I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: monrein on July 10, 2008, 03:40:45 AM
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On Monday the 14th I begin doing dialysis five days a week for 2 1/2 hours each time instead of the 4 hours I currently do. My neph was quick to agree to this request as he thinks I'll have less ups and downs than I do now. Even though I'll miss the off days, I'll be glad to feel those benefits and the first two hours pass relatively quickly for me. There are already several other patients who do this and the nurses (and the one other patient I've talked to) say it's a huge improvement over three times weekly.
Ideally, I should take Wednesday and Sunday off but I'm leaving my weekend intact for now but can switch later if need be. I'm planning to think of the gym and dialysis as my new daily structure. Gym in the morning (usually 9-11) then free time till 2:30, D until supper time and evenings and weekends free. I'm hoping that the increase in frequency and loss of free days will be offset by me feeling less washed out after each session. More often will also help greatly in establishing my buttonholes even faster. I'm working now on setting a date to have my permacath taken out. :yahoo;
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Hope you feel better with the sacrifices you make. :grouphug;
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Good news from you this morning Monrein! Sounds like you have a good doctor, too.
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Keep us posted on how your doing for future consideration, good luck...Boxman
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Monrein, when Marvin switched from in-center (3 x week) to home hemo (6 x week), it made a HUGE difference in how he felt, how much energy he had, etc. I think this is a good move for you, and I think you'll find the sacrifice of the extra time for the additional treatments will make ALL the rest of your hours (when you're not on the machine) better. Good luck. Keep us posted!
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Good luck!!! I'm sure it will work better for you. :2thumbsup;
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Monrein, I am glad you have doctors that are willing to let you try this. I think we know our bodies better than anyone, and you are very informed and aware. I hope this works well for you. :2thumbsup; You are dealing with everything with style and set a wonderful example to others on how to go through this journey. :grouphug;
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I thought insurance would only pay for 3 treatments per week.
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WONDERFUL idea! I so hope it works for you!! I think I'll ask at my center if they do that, and if the insurance covers it. Daily is always so much better than intermittent. I'd say you have the right idea, think of it as a daily routine, going to the gym has got to help, too!
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Good luck to you, Moonrein!
I hope you feel much more energized with
this new routine in your treatments!
Anne
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She's in Canada flip. It's different than in the U.S. Insurance is not an issue. Treatments are covered for everybody.
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Wow all that and the gym as well !!!! I hope you feel better doing 5 days , its worth a try!
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I hope the 5 days will be better for you.... and doing the gym too!!! I applaud you :clap;
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Sounds like the perfect time for an afternoon siesta. I hope all goes well! :)
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Thanks everyone. It of course cuts into my time, but if I feel good after treatments I figure the quality I gain will be worth it. My neph is a big proponent of daily and home and nocturnal and as Del pointed out, here in Canada insurance is not an issue. I pay nothing and my drugs are subsidized by a program that is geared to income. I'm thinking of it as a part time job, and I've been back at the gym already trying to get back into my routine. It'll be an adjustment for sure but I'm ready to try. :grouphug;
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:yahoo; fantastic. i wish only the best for you. it sounds like you have a great out look about it all.
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I do know people here in the U.S. that do home hemo 5-6 days a week and feel much better. Evidently there is no limit on the number of treatments if you do them at home. Correct?
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Sounds great monrein, I hoe that you are feeling better and better with each treatment.
Flip - as far as at home on NxStage, the way it works with my clinic is that the Dr. writes a prescription for a weeks dose of dialysis (Dialysate) based on my body, and labs. For me it is 120 Liters. I broke that up into a 5x schedule of 20L (2.5 hrs) Tu/W/Th and 30 L (3:45) Sa/Su; others do different schedules and different volumes. I have also run a 4x week with 4 30L treatments, but my nurse doesn't like me to do that too often. As long as my labs are good, my schedule is flexible. I just need to remember to get the minimum of 120 Liters each week.
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Thanks for the info, Meinuk. I'm leaning more and more that way.
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Way to go. I am sure you will be felling better. With button holes and 5x a week it sounds like you are on your way to home treatments?
