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Learning and trying to be kind and living my life as fully as I can stand it.

Thursday, June 29, 2017

Medically fragile

"I worry about you, because you're medically fragile," my friend said to me three weeks ago.

And for some reason, after more than thirty years of qualifying for this designation, I heard it. It might be too strongly put to say that I embraced it but not by much. I took it in and allowed it to become part of my identity, even though the choice was really only to recognize it since it was definitely already there.

I am medically fragile. My body, in all its strong, wonderful, amazing glory, is more fragile than most. Oh.

For years people have told me that I'm hard on myself and I've hated to hear it. It was one of the most common observations made to me and I shrugged it off with exasperation each time.

For years people have told me that I'm strong. They look at me in wonder, in admiration, when they hear about the transplant, about the twins. They wonder if they could do it and I say "Well, what choice do I have?" and move on.

Those attributes come from the same place--the sheer force of my will that I will exert to make the world, my life, be what I need it to be. Except that's not how it works in my body. I've just been ignoring it, I haven't been changing it. I can't change it.

Nikole is a doctor. A surgeon. She is also the Chief Medical Officer at the organ procurement organization where I work. She is my friend and my colleague and we were pregnant with twins in neighboring offices at the same time--people joked that they didn't want to come to that side of the office for fear it was catching. We talk about all sorts of things--systems at work, marriage, food, boxing, life. We share meals, with or without our children in the background. Her wife Annie is also a doctor and also my friend. She opens her arms to me with a smile every time she sees me and the two of them make me feel so loved, so accepted, so taken care of, so valued. My gratitude is huge.

Why could I hear her when she named me? I don't know. She's certainly not the first person to say she worries about me, about my health. She's not even the first doctor friend to say so. But somehow because of who she is to me and how she said it and who she is in the world and also probably because she wasn't saying "And you must do this about it!" the words worked their way in and settled into my knowing of myself.

Medically fragile.

On June 11th Nikole and Annie hosted a birthday party for our four kids at their house. It was a team effort (I showed up, that was my role on the team) and it was completely wonderful and over-the-top. The night before the kids spent the night at Stephanie's and she and her family got them dressed up in new outfits, hair done, before taking them to the party.

I woke up and limped around the house because for some reason my left ankle and my right shoulder were aching. Quite a bit, actually. It felt like the day after a soccer tournament when the muscle aches and bruises coalesce and remind you of all the little body parts inside you that make motion possible. I'd taken my regular yoga class three nights before so maybe that was it? I took a bath with Epsom salts, drank some apple cider vinegar and a turmeric-almond milk latte to introduce inflammation my friend Maria had told me about. I lay on the couch reading and resting. I knew the best thing for me would be to miss the party and I also knew there was no way I was going to do that. I took some heavy-duty Ibuprofen and off I went.

The pain slowly increased as the day went on--I couldn't really lift anything or even raise my arms above my head. My knees were stiff. I slowly walked around, thinking and hoping that movement would loosen up my joints. I did a lot of sitting. It was a sweet, lovely day full of friends and happy kids and four of the most incredible birthday cakes I've ever seen.

Later that night after putting the kids to bed I laid down and took stock again. Everything was the same, my body still hurt a lot. And now my jaw hurt on the right side, to the point where I could only partially open my mouth. I got really scared.

"My jaw hurts now, " I texted Nikole. "Do I have meningitis?"

"No, but you need to see a doctor tomorrow," she wrote back.


Fast forward to the next morning and the series of phone calls and texts that I sent out to my care team, including my hepatologist Jennifer who is the main driver of the bus when it comes to my body these days and Bob the surgeon who transplanted me sixteen years ago who watches over me like a super-powerful guardian angel boss man.

Something is wrong. I don't know what. I feel terrible. What should I do and where should I go?

I recounted what had been going on with me lately, medically and personally. Jennifer took charge, trying to put the pieces together. A lab draw was the first step, to get the lay of the land. Everything in me told me that I needed to be in the hospital, based on fear and pain level and past experience. So even though she didn't say that, Stephanie drove me into San Francisco during rush hour traffic so I could start the process at CPMC, my safe place. My transplant center. The hub. She dropped me off and my sister took the baton, sitting with me in the same lab waiting room that I sat in every morning for a month and many times after that in the early post-transplant days. The pain was bad. The gastrointestinal symptoms were starting. I started a fever. As I waited to be called I texted Jennifer these latest updates. She was communicating with my GI doctor Nikhil. My sister was feeding me water.

