I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: Lillupie on October 30, 2009, 08:18:35 PM
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hi,
Well if you read the general discussion thread, I am writing a book on ESRD. I am trying to cover all areas that I see patients, like myself would struggle with. There are so few actual support networks/groups out there that it is hard meeting other people in our situation.
I was wondering if any of you on home dialysis, PD, or home hemo would be willing to share why you went to home instead of the center. Maybe this might ease some of the misconceptions of home dialysis.
I left an attachment of my questions. You can e-mail them to me at Lillupie@earthlink.net
Lisa
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1: Better dialysis at home. I was dying incenter.
2: That pretty much covers it.
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Truthnis I have decided on home because it frees me up to do it on my time and I can continue to work fulltime as i am a single mother and need to work, I can attend the girls games or concerts visit family and still do my treatments, I need to maintain as much or a normal life as I can that keeps me sane. :waving;
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Otto does REALLY bad in-center and wanted to stop, but decided to try home-hemo. The first day he kept asking the trainer when he would cramp when am I going to feel my head explode when is my bp gonna crash when am I gonna start to :puke; is all she kept saying was hopefully on home hemo NEVER... Otto has been doing it for over a year now. He works full time and we have 3 kids. Yes he still HATES dialysis but at least he has a better life. I tell everyone to at least try it.
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We chose home hemo partly because of travel time - It was over an hours drive to the unit. That was at least 2.5 hours gone out of the day. Plus we live in Newfoundland - an island in the Atlantic of the east coast of Canada so the weather is unpredictable. it wasn't nice on times in the winter!! Also my husband wanted more control over his treatments!! We now do nocturnal for 7 hrs 5 nights a week and it is perfect!! No more schedules to follow just hook up whenever you want in the night. No more worrying about the weather. Plus with the nocturnal no more diet restrictions!! He even had to eat more phosphorus and potassium to keep the levels up!! Home hemo is the way to go!!!
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I chose to do CCPD because we like to travel and we also go camping every weekend so it's easier to just take the machine instead of going to a clinic. It's also nice having a less restrictive diet and fluid intake. But I guess the biggest thing is being able to hook up and go to bed, when you wake up, your done.
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We chose home hemo because it's supposed to be gentler on the system and closer to a normal kidney than in center, my husband is still able to work full time and we have the freedom to travel. We can choose the time that fits our schedule and treatments take less time per day than in center.
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My kidneys failed so fast that I was on a hemo catheter before I knew what was happening. I approached this new adventure with a light heart, and thought this ain't so bad, and then they told me about the needles! No way, says I, and decided on PD. This decision was solidified when they took off way too much fluid without telling me, and I passed out in the store where I went shopping afterward. PD has been great. I've only had peritonitis once in 6 years, and that was due to an infected abdominal hernia I didn't even know I had. That forced me back onto hemo, which I hated every second, until I could get my second PD catheter. Hemo is also very hard on my hair. In that 6 months I lost 6 inches in length and 5 inches in width. I will do PD until I am no longer able to, and then I'm gonna think long and hard about just drifting away.
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Simple Answer
Choice
Freedom
Independance
My Own Schedule
Not Depending on Strangers
No Time Constraints
Able to Travel
NxStage has given us part of our life back we would not have otherwise...
///M3Riddler
www.nxstageusers.com
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I've already sent you my fuller answers. I would always prefer home dilaysis cos I want to be as independent as possible.
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Gentler treatments
Better health
More energy
Fewer diet restrictions
No more planning life around the fixed dialysis schedule
Consistency of care (he always gets the same tech)
No more post crashing
No fighting for the tech's attention during treatment
We can use our own judgement during treatment and not be overruled
No more 3-day gaps between treatments
Better hemoglobin control
I could go on all night.