it's not over until it's over

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

Nope.

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

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

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

He started to sob.

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

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

I was shaking.

I burst into tears.

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

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

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

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

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

That was where we were a year ago right now.

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

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

moving on

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

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

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

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

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

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

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

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

Namaste friends. And lots of love.

3 months ago

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

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

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

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

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

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

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

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

feeling

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

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

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

Now, I have to think. 

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

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

I'm icing. 

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

I grit my teeth and dealt. 

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

It will pass. 

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

And that's not easy. 

Popping pills was. 

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

just when the story seemed over

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

Point nine. 

POINT NINE. 

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

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

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

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

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

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

I don't know how to get back there. 

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

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

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

one year later

a year ago

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

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

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

And still, I was at the beach. 

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

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

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

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

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

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.