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More info for Flip --
Marvin's NxStage prescription (written by his neph and based on his size and labs) calls for 20L of dialysate 6 x week (120 L/week, just like Meinuk). We, however, don't break it up like Meinuk -- we go six days in every week, with each treatment getting the same 20 L "dose." We do get to choose which day to take off each week -- as long as you don't pick Sunday of this week and then Monday of next week (two days back-to-back). Other than that, we have the freedom to chose. We take a look at our schedule for the week (of other things -- not dialysis) and plan Marvin's "day off" accordingly. We also decide what time each day we'll do treatments (could be 7 a.m. today, and 9 p.m. tomorrow -- doesn't matter). Marvin's treatments last between 2.5 hours and 3 hours -- depending on how much fluid he has on that particular day.
Marvin is really having a hard time adjusting to the loose fluid restrictions on home hemo. When he was in-center, it was a strict 30 oz. a day, and he stuck to it religiously. Now that he's on home hemo, he's still not realizing that he can drink more each day. As a result, he doesn't have much on between treatments -- sometimes 0.1 kilo (and no urine output for years)! But, when you've been on in-center with the tight fluid restrictions for so long (12 1/2 years), it's hard to adjust to drinking more. He's working on it. Also, Marvin feels much, much better when he has an extra half kilo on (as opposed to being a half kilo under dry weight). He also does better when his bp is up -- just a little -- like 130 or 140 over 70 or 80 (as opposed to 110/55). His bp has been running low lately because he doesn't drink as much as he can (and should). He stopped all bp meds when he went on home hemo (and he was on three different ones -- just for bp -- when he was in-center). We think these are good "problems" to have.
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How about travel?
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I'm curious. Are you going to a dialysis center, and if so how did your Dr. get the center to agree with this?
Ann
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Well, I go to a self-care clinic where I set up the machine, do my needles (with some help at the moment as I'm training on buttonholes.) I've been feeling washed out and getting headaches after D so I started telling my charge nurse that my understanding was that a person feels better with daily runs. Nocturnal may be a possibility for me down the road. There are three daily people now at my centre so I also talked to one of them who said it was a huge improvement for him. I have an appointment in 2 weeks or so with my neph but my charge nurse said he's a big advocate of more frequent treatment as people feel much better and it's easier to manage the chemistry. So she called him, he approved it and ten days after my first ever mention of it I'm starting to do it on Monday. I have an individual appointment with my neph once a month but if anything comes up or I have questions, my charge nurse calls him and gets back to me within a day or two. I've consulted him in this way three times already.
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My personal feeling is your body will actually feel better if you split your days off, rather than getting it accustomed to every day then having 2 days off in a row, you may be feeling pretty lousy by the time you get back on the machine. occasionally Sharon has a day off from the NxStage and she asks to go on early the next regular day because she knows she needs the treatment, I know she would not be able to handle 2 days off in a row. We just had our monthly meeting at the clinic today, and as usually her labs were really great, nothing to be concerned about, but by the time we got home, she asked to get on to help her feel better (the activity of traveling and in and out of the wheelchair knocks her out physically, but a treatment and the rest while on the machine makes the difference.......
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I'm sure you're right silverhead and it does make the most sense to do it that way. I want to just try it this way first because of my cottage which I've missed due to feeling so lousy pre-dialysis. If its too much I'll listen to my body for sure and we've already talked about it at the center, my nurse and I. So we'll see how it goes and I'll keep you updated.
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Monrein....you might want to try my setup if you are getting headaches. I hook straight up and start the saline as soon as the blood starts flowing. I also do a thorough rinse at the end. You need to adjust to an extra 0.5-1.0 kg. of fluid removal because of the extra saline. It works well for me and I feel great when I leave the center.
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Thanks Flip, I'll try that. I've also just upped my dry weight by half a kilo and last time was good. I had lost quite a bit of weight pre-dialysis so I think the dry weight was too low and I also may not have been drinking enough. Good tip about the saline.
