tag:blogger.com,1999:blog-50570767546049679972024-03-05T07:41:57.138-05:00adventures of my kidneythe journey of a donorElissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.comBlogger168125tag:blogger.com,1999:blog-5057076754604967997.post-72486989498782648732016-06-06T16:56:00.001-04:002016-06-06T16:56:03.085-04:005 YearsWhat strikes me most about being 5 years post transplant is how little the story is mine anymore. <div><br></div><div>As soon as I was a match for Dave the kidney was his - it was just a matter of getting it to him. And now he's doing great. The kidney is great. I feel no different than when I had two. </div><div><br></div><div>It was a daunting, terrifying, life changing, profound, inportant, singular experience that will always be part of who I am. But now it's really all about Dave, his kidney, and hopefully many healthy years together to come. </div>Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com0tag:blogger.com,1999:blog-5057076754604967997.post-59678557782476271772015-07-27T21:56:00.001-04:002015-07-27T21:56:48.428-04:004 years and countingI realized today that I hadn't posted on our 4 year anniversary. It's not that I didn't mean to, or the importance in celebrating has lessened in any way, but this winter/spring were full of health challenges for my brother and I wasn't quite sure we'd even be able to celebrate together. But, today, all is getting back to normal and I can breathe easier again. <div><br></div><div>In March his colon was perforated during a routine colonoscopy - his organ tissue is "fried" because of the anti rejection drugs he's on. The entire scope punctured and 6 inches were removed during 3 hours of emergency surgery. From there it took what seemed forever for things to find any sort of balance. 5 days in the ICU. 2 plus weeks in the hospital. 6 teams of doctors. X rays and cat scans. Fluid filled lungs. Infections and drains. An ileostomy bag for more than 2 months. An intermittent hospital stay dealing with severe dehydration. Another surgery to get his colon up and running again. </div><div><br></div><div>Whew. </div><div><br></div><div>We spent a lot of time in the hospital together. We watched a lot of TV. I spent a lot of time knitting and chatting and quietly worrying, saving tears for the bathroom at home. </div><div><br></div><div>Throughout though, his kidney continued to kick ass - holding tight onto healthy levels and keeping things on some sort of track. </div><div><br></div><div>Our four year anniversary came and Dave wasn't sure he'd feel well enough to get together. We ended up having last minute chocolate cake, which was great, but he was far from well yet and it was impossible to full on celebrate. Today though, he finally went back to work - after 4 months of recuperating and healing - and now I'm taking a moment to acknowledge how very grateful I am that he's back to mostly better. His will power, his determination, is ever inspiring. </div><div><br></div><div>Looking forward to a major party for 5 years. </div>Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com2tag:blogger.com,1999:blog-5057076754604967997.post-53189037067746632592015-03-29T08:19:00.003-04:002015-03-29T08:55:39.378-04:00the kidney is fineHeading uptown to pick my brother up from a routine colonoscopy, my phone rang, between stops in the subway (that never ceases to amaze me). It was his wife who said there had been a complication, a wall might have been punctured, they were taking him into x-ray. He might need surgery. She's be there as soon as she could.<br />
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My mind started spinning. My heart started pounding. My hands started shaking. Full blown panic was flirting at my edges but there was an awareness I needed to keep it together which became particularly challenging when the train screeched to a halt before my stop and didn't move for an endless couple of minutes. I quickly sent Dave a text saying no apologies necessary. I knew he'd be feeling guilty about the changes to my afternoon.<br />
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I flew up the subway stairs, across 2 very long avenues as fast as I could and up to ambulatory surgery. When the receptionist heard my name everyone stopped. She said they'd been waiting for me and started making frantic phone calls. A lovely nurse came, took my arm, told me to stay calm all would be fine, to keep breathing and that Dave's doctor wanted to speak to me.<br />
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There was a tear. A hole. The wall of his colon was perforated. The tissues were fragile, delicate, fry-able - the results of anti rejection meds from the transplant, plus years of various diseases. He was in recovery, waiting for a surgeon to take him in. Of course the first thing he did was apologize. But, as I have for as long as I can remember, I assured him I was there for whatever he needed. No worries.<br />
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His wife and I talked to his doctor, to the surgeons, about options and complications and best case scenarios, words and procedures floating about I'd never heard of. Honestly, none of them sounded particularly good. In the end we were hoping for a longer surgery which meant they were able to cut a piece of his colon out and join the two ends together.<br />
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And then we waited. Joked that it was nice to finally spend time together. That she better go home to get all the computer and charging cables that Dave would need. I headed to a yarn store on the upper west side - I needed something to keep my hands busy. And something to keep my mind productive and positive.<br />
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We met back up and were eventually shunted into a tiny, cramped waiting room as the one we'd been in was shut for the night. We'd both had tearful moments but for the most part we keep each other comfortable and talked only of positive outcomes. The surgeon came in with good news - the surgery went as they had hoped. Dave was in recovery and we'd be able to see him soon. 6 inches of his color had been removed, sides reattached. She mentioned a sizable hole several times which became the running joke of the night and next day. We saw Dave and headed home, knowing he needed sleep more than anything.<br />
