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.
Saturday, August 20, 2011
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.
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.
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 . . .
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.
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.
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.
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.
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