Friday, December 23, 2011

reflecting

A year ago today I found out I was a match for Dave. My life changed. Both our lives changed. Just about every step of this journey wrought major stuff, whether invasive testing, award-winning anxiety, stress that goes with endless waiting, the utter joy when something worked in our favor, epic frustration, the mind-blowing fear of the unknown. Every anniversary makes me stop and pause and remember. And be grateful for how things worked out. But aside from the actual transplant itself, I think this anniversary is the most profound.

The two weeks preceding were a waiting I’d never experienced before, except perhaps when wondering if my amnio for Jack would be ok. But chances were it would be—it was more of a formality because of my age. This was a total crapshoot. We had a better shot than a random person off the street, but there were no guarantees. And I wasn’t completely sure which way I wanted it to go. Of course I wanted to be able to donate but I can’t say that I was 100% committed. I didn’t know what to expect. I’d never had surgery. We didn’t know if his body could handle it. And should all work out, there were no guarantees the kidney would stick. I’m not good with unknowns and this was staring down a chasm of nothing but.

I knew it would be a showdown with anxiety although from that vantage point I had no idea how all-encompassing it would be. But on the other hand, if I wasn’t a match, then what? Someone’s well-being was in my hands. His future, his health, his life depended on me. And that was out of my hands too. It’s not like I could study and do well on a test. It was all about biology—the blood and tissue types I was born with.

I wasn’t sure how I’d handle either outcome. The invasiveness of organ donation. The disappointment of not being able to help.

A year ago today, when I took my phone out of my pocket I saw a voicemail from the transplant coordinator. I didn’t think of her as mine yet. Part of me wasn’t ready to listen so I walked a few blocks, trying to breathe deep and clear my mind for was next. She said, “Good news!” and proceeding to talk about tissue and blood cross matching and next steps. I couldn’t quite process it. My hands were shaking. I started to cry. I was relieved. First. That I’d be able to do something. That Dave could hope. That perhaps he’d find a road to healthy or at least healthier. And then joy washed over me. I was jumping out of my skin excited. I couldn’t wait to tell him only he wasn’t responding to texts or answering his phone.

He was nonchalant when I got ahold of him moments later. It took a long time to truly understand and accept how profoundly different this experience was for the two of us. Throughout the next six months it was rare to find us feeling the same thing at the same time. And that was part of the process too. Acceptance. Understanding. Tolerance.

A year ago today my kidney became my brother’s. I didn’t think of it as mine anymore. It was something I was housing until it got to be where it was supposed to be.

What a gift to look back from this place of knowing it all worked out and that he’s better now than anyone could have imagined. I’m crying as I write this. Sometimes, rarely really, my heart breaks wide open and I know what an amazing thing I did.

Friday, October 28, 2011

post kidney donations

There's not much to say here on a regular basis. My former kidney is happily working hard in its new home. My brother's feeling great. I often forget that I'm down an organ. I feel back to myself and all of the above is pretty damn miraculous.

Creativity's taken a back seat for the past couple of years but I'm feeling glimmers again. If you'd like to follow what I'm up to next, I'd love you to join me here as I figure it out.

Thursday, October 6, 2011

it's not over until it's over

As I was walking to Iz's curriculum meeting, I remembered this exact night last year. It was another warm fall evening. My brother was having his dialysis port unblocked at an outpatient clinic halfway between my apartment and Iz's school. I had been on call to take him home after the procedure, but it went so late his wife was on her way to pick him up. And so, I stopped by to say hello and spend a little time, expecting to see him in the waiting room, getting ready to leave.

Nope.

The receptionist escorted me back to an examining room, where Dave lay on a gurney, his bandaged arm dripping blood onto the floor. There wasn't a soul in sight. He was in moderate pain and dizzy, as he hadn't eaten all day. I ran out into the hall, yelling that someone needed to handle the leak that was growing larger by the second. A nurse came in. A technician. A doctor. As they tried to staunch the flow, the room got really hot. Next thing I remember I was on a chair, my head between my knees, with someone offering me apple juice. I knew I couldn't be the one to fall apart but on the inside I was starting to panic.

He was in pain. Not terrible pain, but I could see from his face things weren't good. Again, I went searching for someone to give him meds but they said he had refused any, that he just wanted to wait until he got home. Looking at him, I couldn't imagine that he could possibly be released the way he was.

I thought food might help. An empty stomach to a diabetic is not a good thing. Scouring Union Square, I finally found fresh pineapple and watermelon, two things he was still allowed to eat. Kidney failure limits your diet tremendously. He ate a bit—I tried to cut the fruit into manageable pieces with a plastic fork. And then, pain washed across his face.

He started to sob.

He could barely talk it was getting so bad. Again, I ran through the clinic, looking for someone to help, at this point yelling that someone just needed to do something for his pain. A doctor handed me a script and I left to drop it off at the drugstore, to be picked up as he headed home. I found his wife sitting in the lobby, wondering what was going on. The reception desk was empty. A woman wandered by, complaining they were short-staffed, and asked if I could bring her back to my brother's room. We wandered back through the hallway maze and as we approached his door, I could see far more people surrounding his bed than had been there before. As I walked in, the doctor said, "He's in too much pain. You can't come in." He then shut the door.

By now I was running late. I flew out of the clinic, ran to my brother's drugstore, made sure they knew getting these meds ASAP was a priority, and then I headed to middle school, barely able to breathe. The principal and my co-PTA president were by the front doors.

I was shaking.

I burst into tears.

As they fed me milky way bars, I tried to regain some sense of calm but it was almost impossible. The scene I had just left felt dire. I should have stayed but I needed to be where I was. I kept texting, hoping someone would answer.

Not long after my brother posted on facebook that he was in an ambulance. Then that he was in the emergency room. There were pictures of his bruised and swollen arm than didn't look real. I got a text from my sister in law that they thought he might have had a heart attack. That his body was shutting down.

I was desperate to do something to help, but there was absolutely nothing that could be done.

I went to sleep afraid I'd wake up to find he'd died during the night.

That was the true beginning of our transplant journey. That surgery didn't fix the port in his arm, nor did the 3 subsequent attempts. 6 weeks or so later, he asked me if I'd be tested to be a donor.

That was where we were a year ago right now.

4 months ago today, he got his new kidney, which has changed his life more than I think any of us could have imagined.

As I was walking to school tears stung my eyes at how far he, how far we'd come. I finally found a way to help. And he finally feels better.

Sunday, September 18, 2011

moving on

I haven't heard back from my brother in a couple of days. Which is fine. Typical. Normal. The way things had always been before my kidney found its new home. Actually, there were times weeks would go by with little to no contact. We are both very busy in very different ways. But, early into this transplant process I told him I needed to hear from him every day—there was so much going on and it made me feel more grounded to be in contact on a regular basis. We texted, called, emailed, facebook messaged and played endless games of words with friends (90% of which I lost) as we recovered.

For the past nine months not a day went by that we weren't in touch.

These past nine months were some of the most intense I've ever lived through. The most scary, nerve-wracking, panic-stricken, overwhelming, frustrating, painful. Also the most exhilarating, thrilling, liberating, satisfying, joyous, hopeful. My life revolved around this transplant. So did his. It took precedence over just about everything else. I knew, when I agreed to be tested last December that I was diving off a cliff into the unknown and that there were no guarantees that all would work out in the end.

And here we are. All worked out in the end. I'm crying as I write this. Because it worked. In spite of the set backs, the delays, the doubts. The extra challenges in our particular case. My brother's ultra compromised body. Knowing his doctors would never have attempted this if it hadn't been his absolute last resort. Three months post surgery his new kidney is working better than anyone expected. And my brother is getting back to his very committed, very busy way of being present in his life. Meanwhile, I feel fine. FINE. My surgeon told me at my 6 week visit that three months out I should be just about back to where I was. I am. I did my first 20 mile bike ride this week, to the George Washington Bridge and back. There's not a yoga pose I can't do (excluding those I couldn't do before). My creative muscles are flexing. I've been designing for new clients, diving back into back to school mayhem and am staring down the question I always come back to in my life: what next.

I can honestly say that giving my brother his new kidney is one of the most meaningful, most important things I've ever done or will do. How often can you so dramatically, so profoundly change someone's life? But it's not just his life that changed. I look at things differently now. I've let go of fears that have plagued me forever.

It's also now in the past. When people ask how I am it takes a moment or two to realize what they're talking about. And so, it's time to wrap up this blog and move on.

I want to end with endless thanks to all those who read, who encouraged, who asked, who prayed. Who kept us in their thoughts and sent karma, good wishes, faith, hope. All that meant the world to me, to us.

Somehow, deep down, I had faith this story would have a happy ending. We lived a miracle.

Namaste friends. And lots of love.

Tuesday, September 6, 2011

3 months ago

3 months ago, right now, I was on the way to the hospital. Texting my brother who was already being prepped for surgery. Freaking out a bit as we missed our exit and were barreling far farther uptown than we needed to be. 

