Monday, July 27, 2015

4 years and counting

I 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. 

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. 

Whew. 

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. 

Throughout though, his kidney continued to kick ass - holding tight onto healthy levels and keeping things on some sort of track. 

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. 

Looking forward to a major party for 5 years. 

Sunday, March 29, 2015

the kidney is fine

Heading 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

I believe from the bottom of my heart he will be fine in the end. Because he is determined to be.

Friday, June 6, 2014

3 years . . .


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.

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. 

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.

I remember lying in pre-opp, barely coherent but hearing the words, "there's room."

Next thing I remember asking was if he was ok. He's great, they said, the kidney is working fine.

It still is. 

I used to think about it 
talk about it 
dream about it 
worry about it 
panic about it
angst over it all the time.

Now it's faded to an occasional mention, an offhand comment, a once a year commemoration. 

Which is good. 

Ida (my kidney) and Sid (his) keep on keeping on.

I am ever grateful for the process, our medical team, my family, friends and the amazing people I met along the way.

Miracles are real. I'm watching one.









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.