I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: davej on January 08, 2010, 06:27:27 PM
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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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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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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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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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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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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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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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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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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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Her health is the most important thing!!!!!!!!!!!!!
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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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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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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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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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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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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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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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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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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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Thanks for the reponses. Can you give me some info on NxStage?
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All I know is we don't have it here ... grrrr.
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Can anybody tell me about NxStage.
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Theres a whole section devoted to NxStage on the forum. Or you can use the SEARCH feature.
okarol/admin
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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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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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When you start training just hop on over to the NxStage forum for advice. We did our training in only two weeks. After you have used the machine awhile it becomes like changing oil in your car or baking a cake. Not that difficult, you just have to do everything in the right order or things will go wrong.
All a dialysis machine is, is a set of 3 (or 4) pumps for blood (red), dialysate (green), pee (yellow) and a filter where they mix. For blood, the red line sucks and the blue line blows. For dialysate (and pee), the green line sucks and the yellow line blows. The yellow, green and red buttons on the machine control three pumps for these. There is a 4th pump which a computer uses to balance things using pressure sensors I believe (but I don't know). You have to set the rate of each pump and press a button to toggle over to how much it will pump during treatment. If the yellow pump is running faster than the green pump, the yellow pump will suck water out of the blood through the filter (there is the pee). The dialysate is salt water that is supposed to have the right combination of salts in the blood. It levels out the levels of these salts in the blood through the filter using osmosis. This is actually more info than you will get in training but I have an engineering background and understanding what is actually going on with out using a bunch of medical jargon helped me a great deal.
The hardest thing my wife had to do was learn to stick the needles in and most of that was a psychological issue. Remembering error codes and what to do for each one and developing the finger dexterity to unscrew and reattach all the lines and syringes is just something you get better at over time and no amount of reading will help in most cases.
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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.
I'm sorry, but you're not he person who is to decide what kind of treatment your wife should have, andwether 2 or 3 sessions are enough... That's up to her doctors.
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My wife would still have her kidneys had her doctor done her job. Questioning doctors is a right we all have.
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davej, you have not said WHY you question 3xweek for 3 hours for your wife - that she doesn't need as much. That's a bare minimum (yes, I know some folks in this board report doing 2x/week, but that baffles me). 3x/week is normal for most patients. You have not given any indication as to why you think she should need less. I agree, unless you're a trained nephologist, or renal specialist, you don't really know.
I understand that you want less to fit in with your lifestyle, but to be honest say she only did Tues and Thursday treatments, she'd be overloaded with fluid come next Tuesday, and toxins, and would probably feel horrible and not be able to partake in all the travelling around you want to do on the weekends - that would definitely cramp your lifestyle choice.
Have you asked if she can go on Mon/Wed/Friday because of your weekend commitments(you may have mentioned this in a post, but I did not see it)?
As an alternative perhaps you can work with the centre for the weekends you want to be away to arrange to doa treatment on the Friday afternoon or Monday morning rather than Saturday. You need to work with the process to get the best out of it for your wife. Skipping should NOT be an option - it will be worse for your wife in the long run for any number of reasons.
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I just finished training with Nxstage and I have been at home for two weeks now.... I have only been doing dialysis since last Sept...... I went with Nxstage because I plan on traveling like you ... RV and never coming home..... well I will still have a house but..... another story..... I know people who dialysis with nxstage 4 days , 5 days and 6 days a week... they do those days based on their labs and how they feel..... More dialysis is better.... and makes you feel better.... Go with the Nxstage.. she will be able to go anywhere with you and do any amount of days she needs to feel good and enjoy life.... there are no set days off.... but when you go more than two day in a row with out dialysis you may feel bad.... Keep asking question and all of us will give you the support you need so that you can travel and go and do everything that you both want to do.... that is what is important in life....