3 months ago, right now, no one knew if my brother's truncated body could spare room for a new organ. And if it could be squeezed in, there were no guarantees it would work. 

3 months ago, right now, anxiety was kicking in. After 6 months of ups and downs, starts and stops, endless testing and countless delays, I was almost frozen with the reality that it was now real. Really happening. My first surgery. Losing an organ. Grappling with fears of anesthesia and recovery. Pain. The calm I'd finally found went into deep hiding. In fact, it's only starting to come back. I've been living on a thin edge since surgery: nervous, tense, scared of I'm not sure what. I think my body is still processing all it went through. 

3 months ago, right now, my brother and I were diving off a cliff into the unknown. 

3 months is a major milestone after transplant. And 3 months later Sidney gets a tremendous gold star. An A+ for effort. My brother's new kidney fit right in and started making serious changes. Dave's creatinine was .9 at his last visit - a number that means healthy, normal kidney function - the lowest it's been in 25 years. He's no longer taking medication for gout, something he'd been on for 16 or so years. His prednasone dose keeps being lowered as his body is tolerating his new kidney well. His energy level is amazing to watch in action. And he doesn't need dialysis anymore!

Yes, he still has health issues. New kidneys don't vanquish diabetes, much to my disappointment. Nor do they eradicate high blood pressure, or solve the other health issues he's grappling with. Anti-rejection meds bring their own set of issues to the table. A heightened risk of skin cancer. Breaking out years after you'd expect to. But, a healthy kidney makes a huge difference to the body as a whole. And the knowledge that an integral part of you isn't in end stage failure certainly helps too. 

3 months post surgery I'm good. Last night someone asked, in hushed tones with a look of concern on his face, how everything was. For a moment I wasn't sure what he was talking about. My body is getting back to where it was. Just back from vacation, I did a 15 mile bike ride, boogie boarded with abandon, carried relatively heavy bags up and down flights of stairs. The wall of exhaustion hasn't hit in awhile. I've got a bit of post-surgery weight to lose and my incisions are sometimes sore, but that's it. And my soul is lightening. Last week I halved my daily dose of Lexapro, something I've been taking for a little over a year. After living in this kidney bubble for so long, glimmers of other things are starting to seep in. 

3 months ago, right now, there were  only question marks. But, on September 6, 2011 we have and answer. Dave's got a healthy kidney an they're doing just fine. 

Tuesday, August 30, 2011

feeling

This morning, my period started full force (for those who don't know, my life before transplant, menstruation was my subject matter for 3 or so years). I'm having cramps. CRAMPS. Day one, ever since working on FLOW: heavy flow and pain that doubles me over. A hot water bottle helps. Curling tight in a ball on one side. And copious amounts of Advil. 

Only I can't take Advil anymore. It's not good for kidneys (or kidney in my case). I'll mention here that Tylenol can cause liver damage. Two seemingly innocuous over-the-counter meds I'd always taken for granted turn out to be not so inconsequential. 

While I've always eschewed medication in general - taking them only as a last resort - I used to pop Advil like candy. For cramps. For headaches. For wrist and shoulder and back pain, sometimes taking 3 and 4 at a time instead of the recommended one. Never thought twice about what I was putting into my body. 

Now, I have to think. 

I haven't taken anything since 2 weeks or so after surgery when Tylenol every 4 hours was my savior. I'd give up on Demerol early that post-surgery morning, 4 days after being sliced open, and relied on the much mellowed med for relief. At the beginning I could barely handle hour 3 and would count down until my next dose. But by that weekend I'd stretch it out if I could. 5 hours between doses. Then six. Another week or so later I stopped completely. 

That doesn't mean I haven't been in pain. My right shoulder, an overuse injury I've had for almost 2 years, is back in full force. 

I'm icing. 

Last week I had a menstrual migraine, the day before the hurricane hit. 

I grit my teeth and dealt. 

Today cramps are so intense it's hard to lie flat. Even my big scar is aching with the pressure. 

It will pass. 

I'm wondering of all the extra anxiety I've been feeling lately could be, in part, because I'm not numbing myself anymore - I'm going into the pain with no weapons against it but time and acceptance. 

And that's not easy. 

Popping pills was. 

But now, more than ever, I have to protect my body and keep it safe. 
That hot water bottle I didn't buy  in town yesterday is now at the top of today's to-do list. 

Thursday, August 25, 2011

just when the story seemed over

Last night I got an email from my brother with the subject line: below 1.  I opened it to find a snippet of a blood test report listing creatinine, but didn't see a number attached (if only I had thought to scroll to the right on my phone . . . ). So, I texted, emailed, sent a message through words with friends before I finally spoke to him this morning and found out that it was .9. 

Point nine. 

POINT NINE. 

I actually got tearful this morning as
Jon and I were talking about it. A low creatinine number means the kidney's working well and we're almost three months post-transplant, which is a big milestone. 

Sometimes, rarely, almost never in fact, it hits me what I've done. How I changed a life. How I changed mine. 

And that got me thinking that perhaps the heightened anxiety I've been feeling lately, the sense of unease, the fear that a panic attack will slip in through the cracking, that I'll start to crack into pieces, is related. Every time I finish something big, usually a book project, I crash. That huge expenditure of energy, of drive, of creativity comes with a price tag. A finished product I'm proud of but a sense of exhaustion and emptiness that flirts at the edge of depression. 

This is so much more. The transplant was my project, in a way, for months. It was the focus of my life and it required as much attention and energy as I could muster throughout most of it. But, it wasn't just me weaving ideas and words and images together. Someone's life was at stake. Their future health depended on mine. And I had no control over whether any of it would work. Almost never did I let myself go there - to the what ifs. What if something happened to me on the operating table. What if my brother's  challenged body had been pushed too far. What if the kidney didn't fit. Or what if it did and it failed. I held on harder to "this is meant to be" and "all will be fine" than I ever have in my life. I had faith, which normally I roll my eyes at. 

And now I've lost it. That faith. That trust. That belief that all will be fine. Is fine. I'm wondering if this is part of my own post-transplant crash.  The emotional part couldn't happen right away because my body was a mess. I'd been cut open, organs were moved around, one is now gone for good. I'd been pumped full of drugs I'd never taken before. This was my first surgery. My first catheter. My first morphine. That's a lot to recover from. 

It's feeling like maybe that while my body is getting back to where it was (although heavier and with much less stamina than usual), my mind, my emotions, my center are still thrown off balance. 

I don't know how to get back there. 

I hate the sense of dread that's managed move in. 

But I'm hoping that perhaps understanding where it's coming from will help me stay strong as it moves through me. 

I don't believe that yet. But I like the thought. 

Saturday, August 20, 2011

one year later

a year ago

This morning we're heading down to the beach for two weeks. Two weeks of boogie boarding, custard cones, biking and boardwalks. Two weeks of freshly picked jersey corn, sunsets over the ocean, skee ball and go karts. Last night, as I was packing (I generally pack at the last minute) I was thinking that this time last year there wasn't even flicker of the possibility of a kidney transplant in my future. 

Well, there was a momentary flash. This time last year my brother was staring down dialysis. He'd hit renal failure and it was only a matter of time until he started. I offered up a kidney and, as always, he said thanks but no thanks and that he'd keep me posted as to what was going on. 

He didn't. Sometime that trip I remember being in the car and reading on Facebook that he'd started dialysis and it had gone well. I felt awful - I'd wanted to be there with him when he started. I asked him to please text me if anything came up so I wouldn't get big news in such a public forum. I got a text after the next session that it had been a disaster. 

And still, I was at the beach. 

As soon as we were back home I headed up, with Iz, to keep him company during a session. After two bus rides in rush hour traffic, and an odyssey through a barren office building we found him in a beige lounge chair in a beige room surrounded by pumps and tubes, beeps and flashes, fluorescent light casting a harsh glow over the many patients having their blood mechanically cleaned. 

I chatted. Told stories. Made everyone laugh. Offered to customize his favorite hoodie with a flap that would open for port access. And then I went home, shaken. 

I couldn't fathom being tethered to a chair for hours at a time, the process barely increasing quality of life. From that point I couldn't imagine the fatigue, the restrictions and finally how very much could go wrong. 

And never for a moment did I entertain the thought that one year later my kidney would be hard at work changing my brother's life. Saving my brother's life. 

This year I'll be hitting the beach with 4 fresh scars on my abdomen. And with a brother who has a healthy kidney and is dialysis free texting me from home. 

Wednesday, August 17, 2011

kidney stories

I got out of the shower this morning to find two voicemails from my mom, one at 10:08 and one at 10:10. Before I even listened I knew something was up. And then, while listening to the first message I could tell from the tone of her voice that something was wrong.

A cousin of mine died last night. He'd been in renal failure and was going to be put on the transplant waiting list next week.

I barely knew him. If he passed me on the street he wouldn't have know who I was. He was about 15 years older than me and perhaps I saw him once or maybe twice since I was a kid and we threw big summer bashes in my backyard when my grandmother and her sisters were alive. I had no idea he wasn't well. I'm not sure if he's married. I think he has 2 kids. I can't begin imagine how, overnight, their lives have turned into total, painful chaos.

