Friday, March 22, 2013

The best thing about my dialysis appointment was Krispy Kreme

On Monday, March 18, Ben accompanied me after a long workday to my first home dialysis consultation.  The home dialysis nurse,Devi, was going to teach me all about what to expect, how I do it, where to do it, and how many times.  On the way to the appointment, I was pretty calm actually. Maybe even excited?

There weren't many cars in the parking lot.  Once I put the car in park, I started to feel the first quickening of my heartbeat.This was really my first time at a dialysis center.  As soon as we walked into the building, the scent of antibacterial spray and bodies flooded my nostrils.  It's hard to describe it any other way, but basically, it spelled like a hospital: suspiciously clean.  

In a little glass cubicle was Devi. She smiled at us and led us to her office and started the Q&A period.  She asked me about my GFR and what type of dialysis I'd like to do.  I'm looking at doing continuous ambulatory peritoneal dialysis.  CAPD is pretty easy to explain, surprisingly.  CAPD patients have a catheter (plastic tube) inserted into the lining around their abdomen. This procedure requires surgery.  The catheter stays there and about four times a day patients connect the tube to a bag of liquid.  Naturally, the liquid flows through the tube into an area below patient's stomach.  Think of your stomach having a long straw sticking out of it, and sucking on a huge capri son bag until it's dry.  That liquid stays in the stomach for a few hours.  Afterward, the patient connects another bag to the tube and that bag removes all the hours-old liquid from the area below the patient's stomach.  The liquid that comes out is usually yellow, the color of urine, because it's the waste that your kidneys are not removing.  

We watched two videos on ways to do this.  And each video followed a process: you are greeted by an very happy and enthusiastic, and nice looking person. Oh but they have a secret:  they have kidney disease...just like you!  What a surprise.  How do they manage to stay so happy?  Well you, as the viewer, don't have to worry about that.  The happy person explains that it wasn't too long ago that they too were receiving the call to do dialysis from their nephrologist.  This is usually done with a dramatized flash back to when the "happy person" was suffering with kidney disease and looked really run down and, frankly, scary.  The "happy person" then talks about nervous they were about starting dialysis but that their dialysis team helped them overcome their fears and now they're able to live a full life, raise a family, run a restaurant, and travel to conventions.  The End. 

It was a pretty convincing video, which is probably why they made it.  At many points throughout the movie I found myself thinking, "I can do this. I can do dialysis and have a great life."  Afterwards, reality set in, which is mostly just fear.  Devi asked if we had any question then she really laid it on:  I have to do dialysis, she said, if I want to live.  This is very true.  But she added that I will feel much much much better than I feel now.  Devi said, I'll feel like I'm cured if I do home dialysis, which she thinks is a good option for me. Hemodialysis, the kind I knew the most about, has many more complications and risks.  

I could feel warmth rush over my face and my eyes started to sting with the pain of trying to hold back tears.  As calm as I was going into the dialysis center, it wasn't until 3/4 through the visit that the reality of the situation fully set in.  I don't want to do dialysis. But I have to. I remember thinking I don't want to do this, life is not fair, and this is highly inconvenient.

"Do you want to see the hemo lab?"  Devi asked.  When we first entered the center. I could see behind a glass window separating the lobby and the lab.  I saw two people, an old man and a middle aged man, sitting in chairs, hooked up to machines. One was reading, one was napping.  It all looked so sad.  I wish I didn't have to say that, but that's the truth.   Those videos they make you watch, they have to be positive, so that you as the patient understand that you need these procedures to survive.  They want to encourage you. To make it look easier than it really is. In some aspects, it is easier. And there are worse things that could happen to a person.  But the fact is: being hooked up a to a machine for four hours a day, is not exciting.  It's not awesome.  It's not fun. It's sad. If it were any of the other things more people would be clamoring to do dialysis.  

When we left the center, it was pouring rain.  Ben drove while I sat in the back seat mulling over things.  He reached over the passenger seat and held my hand.  "Do you want to go to Krispy Kreme?" he asked, just as we were passing one of two locations within 30 min of our apartment.  I asked him if he wanted to go, since he had just passed the place.  Suddenly, we were making a U-Turn and pulling into the parking lot.  In less than a minute we found ourselves in front of this: 

Our excitement was palpable, just like the scent of the fresh donuts being pulled off the icing conveyor belt.  Like four-year-olds we fumbled about for 10 minutes trying to decide which 12 donuts to order. We needed to get equal parts glazed and filled, with one or two cake donuts thrown in. And of course we've got to have some of the warm originals. We finally placed our order and took our seats to devour the dozen donuts.  

Despite the depressing dialysis treatment lecture, this was one of the best days of my life.  I know, it's hard to believe.  Ben and I couldn't wipe the smiles off of our faces as we stuffed them with donuts.  I decided that instead of eating all six of the ones I picked out, I would eat one full one and then take bites out of all of the others.  As I moved from cinnamon apple to raspberry filled, I looked up at Ben, chipmunk cheeks filled with an Oreo Cake donut, and I wished I could stay in that moment forever.  I kind of forgot about what had transpired about a half hour before at the dialysis center.  The combination of sugar and Ben's presence was making me deliriously happy.  I thought, it's so nice to have someone to eat donuts with me.  It's so nice to have someone to go with me to my to doctor's appointments.  It's so nice to have someone who knows that after a depressing doctor's appointment, that naturally a trip to Krispy Kreme is what comes next.  

Ben and I don't know many other engaged people.  And the ones we do know don't have to deal with anything like this-- a test of your "in sickness or in health" vow before you've even have to vow it!  I would love to just have a normal engagement, you know, one where you just focus on planning your wedding, honeymoon, and maybe talking about buying a house.  But that's not our journey. However, I'm grateful for the one we're on.  Some people ask me if I'm scared  about getting married. But I am not. I am 100% ready.  I think what makes some people scared is the uncertainty of what's to come, how their partner will be.  Because of our special circumstances, I know 100% that I am taken care of, loved, appreciated, and protected.  I don't worry about if Ben is going to be there for me, because he already is.  

After seriously demolishing a half a box of donuts, we lingered for another 10 minutes to watch another fresh batch of donuts being made.  We even rooted for some of the underdog, deformed donuts to make it into the Krispy Kreme fundraising boxes, but they really do catch those quick!  I looked around the restaurant.  It was pretty empty except for a family with two kids, doing almost the exact same thing, marveling at donut creation.  This is what some families do---they take trips to Krispy Kreme, to have a special treat.  That day I was so happy to be there, watching donuts get fried, with Ben, one/half of my new two-person family.