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My kidneys failed in the fall of 2001. My first experience with home hemodialysis was in 2002 on a Fresenius machine after the kidney my wife donated to me succumbed to the rigors of focal segmental glomerulosclerosis (FSGS). Originally, I ran three days a week, however we soon made the argument for additional dialyzers so I could run 5 days a week. My docs at the University of Michigan (I’m a Spartan fan through and through but owe a lot to the maize and blue docs) made allowances and I felt pretty good until the non-working kidney finally rejected, causing all kinds of problems.
My wife did everything for me on the Fresenius machine while I tried to work. It was very time-consuming, especially with our 2-year old son. After I got sick with the rejection and my antibodies skyrocketed, we tried peritoneal dialysis from 2003-2005 with the hope that I would do the lion’s share of the work of administering dialysis.
I did—in fact, I ran on the machine for 7 hours each night and still needed three manual exchanges a day. It was a lot of work. But PD never worked well for me (I gained nearly 60 pounds which disappeared after getting back on HD), and as I got sicker my sweetheart took on more responsibility for setting up my machine. This took a toll on her, since she now worked full-time, our boy was now 4, and we adopted our second child—a newborn girl.
So, when I learned about the NxStage machine, in addition to being more mobile, and providing better health, my “Stage” also appealed because I could administer it myself. The only thing my spouse has done is spin my hematocrit. Otherwise, from soup to nuts, it’s me. Talk about a feeling of independence! Don’t worry, I’m not going anywhere—I’ve been dating my wife since I was 15 years old (I’m 41 now). No one else would have kept me going through this chronic illness rollercoaster.
My biggest problem on the Stage is that I feel so good and want to spend so much time doing things with my family (and, of course, fixing up my house which has been out of necessity neglected) that I find myself reluctant to get on at 10:00 pm often for a 3 hour run.
It will be easier when school starts this fall. My son will be in second grade and my daughter will be at preschool where she is now during the summer. I’ve missed so much of family’s life since 2001 when I lost complete function that I can’t stop running to make up for lost time. Plus, in my case, the good health doesn’t seem to last very long. Perhaps it will be different with the Stage.
Someone recently asked me what I did when I wasn’t dialyzing 4 hours a day (includes set-up, takedown, inventory control, and recycling). This is what I told him…
This summer, thanks to NxStage, my 6 year old, Jacob, is only going to half-day day camps and not every week, so he and I are spending tremendous time together. This is much better than last year (2005) when I was recovering from my second failed kidney transplant, with daily visits to a wound clinic, dialysis of course, and on non-dialysis days, plasmapharesis to counter the FSGS.
Instead of that, Jacob and I go fishing, mountain biking, collect insects, do vermiculture (worm farm), gardening (the yard was a mess due to my absence), write in our journals, spend lots of time at the library, flag down the ice cream truck (man, does he have our number!), break down and recycle NxStage boxes, and tackle other household chores.
We often ride our bikes to pick up his 2-year old sister from preschool. We spend as much time at our city’s aquatic center as we possibly can. Often on the weekends we try to get to a beach on either Lake Huron or Lake Michigan—East Lansing is landlocked and I need water both to quench my thirst and nourish my soul (go figure I’d get kidney disease). At least with a fistula, I can swim with gusto unlike when I had a PD catheter sticking out of my abdomen.
In addition to all this fathering, I make jewelry—necklaces, bracelets, earrings—mostly with commercial beads but also using some polymer beads that I make. I write. I’ll have an article in AAKP’s Kidney Beginnings magazine in December, 2006. I recently had one entitled, “My Babies Have Brown Eyes and Kinky Hair” published in Adoption Today. I also raise funds for the National Kidney Foundation of Michigan which takes all year culminating in our spring walk. My team, the Riverdudes, has raised more than $30,000 over the past five years.
When we moved to East Lansing 6 years ago, I was 3/4 through a doctorate focusing on Latin American water resource security. Alas, after multiple struggles, I realized the best use of my time was fathering and I liked it so much we adopted our daughter Antonia two years ago while I was on PD. I couldn’t be happier than when I’m spending time with my wife and children. And, NxStage certainly allows for that.
Now, it sounds like a lot, but nothing gets done quickly. It all just slowly rolls along.
One final note concerning how grateful I am for the NxStage machine…
My wife and I just hosted a Firefly gathering and Leelanau Tallship Chardonnay party for about twenty friends and their twenty kids. Leelanau Cellars is a local Michigan vineyard near Sleeping Bear Dunes National Seashore, with excellent Chardonnay.
My wife and I used to be very social. The night of the party was a sort of coming out party for me since the kidneys stopped, for which I have NxStage to thank. I haven’t had the energy or ability for such an undertaking in so long. Plus, many of our friends and neighbors have been very helpful and supportive, so this was also a little giving back.
At the party, I had a quiet celebration while my friends and neighbors enjoyed a fascination with nature and the warmth of love and camaraderie on our quiet, tree-lined, front-porch-leaning, college town neighborhood. I stepped back into life as I knew it. I hope it will last.
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