Iz asked me, as I told her the story, if renal failure and kidney issues run in our family. No. They don't. But we just lived through months of kidneys 24/7, so to hear of someone we know at that level of disfunction so soon after transplant was unnerving.

Yup. That's the right word. Unnerving.

Before going through this journey with my brother, I didn't even know what exactly kidneys did. I had no idea where they were located. What renal failure was like. How dialysis worked. I didn't know about the potential heart attacks or high blood pressure, the fainting, and vastly restricted diets. I had no idea that waiting lists for kidneys were years long and that there was no way many of the people on those lists wouldn't live long enough to be a recipient. I was clueless as to how hard it is for many to find living matches.

I'd never thought about choosing to save someone's life. Or that that was even a choice one could conscientiously make.

We were lucky. I was a match. I was healthy enough to donate, which doesn't always happen. The kidney fit. And is working really well.

We were lucky.

My cousin never got that chance.

Which leads me to . . .

Last night I had dinner with a dear friend and, as usual, we talked about what I should do next. While she's in publishing, the last few times we've had dinner, she's brought up film as the direction she thought I should go in. As we talked about the transplant—it was the first time we'd seen each other in months—she was fascinated by the many, many aspects and angles of donation. And thought a film about just that would get people thinking and talking. As I've said before, this story isn't just mine. Nor is it just my brother's. There are thousands of people out there waiting. And suffering. Ill, with little hope for health. There are also thousands more who could change someone's life. Thousands who don't choose to be an organ donor. Others who might do some soul-searching and realize that when they look at the bigger picture, perhaps giving a piece of themselves is what they're meant to do.

I grappled with that myself. My own story came with such strings attached. Not knowing if the kidney would fit until surgery started meant I had extra what ifs to contend with. I wondered if, god forbid, the transplant couldn't take place, I'd donate my healthy kidney to a stranger. My family was appalled. I was on the fence. I didn't even want to think about it as I hoped beyond hope that all would work for my brother. But the inkling was there. If I was willing to go through this for him, could I do it for someone I didn't know? Would I? Should I?

Major questions. For the first time in my life I chose to be an organ donor on my driver's license. Why had I never done that before? For me, I think I was too uncomfortable thinking about what that meant. From here though, after giving up a kidney, how could I not give to others in need.

I've felt before that one of my jobs on this planet is to start conversations people are necessarily comfortable having. It's starting to feel like this might be the next one.

Saturday, August 13, 2011

the way things were

Yesterday morning a friend asked (through a words with friends message), if we wanted to have dinner last night. I had another dinner plan pending and, as it was such a stunning day, asked both families if they wanted to have dinner upstairs instead of going out - our building has a spacious roof deck on the 17th floor with panoramic views of NYC, everything from the Empire State Building to the Hudson River to the new Freedom Tower that's now taller than everything else in its vicinity. Sunsets are stunning.

Coffee plans with someone else fell through and when I mentioned perhaps roof dinner, she excitedly said yes and asked if she could bring a friend. That brought the total to 12. And later, when talking to my brother, or perhaps we were texting, I discovered he was still in the city - would he like to join us? That yes brought the total to 14.

14 people for an impromptu dinner party.

That used to be matter-of-fact. Most summers we had people over on a regular basis, always super casual, generally last minute, but the gift that is dinner in the open air at sunset is one that needs to be shared. This year though, I haven't been up to it. Up to the planning, the organizing, the preparing, the chatting, the entertaining, and the massive clean up. Even the inviting has escaped me for the past couple of months. I've been wary of making plans, worried the exhaustion would hit and I wouldn't be able to handle or cope with pieces I'd put in place.

Yesterday though, something was different. There was no second-guessing or doubts flirting at the edges. I emailed Jon to let him know what was happening and he asked who'd be doing all the work (he's the big set-up person). I realized I couldn't leave it all to him, so we kicked it up into high gear.

The kids and I cleaned the apartment. Washed both dogs (this wasn't necessary for dinner, but it needed to be done). I went to a kick ass yoga class, headed up to Trader Joe's on the way home, and trudged back 10 blocks, a heavy bag slung over my already sore shoulder. Then a trip to the supermarket to pick up enough watermelon for slushies.

I roasted potatoes in olive oil and sea salt. Put together a mozzarella and grape tomato salad. Sliced watermelon, cantalope, blueberries, strawberries and raspberries. Pureed more watermelon than you could imagine. Found plates, utensils, glasses, serving bowls, trays.

Someone brought delicious cold sesame noodles. Another backed an incredible summer fruit pie.

As the sky moved through pink, orange, and purple into cobalt blue, a luminous moon rising over the east side, we ate. And talked. Caught up. Hung out. We lit candles and sang happy birthday to the many people at the table who'd celebrated a birthday in the past few months. The kids went in search of helium balloons and entertained us with squeaky voices in the dark.

Then we wandered downstairs, piles (and piles and piles) of dirty dishes in hand. The puppies were delighted to have so much attention. And so people stayed. The last guests left after 11.

I made it through the entire day and night as myself. No walls of exhaustion. No necessary naps. No anxiety rushing in to take over.

It was a good, good night.

I am so grateful for the friends I have. For my amazing my family, who can pull remarkable things together.

And for watermelon, without whom the night wouldn't have been what it was.

Friday, August 5, 2011

how much is that kidney in the window?

I wrote a piece at Huffington Post about paid kidney donations:

http://www.huffingtonpost.com/elissa-stein/how-much-is-that-kidney-i_b_919989.html

it brings up a lot of questions . . .

before and after

This small world story will make sense so stick with me for a bit:

A few weeks before the transplant, as I sat waiting for a yoga class to begin, I recognized a woman in the back of the class. We'd belonged to the same gym, years ago, and I spotted her in the neighborhood every once in awhile, although we never said hi. With time to kill I started chatting, as I do, and discovered she was now a regular at my studio too, although we hadn't crossed paths. Eventually the impending surgery came up, as it so often did, and she mentioned her neighbor was waiting for a new kidney. Small world - how often do you meet someone who knows someone in such a similar situation. I wondered I she could have been talking about my brother, but she lived in a different neighborhood.

The she mentioned he was vegan, that they shared a love of vegan cupcakes.

I asked if his name was xxx.

Yup.

Was his last name xxx?

Yup again.

My brother's office is in her building. She's known him for years. In fact, the week before, I'd helped pickout cupcakes for her at a vegan bakery in NJ we'd road tripped too.

Now it was a serious small world story.

So here's the relevant part: I saw her in class the other day. After telling me how great she thought I seemed (thanks D!, she mentioned how amazing my brother looked. That the grey pallor and dark smudges under his eyes that had been there for so long were gone. That his energy level,compared to what it had been, was remarkable.

It was hard not to cry.

I've notice these things but to hear it from someone else, someone not intimately involved in the whole thing, who had such a clear view of the before and after, was amazing. Gratifying. Thrilling. So much time has passes that my kidney adventure is fadin into the background. The rest of life is coming backup the forefront. It was a gift to be reminded of what a positive difference that kidney is making.

Tuesday, August 2, 2011

words with friends

At dinner last week with a bunch of friends - my super cool book club to be more specific - I mentioned that I'm rather addicted at the moment to Words with Friends.

Silence spilled across the table. I sensed distain, pity, discomfort. It seemed they felt sorry for me and my time-wasting ways.

Before I could leap to my own defense, conversation moved on.

And then yesterday, I read a blog post of someone I admire, justifying her own WWF habit. After I caught up on my 10 current games (including one with the writer of that post), I thought I'd explain my own habit.

I play with my brother. Before surgery he gave me a WWF hard sell but I was too busy contemplating the transplant to contemplate anything else. Afterwards though, as we hung out in the hospital for hours and hours, wincing and waiting for the next dose of pain meds (actually last part was just me), we started playing. Me on my iPhone, my brother on his iPad. He trounced me just about every game. When I'd lose by less than 100 points, I'd feel smarter than usual. We played around the clock as neither of us were sleeping through the night.

It was good to know he was there. Reassuring. After all we'd just gone through I appreciated this means of being connected.

It became one of the many ways we stayed in touch. At that point we were texting, emailing, talking on the phone, commenting on facebook posts and sending messages during word game. Keeping track of how the other was doing as we adjusted to post-transplant reality. We were so often in contact before surgery and I had wondered if that would stop as we went our separate ways.

And so WWF is more than a time drain for me. It's one way of staying close to my brother as real life seeps back in.

Monday, August 1, 2011

me and my kidney

Last night, as I was getting out of bed to pee yet again, Jon asked if I noticed any difference with just one kidney.

Nope.

Not that I expected to feel an empty spot by my back left ribs, but I wondered if Ida (Sidney's remaining partner), would be up to the task of dealing with the huge amounts of liquid I consume.

