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Author Topic: How many days do you run  (Read 2950 times)
Wayne
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Martin (the snorer) & Mack (cat w/renal failure)

« on: August 31, 2010, 05:58:15 AM »

Just a question...from what I see from most posts is everyone seems to run 5-6 days.  Just curious if anyone does more or less.  When I was training we did the 5 days and my numbers were perfect.  When my doc sent me home he made me go to 6 and my numbers have been declining and everything (phos, potassium, etc) is out of whack.  Needless to say we have been butting heads the last couple of visits.  I want to go back to five and see no reason why I shouldn't since everything was better on 5 anyway.  I do still feel better than in center though...anyway, just wanted to hear what you nxstage vets had to say...
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vcarmody
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« Reply #1 on: August 31, 2010, 08:36:23 AM »

My husbands says the same thing.  He says he feels better when we do 5 days, but they have been insisting on 6 days.  For awhile we were doing 5 on our own and his clearance was much better, but after a few weeks they told him he had to do 6 or go back in center.  This last visit with his neph I pointed all that out to him and told him my husbands says he feels much better with less treatments.  He said he is going to call NxStage and see if they will allow 5 days a week, his nurse was against this, but she has no idea how my husband feels.  Hello, if he felt so much better doing 6 compared to 5 don't you think he would do the 6? No one wants to feel crappy when they can feel good.   My husband still urinates so that should be considered but no one seems to be looking at the whole picture. I think its time for the nephs to listen to the patients, if there numbers are good and they feel good with 5, then they should be able to do 5.  If there numbers decrease then you go back up to 6.  I personally think that because my husband has private insurance and they charge 720.00 per treatment is the reason they want him to do 6.  I mean that is a loss of at least $2,880.00 for the center and that is just profit.  I know how much they pay for the rental of the NxStage System One and how much they pay for the supplies sent from NxStage (we asked to see the bill).  You will have to talk to your neph and make him listen to you.  I am really getting very pushy about what we want, thanks to this site.  I used to just listen and do what they wanted but now I am starting to realize (thanks to all the people on here) the only person I need to be listen to is my husband, and his blood work.  He knows best how he feels, and when he feels better.   
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Caregiver to husband Chris, NxStage 11-2009
vcarmody
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« Reply #2 on: September 01, 2010, 07:37:53 PM »

Whooooo Hoooooooo my hubby is so excited his Doctor called today and said after reviewing all his blood work and his clearances he feels we can do 5 NxStage treatments a week.   :bandance;   My husband is so happy he says he feels so much better with less treatment.  And we figure if he starts feeling real bad or his numbers are bad we will just go back to 6 treatments a week.    :2thumbsup;
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cloud393
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« Reply #3 on: September 02, 2010, 07:18:31 PM »

I do 5 treatments a week but am having a double nephrectomy Oct. 1 and have been told I will probably have to increase the days.
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M3Riddler
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« Reply #4 on: September 02, 2010, 07:23:58 PM »

Just a question...from what I see from most posts is everyone seems to run 5-6 days.  Just curious if anyone does more or less.  When I was training we did the 5 days and my numbers were perfect.  When my doc sent me home he made me go to 6 and my numbers have been declining and everything (phos, potassium, etc) is out of whack.  Needless to say we have been butting heads the last couple of visits.  I want to go back to five and see no reason why I shouldn't since everything was better on 5 anyway.  I do still feel better than in center though...anyway, just wanted to hear what you nxstage vets had to say...

Wayne,
You can never have too much dialysis. Your kidneys work 24/7 and you do not receive nearly that much dialysis comparied to a working kidney. 
I would look at how many hours your treatments are. Are you on the standard 2.3 hours or around that area?  The only way to rid the body of more phosphorus is time.... Phosphorus takes several hours to go from one compartment to another and then into the bloodstream. This is why time is the key factor.
Have there been any other changes other than adding a day? Any blood flow changes/dialysate changes or anything else?

i dialyze 6 days per week for 4.5 hours each treatment and 25L per treatment. My numbers are great. This extended perioud has helped me greatly.

///M3R
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AtlantaPatient
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« Reply #5 on: September 20, 2010, 01:43:13 PM »

I started with 5 days a week, with each treatment lasting about 2 hours 50 minutes. My numbers were pretty good and I generally felt pretty good as long as I got enough sleep.  With the permission of my nephrologist and center I changed to 4 days a week in June, with treatments increased to about 3 hours 20 minutes each. My kt/v numbers are still good although I've felt like I've had less energy.   My wife and I had a baby at the end of june and I'm working full time so I'm planning to stick with 4 days/week for now. I am interested to see if my center will support nxstage nocturnal treatments as I think that could be a good option.

Edit: After about a month of doing 4 treatments a week I spoke with my center and neph about having less energy. Rather than switching back to 5 days we decided to try reducing my FF to 30 from 35.  After  a few weeks of this I think it has helped - I feel much better overall with better energy level.  Each treatment is longer at the lower FF, between 3:35 and 3:50 usually. But I still feel like having that extra day off each week is worth slightly longer treatments.
« Last Edit: October 13, 2010, 01:31:32 PM by AtlantaPatient » Logged

Polycystic Kidney Disease diagnosed 2000
Added to UNOS waiting list for kidney 8/07.
Started in-center HemoD June, 2009; nocturnal until 12/09.
NxStage hhd since 12/09.
4/19/11 - Living Unrelated Donor Kidney Transplant from my wife's sister Katie at Emory Hospital!
Had a few post transplant issues, but seem to have addressed them and doing well as of 5/7/11.
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