylvia. She helps many others as well. Young. old, weak, strong wealthy, pro bono, high-profile, hiding behind life becasue one is too afraid. Lisa’s seen it all. But most people won’t until it’s too late. Professional heathcare agents for EVERY PERSON are missing from our rapidly-changing healthcare system. The only way to change this is for each person to assume the responsibility on behalf of themselves and their loved ones now and identify that knowledgeable agent.
I suggest you find your SOUL SHERPA now. Look at me, closing in on 101 years of age, still devoted to my twice weekly workouts. I hear RG3 is ahead of schedule in his recovery from knee surgery. Maybe he’d like to come throw the ball around with me. I’m up for it. What say you, Robert?