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davej
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« on: January 08, 2010, 06:27:27 PM »

My wife is new to dialyis (two months).  She goes 3 hours per day for 3 days a week.  I find that we are going to have a number of conflicts with her appointments and what we do for a living.  She is scheduled on Saturdays and we shall be away on many weekends during the year and there's a potential of missing the Saturday appointments.

I am leaving for Arizona in a few days to sell at two major events there and I am unable to bring my wife because I can not get dialysis over in Blythe.  I have pondered taking her and figure that she would be okay the first week or so, but not sure after that.  I'm sure that a number of members here have skipped treatments and I would like to hear their experiences and get opinions on missing treatments.
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jbeany
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« Reply #1 on: January 08, 2010, 06:55:17 PM »

My advice is don't, don't, don't!  Had to miss over a weekend once because of access issues and the repair doc being out of town.  I was one day late after the weekend, and I was miserable - nausea, headache, body ache, and way too much fluid - at least until I started puking.

If you already know dates and locations for your weekends, get started on finding centers that will take a visitor - the sooner the better.
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pamster42000
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« Reply #2 on: January 08, 2010, 07:03:58 PM »

Missing dialysis treatments isn't a good idea. First thing this isn't good for her well-being and second the Dr will see this as being non-compliant which will lead to troubles down the road.
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davej
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« Reply #3 on: January 08, 2010, 08:11:04 PM »

We have run into a lot of complications finding places.  Blythe has a dialysis center, but they are all filled up.  We just found out last month that my wife has the Hepatitis-B antigen and she has to be placed in isolation and there aren't a lot of places that can do it.  She has had numerous blood tests for Hepatitis-B and some are positive and some are negative.  Driving us batty.  Their explanation is that she got this in the Philippines when she was a young child.  We have been a member of this health plan for 35 years and I guess they never tested her for it.  We had no clue whatsoever.   Right now she is receiving dialysis through the catheter in her chest and she was recently mapped for an access on her arm.  No date for it yet.  I thought about peritoneal dialysis, but that doesn't please my wife one bit.  Everything has happened so quickly, that we are still in the dark about a lot of things.  I would like to do the dialysis at home eventually.
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« Reply #4 on: January 08, 2010, 08:20:51 PM »

Dave,
I'm going to echo the previous posts. Don't skip. Don't skip. Don't skip.

I realize that this is a difficulty for your schedule, but DON'T SKIP!

If you cannot find a center that will take her on your show trip, don't take her. If necessary find someone to take her to treatments while you are away.

You don't want to jeopardize your wife's health. Kidney failure in not something to play around with. the kidneys affect so many other body functions including the heart.

Do not make plans to skip treatments. And from your post it sounds like you are planning on skipping more than one treatment in a row. Believe me, even those who are one a 3x week schedule feel the affects after those 2 days off.  I realize you are new to dialysis. And it came on you pretty suddenly.

Please take it seriously for your wife's continued health.

Aleta
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Hanify
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« Reply #5 on: January 08, 2010, 08:26:11 PM »

I think she should rethink the PD option.  It is way more portable and you won't have any of these problems. 
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
davej
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« Reply #6 on: January 08, 2010, 10:05:57 PM »

If I took her with me, she would miss quite a number of treatments and I doubt I am going to do it.  It'll be no problem for her to make it to treatments because my son will bring her.  Tough for him to get up at 6:15AM but he has agreed to do it.

We sell our merchandise at a large number of events throughout the year and these Saturday treatments do not sit pretty with us.  We are both retired but our income does not pay for all our bills.  If we don't sell at these events we will go broke and eventually, file bankruptcy and lose our house and a lot of other things.  Not ready for that.  It appears as though her kidneys are functioning and I don't think that she will be that bad off going from Thursday until Tuesday.  However, I have read posts here that your kidney functions detiorate as you continue with dialysis.  It's very tough going through all of this.  We live in California and the cost of living is quite high. 

I personally do not think that dialysis is required 3x a week for 3 hrs a day for her.  I know there are people on this board going for 4-5 hours each time.  I question the necessity of every medication she gets, every treament, etc.  Matter of fact, everybody should question all phases of medical treatment in any way, shape and form.

Back in September my wife was in the hospital and they began her on insulin for diabetes.  On her last day there they instructed her on the procedure and the nurse gave us a sliding scale.  When I got the prescription, it said to administer 30 units four times a day.  I happened to have misplaced the sliding scale and called our health plan help desk, pharmacy and my wife's doctor and they all said to give her the 30 units.  Can you believe that?  We had an investigation and they had the head pharmacist tell me that it was an error made by the pharmacist doing the prescription.  The head pharmacist told me that this person was an excellent employee and somehow he 'misinterpreted' the prescription when 'transcribing' it and instead of putting 30 minutes before meals he put 30 units.  Sorry, but a good employee is familiar with dosages and would not make an error like that.  Can you imagine what would have happened if I had given my wife 30 units of insulin?  I am still pretty upset over this and have questioned every little thing that happens in my wife's medical life.
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jennyc
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« Reply #7 on: January 09, 2010, 12:53:11 AM »

With CKD or CRF you kind of get used to the meds they put you on and you usually know when a mistake has been made. With 3hrs x 3 times a weeks... you wife must have a bit of residual function left. Once that drops down she will eventually need more. I start hemo soon and i've pretty much just lost the 4% i had and i intend doing as much as my body can handle (nocturnal if i can). It is good to question, you do need to know what is going into you (or your wife) but eventually the meds will become second nature and if in doubt ihd is always here to answer your questions.