Based on my verbal history and symptoms the light bulb had turned on and they were guessing that I was having an allergic reaction to the Remicaid infusion I'd gotten ten days before. It's a biologic--a medication made from antibodies grown in a lab that are infused into my body every two months to reduce inflammation and get my colitis into remission. It costs $13,000 every time and insurance partially covers it. Due to an insurance gap, some financial concerns and a few months of focusing primarily on my liver labs and what was going on there I had skipped a few treatments. When you do that and then re-introduce the medication into your body you can sometimes have a lupus-like reaction as your body says "Hey what's this crazy shit? We don't like this anymore". All my joints were inflamed because my super crazy powerful immune system was on attack. Which is what it does, especially under stress.

So even though the labs wouldn't be back for several hours, they felt pretty confident that was the problem. When the fever joined the fray Jennifer asked me to come up and see her after my blood draw.

Side note: I got my blood drawn and officially decided to end my unofficial social experiment when it comes to getting my blood drawn. I will no longer be gently suggesting that phlebotomists and nurses draw from the veins in my hands rather than the veins in my arms. No one listens. I will now be saying "You may not draw from my arms." We'll see how that goes. It happens the same every time--I tell them the veins in my arms don't draw, I watch them check out the veins and see the same thoughts pass behind their eyes--I can do it, they're right there, I'm going to try. And then they not only stick a needle in they then move it around inside my arm a couple times in an attempt to get into the scarred vein that's so close they can almost taste it. And then no blood comes out. Hello everyone. Welcome to my care team in which I am a vital part of the process and the owner of these arms. You do not get to decide anymore.

Blood finally drawn. Limped up to see Jennifer, rockstar mother of three young children, liver doctor and friend who always looks like a million bucks. She took one look at me and said "Oh."

She'd been initially concerned about my liver, because that's her main job and because I'd recently had a stent placed to drain a a stone out of my bile duct. She checked me out, confirmed no pain in my abdomen and asked what I wanted to do next. She could admit me so I could rest and not worry about the kids or anything else. Or she could send me home on a bunch of prednisone and pain killers, with the option of coming back to be admitted if I decided that was necessary. I chose Option B.

My sister loaded me up into her fast little car, after filling my prescriptions as I sat curled up in a chair in the lobby. The pain was very, very bad. She turned the seat heater on and the warmth, plus the first dose of pain meds, slowly sank in and gave me some relief.

As I write all this down I have to smirk in sad disbelief at how long it has taken me to truly see how fragile I am. I'm just so used to it. There's often even a strange comfort that comes when I'm in a medical crisis, because I know how to do it. I know how to be a patient.

My immune system is a super nova. When I am under threat, from the inside or the outside, it blasts everything in site--even my own self. It does this even though daily I take two medications to suppress my immune system. This is the cost of my force of will.

I have shown, over and over, that I can do almost anything. Survive fulminant liver failure when everyone around me thought I was going to die. Get pregnant when the doctors first told me I couldn't and then told me there was a less than 5% chance the IVF would work. Carry two sets of twins, post liver transplant and knee-deep in a three year colitis-flare. Work full time in a job it turns out I hated, even when I regularly had to walk quickly to the bathroom with diarrhea and regularly had to gentle rub my belly as the cramps surged through. Take care of four kids by myself some days and even occasionally make a good dinner while doing so.

I have refused to let my medical conditions determine my life. Straight refusal. Rolled my eyes when my mom asked me, over and over, to take it easy and be gentle on myself. Shrugged with modesty and a "whatever" whenever someone reacted with wide eyes to any one of my tales. It just is. What can I do about it? Just keep living.

But I think I will work on giving my tired, hard-working, traumatized body a break now. I will open my hands and let go of the false control that I've believed myself to be exerting over the world and relationships and circumstances around me. I will gently take my body's hand and lead her out of the forge where she has been working too much overtime for too long. I will not rely on the pills and my mind to hide the truth of what is happening in my cells.

I'm Megan and I'm medically fragile. I need special care. All help welcome.

1 comment:

  1. I see why you asked if I had read your most recent blog. I thought I was up to date with the pink boot. I recognize your description of yourself. I am so glad you know you need special care. You deserve special care. Love, Aunt Em