Too much of every time...HELP

[onelove]

My boyfriend goes in for treatment 3 times a week. Each time he comes off the machine under his dry weight. Usually twice, sometimes more than twice the amount he should. He tells them when he starts to feel bad but they keep him on it. Hes told his doctor. But every time its the same thing....

We are both frustrated so much. He should be feeling better, but every time he feels bad after it.

What can we do to fix this????

[lovinglyvenus]

Re: Too much of every time...HELP

Well onelove....I have to tell you from my personal experience with the same issue that he needs to be more proactivewith his care. Please dont misunderstand what I'm saying because I'm sure he is telling them his weight when he gets there and when he starts to feel bad. What I mean is if they are taking too much fluid have him learn the nurses by watching them put the numbers in the machine. Then also be aware that in order to calculate what needs to come off each time they subtract his dry weight from his current weight and then add that number to .5. So If he is over his dry weight by 1.6kg they are going to take off 2.1 to account for the extra fluid they give at and begining and end of his treatment. He can tell them how much he wants taken off and they have to take thatammount unless its a lot then they can say they will try but mightnotbeable to get it all. My one trick that I still have to use with a coupleof the nurses who dont listen I tell them I'm comming in under the weight I'm really at. That is a last resort. Maybe he needs to talk to one of the other doctors who makes rounds there because I stopped seeing mine because she wouldnt listen, and you have to have that. Good Luck let me know how it turns out.

[cicero]

Re: Too much of every time...HELP

Weight is one of the things that is always a problem. It is for me even after 6 years. I have a record book that I keep just so I can communicate with the Staff. They have a very short sighted view of weight. Mostly they can see only yesterdays and today's. They then try to make some sense out of those top figures and its hard to do. Last night the Dr tried to tell me I was losing weight and I read him my Monday weight for this year and said that you can see there is a very constant value for about 20 weeks and so your short term view is incorrect.
The reply above is factual and correct even if it seems counter intuitive. You have to be proactive and manage the staff in order to keep your body as healthy as possible.
Keep a log of everything that can be tracked. Use a program like Googles Health and you have your data to prove whatever is true.
Good luck and best regards
Cicero

[mrllwall]

Re: Too much of every time...HELP

We feel for you as my husband and I know exactly what you are going thru. It has been a constant fight every treatment on dry weight and pulling too much fluid with him. He has passed out many times after treatment, had horrible cramping, slept for many hours afterwards since he's so wiped out. Now he's had to be taken off work from a job he loves on dialysis days due to the condition he's in after treatment. He argues and fights every time because he knows the number they can pull and what will happen if they go over that but they don't care, they just change his dry weight constantly, "challenge" him constantly and pull whatever they want. We were given the impression too that he would feel so much better after starting dialysis, but that has not been the case at all. I wish you the best of luck and will keep my fingers crossed that things improve for him

[M3Riddler]

Re: Too much of every time...HELP

My boyfriend goes in for treatment 3 times a week. Each time he comes off the machine under his dry weight. Usually twice, sometimes more than twice the amount he should. He tells them when he starts to feel bad but they keep him on it. Hes told his doctor. But every time its the same thing....

We are both frustrated so much. He should be feeling better, but every time he feels bad after it.

What can we do to fix this????

OneLove,

Unfortunately, this is common with in-center dialysis. the good news is, it can be controlled. One way to control this is for both you and your boyfriend to take an active role in his treatment. Become familiar with dry weight....what affects it....how to manage it...
dont rely on the nurse/tech or even your nephrologist to adjust your boyfriends dry weight. He may see his nephrologist only once or twice a month. Your boyfriends weight does not wait for your nephrologist to change it, it can change constantly. This is why you must be able to recognize and manage it yourself.
Become involved as much as you can with the treatments. Learn how to set the cycler up, learn how the codes and alarms mean.

For dry weight, many things can affect it. Here are a few pointers...

Blood pressure - when blood pressure starts to fall, then you may be reaching your dry weight.
Pulse - When you reach your dry weight, your pulse tends to rise. If you see the pulse rate start to rise above 90, then you may be approaching the dry weight.
Fluid Removal Rate - It is very typical with in-center dialysis to pull too much fluid off too fast. The body can only handle removing a certain amount of fluid per hour for this is all the blood stream can hold. It takes time for the fluid to shift positions from the tissues - cells -bloodstream. The average amount that the bloodstream can hold is approx .4L or 400cc's per hour. Again, this varies due to weight, height etc...
It is very typical that too much fluid is removed during in-center dialysis. this is where you have to take charge and demand they not pull as much per hour. Your boyfriend has a say in how his treatment goes. He needs to be more inovled and take charge.

