Dang it. Just when I think I have things well in hand, I get a reminder that I MUST pay attention.
It’s that old “don’t assume” thing, you know? If not, I’ll spell it out. "When you assume, you make an ass out of u and me. Now, let me explain.
I have been very fortunate in the past few days. I realize that. I have been under the care of highly skilled and caring professionals, so I haven’t had to be ever-vigilant and have been able to rest easy.
Where I came up short is that I stopped thinking for and by myself. I’m following instructions and relying upon “them” to make the right decisions. But that doesn’t mean I should abandon my own thoughts and feelings.
That still isn’t making sense, is it? Let me dig deeper.
In the past few weeks I’ve learned that my medical team changes during the phases of transplantation. I have my pre-transplant team, including a pre-transplant coordinator and a hepatologist. I’ve worked hard to develop those relationships, and have made great friends with these life-saving heroes.
When the transplant is about to take place though, a whole new team takes over, and suddenly, people I’ve never met are playing VERY significant roles in my care. My hepatologist fades way into the background, and my pre-transplant coordinator leaves my team for good. Sure, she’s still around, but her role in my care is now virtually non-existent.
Instantly, a surgeon steps in in place of the hepatologist, and a donor coordinator joins the team, plus a group of pre-operative nurses comes and goes, followed immediately by a group of ICU personnel for a couple of days, followed by a group of post-operative nurses for a few days, all accompanied by a dizzying array of transporters, housekeepers, food service staff, hospitalists, consulting pharmacists, a diabetes counselor, a nutritionist, etc, etc, ad infinitum, ad nauseum ...
THEN, upon discharge, a return to the clinic, with requisite new post-transplant coordinator, additional consulting surgeons, and another set of nurses.
Eventually, this new and current team will release me back to the care of my hepatologist and the post-transplant coordinator will continue with me, but that’s still weeks or months away.
So, here I am, fresh out of surgery, in the hands of highly skilled and specialized professionals, some of whom are looking at me like I’m some sort of celebrity due to the speed with which I’ve arrived in their office, walking in under my own power (without even a walker or cane for balance), with my reputation as a highly motivated, educated, compliant patient preceding me.
They’re all amazed, frankly, which adds to the cocktail of anti-infection and immunosuppressant medications, to the euphoria of having survived, to the bodily function re-adjusting, pain-medication-infused, prideful mixture that is the current state of my whole being.
What could possibly go wrong? I’m SUPERMAN!!!
So, there I sat, as the parade of people come in to get a glimpse of this freak of nature.
First up, my new post-transplant coordinator. As always, I listen intently, Melisa with pen poised over our list of questions.
But wait, this isn’t my coordinator, who I’ve already met. My coordinator is on vacation this week, so this one is filling in.
Fair enough. I really like her already. She’s sharp, tenacious, on-point, obviously cares for her patients, and is ready to deliver stern lectures and precautions as is normally required.
She quickly relaxes, once she begins to realize why she’s received such glowing reports about me in advance. SUPERMAN is here.
We interact well together. She speaks. I listen. I speak. She listens. She’s stunned that everything is going so well for me. Stunned that she has a new patient that has no problems, no signs that anything traumatic has occurred to him other than the line of staples (44 of them, by the way) across his abdomen, along with some sutures, some swelling, and some bruising.
I listen intently as she warns me that EVERY patient has a bump in the road. At LEAST one bump. I am not to feel guilty when it happens. It simply happens.
I listen intently as she warns me not to neglect my pain medications. “Don’t be macho.” “Take your pain meds.”
I assure her that I’ve got a bottle of pain meds in my bag. Melisa is in control of them, and makes sure I’m not abusing them, but gives them to me anytime I ask for them, as long as it’s within the dosage limits. Further, that Melisa will (and does) make me wait until the clock reaches the appointed time for my next dose if I ask for them early, and doesn’t make me take them if I don’t ask for them.
But her point is well taken, the warning received, and though I haven’t even looked at the bottle, I assume that they gave me a 10-day supply and I’ll be okay until I’m back on Friday. *Note to self: you just said “assume”
When the parade of people, including medical students, comes to an end, we come home, tired after the excursion, but well-medicated and happy.