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Although, it is impossible for any of us on here to diagnose or prescribe any kind of treatment for your wife (we aren't doctors, and even if we were, we don't know all the facts.) I am pretty certain your wife's health will not be hurt by more dialysis. More dialysis is always a good thing health wise for almost all people on dialysis. The only reason it isn't done more for most is purely for economic reasons. It sounds like you have some economic reasons of your own for wanting to work Saturdays. Will a MWF schedule work for now?
If your wife still makes urine and still has some GFR or whatever it is... (my wife never has been in the tweener stage of ESRD, so I don't know much about it) maybe she can survive on less treatment for now, but kidneys rarely get better, you are going to have to accept the fate of 3/week dialysis until you either get a home option or a transplant for her.
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Thank you for your responses. Looks like we are going to go for the NxStage classes. Hope to catch on quickly. This whole thing has been an educational process for us. All of this dialysis stuff was thrown on us (my wife) suddenly last November. I questioned the necessity of going 3 times per week when I knew little about the process. I do understand now that the more frequent treatments are, the better off my wife will be. I've observed the amount of fluid accumulation between treatments and it appears to be averaging roughly 3 lbs (between 1.2-2 Kg) and realize that if she missed a treatment, than we would have to get rid of roughly 3-4kg the next time added with the toxins which had built up. I am still having a hard time believing that my wife's kidney's detiorated so fast (May 2008-Sep 2009). She's had diabete's for awhile and supposedly that is the main cause of her kidney disease.
To add to the problem, she has the Hepatitis-B antigen and one of the doctor's claims that she contracted it when she was a kid growning up in the Philippines. Apparently, she was never tested for it until Nov 2010. I am not too sure about her getting it there because none of the other family member's have it. Also, when a person has Hep-B, they might also have liver problems. If my wife had it for all those years, I would tend to think that she would have some kind of problem with the liver, but she doesn't. Therefore, I suspect that she could quite concievably contracted it during a stay in the hospital last year in Sep or Nov. What do you think? BTW, this was an added problem for her dialysis treatments because she had to be isolated from others. What a mess all this has been.
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Yes sounds like alot..... I too only found out about my kidney problems last April 09 and my kidney function went down fast and started on Dialysis in Sept 09..... its alot to learn in a short amount to time.... but with sites like IHD a person can gain alot of imformation from some wonderful people..... I have learned alot from this site.... I beleive Nxstage will be wonderfull for your life style..... the amount of water gain inbetween treatments sounds fairly normal..... and that is good....
I dont know anything about the Hep B ..... but I am sure there are people here that do .... take care and keep in touch.... we are here for you and your wife.....
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Yes sounds like alot..... I too only found out about my kidney problems last April 09 and my kidney function went down fast and started on Dialysis in Sept 09..... its alot to learn in a short amount to time.... but with sites like IHD a person can gain alot of imformation from some wonderful people..... I have learned alot from this site.... I beleive Nxstage will be wonderfull for your life style..... the amount of water gain inbetween treatments sounds fairly normal..... and that is good....
I dont know anything about the Hep B ..... but I am sure there are people here that do .... take care and keep in touch.... we are here for you and your wife.....
Thanks for your response. I mentioned that we sell merchandise (shoulder bags, jewelry, clothing, etc.) at a number of festivals (CA, OR & AZ) throughout the year. Just before my wife got sick, we sold at a number of events along the coast in July/August, not far from you. Tillamook County Fair, Coos County Fair and Winchester Bay Oceanfest. I love the area and I have spent quite a bit of time along the Oregon Coast. No trip this year. We really have to change our schedule around.
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I'm glad you have come to the conclusion that more dialysis is good. Some doctors even have a hard time with that. A hospital resident told me once, "our machines are so much better than your home machine, so we only have to do it 3 times/week." There are a lot of half truths in that statement, unless they have a time machine hooked up to the blood pump. Normal kidneys are 24/7/365 dialysis machines. Anyway, NxStage is great. I'm guessing you have already had the Hepatitis B shots since you are married to her. So, you won't have to worry about isolation at home. I hope to hear your wife will be able to do treatments at home, or on the road, on a balcony overlooking the sea, on Sunday evening at 7:00 PM, etc.