Now that it's summer, homemade slushies are just about an every day drink. If you haven't pureed watermelon and then added ice to the mix, you're missing out on something extraordinary. I also go through tons of milk, organic chocolate powder and ice—your basic frozen chocolate milk. Cold soups (the fresh pea and mint at Pret) are seasonal faves. And then, there's water. I drink a lot of water. Seriously, a lot of water. Not iced. I'm a fan of room temperature.

One thing I learned during my transplant odyssey is that my remaining kidney, much like the Grinch's heart, would grow. 50 percent larger in fact. Perhaps that's part of post donation fatigue—the fact that one of my organs is actually increasing in size. And Ida is working around the clock. Literally. I generally get up more than once during the night to pee.

8 weeks post surgery and I'm peeing up a storm. I'm amazed at what my body can do. I am grateful that my brother got one kick ass kidney. And I'm delighted with the one that's left.

Friday, July 29, 2011

transplant karma


I wrote the other day about how I lost the elephant bracelet I'd been wearing since the day I found out I was a match. I thought about ordering a new one, but it wouldn't be the same. I started wearing the bracelet Jon had been wearing, one of the 18 I'd made for friends and family, but that's not the same either.

I missed mine. It symbolized a link, a hope, a period of time that was intense and profound and life-changing.

And then yesterday, as I hung my ganesh necklace around the buddha statue it stays on at night, there it was. The elephant. My elephant. Lying there as if it was a gift on an altar.

I have no idea how it got there. No one here is owning up to finding it and leaving it for me.

But somehow, that little symbol found its way back.

I'm attributing it to transplant karma.

Wednesday, July 27, 2011

to be a donor

Yesterday, on twitter, a potential kidney donor wondered if it would be ok to ask me some questions. I sent her my email and last night heard more of her story. At the moment she's at one of the unexpected roadblocks that, in retrospect, are inevitable in such a complicated process. But, what she was really concerned with was facing surgery and the fears that go along with it. 

The day before my surgery, while dropping my brother off at the hospital - they wanted to fit in one last dialysis session - I told him how the thought of the many thousands of people how were operated on and were fine was helping me deal. He answered: yes, but how many people choose to go through surgery solely to help someone else? 

Donors do. 

And so, for us, there are things on the table most people never have to face. 

Like going into an operating room as an exceedingly healthy person, knowing you'll feel like hell on the other side. Accepting that you'll be giving up an integral organ, permanently. Knowing that your actions will change, if not save, someone else's life. 

There are, at least there were for me, profound emotions and experiences that went along with donating. I have two still pretty young kids and a husband whose feelings and fears went into the mix. Friends and family, people close and almost strangers who called me everything from a hero, a saint, a life-saver, an inspiration, to whiny, selfish and overly-dramatic. One woman asked how I could possibly do this as one of my children might need a kidney in the future. Someone else wondered if I ever considered all that could go wrong, like not waking up after surgery. More than one donor told me to suck it up and shut up as my words might discourage potential candidates from being tested. And then others would look at me with tears in their eyes, astounded at what I was taking on. 

Every experience is different, every donor's reactions unique. You can't imagine how you'll handle it until you're in it. But it changes you. Forever. Just the generosity of being tested, of contemplating this gift, is huge. Strangers I found on facebook and twitter, who've been down this road, made a profound difference to me. 

And if I can pass on that donor karma, I'm grateful. 

Monday, July 25, 2011

7 weeks out

A couple of hours ago, as I was picking Jack up at camp, I walked, fast, to avoid the rain.

Then I realized: I was walking fast. Fast. My normal NYC, going places, quick paced fast.

And I felt fine.

This past weekend I was at a wedding in Maine. Nervous beforehand that I wasn't up to the trip, I survived the endless car trip, driving hours myself. I explored new towns. Went to the beach, twice, in a bikini no less. Swam in the frigid ocean. Played football catch with Jack. Shopped with Iz in 101 degree heat. And danced for hours. And hours. All without the usual midday nap my body's been craving post-surgery.

Not to say I didn't crash. I did. There were times I was so tired I couldn't talk, could barely hold my head up. While driving I felt fatigue creeping up and had to pull over within minutes as I knew I shouldn't be behind the wheel anymore. And I've noticed that my energy for chit chat isn't back to where it usually is. It's exhausting to be up and talkative—at the wedding I spent much time sitting alone, hidden from the party. And that was ok too.

Seven weeks out I almost feel like the surgery didn't happen. Aside from the scars, which are healing very nicely, I feel fine.

Fine.

My brother does too.

Life is good.

Thursday, July 21, 2011

lucky charms

I noticed yesterday, that the elephant bracelet I'd been wearing since the day I found out I was a match was gone. I don't remember the last time I noticed it - after all these months it had become almost a part of me. I realized I don't think it was on my wrist in yoga the day before and perhaps it wasn't there the class before that. 

I'd found out I was a match on 12/23. Later that day,  as I wandered through the Union Square Holiday Market I thought it would be cool to give a my brother a commemorative present, a good luck charm for the upcoming journey. Having said that, I had less than no clue as to what I could possibly find. 

And then I saw the elephant bracelet: a silver charm with an upturned trunk on a red cotton string. The sign posted next to it explained that elephants are symbol of good luck and good health. Plus, my favorite Hindu god, Ganesh, he of the elephant head, helps one to overcome obstacles. 

I bought 2, one for each of us. The next night, as my brother opened them up at our annual Christmas Eve at his house dinner, I felt pretty silly. He doesn't wear things like this.  But, he said that this he would. Only it didn't fit. The next day the vendor kindly resized it. Still too small. 

I emailed the jewelry designer with my dilemma and she graciously offered to fix it again. A couple of weeks later it arrived in the mail and he's been wearing it ever since. 

I found similar charms and made 18 more bracelets to share with people. Iz and Jack are still wearing theirs. Jon and my brother's wife wore them around the clock for months. 

I imagined I'd always have my well-worn symbol of this unique shared time, the red string frayed and broken, the charm scratched and nicked. But, it wasn't meant to be. Now my brother and I have matching  abdominal scars. Not quite identical - his is much bigger - but we got them at the same time. 

And we'll have them forever. 

Tuesday, July 19, 2011

self conscious

Usually, in the summer, I'm a vision of vintage madness. It seems the brighter, the splashier, the more flowers in op art patterns, the better. After collecting for a few years I've learned I'm attracted to Hawaiin bark cloth dresses from the 60s and I wear them with great enthusiasm. 

This summer though, I've reverted to black. Shapeless sundresses that hang from my shoulders. I have hangers of these boring, run-of-the-mill standards that have become my uniform. 

I realized today, it's because I'm not comfortable in my skin. The surgery threw me off. My body, that I generally know so well, is different. Aside from the carb-packing weight I gained post-transplant, I'm still swollen. My lowest incision, just above my pubic bone, is puffy and distended. Not in an unhealthy way, but it's apparent something went on there. Plus 3 weeks of no yoga and the subsequent tip toeing back to where I was is making me want to hide. 

Years ago, when I was anorexic, I did the same thing. As much as I could I faded into the background. 

Then today, as I was walking through the west village, I saw a dress on a mannequin in a store window. Sleeveless, A-line, carnation pink at the top with the brightest of magenta flowers extending up from raspberry at the bottom. I went in. It looked small but I tried it on anyway. 

It fit. It was me. The old over-the-top me. I bought it to wear to a wedding this weekend. And then went home, left my brown skirt and black tank on the bed, and put on a mustard and olive sun dress, sprinkles with white hibiscus blooms. 

I feel self-conscious. Not at all at ease. But it's time to be me again. 

Monday, July 18, 2011

loser like me

6 weeks post surgery I'm feeling remarkably better. When I see a traffic light changing I'm back to running across the street to make it instead of waiting for the next one. My pants fit, although still slightly tighter than I'm comfortable with. My mind is racing, I'm contemplating big projects, I can feel the adrenalin, motivation, drive that was gone for most of the 7 plus months. 

And yet, I feel like shit right now. Frustrated by what I can't do. By my lack of work. The fact I didn't pull together enough things for the kids to do this summer. That I can't take on too much because I know the wall of exhaustion is still waiting to smack me on the head. 

This isn't about the kidney anymore. At least not completely. But it's getting harder to give myself a break as more time passes. 6 weeks out and I guess I feel like I should be fine. That, I suppose, is a magic wish. I wasn't fine before. I mean, I was fine. I am fine. But there were always issues to grapple with and now that I'm easing back into my life they're still there. Donating a kidney didn't change any of that. I'm still really hard on myself. I still focus on the worst parts of me. I still beat myself up over where I'm not. 

I wish I could see myself the way other people see me (except you, anonymous). I wish I could step back and see the bigger picture instead of getting caught in the muck. I wish I could treat myself with appreciation instead of disdain. 

I've got my work cut out for me. 

Sunday, July 17, 2011

selfish

Yesterday I found this comment, on a recent post about how well my body was healing:

its always about YOU< YOU< YOU ...never the recipient..how selfish...

