Saturday, June 18, 2011

recovery, right now

Every day I'm feeling different. Hey, every couple of hours things shift. And sometimes, especially when I'm not home and pretending all is fine, I go from miracle post-surgery woman to barely being able to hold my head up, let alone walk, in a matter of seconds. 

This place, 12 days after transplant is amazingly better than it's been.  But I'm not even close to being back to where I was. And so I thought I'd take a snapshot of right now, to remember and commemorate this part of the journey. 

I'm not in pain. Not stabbing, throbbing pain like I was at certain points. But I'm sore. My sides, my ribs are tender to touch. My solar plexus feels like someone kicked me, hard, a few hours ago and I'm still slightly doubled over from the attack. My belly button and the 2 other laproscopic points hurt when even lightly pressed. Or when a dog or 2 wanders across. This morning, as Gracie perched on my abdomen and the Moochi jumped on, I could only cry from the deep soreness. 

And my big scar-to-be (relative to the mini entry points listed above) the thin, straight 3 inches below my belly button, aches. On the surface. Inside. It's swollen and puffy and hard, distending that small area of my body out in an unnatural way. and when I stay one position too long ache travels from there to my inner thighs and lower chest. 

The rest of the belly swell is almost gone. I wore pre-surgery pants yesterday that were comfy until the last half hour or so. 

The bruises are receding. The 2 on my left thigh (heparin pump and unidentified) are almost gone. The purple horizontal line of blotches traversing my middle isn't nearly as vibrant as it was. 

Gas. Ah, gas. The gas bubble that felt remarkably like being 5 or 6 months pregnant, keeping me from eating or sleeping, is mostly gone. There are bouts of nausea, of intense food cravings that wake me up near tears, satisfied only by the whitest, most carb-laden food I can find. This morning I was at a diner at 7:15 for pancakes, something I hadn't ordered from a menu in more years than I can remember. 

That I've come this far in this short period of time is pretty amazing. I guess though, that I'd thought I'd be farther along and not here. I feel tentative. Shaky. Scared to be too far away from home in case I can't get back when the crash comes. Instead of walking with purpose, I walk with caution. It's not easy to sit up straight for too long. And even though the pain is so much better than it was, I am exceedingly aware of the effects of Tylenol wearing off. Like right now. 

Aside from the physical set backs, I've lost my center, my grounding. It's hard to breathe, really breathe, deep breathe. I'm not anxious but I'm not calm, not in the way I finally found I could be towards the end, before the transplant. Its hard accepting this place. It's hard to take care of my body the way I should, for all it went through and all the healing it has to do. That goes for my soul too. 

I wish I could appreciate me more right now. For the gift I gave, for how my body handled the shock and awe, for how I survived the experience without breaking down. 

Right now I can't. But maybe that will come with time too.

Thursday, June 16, 2011

10 days out

Sometimes I feel like this kidney thing never happened. I am my usual full-of-adrenaline, I-can-do-anything self, like when I was up in front of a middle school auditorium yesterday morning, heading a PTA meeting, or selling myself to do a TV appearance for Stewardess last night.

And then I hit the wall.

As I sat in the principal's office after that long meeting, the room started to swim, I felt like I couldn't breathe, I needed to be home. I never ask for help, but I interrupted the conversation around me and ask if they could please get me a cab. Unsteady on my feet, I had to leave the building with my arms around 2 people and sit on stairs outside until a taxi appeared. Then, it was a 3 hour nap crash at home after which I never totally recovered.

Out of the blue (things like this happen in my life), I got an email from a producer asking if I'd be a talking head on a travel channel show about the golden age of stewardesses. We spoke for half an hour last night and, as I am with my projects, enthusiasm ran rampant for half an hour. I got off the phone shaking, laying in a daze until I could muster up strength to finish my night.

I've been coordinating dinners, going on dog walks, dropping people off at school, having animated conversations with just about everyone I know who can't believe I'm out and about, making plans, planning events, trips, meetings, birthdays (mine is Sunday, Iz's is next week), shopping for presents, living my life as if nothing's changed.

As if acting like I'm ok will make it ok.

But it doesn't.

My body was assaulted in a way it never was. I went through anesthesia for the first time. Had 4 days of heparin, antibiotics, a couple of days of morphine, even more of percocet. There were the anti-nausea drugs and stool softeners. I spent my time in the hospital getting no more than 2 or 3 hours of sleep at a time, without being woken up for blood pressure or temperature checks, or for some sort of drug dose.

Active is my default mode - I walk for miles because when you live in the city that's what you do. I have a vigorous vinyasa yoga practice and am (was) at my studio 4 days a week.

My body that's used to moving and sweating and stretching doesn't know what to do with this.

And my mind, that had found a grounded place before surgery, is spiraling out of control.

I've lost my center. I've lost my breath, my balance, the calm I'd found before being sliced open.