Another common thing that occurs in-center is that they remove entirely too much fluid off per treatment, the blood pressure plummits, you start feeling horrible and what do they do?....They give you saline to raise the blood pressure.... then by the end of the treatment, you may leave weighing more than what you started at the beginning of the treatment. Again, this can all be controlled by limitting the amount of fluid per hour.

Stand up for your rights... Take charge... and learn and become educated. Have your boyfriend read his chart on a regular basis.. Learn what the blood results means... and by all means...become involved with the treatments...

///M3Riddler

[cicero]

Re: Too much of every time...HELP

Everyone has told you most of the things that can be done. The last writer mentioned the one thing that you must do no matter what else. Become an expert on your body and dialysis. This will help. It may even be the total solution.
Some other things that are sort of drastic.
1, Make a move to see about NxStage at home 6 times a week. You and your partner are the nurse and tech for this and the weight is less since the time is less and cramps and that "dead tired" feeling don't exist much, or if you do it right, at all.
2. See if you qualify for PD and learn and think about that and that once again puts the daily regime under your control. It does not mean that you can be willy nilly about it but it does mean that if its wrong you know who is to blame.
3. See if there is a nocturnal offering in your center. Its usually 8 hours and my term is from 8PM to 4AM Sun, tue and thr nights, 8 hours means 1/2 the toll on the body for the 2.5KG, an example, that you have to take off. 2.5 + .5 for the machine is 3/8 KG per hour at night. In the day it means 6/8 KG per hour.
4. If nothing else works there is a formal complaint route and I suggest that if it comes to it you use it. First write out your complaint. Make sure of your data and use that. Get an appointment with the facility Administrator and discuss this with him or her. If possible impassionate and calm but thoroughly. Tell him/her what it is you want and ask when can that happen? I believe in 45 out of 50 cases this will solve the problem.
5. Recognize that this is not a medical cure or even a medical solution. Hemo dialysis will keep you alive. it will not make you feel better.
The following is Cicero's algorithm for winning at in center hemo dialysis. Maybe others also.

The dialysis procedure will keep you alive but it will not make you better. But you can. First no matter how bad you hate ESRD and dialysis you have to accept it and if necessary get some pills for the depression it brings with it. You have to be at least neutral for the dialysis to work. A good attitude lets it work even better so try for a positive attitude by helping others, etc.

NEVER MISS OR SHORT A TREATMENT, NOT EVEN 1 TIME PER YEAR.

Exercise. set up a routine three days a week or more,and exercise for 1 hour those days. Join a gym if possible. This exercise will increase the attitude and also let the dialysis work better. Now you are starting to feel better..so we'll go to the next step.

meds be sure to take them all when they are suppose to be taken with no exceptions. This is slower to get better feeling results, but it will pay off.

Fluids be mindful of the limits and abide by them. This will pay off in two ways. It will reduce the likely hood of cramps and it will make the dialysis procedure go better and be easier on your body and you will immediately start to feel better after each session.

Diet the same as fluid. Mind it. if you have diabetes mind them both and if high blood pressure, then all three. This will again make the dialysis procedure be better on you with better results as the waste that it can't get out for banned foods won't be in there and the body is closer to a healthy balance of stuff in vs good stuff in.

Sleep and rest get the right balance and you'll feel better and be better.

Giving: find somebody or something that needs help and help. You'll be surprised that this can make you feel so good. It will help make the dialysis procedure be more of a interlude than a punishment which it probably feels like right now.

I am not a medically trained person and it took me too long to learn this and since I have learned it I have a more pleasant life and worry about dialysis hardly at all. I guarantee this recipe. It will work on all modes, but on hemo more than others. It will also make you a better candidate for transplant.

Now I'll quit preaching and say go in peace.
Cicero

[Marina]

Re: Too much of every time...HELP

Cicero,

excellent post, EXCELLENT advice!!!

[cicero]

Re: Too much of every time...HELP

Thanks, I just want people to know the situation is not the end of the world, life or even feeling good.
Best regards
Cicero