Simply your kidneys work 24/7 mine and most others on this site only get part of what your kidneys do 3 times a week. Even with 12 hours a week, if your wife does a lot of physical activity they might boost her hours sooner. Really the 4/5 hours 3x a week most do isn't enough, that's just what their govt/insurance is willing to pay for.

Considering your situation, PD might be a better option. It does eventually fail but you can get 7 or more years out of it (point in case.... me). When mine failed i had a new born son, so PD was the best option. We go on holidays, overnight trips. We take my machine along, pack boxes in the car and head off. We never have to worry about scheduelling hemo or anything. upto a week or so away we just took our own supplies and didn't worry about calling baxter to organise a drop off. It's so much more flexible if you travel alot. Also you get used to the preggy belly. It's not so bad.
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2003 January - acute renal failure
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2009 October - PD failing, First fistula put in.

Cadaveric Transplant 27/1/2010
petey
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« Reply #8 on: January 09, 2010, 04:10:44 AM »

DON'T SKIP TREATMENTS !! (Yes, I know caps are used for screaming -- hint: I was screaming!)

I, too, question every single thing that is prescribed for my husband.  That, I believe, is a good thing.

My husband was in-center (3 times a week) for 12 years.  The whole time, I kept saying, "Wouldn't MORE dialysis be better for him?"  But I got the "insurance only pays for three times a week" answer.  Grrrrrrrrrrr.  Insurance should pay for what the patient NEEDS, damnit!  (Sorry, I digress -- that's thought for another thread.)  We've been on home hemo for two and a half years (6 treatments a week).  This is better, but I still think if he had dialysis around the clock it would truly be taking the place of his now non-functioning kidneys.  (Don't laugh -- those portable, wearable things are coming soon!!)

Marvin has had 2,158 treatments (and, yes, I've been counting).  He has not skipped one yet -- not while in-center and not while on home hemo.  We don't plan for him to ever skip one, either.  Even though you say she's new to dialysis and still has some function left, you don't want to do anything to jeopardize what little she has left.  Skipping treatments brings up a whole other set of consequences (that have been mentioned here) -- and that's skipping when you've just started dialysis or skipping when you've been on it for years.  Skipping is skipping.

But, this doesn't help your situation, does it?  Can your wife switch to M-W-F at her clinic?  If you always set up your shows on the week-ends, this would free up her week-ends.  Talk to the staff at her clinic and explain this to them; hopefully, they would work with you.  PD is another option, as is home hemo (both are travel-friendly and could make it possible for her to take her dialysis with her when you go).  Explore these modalities to see if either would work for her.

If nothing else will work and she can't switch to MWF, then either see goes with you WITH DIALYSIS ARRANGED THERE or she stays at home to get dialysis at her regular clinic.  Period.
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karen547
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« Reply #9 on: January 09, 2010, 06:19:18 AM »

Her health is the most important thing!!!!!!!!!!!!!
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cdwbrooklyn
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« Reply #10 on: January 09, 2010, 11:05:17 AM »

It is not good to miss treatments but things do come up.  I've been on dialysis for almost 11 years and I've missed some treatments however not all at once.  If your wife can go back to back that probably will help some.  For example:  she can go on Tues, Thurs, and Fri, so you can go on your trip as long as she is back on the following Tues.   

Honesty, I don't like missing any treatments because I start to feel a little sick. :puke; However, it's not that bad and I do get better after going back to back.   But if you need to do what you have to do, then do it.   

Hope this helps!!   :2thumbsup; 
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Dailysis patient for 14 years and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
kitkatz
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« Reply #11 on: January 09, 2010, 09:00:17 PM »

I have not missed a dialysis session in over eleven years!  Please see her social worker and have them wor kwith you for dialyais session wherever you are going. it is possible.
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Remember your present situation is not your final destination.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
davej
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« Reply #12 on: January 10, 2010, 07:27:55 AM »

In some locations it is just not easy to find a dialysis center.

With our lifestyle, my wife will eventually switch over to something that we can do at home, motel or motor home.  I don't think the peritoneal dialysis is what we/she wants.  Would like to hear from people who use other methods of treatment. 
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jennyc
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« Reply #13 on: January 10, 2010, 07:36:53 AM »

Can you get acess to the Nxstage machines? we aren't lucky enough to have them in Aus yet but i've heard good things about them
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2003 January - acute renal failure
        March/April - Started PD
2009 October - PD failing, First fistula put in.

Cadaveric Transplant 27/1/2010
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« Reply #14 on: January 10, 2010, 07:41:44 AM »

Yes, Dave,
Ask in your clinic about NxStage. There are many of us here on this board who have chosen that option. It is definitely a good choice for those who must travel.