Finally, yesterday afternoon, I took a look at the bottle of pain meds. It’s 3:30pm, my next appointment is in two days, and I take two pain pills every four to six hours. There are 7 pills ... calculating ...
There are only 7 pills left. That means they’ll be gone by morning, even if I take them sparingly, leaving me without any for 24 hours before my appointment, and a long ride in the truck before I get there.
Hey, that’s no problem. Let’s call the team, have them phone the prescription to my local pharmacy, and we can drive a mile from the house to pick them up in an hour. Easy.
Way to think it through, SUPERMAN. You’re on top of this whole situation. You are the BOSS. Now call the team.
“Hi Mr. Palmer. No, she’s not available, she’s on vacation this week. Oh, the other one? No, she just left. Just call back in the morning.”
I call the pharmacy. “Hi Mr. Palmer. No, he’s not here. Can I help you? No, I can’t do that. You must have a hard copy of the prescription, by Federal law. Just call back tomorrow. Really? Okay, we’re open until 8pm for post-transplant patients only.”
Melisa gets in the truck and heads for the clinic while I’m still on the phone. I call my primary care doctor, as she’s the closest prescribing doctor, still on the other side of the bay, but 15 minutes closer than the hospital. “No, she can’t. Everything has to go through your transplant team.”
And so it continued ... I eventually managed to get patched through to the new coordinator’s cell phone. I’m now approaching the edge of disaster and terror, as I recall her previous advice: “Don’t neglect your pain meds.”
She’s beside herself, caught in traffic on the way to pick up her child, unable to assist me, demanding I call Melisa and have her turn around, that she won’t even be able to get to the hospital!
Cut your pills in half!!
You can make it!!
My world is suddenly confusing, light-flashing, frantic, drug-fueled, adrenalin-laced lunacy!!!!
The kryptonite has fallen directly on the very heart of SUPERMAN. I am utterly, demeaningly powerless. All of my castles have crumbled. The vultures are circling. I give up. I give in. I am defeated. I take two pain pills and slip into a deep and dreamless sleep.
This morning, 7:00am. I am awake. I am alive. I feel fine. I take two pain pills. I have three more left. No problem.
What was all that about? The confusion begins to clear.
Melisa wakes and gets ready to drive into Tampa. I call her over. I apologize.
I’m fine. The sun is shining. Stella comes to greet me.
Me? I had allowed a simple comment, “Don’t neglect your pain meds,” to take command of my life, to control my actions, to make me act in ways that I pride myself in not acting.
I’m fine. “Take your time today, honey. I’ll be hanging out, taking it easy. No worries.”
Hey, I’ve even got a urinal next to the bed, so I literally do not have to move from my nest. If I don’t move, nothing is going to hurt. I have three more pain pills if I need them.
Everything I could possibly need to survive is within arm’s reach, including the tools I need to monitor things: my blood pressure monitor, my blood sugar monitor, my thermometer, my anti-rejection meds. It’s all right here. Water. Phone. iPad. I’m fine. In fact, “I can go with you to Tampa if I need to, no problem.”
It’s humbling when you realize how you’ve allowed yourself to be lured in to accepting someone else’s projection of what your life is like or is about to become.
I am still the patient. No one else knows my body like I do. No one else knows what I’m feeling or how I feel.
I’m fine. This pain is temporary, and it’s receding a little more each day. I am already strong. I am getting even stronger with every passing moment.
I’m fine. I’ve dealt with pain before. I have the power in my mind to lessen it, I merely have to get out of my own way and allow myself to tap into that knowledge and avail myself of it.
I know the best ways to move in order to minimize the pain of getting out of bed, of standing up, of walking.
I love you, and I wish you peace.
ps: When I was on the phone with the coordinator and she was stuck in traffic, she was in a torrential downpour. I saw a picture this morning of the street in front of the clinic on FB with cars stalled on the street with water halfway up their sides. On Melisa’s return today she said there were signs instructing people NOT TO GO to the hospital, (it’s actually on Davis Island, accessible only by bridge). She literally could not have gotten there yesterday.
So now you know the rest of the story ...
This post first appeared on Dan’s Perspective blog, June 11, 2015 and is reprinted with permission.