First reaction: I laughed. Out loud. How ridiculous that someone was complaining about me writing about me on my blog. And then, to call me selfish—when writing about the experience of donating an organ?

Second reaction: I'm pretty sure I know who wrote it. And had to laugh again at how someone can so bravely hide behind the cloak of anonymity. But meanness shines through.

Third: I was touched that my brother came to my defense, posting for the first time here. Thanks bro.

And I owe him another thanks for being so accepting about me sharing my experience here. Until somewhat recently he'd been exceedingly private about his health. I never really knew about the issues he'd been grappling with his entire life and just what caused them until we were adults. My family didn't discuss anything like that. It was all kept deeply hidden. When my brother and I started down this path I asked if he was ok with me writing it out. If he wanted to read what I wrote first—I never wanted to post anything he was uncomfortable with. He said no. My journey in this was mine to share however I wanted.

And I shared. This blog has been my outlet, my therapy, my solace during some of the most intense months of my life. I've found comfort, support, encouragement from people from real life and others I've never met. Not only that, I've heard my posts have helped others on this path. For me, especially right after surgery, it made a huge difference to hear from other donors who knew this. They'd been here. That I can be that to someone else is serious karma.

Selfish? Yeah, I can be selfish. We all can be. Have I been selfish here? Sure. I've spent countless time expressing my ideas, thoughts, fears. Anxiety, insecurity, pain. Joy, excitement, thrill. Gratitude. Appreciation. Amazement.

This is my story to tell. And that's all I set out to do.

Saturday, July 16, 2011

meant to be

Now that my focus isn't just on me and my own journey, I'm discovering that despite the many twists and turns, starts and stops, ups and downs, and anxiety-driven meltdowns (those were all mine), my brother and I were lucky.

Really lucky.

There are so many, too many, people out there who are suffering on their quest for a kidney. People who can't find a matching donor. Or those who find one (or 4 as I read today), and for whatever reason, things don't work out.

A man who lives across the street's girlfriend is in renal failure. Not one of her 4 brothers and sisters will get tested.

The daughter of someone my brother knows was all set for a transplant last week. But it seems the donor backed out at the last minute.

Someone I follow on twitter has been searching for a match for her brother for over 3 years—she isn't one herself.

A friend on facebook was set to donate this month but it turns out her surgery would be more complicated than expected and now they're hoping another sister will turn out to be a match.

Sigh.

And so, I'm putting this out into the universe: while donating an organ is HUGE, it's also not that big a deal. I mean yes, on the one hand it is a really big, life-changing deal, but now that I'm on the other side, healing and getting back to my life, I know I'll be fine. And I changed someone's life in a profound way.

While I try, when writing, never to repeat words, it's not a coincidence that I couldn't find substitutes for the word "life" in the last paragraph. Donating is giving life. Changing life. Improving life. And not just for the recipient. I will never be the same for having gone through this experience.

Thursday, July 14, 2011

miracles

Yesterday in class, about a third of the way through, my teacher leaned over and whispered in my ear: you're a miracle. 

I knew that she didn't mean that literally. But in her class I was finally moving like myself. Twisting, bending, balancing. Extending, sweeping, fully present in the flow. I did every plank/up dog/down dog. Bird of paradise with my leg extended. Bound extended angle. Half moon, not touching the floor. Eagle into warrior 3 into leg extended straight out holding my big toe into dancer's pose. Headstands away from the wall. Side planks holding my toe, leg stretched up to the ceiling. 

I was drenched in sweat. Crazy dizzy at moments. I got home and was toast for the rest of the night.

But, this is 5 weeks post surgery. When I take a step back it is amazing, how a body can heal so well from such a shocking and invasive experience.  I've been tentative all this time, worried I couldn't handle or I'd hurt myself or take on to much. Recovery is walking a very fine line between getting back to where you were and respecting where you are. 

Today I drove for the first time, at least more than moving the car to the other side of the street. We took the dogs for a long walk by the river. And I'm exhausted. But that's ok.   

After alternate side I have a meeting about a possible film project. And then, I'm crashing. For as long as I need to. I am so grateful to have the time and space to find my way back to where I was. Or to somewhere new. I'll see how it goes. 

Wednesday, July 13, 2011

overdoing it

For the past 2 days I've been thrown back into regular life. 2 kids in 2 different camps in neighborhoods in opposite directions. Work. Laundry. Countless trips to the supermarket. Walking the dogs. Dinners. Showers. Shopping excursions for baseball gear and blenders.  It's been oppressively hot. And by the time I was walking to my second yoga class in 2 days, dizziness hitting me as I walked up 6th Avenue, I realized I hadn't been eating. 

I grabbed a banana on the way to class, pushed myself through challenging poses I hadn't done in 5 weeks and then spent an exhausting night battling insomnia, barking dogs at 1am and Iz's  dehydration cramps at 3. 

This morning I took both pups out, dropped Jack off and then walked a mile home, slowly, stopping along the way as waves of unsteadiness washes over me. 

I came home, crawled into bed, and stop pretending I was fine. I crashed for an hour and a half, finally letting myself be where I was, not where I thought I should be. 

I'm still healing. I'm still not fine. I'm so much better, so so much better, but I can't push myself the way I did before. 

To be honest, maybe I never should be pushing myself that hard. 

Maybe it's time to give myself a break and let the healing run its course. 

And so today I'm lying on the couch. Sitting still. My feet up and my mind quieter than it's been. 

Yoga later? It's only a maybe. 

Tuesday, July 12, 2011

re-entry

Even though I'd written in my last post that I was just about done here, I'm taking it back.

This story doesn't ever really end, it shifts and changes as I continue to heal, as life gets back to a semblance of what it was, as my body and my mind ease back into their respective grooves.

5 weeks and one day out I'm amazed at how fine I feel. How back into myself I am. How the previous six months seems to have quickly faded away. Aside from intense fatigue periods every day and the sensation that my insides aren't back to normal yet whenever I pick up something to heavy or try and twist, especially to the left, it's almost as if the surgery didn't happen.

In every yoga class I take, something gets added back to my can-do list. I've done headstands in the middle of the room. Yesterday I did side plank holding onto my big toe, my leg extended up to the ceiling. That's not easy any day. And I was shakier than usual. But, it's coming back.

I've got 4 creative projects to work on this summer. One is my first film collaboration. Just talking about any of them is a huge leap for me. During the kidney journey, my creativity wasn't just back-burnered, it went missing and I was terrified I'd never have those flashes again. The drive isn't back yet, but I'm not beating myself up over it.

What I am feeling badly about is my body. It's hard to hold onto the fact that it's in remarkable shape, that it gave up an organ and is still chugging along, that it's healing so beautifully, when I feel this fat.

Yup. Fat.

The weeks of post-surgery carbo loading, the middle of the night mac and cheese, the early morning bagel runs and left over pasta-fests caught up with me. Add to that that I was far less active than usual, that I was sleeping far more, that exercise is only starting to find its way back and I'm feeling swollen and bloated and huge.

For those of you of a certain age, I'm channeling Mrs. Roper at the moment. Give me a caftan and I'd be set.

I'm not sure how much of this is real and how much is the destructive part of me beating myself up for not being as perfect as I can possibly be at any given moment.

The good news is I'm not taking it that seriously. I'm not chained to a stair master or living on lettuce. I'm wearing clothes that are comfortable and heading to bed when I feel exhaustion set in. I suppose I could say I'm more at ease being me. The me I am, not the me I think I'm supposed to be.

Although I don't know that I'll ever come to terms with frizzy summer hair.

PS . . .

I've not done this before, but after posting this post, turns out there's more to add:

It's not just feeling fat. It's feeling old. Not that I "feel" old, but having my body compromised at the moment is giving me more time to look, in depth, at what's drooping and shifting. The wrinkles in my elbows. The thighs that Iz made sure I know should not been seen on the street. The sundresses that used to look cute that now make me look like I'm trying to hide something. The puckered skin around my scars that make me wonder if I'll be able to be seen in a bikini again.

I was feeling good before surgery. Powerful. In shape. Capable. Healthy and strong. I was comfortable in my skin and ok with not being super skinny and the aging changes. But from here, not so much. Maybe when I'm fully back in my flow, it'll be easier. At the moment though, it's hard.

Friday, July 8, 2011

the next chapter

I am now a donor. On the road to recovery. There's not much left to tell at this point. 

I feel better. I feel tired. I feel swollen. I feel relieved, grateful, at times overwhelmed, at others surprised by all the admiration. 

I will continue to heal. My scars ache less. My energy is coming back. Surges of drive and anxiety are surfacing. And with that I'm feeling like here  isn't where I need to spend my energy anymore. 

This blog kept me sane during one of the most intense periods of my life. I don't know how I would've coped if I didn't have a place to process, to voice my fears, to share what was going on inside. Being able to let it out helped me let go. After this experience I now can comfortably call myself a writer, this after years of making excuses for not really being one in spite all I'd put out into the world. 