My husband did not want PD, either. We have been doing NxStage for almost a year and a half and travel to Florida and Massachusetts as often as possible.

Aleta
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Carl transplanted with cadaveric kidney, February 3, 2011. :)
lola
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« Reply #15 on: January 10, 2010, 07:45:47 AM »

In center was soooooo hard to work with, they kept telling Otto he could quite his job and go on SSD. Otto is 38 and hates what is going on with his body as he feels like he no longer has control, not working is not an option as he has said if he can't work he's done with Dialysis. We now do home-hemo, this has also not been a walk in the park for Otto BUT he does feel better and it's more flexible. I can't realy comment on skipping as Otto is the KING at that and it pisses me off but I have learned not to push. I really hope you look into home-hemo..........
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« Reply #16 on: January 10, 2010, 07:59:01 AM »

NxStage and home hemo are great!  Check it out.

PS MM wanted to skip yesterday, I said NO!  Get in that chair!
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paris
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« Reply #17 on: January 10, 2010, 08:16:38 AM »

NxStage is the answer.   But, in the meantime, do not miss dialysis sessions.  It isn't like skipping school.  Toxins are building up and your wife can become very, very sick.  She is on dialysis for a reason.  You said her kidneys "appear to be functioning".  Do you mean she still urinates? That doesn't show how much her kidneys are functioning.  I am worried for her. She could end up in an ER somewhere, far from home.  Take care. We know this is hard emotionally and financially.    Keep asking questions---we are all here for you.
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« Reply #18 on: January 10, 2010, 12:46:30 PM »

NxStage is definitely a good choice if you don't want to do PD.  It travels well and you can decide which days you do treatment as long as you get the prescribed number per week.  My husband does M-F and we take the weekend off.  He is feeling very well and his labs are really good.  We have traveled several times and taken it with us.  This would be much better than skipping treatments.
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davej
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« Reply #19 on: January 10, 2010, 07:14:09 PM »

Thanks for the reponses.  Can you give me some info on NxStage?
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Hanify
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« Reply #20 on: January 11, 2010, 01:46:13 AM »

All I know is we don't have it here ... grrrr.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
davej
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« Reply #21 on: February 17, 2010, 07:35:28 PM »

Can anybody tell me about NxStage.
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okarol
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« Reply #22 on: February 17, 2010, 07:41:01 PM »


Theres a whole section devoted to NxStage on the forum. Or you can use the SEARCH feature.

okarol/admin
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Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
TRANSPLANT FROM LIVING DONOR 1/16/07!
Now needs a new kidney, loss due to rejection.
Started PD Sept. 2013
Searching for a living donor using social media, friends, family.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
Here's her bio on Living Kidney Donor Search http://www.livingkidneydonorsearch.com/our-stories2/jenna-franks2/
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
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« Reply #23 on: February 18, 2010, 06:33:59 AM »

NxStage skip days are more flexible.  For billing purposes we are told to always take ours on the same day, but the general rule is you get one day a week to skip when you choose.  Just don't ever skip two in a row.

In-center is rough on the body in general.  I remember some holidays/family emergencies where Jenn had to miss a Monday or Friday treatment.  Skipping one of the 3/week treatments is very hard on your body and usually takes a few treatments to recover from.

Don't ever be seen as non-compliant.  Those folks that give out transplants keep files on all of us.  We saw ours once, it was disturbing.  You'll think judgment day, death panels, big brother, etc. is real if you ever see yours.  They will write down subjective "observations" that don't have to be proven or agreed upon as fact by you.  The less they know the better.  Don't give them any negative ammunition.
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My wife is JDHartzog. In 1994 she lost her kidneys to complications from congenital VUR.
1994 Hydronephrosis, Double Nephrectomy, PD
1994 1st Transplant
1996 PD
1997 2nd Transplant
1999 In Center Hemo
2004 3rd Transplant
2007 Home Hemo with NxStage
2008 Gave birth to our daughter (the first NxStage baby?)
davej
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« Reply #24 on: February 24, 2010, 04:28:04 PM »

NxStage skip days are more flexible.  For billing purposes we are told to always take ours on the same day, but the general rule is you get one day a week to skip when you choose.  Just don't ever skip two in a row.

In-center is rough on the body in general.  I remember some holidays/family emergencies where Jenn had to miss a Monday or Friday treatment.  Skipping one of the 3/week treatments is very hard on your body and usually takes a few treatments to recover from.

Don't ever be seen as non-compliant.  Those folks that give out transplants keep files on all of us.  We saw ours once, it was disturbing.  You'll think judgment day, death panels, big brother, etc. is real if you ever see yours.  They will write down subjective "observations" that don't have to be proven or agreed upon as fact by you.  The less they know the better.  Don't give them any negative ammunition.


Thank you.  That is excellent advice.  My wife and I went to have a discussion aboug NxStage and I do believe that we are  going to do it.  4-8 weeks of training 5 days a week is a bit much, but we can deal with it.  Was told that there was a lot of reading to do?  It can't be all THAT complicated but I guess you have to know the machine inside and out because you need to be prepared for anything that can happen.
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