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good luck
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I've been doing six days a week, two hours each shift since January. I have to say I feel more balanced than before, but some weeks my arm never stops hurting and I'm in constant pain. In our center, Medicare pays for four days and the center eats the other two. I'm fortunate to be in a non-profit center so all money earned goes back into the center. I doubt a chain like Davita or Fresenius would allow this as they seem to nickel and dime everything (including using non-sterile gauze pads because they're cheaper, thus endangering patient health)
Since it's the summertime, on average I've been going five days a week and skipping a day to simply enjoy a day away and clear my head. What I call "Dialysis Fatigue" sets in sometimes and I have to get away or I'll go clinically insane.
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Petey hubby is much like Marvin in getting used to the loose fluid restrictions. There are times when he goes to hook up that he is below his dry weight. Summer time is really good because he can drink everything he wants plus more. he sweaTS OUT ALL THE EXTRA FLUID!!! Hubby's dialysis nurse told us that a lot of people feel thirsty between treatments because they are uremic and being uremic makes you thirsty. Hubby used to alwways find that by Monday night (he did Tues, Thurs, Sat) he would be thirsty gues that was why!! Don't get that feeling with daily dialysis because the blood is being cleaned better.
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Hey Stacy, do you have buttonholes?
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Hubby does 5 nights a week. He has buttonholes and no pain at all in his arm.
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I hope it all goes well for you.
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No, not presently. I've actually been having issues with my graft swelling when a certain area is used too much. Keep in mind that my graft is TWELVE YEARS OLD. The transplant people teased me last fall with a request for more tests to check up on my health. I haven't heard a word since. I'm thinking of having another one put in, but the thought of another surgery makes me a little queasy.
I may have no choice though.
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I've been thinking of you all day today. I hope it went well.
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Thanks Linda. Although I really don't like how every day takes my time I actually am feeling better when I come off so it's worth it. Being able to go for a walk and even out for dinner after dialysis means I lose time but gain back better quality time when I'm free.
I also did a great workout today and feel like I'm getting more of my former energy back.
Hope all is terrific with Stephen.
Stacy, sorry to hear about the swelling and can certainly understand your reluctance about another surgery. Hang in there (obviously you're already very good at that) and if it comes to it I know you'll handle it with the usual grace.
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Monrein when we did our training for home hemo hubby did short daily runs for 5 weeks Mon. to Fri. He had no problems whatsoever with the 2 days off. He just watched his fluid and took his binders for phos.
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Trusting that everything goes well for you with this new schedule. sounding good. let us know how it goes.
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dialysis fatique
thanks
now I know what to call the way I feel
take care of yourself
enjoy your posts
my daughter is Stacy with a Stasie
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Monrein , how did the first week of 5 days a week go?? Do you fel better?? How did the 2 days off go?? :flower;
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Thanks for asking Del. It went really well and no headaches except for a slight one the second day. I felt good on the weekend and we went to the cottage for two nights. I had to be pretty careful, the usual over the weekend but I have a bit more flexibility with every day and they're encouraging me to drink more. I have to cut out more of my BP pills as I haven't had such good pressures since I was about 4 months old.
My venous needle infiltrated again last Thursday so we rested it and went back to the cath but today we used the fistula with two 16 g needles (we'd been using the 15g before). The nurses think we should try to do the ladder technique until the fistula gets a bit stronger then go back and establish the buttonholes. That's a little disappointing but it's a pretty minor blip, all things considered.
Love to you, hubby and of course the garden.
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Monrein hubby felt almost as well doing the short daily as he does doing the long nocturnal treatments. Blood levels weren't much different than with nocturnal . The phosphorus level was his problem with short daily and he didn't want to go back to taking binders. We are planning a trip to St. John's in August for 2 nights without an in center treatment. I don't think he will have any probs. If he wants to have a beer he will just have to do something strenuos to sweat it out!! lol!!
Hope you get your transplant soon.
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What binders did he take Del? I just take calcium carbonate tablets, one with small meals and snacks and two with a larger meal.
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He took renagel. Usually 2 or 3 with a meal and one with snacks. He found them really hard on his belly though.