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I am the queen of distracting. I am great to have at hospitals and waiting rooms. I can entertain and chat and advocate, keeping things light and positive, making sure everyone is comfortable and calm. This time though it took its toll. By the morning I started to cry and couldn't stop which happens so rarely it's disconcerting. I couldn't catch my breath. I couldn't fully breathe. After the fact I think it was all those months of kidney stress and unknowns pulling me back in. I sort of believed, after all this time, that his new kidney was like a magic charm and would keep him from the edge of a medical abyss again. And yet here he was. Only this time I couldn't do anything.<br />
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He, as always, blows me away. I think this was his 23rd or 24th surgery. He is so matter of fact about it all. He sent a video from the hospital before I got there saying instead of a colon (drum roll please) he now has a semi colon. Less than 24 hours after emergency surgery, between bouts of pain and pain meds, he was answering emails and sending texts.<br />
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Every doctor we spoke to assured us that his kidney was fine. And maybe it will be his lucky charm in the end. His body is healthier now than it's ever been and perhaps that will help him heal faster and better than ever.<br />
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There are no organs to give this time. Just time and love and positive thoughts. So I will continue chatting and advocating and hanging out until he doesn't need me to anymore.<br />
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I believe from the bottom of my heart he will be fine in the end. Because he is determined to be.<br />
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Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com0tag:blogger.com,1999:blog-5057076754604967997.post-31807691154067180552014-06-06T15:04:00.002-04:002014-06-06T15:08:28.445-04:003 years . . . <div class="separator" style="clear: both; text-align: center;">
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Three years ago, right now, I was in surgery having my left kidney removed while my brother was in the operating room next door, waiting to have it hooked up.</div>
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Odds weren't great. That morning, upon arriving at the hospital, I met his surgeon for the first time who said he gave the whole thing a 50/50 chance of working. My brother's body was so compromised from previous surgeries and illnesses they didn't even know if a regular sized kidney would fit. They opened him up first, to make sure, before they took out mine. </div>
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It was basically his last chance. His dialysis port had failed. The catheter in his heart, a temporary solution, kept getting infected. This was our fourth transplant date and time was just about running out.</div>
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I remember lying in pre-opp, barely coherent but hearing the words, "there's room."</div>
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Next thing I remember asking was if he was ok. He's great, they said, the kidney is working fine.</div>
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It still is. </div>
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I used to think about it </div>
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angst over it all the time.</div>
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Now it's faded to an occasional mention, an offhand comment, a once a year commemoration. </div>
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Which is good. </div>
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Ida (my kidney) and Sid (his) keep on keeping on.</div>
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I am ever grateful for the process, our medical team, my family, friends and the amazing people I met along the way.</div>
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Miracles are real. I'm watching one.</div>
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<br />Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com0tag:blogger.com,1999:blog-5057076754604967997.post-44634849646818707772013-06-07T10:17:00.001-04:002013-06-07T10:17:48.252-04:002 years out<div>Yesterday it was 2 years since giving a kidney to my brother. While it will always be an anniversary, an important, amazing, celebratory one, the more we move past it, the more it becomes about him, which is as it should be. Dave calls it his rebirthday. Perfect. What an even more remarkable event to celebrate. </div><div><br></div><div>2 nights ago he called to tell me it was 2 years since his last dialysis treatment. He was admitted to the hospital a day before me so they could get one last session in before surgery. When looking back at what his life was like then he almost couldn't believe what he lived through: hours in a that chair, bone chilling exhaustion, dietary restrictions, travel bans. He'd call me from a bench near his apartment, too tired to walk with his dog around the block. He didn't remember falling asleep on my couch every time he came over. We'd all whisper to let him get much needed sleep. </div><div><br></div><div>He also said he hadn't realized, in the moment, how truly sick he was. </div><div><br></div><div>I knew. </div><div><br></div><div>That was one of the secrets I kept through our journey. While I blogged every day and was open, often perhaps a little too open, about my experiences, there were parts I never mentioned to anyone. <br><div><br></div><div>I thought about writing all that today. In fact, I did. And then erased it all. </div></div><div><br></div><div>It doesn't matter. The past is the past and I am filled with gratitude for this present, my brother healthier and stronger than he's ever been. He called me his hero yesterday. But so much more, he is mine. </div><div><br></div><div>Life is good. </div><div><br></div><div>Miracles happen. </div><div><br></div><div>I am grateful. </div><div><br></div><div>And am looking forward to celebrating his 3rd rebirth day. </div>Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com1tag:blogger.com,1999:blog-5057076754604967997.post-5250457582488629662012-06-06T13:09:00.000-04:002012-06-07T22:06:09.453-04:00a year ago todayA year ago, right now, I was in surgery. They had ascertained Dave had room for a new kidney and right about now (I'm using a bit of creative license here—I was out like a light), they were removing mine, cutting and clamping and sewing and disconnecting, getting it ready to move to its new home.<br />
