I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: graciekycats on November 16, 2015, 07:04:19 PM
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I have had my dry weight upped twice now because I am GAINING weight! (finally) They still want to pull 3 kilos off about what I am over in weigh-in. It's leaves me feeling light headed and BP is usually 109/59 which is really low for me and leaves me washed out for a full day after then dialysis again. I told them on 1.5 kilos off the last two times and it felt so much better. They even tried to bully me into pulling more but I said no. They said they would document that I refused extra fluid removal. What is up with these people? I know pulling that much fluid off in 3 hours is damaging my body why don't they know this? It is just so frustrating.
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They should not be taking you below your dry weight. Speak to your doctor and tell them that the center is trying to take more fluid off then they should. If you are more than 3 kilos over your dry weight have your doctor raise it to within a kilo of your current weight. They can't document away your rights. Some of these people think they own the patients. If you gain a kilo call your doctor don't wait for the next appointment.
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I just had this chat with my clinic yesterday. Dry weight was 155 but I was always feeling dragged out and tired. I adjusted my weight up two pounds by myself and explained to them that I feel so much better at this weight. I try to keep my weight now between 157 and 160. It seems to be working as all my lab work came back excellent. Dr. said to stay this way and we'll see how it works out. I always try to explain to them that they don't need to use a cookie cutter to treat all of us as all of us are unique in our own way. What works for you may not work for me and vice versa....anyhoo....Good Luck and I hope you get to feeling better!!!
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Stayingalive is right every patient is different my problem is I don't retain fluid I still void every thing i drink. In almost 3 years I have not been able to convince all of the techs at the center that all they should take is one kilo since any more leaves me feeling like crap. If I am awake at 6:00 AM when I start dialysis I insist on only one since I am the patient I always win. But half the time I forget.
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Stayingalive is right every patient is different my problem is I don't retain fluid I still void every thing i drink. In almost 3 years I have not been able to convince all of the techs at the center that all they should take is one kilo since any more leaves me feeling like crap. If I am awake at 6:00 AM when I start dialysis I insist on only one since I am the patient I always win. But half the time I forget.
I'm in the same boat but they are very willing to do one kilo when I ask and when my weight gain is about 1.5 kilos. Last night I needed to talk two because of a big weekend and like @graciekycats I was washed out afterwards. I worry about taking more because its really hard to tell if I'm full of water (which I void constantly) or food...
@graciekycats when you need 3 kg does the nurse see swelling in your legs? Just wondering. I could see them pushing back (with a reason) if there was swelling. That's not to say they just want to push back because that's what they do.
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Our experience in doing home and I would think same for in center.....the nephrologist makes the decision on what the dry weight is at all times. Its fluctuating and a moving target based on weight gained or lost. She uses the blood pressures and amount taken off from the flow sheets to raise or lower the dry weight. History was lost weight before dialysis due to fatigue, no hungry etc. After starting in center hunger came back and weight gained...raised dry weight. Broke leg and in hospital, hunger diminished...dry weight down. Now hunger is back and dry weight goes back up....bottom line its a moving target.....Dr looks at it all and then asks us our thoughts on dry weight. She then make a decision...Its her call not in center or nurses call. How you feel is probably the most important part though. Share that with Dr.
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If my husband gains a little weight or his blood pressure is a little higher and especially if he has any edema, his Neph has him "challenge" his dry weight by removing more fluid but, a little at a time over the course of a couple of treatments. Once we start seeing his BP drop (either during treatment or off days) as well as a drop in weight and providing there is no edema, we pretty much know he's hit his (new) dry weight. -I might add, he does home-hemo 5x a week.
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How much they remove (the "UF seting" ) should be your choice. I NEVER allow the techs to take off more water than I think I can handle. As long as you are not gaining water, you should be fine if you don't allow them to take off too much, and if you cramp at 2 hours, you need to tell them to not take too much off.
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Depending on the tech, I would sometimes have to elevate to one of the RNs on duty, especially when I got the tech who was a policy based robot. Now that I am doing it at home, I argue fluid with myself - but generally never go over 2000 on an awake run or 3000 on a nocturnal.
I've noticed that the MD sets the EDW for in-center patients at my clinic but once I transitioned to home, the home care RN sets the EDW and when it changes, it just pops up when I start the iPAD to record my data.
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I apologize to all. Did not realize when I responded that it was hemodialysis being discussed. I am doing PD and realize that its a different world than hemo. I will try to pay more attention and try to only comment when I actually pay attention. lol Hope one and all have a most wonderful day!!!
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Dry weight is a problem whether it is in PD or HD. Please chime in as you feel the need.
I decide what to take off at my sessions. There have been times when I overestimated but we deal with it and learn from it.
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It has always been a major battle for me to have my dry weight increased and seems to happen only after I've been sick or worse, blacked out a few times. My BP is a bit low at the moment and feel like I could do with some added weight. It won't be long I suspect before I get to this stage again. They are very quick to reduce dry weight at my unit but painfully slow at increasing it.
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When I started they began challenging my dry weight, I was new and did not understand the process. I left after every treatment feeling like 10 miles of bad road. After a month I went to see my nephroligist and my blood pressure was 75/45 to say there was panic at the office would put in mildly. My doctor is part of a huge medical group so they moved me to the urgent care center and proceeded to put two liters of iv fluid in me they wanted to do another but at the time I was working full time and I had things to do. Since then I monitor my fluid intake and output once a month and as long as it matches the doctor sets my dry weight 1 kilo under my current weight.
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Well I began to tell my in-center techs/nurses only take 1.5 kilos off. I felt sooo much better. Have one tech that still wants to bully me and say they need to challenge. I have no swelling. I have allowed them to remove 2.5 kilos just to see if I felt any different - BP is low (for me) and some cramping. I still refuse the 3 kilos they want to remove and had my dry weight upped another kilo. You are right they are robots - all going by same play book for all patients!!!! Just keeping strong - won't be much longer - getting PD cath Monday for PD at home. :2thumbsup;
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The dialysis world is divided into two worlds a smaller fraction that still go and the larger portion that don't.. For the majority doctors like to occasionally challenge your weight to to see if it causes your blood pressure to drop if it does your dry weight is ok if it stays up your dry weight is too high. This is how they check for what your dry weight should be. This should be done periodically. For the minority still going it needs to be done to check if you are still going as much. Personally I worry about that and once a month I track what I drink and track what I void. If the numbers are close I still putting out what I take in.