I had an epiphany the other day. Not just that writing this experience is my next project, but that this is the story I'm meant to tell. FLOW was part of my training. It wasn't my path, but it was an integral part of a bigger path. The stories I tell, those that resonate the most, the ones people read and respond to are me writing about my life. 

This transplant was and is a part of me. But, the story is not just mine. It's my brother's, our family's, the transplant team's. It also belongs to our friends, to neighbors, to strangers we've met along the way. 

That is what I'm meant to tell:

Sidney's Big Adventure - the stories of one life-changing kidney transplant

Thursday, July 7, 2011

heroes

Adjectives that have never been used to describe me before have been flowing for the past few weeks.

Angel. 

Life saver. 

Life giver. 

Hero.

I've been called a hero many times lately. By total strangers. By acquaintances on the street. Most meaningfully by Jon. And by my brother. 

Those are huge shoes to fill. To be seen as, thought of as a hero. Truth is, I am who I always am. I gave my brother a kidney because he needed one. Because he's been ill for so long. Because there was finally something I could do to help after all these years of just watching him get worse. It wasn't a big decision to make. It just was what needed to be done. What I needed to do. 

I'm seeing though, that plenty of people out there don't feel the same way. I've heard of siblings who won't get tested. Of families falling apart over decisions made. Of people waiting for years, hoping someone will step forward as their health steadily declines. 

I've also seen people who donate to strangers. Who save someone's life that they don't know. Of families who rally with fundraisers and facebook pages and twitter hashtags, seeking help for those they love. Of spouses and friends who choose to go through the months of testing and waiting, invasive surgery and then recovery, to selflessly help someone else. 

I suppose there is no more appropriate word for them than hero. 

he·ro
[heer-oh]
- noun, plural-roes
 one admired for brave deeds, noble qualities, etc.

Yup. That fits. 

So if a = b, and b = c, then by default I am a hero too. 

I don't feel like a hero. I'm sitting here 
grappling with the weight I've gained, with frizzy summer hair, with feeling like an irresponsible parent for not keeping my kids occupied and entertained this summer. I can't see the bigger picture from here. 

But maybe it's not about a bigger picture. Maybe it's accepting  a hero is someone who steps out of their own life and does what needs to be done.  It's just a part of who they are. 

Of who I am. 

Wednesday, July 6, 2011

almost like it never happened

4 weeks and 2 days post surgery, there are hours during the day I forget the transplant even happened. I wake up with my mind whirling through all I need to do. My energy is back. My focus, that had been missing for so long, is showing signs of return. I'm increasingly aware that I need to find my own path again. For 6 months donating was my top priority, my main concern. It consumed me, whether through lab visits, testing, the endless waiting and what if conversations. 

My life opened up for me to be fully available and present. Or, maybe it's more that I withdrew from life so I'd be as free as I could be. 

4 weeks and 2 days post surgery I'm healing. I'm healthy. Yes, my scars are still tender. Yes, I still get hit by waves of fatigue that knock me flat. Yes, I'm not strolling the streets at my usually pace.  Every day though gets better, easier as I ease back into myself. 

So now what?

As I was told by someone in my family last night, I can't play the kidney card anymore. 

It's time to figure out what's next. For me. I am now a kidney donor and will carry that with me for the rest of my life. It sort of feels like becoming a mother. Once you are one you never lose it. It becomes a part of you but it won't always be the only thing you do. 

At the moment though, I'm a bit flummoxed.  I'm picking up the pieces of all that I lost track of. I'm dealing with the repercussions of no camp for the kids, a closed bank account, taxes that weren't filed. The puppy that needs to be spayed. The physicals for Iz and Jack that should have happened 2 months ago.  It goes on and on. 

One thing I want to do, need to do, have to do is write this transplant book. The experience is fading. Fast. And it's a story that's so worth celebrating and commemorating. 

It's now just a matter of taking a deep breath and diving back into my life, leaving this limbo behind. 

I'm getting closer to the edge of the pool. I'm thinking I'll be getting my feet wet without even realizing I'm in. 
 

Monday, July 4, 2011

4 weeks today

This morning, as I sat waiting for my yoga class to start, sitting more comfortably on my mat than I have since the transplant, I realized that exactly 4 weeks ago I was in surgery.

4 weeks ago I was unconscious, sliced open, pumped full of air. My organs were shifted and moved about. And my kidney left, forever.

4 weeks ago I changed someone's life.

And in the past 4 weeks I have been amazed, astonished, and blown away by how much a body, my body, my brother's body, can handle. How we can adapt. How we can heal.

How a part of me is hard at work somewhere else. Helping someone to be healthier than he has in a long, long time.

These past 4 weeks have been many things. Trying. Uncomfortable. Full of unknowns and doubts and trepidation. Plunges back into my dark side. But they've also been filled with hope. Appreciation. Gratitude. Feeling my body and my soul ease back towards center.

I can move again in class. I can imagine new projects. I can tackle the months of paperwork that's piled on my desk. I can walk a little bit faster every day.

But I can also step back when I know my body needs a break. I can let go and stop pushing myself so hard. And I can easily imagine when the scars are all that remind me of this experience. That, and my brother feeling well.

Sunday, July 3, 2011

something to prove

Yesterday in yoga, my fourth class of the week, I found myself moving through poses I would have found challenging any day. No, I didn't do everything: I can't backbend, lie on my belly or twist comfortably yet, but I was in the groove. 

We then took the dogs for a long walk, had dinner out, and stayed up late watching a movie. We ran into an acquaintance at one point during the evening, visiting the city for a
week, and he asked if we wanted to hook up for a long bike ride. I mentioned I wasn't up for it yet, that my stamina still needs building back up. 

He was incredulous. Apparently I'd seemed so myself he'd forgotten I had surgery. 

I've been trying to forget it too. 

Our plans to head to the beach were rained out and I couldn't stand another day at home. So, we hopped into the car and went suburban shopping. I had no idea perusing the aisles of Target could be so exhausting. Usually an avid shopper I wandered listlessly, nothing, not even summer shades of nail polish able to break through the fatigue. 

I was tired to the point of nausea. Or, the discomfort in my abdomen could have been from wearing pants. Or, yesterday's over-stretching could have caused the soreness deep in my belly. 3 of my 4 incisions hurt, sometimes cramping, sometimes stinging. 

I came home, pulled on sweats, crawled into bed and crashed. Hard. 

On the other side of a 2 hour nap I've learned a lesson. I have to be better to myself. I have to respect what I've been through. I have to stop feeling bad and guilty and like I'm failing because I can't do everything myself. 

It's ok to ask for help. And it's ok to not be back in my game yet. I will be. But it'll happen faster if I move with ease instead of force. And if I give myself a break. 

Saturday, July 2, 2011

will the real me please stand up

Last night as Jack and I were doing the after dinner dog walk, a neighbor stopped me. She was so happy to see me, she said. She'd be thinking about me and what I did. She wanted to tell me that she thought I was courageous and brave, generous and selfless. And that she'd be planning to write me a note but it meant so much more that she got to tell  me in person. 

She had tears in her eyes. By the end of her tribute so did I. She then turned to Jack and asked him if he knew how amazing I was. He muttered a half-hearted yes. There are few things that irritate him more than when I stop and chat, which happens fairly often. 

For 5 minutes or so I basked in her admiration. But that glow soon floated away like a bubble. 

I don't feel like that person. 

Right now I feel like my thighs have never been fatter. I can feel the skin sagging under my chin. I know there are muscles in my upper arms but they're engulfed in jiggles. 

Even my feet are starting to look old. 

I can't wear pants. I can't seem to wear any of my vintage anymore. I'm living in shapeless black sundresses which, for those of you who know me in the real world, goes against my entire fashion sense. 

My entire family is in Vermont right now for a bar mitzvah and I'm not. I didn't think I was up to the 7 plus hour car ride. I wasn't sure I could handle all that goes along with flying - the trek through airports, dealing with luggage, various cars. And right now I am so disappointed in myself. I can usually push through anything. I have fierce willpower and drive. I've done what many would think impossible, or at least crazy. 

And now I'm flat on my fat butt wallowing in timid.

It is stunningly beautiful out and I'm afraid to do too much. Everyone's looking to me to make plans and I can't. I'm the loser with a holiday weekend and nothing to do. 

Everyone I know is doing something different. Weekend houses. Beach. Travel. Classes. 

My days are nothing but feeling guilty about not entertaining the kids better, at needing to sleep, at getting increasing disappointed in myself for the limitations I still have. 

I can't control my body at the moment and it's making me crazy. I feel like a failure. I can't hold onto the reason I'm here and all the good that I did. I feel like that woman was talking about someone else. 

It's not even 8am and I'm dreading this day. This long weekend. The week ahead with 2 kids and no plans. 

I wish I could think of myself as the admirable, inspiring person other people see me as. 

But right now I can only see the opposite. And it's not pretty. 