I've never been here before. I don't know how to do surgery recovery. And I'm finding I'm not very good at it.

Yes, every day is better. Yes, the swelling is going down. Yes, my mind is sharpening and I keep feeling more and more like myself.

But then I twist the wrong way. Or that fatigue throws me up against a wall. Or my brain can't put words together to finish a sentence. Or I panic because I don't know how to handle feeling this way and I don't have faith that I'll be fine in the end.

I'm tentative in everything I do. I'm walking cautiously through nervous, navigating this strange unknown where I'm fine and not fine at the same time.

I lost knowing that I'm ok in the here and now.

Or at least I've lost how to find that place for the moment.

But, there's the smallest of glimmers way, way down deep that I'll find my way back.

Tuesday, June 14, 2011

(don't) walk this way

Everyone says walking will make a huge difference in my recovery, especially helping the air trapped in my belly from laproscopic surgery (a lovely tangent, my transplant social worker said that since I was so small they had to really pump me full so they could see what they were doing) to disperse. 

And so, I've been walking. Until yesterday, as exhaustion slammed me against the wall. I hadn't been able to run after Iz on the street. I couldn't shout loud enough for her to hear me. Jack carried my things slowly home for me and I burst into tears in the elevator. After ordering pizza and cleaning up for a bit I collapsed into a sleep so deep I didn't know who or where I was when I woke up. And from there, depression lapped at my edges, pulling me hard towards the dark side. 

And then, an epiphany:

Perhaps when people said walking, they didn't mean NYC walking. 

On Sunday I went to Old Navy and back: 12 blocks

To the piercing place on 8th St. to have my nose screw put back in: 10 blocks

To the hair salon to complain about the sloppy job they did on Iz: 4 blocks

To Pinkberry where I almost burst into tears because the line was so long: 4 blocks

3 walks along with the dogs as they were being walked: 6 blocks

Total: 34 blocks

20 city block equals a mile. So I walked about 1 3/4, not counting the supermarket run, moving around the apartment, and the other strolls I might have taken but have since forgotten. 

Oh. While that might be low level travel on a regular day, perhaps 6 days post surgery it was overkill. 

This taking it easy part is not easy for me. I don't feel sick but there's so much I can't do. And, never having been in this place before, navigating is daunting. 

Now as the waves of fatigue wash over me I'm not crushing them down and pretending they're not there. 

I'm lying on my couch for at least 5 more minutes. Or at least I'll try to.

Monday, June 13, 2011

after the transplant . . .

Jon thought my last post was the perfect way to end this blog. In a way he's right. This space was about the journey of a potential donor and now I'm on the other side of the road. But, this is truly a one door closing/one door opening place to be. The journey of a donor, a week into it, is just as intense, just as joyful, just as chock full of everything one could imagine as before.

And so folks, if you're still interested, I've still got a tale to tell.

Surgery was one week ago today. One week ago, at this moment, I was lying on an operating table, a tube down my throat, a blue stretchy cap over my hair, organs being moved around to make space for my kidney to leave the building. Or maybe I was already in recovery. I have just about zero recollection of that - I remember coming to and asking how Dave was. I remember being somewhat interested in the fact that I was wearing something completely different than I'd put on in pre-op. I remember missing my phone.

It's been a week. Quite a week. There were moments when I felt like I'd lost myself, my mind, my sanity and I'd never be ok. There were moments of happiness and relief that were like a drug washing over me. There is the reality that my body was assaulted and recovery is in no way going to be the quick, easy-breezy experience I'd readied myself for.

Right now, at this very moment, I'm having trouble staying positive. I'm hurt by the people I thought should be here who aren't. I'm surprised at how few have offered help or stopped by. I'm stymied at how I'm going to manage walking dogs and getting dinners and keeping the apartment clean when everyone's acting like I'm just tired.

No one seems to understand what a big deal this is.

It is.

Honestly though, I can't process it.

I don't feel like an organ is gone. I don't feel very different, except for the bloat and the gas and the fact that I walk like someone's timid grandmother and can only wear sundresses that work well for pregnant women. And the fact that all I want to eat is bland carbs. The thought of salad or garlic or pad tai or anything I'd usually love, is gone. Oh, and that I've given up my twice a day decaf habit (that could be contributing to the fatigue).

I gave up pain pills early Friday morning and am recovering on Tylenol and gas-x. Intellectually I am so proud of what I've done, of how I'm handling it, but I'm so fucking tired at times I lose track of the bigger picture.

Even the fact that I lost my bigger picture.

Getting a kidney to my brother was the main event. I had no next act. I figured I'd heal with creativity bursting out of me.


I'm healing with tomato soup and rice, challah, and buttered bagels.

In some ways my body feels like it could do anything I ask of it. But it can't even begin to.

I read these amazing words people are posting/writing/sharing about me and they sweep me away.

Right now though, I don't feel like that person.

And right now, my faith that I will be what people believe I am is shaky.