The Adventures of Kidney Boy

A Journal About Living With End Stage Renal Disease. Dialysis. Transplants. Love. Family. Friends. The Unsung Donor. This is my life, from the end of a needle to the bottom of a pill bottle.

Monday, November 1, 2010

Vacation

One of the reasons my wife and I decided to switch to doing home hemodialysis was that we could, potentially, take the machine out of the house and on vacation with us.  With our wedding and honeymoon looming, we thought this would be a great option.  Normally, traveling on dialysis includes setting up dialysis at another dialysis center, local to the location of your vacation - and going to a strange center is always a little weird.  But if we could do it ourselves, in the comfort of our own room, we'd have more time together and a bit more freedom.

So, as I wrote about earlier, we set off and trained to use the NxStage System One.  It's been pretty awesome - but one of the best things was we took it on our honeymoon.

We were lucky enough to have our honeymoon out on Lake George, NY - at this glorious hotel called "The Sagamore".  It's one of those old-time revival hotels that's on a huge sprawling manor.... it's quite amazing.  The Today Show was actually up broadcasting live from there the day we checked in.  The Hotel had just been renovated, and it was beautiful.  We were actually one of the first people to stay in the new rooms in the new wing.  The hotel was very accommodating to our needs - storing all my dialysis supplies in a little closet in the hall.  There was quite a few boxes of Dialysate Fluid needed for treatment -  I used 25 Liters a treatment, and they came in 5L bags, so I'd need three every treatment.  Two came in a box and the company sent WAY more than we needed!  But, we had a little table in our room to hold the machine, and I was able to lie on the bed, and get diaylized.  We'd spend the time watching TV, hanging out and ordering room service.  All things considered, if you have to do dialysis, it wasn't a bad way to spend it.

Now, the previous fall, I had a chance to co-produce and co-direct a Public Service Announcement for Reel Productions of Albany, NY.  I worked with a great guy named Joe Bashant, who had come up with an anti-drinking and driving spot.  We spent two days filming - one in Albany and one in a morgue in Pittsfield, MA - and had a good time doing it.  We finished the commercial, Joe edited it, and worked on getting it shown nationally!  My first national commercial.  I was very excited, and a few weeks prior, Joe told me it would start airing.  I was constantly searching for it on TV, but I never found it.  Then, on my honeymoon, we were watching TV - the FX network as I recall, and suddenly - it came on!  Jordan said, "Look!  It's your commercial!"  It was a fun and surreal moment, for sure - one I'd probably have missed if we didn't have to stay in the room and do dialysis.  So, I always look at that as a good thing.

We had an amazing time on our trip.  Lake George is gorgeous in the summer, and it's nestled right in the Adirondack Mountains of New York, which is one of my favorite places on Earth.  My family has a bit of land on the Western Border - and at the end of the week of our Honeymoon, my family's annual "Clambake" was to take place.  So, we loaded up our car, bid adieu to the Sagamore - and drove across the Adirondack Park to get to camp.  We hopped on Rt. 28, and had a great trip.  In fact, I recommend that anyone take a trip across 28 from around Lake George to Old Forge.  It's just amazing.

We got to camp, and celebrated not only our recent marriage with the family, but just the general old good times of the Clambake.  We even did a session of dialysis in my parents cabin in the woods.  My father had built a solar powered battery system (with a backup generator) that allowed us to power the NxStage Machine.  Jordan and I did dialysis in the woods.  It was pretty surreal!

All in all, I'd say the NxStage Machine is pretty awesome.  Doing dialysis at home does require a lot of work on your behalf, but I like the feeling of being active in my own care.  I at least feel like I have something to do with keeping myself alive, rather than just showing up at a center saying "take care of me!!!".

The NxStage System One

The Sagamore Hotel

Jordan and I, riding in a horse carriage on our honeymoon.

2 comments:

  1. One of the biggest reasons I pushed for my husband to do Nxstage was so he could travel and enjoy life. He just like you are way to young to be battling this disease. Im sure Jordan feels a lot like I do about the whole doing it at home, I wouldn't do it any other way. Yes, its a commitment for us but our husbands are our world and being with them and supporting them no matter how crappy they feel is the most important thing for us. I'm so glad you two got to travel to Lake George for your honeymoon. My husband and I love to travel. We just came back from Atlantic City we stayed at Trump Plaza. February will be one year at home for us and in March we will be going on our third cruise while doing Nxstage. Were leaving out of NJ for an 11 day Caribbean adventure. So far we have been on a ten day and a seven day cruise. I love your blog Steve look forward to all your new post. And Jordan your are an amazing women you seem to spend your days giving love and care to not only your husband but to your patients.

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