Wednesday, June 29, 2011

coming back home

Yesterday I saw my super cool surgeon for my second post-surgery check up. Armed with questions, he cleared me for tattoos, bike riding (as long as it's not uphill), colonics (he also said colonoscopies are fine, not that that's on my to-do list), vitamins, driving, and yoga.

Yup. Yoga.

And so, I went to my first class.

My practice pants were slightly tight. The 2 weeks of carbo loading is starting to catch up. I slowly walked to the studio in sweltering heat, conscious of conserving energy I'd need. I even took the elevator that regularly breaks down as the stairs would have been too much.

My teacher did a double take when she saw me and then just beamed. Part of me that had been frozen for the past 3 weeks started to melt a bit as I unfurled my carnation pink mat in the back row.

I sat. And it was not comfortable. My back ached before chanting even started. I was acutely aware at how much trauma my body had suffered and the toll it had taken as discomfort bordering on pain radiated down from my shoulder blades.

But as I took a deep breath and a collective OM filled the studio, tears slid down my checks.

I couldn't stop smiling. And silently crying. Since surgery this part of my life that's grown to mean so much went missing. I couldn't find it myself. The calm and peace I'd found through the practice had disappeared.

Only it hadn't. It was more that I'd forgotten how to find it.

We started to move. My body was home. I know these poses so well I slid easily into the practice. Up to a certain point. Turns out there's much I can't do. Basic basics are beyond me at the moment. Holding a plank pose caused abdominal aches deep inside. Being flat on my belly was far too uncomfortable. Anything arching my back felt wrong. Side plank? I was acutely aware of how my strength had been compromised. And so, I compromised. I did what I could and let myself be fine with that.

There were moments I forgot my body wasn't fine. My hands still easily reached the floor. Warrior poses and triangle (my favorite) felt right. My balance was spot on.

At a certain point, as deep twisting began and my middle blatantly refused to go there, I quietly rolled up my mat and left the class. Turns out I'd made it 3/4 of the way through, lasting far longer than I'd ever imagined I would.

As I slowly, slowly walked home I let amazement and gratitude take over.

Three weeks and one day post-op I was back in the flow. Modified, but delicious nonetheless.

Yet again, my body blows me away.

Monday, June 27, 2011

21 days post op

This morning I was out of the house at 7:30 to help run a middle school orientation for new families. I spent the next 3.5 plus hours organizing, chatting, schmoozing, answering, intervening, re-directing, reassuring, and placating.

I was on. Seriously on.

Twice I had to sit on the floor in the corner of the stifling cafeteria the meeting was held in. Once I slowly made my way to the principal's office and sat quietly on a bench for 10 minutes, not able to hold my head up anymore. But, I rallied and headed back into the fray.

Three weeks post surgery.

Many at Iz's school knew about the transplant but it turned out not everyone realized it had happened. The incredulous looks on faces as I reassured them that yes, it was over and I was already healing were priceless. The amazement and enthusiasm and support of all those in the know blew me away.

At one point I walked, slowly, to the supermarket around the corner to pick up last minutes things we needed. And it hit me.

I only have one kidney.

Yup.

I. Have. One. Kidney.

And that is fine. Perfectly fine. Totally fine.

Every day I feel more and more like myself. And myself is an energetic, capable, driven. Enthusiastic. Motivated. Healthy.

Fine.

Three weeks post surgery.

This too is a miracle. To be down an organ and feel glimmers of my strengths washing back over me. These 4 incisions on my body that will always remind me that I was opened up and rearranged and that my missing kidney radically changed someone's life. And that I was brave enough to make the decision to donate and never waver or look back.

Sunday, June 26, 2011

not worth fighting for

Last night, as I was out walking the dogs, a woman approached me on the street. She looked vaguely familiar, I think she lives in my building. I smiled hello and she said: I heard about what you did. What a wonderful thing. Your brother is very lucky. And then she walked away. 

Over the past 6 months, I've been fascinated at how people have reacted to this kidney journey. People I barely know how come out of the shadows, treating me almost reverently for doing this. People I know well have been acting differently, as if I've morphed into a deeper, more thoughtful person than I was before. 

These reactions aren't about me, they're about what I've done. Donating a kidney is just about the most selfless thing someone can do. As my brother said when as I was dropping him off at the hospital, most people stare down surgery for their own reasons but how many choose to do it entirely for someone else?

Kidney donors do. 

I'm touched and grateful for this outpouring of support. As I (slowly) recover and find my center again, the karma that's bouncing back at me is easing the way. 

On the other hand there are many in my life who have yet to say a word, glancing away as I walk by, choosing not to acknowledge that I'm even there. Some are people I don't know well. Others I consider among  my close friends. Perhaps such an altruistic act makes them uncomfortable. Maybe they don't know what to say, how to act. Who knows. 

Its hard not to let myself fall into a dark place when confronting the obvious disinterest of those I thought I could count on. 

And then, there's family. 

I had a falling out with my father soon after my brother asked me to be tested. There was a day of escalating emails, of accusations and anger, fingers pointed and insults hurled that ended with his wife calling me a self-involved loser, a crazy fucking bitch and my father asking that I never be in touch with them again. 

We haven't spoken since. 

We went through this entire process without him. 

Knowing how deeply his wife has always resented me, it's not a surprise. But still. 

I was  lying in bed at 4am and it hit me, that to him I'm not worth fighting for.  Having a relationship with me causes a huge rift in his marriage and it's turned out, after all these years, to be easier to cut me off rather than fight for me. Even when two of your children are grappling with illness, uncertainty, endless testing and frustration and fear, she wins. 

But, as I'm writing this I'm realizing it's not about me. Not me personally. 

It's him. It's her. Their stuff, not mine. All I can do is be myself and that isn't going to work for everyone. 

Years ago someone once told me (and she meant it as an insult) I should be a cruise director, as that would address my obsessive need to be liked. Perhaps one of my lessons in all this is to let go of that too. 

Living by how others judge me only leads to self-doubt and insecurity. What I need to work on is owning who I am. 

And who I am just did a remarkable, brave, life-changing  thing. 

Saturday, June 25, 2011

3 weeks ago

This morning, after popping in to the Old Navy Tankathon that's been heavily advertised on facebook for days (if you're reading this in real time, don't bother - only XL steel grey tanks were left), I headed to my yoga studio.

Not to practice, more to see how I felt there.

3 weeks ago today I was bathed in sweat, smack in the middle of an hour 45 minute yoga class of nothing but Led Zeppelin. The playlist was a gift to me from one of my favorite teachers. I'd taken a class the night before and that was after a 10 mile bike ride. I'm not normally that exercised crazed, but while staring down surgery and recovery, I guess I wanted to fit in as much as I could.

Today I took the elevator to the studio instead of climbing the stairs.

I lasted less than 10 minutes sitting on the floor.

I slowly, slowly, slowly walked home, slightly light-headed as I navigated the heavy Saturday traffic on 6th Avenue.

But, I had made it through the door.

Hey, just the fact that I thought of stopping by was a huge leap from where I've been.

Up until now I hadn't even thought of yoga, of moving, of being back to where I was. I've been so consumed with the here and now, not in a particularly good way, that I lost track about what was. And what will be.

My life was uprooted, my center shifted, my equilibrium thrown off course. Things I took for granted are impossible at the moment.

There's still much healing to be done. Both by my body and my mind.

There's also much to let go of. The anticipation. The roller coaster. The fears and doubts. So much was stored up inside, whether I was aware of it or not. This experience shook me. Hard.

Today though, my center made a surprise appearance. As I sat in the pink and orange room, leaning against the sun-drenched wall, staring up at the painting of Ganesh I love so much, my heart filled. My soul eased.

And I knew I'd be back.

Friday, June 24, 2011

changing expectations

For 6 or so months, my life was filled with expectation. No matter how hard I fought them, no matter how much I tried to stay in the moment, no matter how grounded I tried to be, it was impossible not to feel what loomed in the future.

Through it all, in spite of the anxiety and panic and frustration bordering on anger at times, I was fine. Very often emotional toast but, for the most part, physically fine.

On the other side of this, I'm not so fine. At least not yet. I'm getting more fine by the day, but I'm in an entirely different place. My body has gone through just about its biggest smack down ever. Even though I gave birth twice, drugs weren't such an issue. And what left me was supposed to. This time I gave up an integral part of my basic biology. There's healing to be done. Incisions to mend. Shock to overcome. Gas to pass. New pathways to be created at fundamental levels.

Partnered with these physical challenges is the death of expectation. It's over. We're done. One of my kidneys has a new home. There's no more waiting and planning and hoping and praying for all to work out.

It worked out.

But all that energy still needs to disperse, to dissolve, to get re-directed, re-absorbed, re-focused. Only I'm not up to the task.

Again, yet.

I'm beginning to think though, that the past 6 months is going to be my new project. To have lived through this truly life-changing experience is something most people never get to do. And this story has so many more sides than just mine that deserve to be told. A transplant takes two just to start with. And from there, there are so many who played integral parts.

