Friday, June 7, 2013

2 years out

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. 

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. 

He also said he hadn't realized, in the moment, how truly sick he was. 

I knew. 

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. 

I thought about writing all that today. In fact, I did. And then erased it all. 

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. 

Life is good. 

Miracles happen. 

I am grateful. 

And am looking forward to celebrating his 3rd rebirth day. 

Wednesday, June 6, 2012

a year ago today

A 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.

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.

No guarantees that it would work.

No assurances that either of us would be ok on the other side.

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.

How terrified I was that somehow it wouldn't work.

But it did.

As transplants go, one year is a big deal. A huge milestone.

I realized yesterday it's not my milestone, not my story anymore.

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.

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.

Friday, December 23, 2011

reflecting

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

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

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

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

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

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

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

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

Friday, October 28, 2011

post kidney donations

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

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

Thursday, October 6, 2011

it's not over until it's over

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

Nope.

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

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

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

He started to sob.

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

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

I was shaking.

I burst into tears.

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

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

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

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

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

That was where we were a year ago right now.

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

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

Sunday, September 18, 2011

moving on

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

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

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

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

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

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

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

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

Namaste friends. And lots of love.

Tuesday, September 6, 2011

3 months ago

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

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

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

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

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

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

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

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