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My dialysis buddy Peter has taken to coming in only one session each week. I am worried sick about him. He has some residual function left but not enough. Staff has given up warning him.
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My dialysis buddy Peter has taken to coming in only one session each week. I am worried sick about him. He has some residual function left but not enough. Staff has given up warning him.
That IS a worry - but he's been informed of the dangers and it is HIS choice. At some point you just have to recognise that people make their own decisions for whatever reasons and need to recognise that bad things can and likely will happen.
I hope he will be OK.
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Probably placing this in the wrong thread but I have been posting here about possible missing of dialysis sessions.
I mentioned that we were considering NxStage for reasons explained earlier in this thread. My wife has been going for dialysis since November now and we made the decision to go with NxStage. The whole process has been explained to us and it seems okay. However, my wife visited the surgeon and we discussed her access, which will be on her right wrist. My wife is tiny and her veins are not too prominent and the surgeon said that he might have problems getting a fistula placed over there. Had all the mapping done awhile back. He also mentioned that if he can't do it, then he would put an artificial vein placed in her upper right arm and then I was told by the NxStage people that we would not be able to use it if we did NxStage. So, we are in limbo right now as we await for my wife's surgery date and it will not be determined that she will be able to train for NxStage until they are sure that the fistula will suffice. Anybody have similar problem with their veins? Also, I was under the impression that the machine was transportable enough to be able to go away for the weekend and use it. However, according to the NxStage people, it is not really designed for partability. I'd like to hear from people who travel around with it.
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You CAN use NxStage with an AV Graft, and that is what it sounds like when you mention the artificial vein. This is what my husband has and several others on here and we all do NxStage at home. Further discussion is needed.
Also MANY travel with it. Check out the travel section...... You will have to hunt for the posts but they are there.
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My wife had some issues and they took a vein from her leg and placed in her wrist for her first fistula... I don't know what they call that. It worked well.
Anyway, you can take it anywhere as long as you have room for it and the dialysate. Maybe someone at your center broke theirs and is ruining it for everyone. As far as weekend trips go.... we just do dialysis on Friday and Sunday nights to avoid taking it with us for a Saturday night stay somewhere else. Saturday becomes our skip day that week.
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RichardMel I can understand what you are saying, but we have lost so many people at my dialysis center in the last year and so many of them were my friends (as Peter is). I know it is his body and his life, but I dont want to loose him if possible. And when we loose a dialysis patient it is often a double hit because often times I have become friends with a spouse who also disappears since there is little reason to come there anymore.
I guess my concerns come from the residual grief I have for my friend Dale who passed recently.
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It depends on how much residual kidney function you have left. I skipped two dialysis sessions over the Christmas period
without feeling any ill affects but I wouldn't recomend this for everyone.
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Weighing in on this a bit late (as per usual these days), but I am with those who say you should try never to missa session.
Having said this, I did miss a session for the first time in my five years, when I went to Barbados this year to celebrate my birthday. However, for me, it made me all the more careful and when I had my session, I had on less fluid than I nomally would.
The rule of thumb is DON'T MISS.
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Everyone is focusing on the fluid but what about all the other stuff dialysis does , like remove the toxins ! Missing dialysis is not just about being careful with your fluids , its far more than that !
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Everyone is focusing on the fluid but what about all the other stuff dialysis does , like remove the toxins ! Missing dialysis is not just about being careful with your fluids , its far more than that !
Kickstart maybe it's because fluid build up by missing one session would create an acute problem whereas toxin build up would be minimal.
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Yes Ken but we are not talking about missing just one session and lets face it minimal or not a build up of toxins is not a good one ! I just dont want people who are new to dialysis to think its all about the fluid .. when other things have to be considered !