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The six months leading up to that point had been some of the hardest I'd ever lived through. So many, too many unknowns. So many postponements, tests, unanswerable questions.<br />
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No guarantees that it would work.<br />
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No assurances that either of us would be ok on the other side.<br />
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But, here we are a year later and Dave's new kidney fit right in and made his life so much better. I'm already forgetting how sick he was, how grey, how thin, how exhausted, how drained, how compromised his life had become. How the tube from his chest catheter poked through his shirt or how he'd sometimes have a pipe sticking out of his neck as an access point for dialysis. How I wasn't sure he'd survive what he was going through and was too scared to say it or even think it for more than a second.<br />
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How terrified I was that somehow it wouldn't work.<br />
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But it did.<br />
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As transplants go, one year is a big deal. A huge milestone.<br />
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I realized yesterday it's not my milestone, not my story anymore.<br />
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I was a piece of the puzzle. An important piece. A life changing piece. From the moment that I was a match though, the kidney was Dave's—from there it was just about getting it to him and getting him better.<br />
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One year out and Dave and Sid are doing great. And I'm hoping this is just the first of many more anniversaries to celebrate.Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com4tag:blogger.com,1999:blog-5057076754604967997.post-71896568613047979272011-12-23T18:40:00.002-05:002011-12-23T18:40:45.469-05:00reflectingA 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.<br />
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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.<br />
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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.<br />
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I wasn’t sure how I’d handle either outcome. The invasiveness of organ donation. The disappointment of not being able to help.<br />
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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.<br />
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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.<br />
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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.<br />
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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.Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com0tag:blogger.com,1999:blog-5057076754604967997.post-6869860745709269532011-10-28T15:24:00.000-04:002011-10-28T15:24:01.521-04:00post kidney donationsThere'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. <br />
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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 <a href="http://elissastein.blogspot.com/2011/10/getting-back.html">here</a> as I figure it out.Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com1tag:blogger.com,1999:blog-5057076754604967997.post-72873692491752259252011-10-06T21:50:00.000-04:002011-10-06T21:50:56.667-04:00it's not over until it's overAs 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. <br />
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Nope. <br />
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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. <br />
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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.<br />
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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. <br />
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He started to sob. <br />
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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.<br />
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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. <br />
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I was shaking. <br />
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I burst into tears.<br />
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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. <br />
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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.<br />
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I was desperate to do something to help, but there was absolutely nothing that could be done. <br />
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I went to sleep afraid I'd wake up to find he'd died during the night.<br />
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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. <br />
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That was where we were a year ago right now.<br />
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4 months ago today, he got his new kidney, which has changed his life more than I think any of us could have imagined. <br />
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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.Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com0tag:blogger.com,1999:blog-5057076754604967997.post-6789063328493646782011-09-18T14:26:00.003-04:002011-09-18T21:01:14.960-04:00moving onI 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.<br />
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For the past nine months not a day went by that we weren't in touch. <br />
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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.<br />
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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. <br />
