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. 


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.