I wrote this in response to a new patient's questions on the Home Dialysis Central Discussion Group:
I started in center then tried PD which works for many many folks. The catheter insertion is a relatively simply procedure which is often done without invasive anesthetics. I believe I had a couple of Verseds and then some lidocaine on the site. I don't know of anyone who likes a catheter sticking out of their belly or neck, or a bulging vein on their arm or leg in the case of a fistula or graft. What you will find though is that these become your life line. Literally as in they keep you alive. Dialysis patients are some of the most resilient folks I know. We have to endure much change, but the successful patients embrace the changes realizing that the alternative is death. For a number of reasons, primarily relating to me not making any urine, PD didn't end up working for me. After my second kidney transplant (the first was from my wife) failed due to FSGS I found myself back in center. I read about NxStage and found a center an hour away.
On the same thread, another poster had concern with doing nocturnal home hemodialysis so added this:
After two years of sitting in the chair doing short term I knew there was a better way. Also, following the good information you get at Dori Schatell's sites and others, I realized as I think you and your wife do too, how much better my dialysis and my outcome will be with longer and slower dialysis (just like my BBQ). I have found now doing nocturnal for seven years is that my body just doesn't toss and turn when I'm on nocturnal dialysis. On the nights off, I'm all over the bed. It is the same principal that keep you from falling out of the bed. There is a subliminal recognition of your position. I also secure my needles well. I've never had a needle dislodge. Recently though because my graft is getting older I did experience a slow leak that was not detected by wetness monitor. While I generally do my dialysis by myself, that night, my wife leapt into action and everything turned out all right. My ten year old walked in and saw the mess and immediately walked out. Having been on dialysis since my fifteen year old son was one, my kids have seen a lot, but to them it is just part of life with their dad.
And additional concern of the poster was what impact a PD catheter might have on one's love life. To which I added:
Shy fellow that I am Dori, I'll just say that I didn't have much libido on in center or PD. It wasn't until I got on NxStage, five years after I started on dialysis, that the urge returned to near pre ESRD levels. And, once it returned I was pretty darn happy, my wife needed a bit of convincing though (taking care of a sickly dude for five years can take a toll on a healthy person's desires). I was so happy, that I sent an email to Jeff Burbank, founder and CEO of NxStage telling him that I thought NxStage was better than Viagra. A few years latter I ended up writing an article about this for a Finnish Company which was introducing the new technology to Findland.
In 2010, to celebrate my tenth year of a wonderful life on dialysis I sort of got in shape and canoed 225 miles with the Grand River Expedition 2010. It was an incredible journey that couldn't have happened without my family and many dear friends.
I have been on dialysis since 2001 and have used every form of dialysis currently available in search of the best outcome and the best life. I have done in-center hemodialysis, at home hemodialysis with a traditional dialysis machine, peritoneal dialysis and finally, NxStage's System One home hemodialysis machine. I have had two kidney transplants, one from my beautiful wife and another because a thoughtful motorcyclist had checked the donate organs line on his license. For me, the technology for a successful transplant does not exist for my disease. I remain open and optimistic about wearable and implantable artificial kidneys.
Since I started my first blog, Tasty Kidney Pie, in 2001, I have tried to, and hope to continue to, inspire dialysis patients and others living with chronic illnesses to get outdoors and live an active and fruitful life.
Since 2001, The Riverdudes, my National Kidney Foundation of Michigan Walk Team has raised $78,000.
I currently spend my time writing, raising my children, snuggling with my wife, getting outside and staying active, and hopefully inspiring others along the way.
Thank you
With your help we can exceed this year's goal of $5,000 for the National Kidney Foundation of Michigan. Thank you very much for your continued support. Erich
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