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, December 27, 2010

I'm Going To Disney World!

Being on dialysis makes traveling harder than normal.  Also, being as broke as I am due to the lack of ability to work keeps me pretty grounded at home.  I haven't been out of the state in years - also, I haven't flown anywhere in over 15!

My wife and I often talked about how after I got a transplant and went back to work, we'd take a vacation somewhere.  She often talked about the times she'd been to Walt Disney World in Florida and I mentioned how I'd never been, and I'd always wanted to go.  It became our little secret goal - we'd talk, and giggle about it, just to keep our spirits boyued for that far-off future.

When everything seemed to fall apart in the last few months, with my health declining and the Transplant Clinic rejecting my father-in-law's offer of a donor kidney, I began to get depressed.  My wife, being the awesome girl she is, took notice and started to look into finding deals so that we could afford a trip to Florida.  She saved and sacked away a little money, and found some decent deals - and VOILA - she surprised me by telling me she was taking me to Florida.   She'd already talked to my dialysis center, NxStage (The company that makes my machine and supplies) and looked into traveling with a dialysis machine.  Yeah, it's a little more work, but we're going to do it.

I could use a get-away.  Sometimes, the monotony of being sick and being home really wears on you.  Perhaps this getaway will recharge the old batteries, and give me strength to renew my fight.  I'm really holding on rough here these days.  It's getting harder and harder just to exist.

So, I hope the weather is at least a little sunny and warm.  We're still working on putting together some more money for the trip - my wife works so hard, so a vacation would be good for her too.  Worrying about your finances is something you do in spades when you're sick - but sometimes, you just need to take a break!  And while there's no break from dialysis, at least I'll be doing it somewhere else... and maybe I can go sit in a "Lazy River" when I'm done.



  1. Steve, good for you, and your wife, for going on vacation in spite of being on dialysis.

    I started dialysis on October 22, 2010, and on November 13, 2010 set sail on a Carnival ship for a five-day cruise to the Bahamas. I'm too new to the Big D to be doing home dialysis, so I stopped at the FMC in Jacksonville, FL the day we departed on the ship and the day we got back. It all worked out well.

    I had a great time on our first cruise, so it was well worth the effort. It was a blow to cash flow and more expensive than we really could afford, but it was worth the cost as well. My two sisters-in-law, who were with us, couldn't keep up with me; they had to go back to their cabins to nap!

    We're already planning our next cruise, and more trips on land as well (ironically, probably back to Disney World!), since I feel so much better.

    I've been following your posts for a month or two and applaud your attitude in the face of all your difficulties (I face congestive heart failure, cardiovascular disease and diabetes as well as the kidney failure, so I know something about keeping a positive attitude in the face of adversity). Keep up your good spirits!


    P.S. Have you considered starting you own business, which you could adapt to your skills and time restrictions. My wife and run our own business and it's helpful in maintaining a positive attitude and providing a nice cash flow. Something to think about.

  2. Traveling is important and I work extra hard and cut corners everywhere just to make sure we can get away. My husbands does Nxstage to. We are to afraid to fly with the cycler so we cruise. We have been doing Nxstage for about 11 months and we have been on two cruises, the first one was 10 days, we went to Bermuda, St. Thomas, Puerto Rico and St Maarteen. Our second cruise was a 7 day cruise to Bermuda. We drive to Port Liberty, Bayonne NJ and carry on our cycler. Nxstage ships the bags of dialysis and the cartridges right to the ship and we just pack the saline, waste lines, needles and all the other supplies. You and Jordan deserve to get away. Relax and enjoy, you both work so hard everyday. Jordan I admire you so much because I know how much you love Steve, people ask me all the time how can I work 12 hours shifts then come home to take care of my husband, well I know you know that answer and you understand why, because you do the same thing. I hope you two have a great trip. My husband and I go on our next cruise in March.

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