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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. <br />
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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.<br />
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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. <br />
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Somehow, deep down, I had faith this story would have a happy ending. We lived a miracle.<br />
<br />
Namaste friends. And lots of love.Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com2tag:blogger.com,1999:blog-5057076754604967997.post-86405081292327910452011-09-06T07:43:00.001-04:002011-09-06T07:43:39.519-04:003 months ago3 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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
3 months ago, right now, my brother and I were diving off a cliff into the unknown. <br />
<br />
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!<br />
<br />
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. <br />
<br />
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. <br />
<br />
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. Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com1tag:blogger.com,1999:blog-5057076754604967997.post-91373864535538794982011-08-30T08:05:00.002-04:002011-08-30T08:05:42.846-04:00feelingThis 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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
Now, I have to think. <br />
<br />
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. <br />
<br />
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. <br />
<br />
I'm icing. <br />
<br />
Last week I had a menstrual migraine, the day before the hurricane hit. <br />
<br />
I grit my teeth and dealt. <br />
<br />
Today cramps are so intense it's hard to lie flat. Even my big scar is aching with the pressure. <br />
<br />
It will pass. <br />
<br />
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. <br />
<br />
And that's not easy. <br />
<br />
Popping pills was. <br />
<br />
But now, more than ever, I have to protect my body and keep it safe. <br />
That hot water bottle I didn't buy in town yesterday is now at the top of today's to-do list. Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com1tag:blogger.com,1999:blog-5057076754604967997.post-48456127551444451452011-08-25T14:44:00.002-04:002011-08-25T14:44:49.904-04:00just when the story seemed overLast 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. <br />
<br />
Point nine. <br />
<br />
POINT NINE. <br />
<br />
I actually got tearful this morning as<br />
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. <br />
<br />
Sometimes, rarely, almost never in fact, it hits me what I've done. How I changed a life. How I changed mine. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
I don't know how to get back there. <br />
<br />
I hate the sense of dread that's managed move in. <br />
<br />
But I'm hoping that perhaps understanding where it's coming from will help me stay strong as it moves through me. <br />
<br />
I don't believe that yet. But I like the thought. Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com0tag:blogger.com,1999:blog-5057076754604967997.post-53496661371628247702011-08-20T10:24:00.002-04:002011-08-20T10:24:55.952-04:00one year latera year ago<br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
And still, I was at the beach. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com0tag:blogger.com,1999:blog-5057076754604967997.post-21762882191350497282011-08-17T12:05:00.000-04:002011-08-17T12:05:33.097-04:00kidney storiesI 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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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.<br />
<br />
Yup. That's the right word. Unnerving. <br />
<br />
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.<br />
<br />
I'd never thought about choosing to save someone's life. Or that that was even a choice one could conscientiously make. <br />
<br />
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. <br />
<br />
We were lucky.<br />
<br />
My cousin never got that chance.<br />
<br />
Which leads me to . . . <br />
<br />
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.<br />
<br />
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?<br />
<br />
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. <br />
<br />
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.Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com0tag:blogger.com,1999:blog-5057076754604967997.post-87524965473296115312011-08-13T09:45:00.000-04:002011-08-13T09:45:01.963-04:00the way things wereYesterday 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. <br />
<br />
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. <br />
<br />
14 people for an impromptu dinner party.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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. <br />
<br />
Someone brought delicious cold sesame noodles. Another backed an incredible summer fruit pie. <br />
<br />
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.<br />
<br />
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. <br />
<br />
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. <br />
<br />
It was a good, good night. <br />
<br />
I am so grateful for the friends I have. For my amazing my family, who can pull remarkable things together. <br />
<br />
And for watermelon, without whom the night wouldn't have been what it was. Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com2tag:blogger.com,1999:blog-5057076754604967997.post-81464235215115007302011-08-05T22:28:00.000-04:002011-08-05T22:28:04.679-04:00how much is that kidney in the window?I wrote a piece at Huffington Post about paid kidney donations: <br />
<br />
http://www.huffingtonpost.com/elissa-stein/how-much-is-that-kidney-i_b_919989.html<br />
<br />
it brings up a lot of questions . . .Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com1tag:blogger.com,1999:blog-5057076754604967997.post-37424056915675204512011-08-05T10:02:00.000-04:002011-08-05T10:02:38.529-04:00before and afterThis small world story will make sense so stick with me for a bit:<br />
<br />
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. <br />
<br />
The she mentioned he was vegan, that they shared a love of vegan cupcakes. <br />
<br />
I asked if his name was xxx. <br />
<br />
Yup. <br />
<br />
Was his last name xxx?<br />