Once the title comes, I think I'll be ready to start.

Thursday, June 23, 2011

no, I'm not a machine

Years (and years and years) ago, I broke my finger in a step class at my upper east side gym. The room was jam-packed with frenetic, cardio-obsessed women. The teacher was more a drill sergeant than an aerobics instructor. 20 minutes into class I kicked my middle finger doing a repeater step and knew that something cracked. Pain washed over me. My finger swelled, throbbed, turned purple. But, I finished the class. The next day, my middle finger wrapped tightly in a splint, I was back at the gym. I modified by riding an exercise bike, but I wasn't backing down from my usual schedule. There was no way a fracture was interfering with my work out.

I can be really hard core.

It comes from my anorexic past. My body became something to be mastered, controlled. It bent to my will, no matter how insane or unhealthy or ridiculous my will was.

I'm realizing, this frustration at not being Wonder Woman stems from that very self-destructive place.

I'd thought I'd left that part of me firmly in my past. And for the most part I have. But, in extreme situations, it comes flooding back. Not the need to exercise until I can't walk. Not the starvation (I'm eating a vegan cookies and cream cupcake as I write this), not even the feeling fat part. But the profound disappointment in myself at not being able to control everything I want to is back front and center.

What's such a shame, what's pathetic really, is that it's keeping me from truly celebrating this amazing thing I've done. And I've done an amazing thing. Yesterday, as I felt more like myself than I have since before the surgery, I thought about writing out a total gold star post. Because, deep down, I'm so proud of myself. Or at least I must be. I haven't gotten to appreciation yet. I'm trapped in this darker place.

I've lost my center. I've lost the peace and calm and ease I had finally found after these last few tumultuous months. Today, at accupuncture, the first positive thing I've done for myself (besides nap), in a long time, Patsy looked me squared in the eye and said: you're not a machine. She stressed I can't expect to have gone through the major, big deal surgery I had and expect all to quickly go back to normal. Not only does my body have to heal from being cut open and hard core drugs, it has to create new pathways, learning to live one organ down.

That takes time.

Patience.

Empathy and understanding.

None of those are easy for me when it comes to me. In fact, all the above go against who I've been for most of my adult life. But, before surgery there were glimmers of acceptance and letting go.

Sigh.

I can't see that from here. But I'm hoping I'll find there again.

Tuesday, June 21, 2011

chocolate cake

Sunday night, as my brother was leaving, after we did our not-so-secret handshake (inspired by a photo of Grandma Rose from the early 60s), he said: thanks for the kidney. I said: thanks for the chocolate cake. 

And that was that. 

(a quick tangent - the chocolate cake was from vegan treats and was outrageously delicious)

It was the first time we'd seen each other since I left the hospital. It was also my birthday and father's day.  To celebrate we had dinner up on my building's roof as the sun set. 

My brother and I are exceedingly low key. There's almost no gushing or emotional monologues or mush. We've always been like that. It comes from him. I, if you haven't noticed, can be over the top in many ways. He's far more pragmatic. 

As he first walked out of the elevator though, it was hard not to burst into tears. 

He looked so good. The dark smudges that had permanently moved in under his eyes were gone. His eyes themselves were brighter. His skin had a healthy glow. He even seemed to be standing up taller. 

As we sat upstairs, chatting away, every once in awhile the reality of what we'd just gone through sank in. 

A miracle.

Less than 2 weeks after surgery, there we were, hanging out, my former kidney hard at work - not to mention doing an amazing job - beneath the gauze bandages traversing his abdomen. 

When you sit back for a moment and think about it, it's amazing. Beyond amazing. Ridiculous. Impossible. Far-fetched to the point of fiction. Only it's real. 

He handed me a snapshot of a sonogram. He'd asked for a copy for me the last time he'd been to the doctor. And there was Sidney in his new home. 

Wow. 

The enormity of it all hasn't sunk in yet. I'm tired, more tired than I've ever been. There's much healing still to be done and my patience has left the building. It's not easy for me to take it easy. I get down on myself for not feeling better, being farther along the road to well. 

But, I'll get there. And as I continue to feel better, the reality is starting to seep in that I did an amazing thing. That I'm stronger than I ever gave myself credit for. And that what I did changed my brother's life. In a truly profound way.

Sunday, June 19, 2011

47

When I turned 40 I stumbled into a dark depression that lasted for 3 solid months. I was sure I was on a downhill slope, that the best of life was behind me, that I'd peaked without realizing I'd been there, and that'd I'd never do anything great or important or meaningful again.

I was wrong.

Growing up, 40s to me was old. Staid. A blip in the journey from adulthood to decrepit. From the vantage point of a teenager, 47 meant conformity, monotony, polyester pants and fondue dinner parties. Once you settled into the routine of your life, nothing changed. Ever.

I was wrong about that too.

Today is my 47th birthday. 13 days ago I did just about about the greatest thing I've done so far. I could only have donated a kidney if I was in the best of health, at the top of my game. I know I will heal from this stronger than ever. And, knowing my track record, I'll be doing something new and different on the other side of this.

No coordinated slacks sets in site.

This year I also got my nose pierced, was a PTA president for the first time, rescued not one, but two amazing puppies, and was able to do a headstand in the middle of a yoga studio.

Yes, there are furrows carved deep into my forehead that will be with me forever. Yes, the skin on my inner elbows is turning crepe-ier by the day. And yes, I will never, ever, wear shorts above my knees again (one withering look from Iz shut that door). But this aging body of mine just changed someone's life in a positive, profound way.

As I heal from this surgery, I know there will be ups and downs. Knowing me, how could it be any other way. But, from the other side, I am nothing but grateful that, at this point in my life, I'm not stooped and wizened, but powerful and on the verge of more.

47 is a place I'm thrilled to be.

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.

Nope.

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.

Saturday, June 11, 2011

how often do you get to change someone's life?

My brother went home today. In between our online rounds of words with friends (as usual, he's trouncing me), he kept me updated on last blood tests, discharge papers, how the dogs reacted when he walked through the door.

He's home.

I'm home.

Somehow nothing feels all that different. I'm swollen and bruised and tired. And battling gas that's taken on a personality of its own. But, I felt worse after I fell off my bike last fall.

And then I read my brother's latest post on facebook:

I can't believe this, but I am home. I have a few months of intense follow-up and I've got to avoid crowds during that time, but I'm home with a GREAT new kidney and a new lease on life.

There were endless enthusiastic comments below. I was touched by the support. Heartened by how loved he is and how thrilled people were to hear he's ok.

And then tears welled up and I started to sob.

This was because of me.

He's ok because of me.

I changed someone's life.

The months of angst and frustration have been wiped clean.

As a life-long cynic, nay sayer, non-believer, I am now standing in grateful. I'm basking in miracle. I'm a believer of possibility in spite of brick walls and dead ends.

I've been part of the impossible happening.

And Dave, I'll say it again, there's no place I would rather have been than sharing this kidney journey with you.

Friday, June 10, 2011

a (well-deserved) shout out for Sidney


6 months ago I couldn't have told you where my kidneys reside (around the back, under the ribs), how big they are (each is about the size of a fist, or what they do (cleanse waste from the blood, after which it's combined with water to form urine).  

Nor did I have any idea how brutal kidney disease and subsequent failure could be. How difficult dialysis is. How much life is compromised when these organs most of us pay almost no attention to, can't do their job anymore. How many things can go wrong deep inside that most of us never, ever have to think about.

My brother did. And as I joined him on this journey, so did I.

I just heard he's going home tomorrow. With Sidney chugging along, quietly and effectively doing his job. And so, I'm going to spend a moment giving my former kidney the shout out he deserves.

Unbeknownst to him, after invasive surgery, he was whisked out of the only body he's every known only to be thrown into a system that's been outrageously compromised for 45 plus years.

He made me proud. 

He started working right away. Not only that, he started doing great job. I'm going to get a bit technical here so bear with me. From the Mayo Clinic website:

Creatinine is a chemical waste product that's produced by your muscle metabolism and to a smaller extent by eating meat. Healthy kidneys filter creatinine and other waste products from your blood. The filtered waste products leave your body in your urine.
If your kidneys aren't functioning properly, an increased level of creatinine may accumulate in your blood. A serum creatinine test measures the level of creatinine and gives you an estimate of how well your kidneys filter waste (glomerular filtration rate). A creatinine urine test can measure creatinine in your urine.
Normal creatinine levels in a male are 0.6 to 1.2 milligrams (mg) per deciliter (dl) in adult males. When my brother started dialysis he was over 6. 


After surgery he was down to 4. 


Then 2.7. 


Then 1.4. That's when it seemed everyone was getting excited.


Yesterday Sidney got it down to 1.3, within spitting distance of normal.


This morning? 1.2. Yup, 1.2. Normal. Healthy. 4 days post op and that little kidney made the impossible possible. 


I'm so proud. 


I'm so relieved. 


And I'm so grateful that despite the drama, the big move, and the new home, Sidney's settling comfortably in.