<br />
Yup again. <br />
<br />
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. <br />
<br />
Now it was a serious small world story. <br />
<br />
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. <br />
<br />
It was hard not to cry. <br />
<br />
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.Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com0tag:blogger.com,1999:blog-5057076754604967997.post-22996324448030470312011-08-02T15:53:00.000-04:002011-08-02T15:53:23.103-04:00words with friendsAt 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. <br />
<br />
Silence spilled across the table. I sensed distain, pity, discomfort. It seemed they felt sorry for me and my time-wasting ways. <br />
<br />
Before I could leap to my own defense, conversation moved on. <br />
<br />
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. <br />
<br />
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. <br />
<br />
It was good to know he was there. Reassuring. After all we'd just gone through I appreciated this means of being connected. <br />
<br />
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. <br />
<br />
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.Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com1tag:blogger.com,1999:blog-5057076754604967997.post-12076813909130469592011-08-01T12:10:00.000-04:002011-08-01T12:10:41.607-04:00me and my kidneyLast night, as I was getting out of bed to pee yet again, Jon asked if I noticed any difference with just one kidney.<br />
<br />
Nope. <br />
<br />
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.<br />
<br />
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. <br />
<br />
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. <br />
<br />
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.Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com0tag:blogger.com,1999:blog-5057076754604967997.post-90108417129785121472011-07-29T13:37:00.000-04:002011-07-29T13:37:29.902-04:00transplant karma<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM258vdp6NqPM-RGBP33CwQjw0bipzGpifxqLnroXdUx_JS2lGnw1Grf7G6x8OJ2F9ZEwMFvpcjS_HmRdXOKdJL7kMHLeSWcXdkYcFsN1PN0r0UWrpBDxhJ0UfSFNT6Wll-8ayNASG7Oc/s1600/photo.JPG" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="400" width="299" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM258vdp6NqPM-RGBP33CwQjw0bipzGpifxqLnroXdUx_JS2lGnw1Grf7G6x8OJ2F9ZEwMFvpcjS_HmRdXOKdJL7kMHLeSWcXdkYcFsN1PN0r0UWrpBDxhJ0UfSFNT6Wll-8ayNASG7Oc/s400/photo.JPG" /></a></div><br />
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. <br />
<br />
I missed mine. It symbolized a link, a hope, a period of time that was intense and profound and life-changing.<br />
<br />
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.<br />
<br />
I have no idea how it got there. No one here is owning up to finding it and leaving it for me.<br />
<br />
But somehow, that little symbol found its way back. <br />
<br />
I'm attributing it to transplant karma.Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com2tag:blogger.com,1999:blog-5057076754604967997.post-63459979931099452822011-07-27T15:12:00.002-04:002011-07-27T15:12:33.620-04:00to be a donorYesterday, 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. <br />
<br />
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? <br />
<br />
Donors do. <br />
<br />
And so, for us, there are things on the table most people never have to face. <br />
<br />
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. <br />
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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. <br />
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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. <br />
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And if I can pass on that donor karma, I'm grateful. Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com0tag:blogger.com,1999:blog-5057076754604967997.post-11769009790777953672011-07-25T17:59:00.000-04:002011-07-25T17:59:19.870-04:007 weeks outA couple of hours ago, as I was picking Jack up at camp, I walked, fast, to avoid the rain. <br />
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Then I realized: I was walking fast. Fast. My normal NYC, going places, quick paced fast. <br />
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And I felt fine. <br />
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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. <br />
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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.<br />
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Seven weeks out I almost feel like the surgery didn't happen. Aside from the scars, which are healing very nicely, I feel fine.<br />
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Fine. <br />
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My brother does too. <br />
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Life is good.Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com0tag:blogger.com,1999:blog-5057076754604967997.post-29760984694755953722011-07-21T14:21:00.002-04:002011-07-21T14:21:12.514-04:00lucky charmsI 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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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And we'll have them forever. Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com1tag:blogger.com,1999:blog-5057076754604967997.post-39751269858504020542011-07-19T18:23:00.003-04:002011-07-19T21:19:31.377-04:00self consciousUsually, 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. <br />
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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. <br />
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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. <br />
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Years ago, when I was anorexic, I did the same thing. As much as I could I faded into the background. <br />
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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. <br />
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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. <br />
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I feel self-conscious. Not at all at ease. But it's time to be me again. Elissa Steinhttp://www.blogger.com/profile/02004788697977182083noreply@blogger.com1