Cramping and other problems start when fluid pull exceeds 2.5L during hemodialys

[jo]

Hi,

My mom has been on hemodialysis for the past 3 months and she is diabetic. Since the very first day they started dialysis, her blood pressure fluctuates tremendously. She does fine for about 15 mins and then her blood pressure drops to the lows (90/40, 80/40, etc.,) and they make her lay flat, and again in 10 minutes, it will go really high (eg: 200/90). The dialysis people will somehow manage to pull fluids all the way to 2.5 L. After that, she gets severe leg cramps, dizziness, nausea and other symptoms which makes it hard to proceed with dialysis. Also, her blood sugar drops to the lows. Therefore, we don't give her insulin before going to dialysis even if the blood glucose is in the 270's. With in a few minutes of dialysis, the blood sugar will automatically drop all the way to the 120's or so. The dialysis people say that she has lots of fluid in her body and their goal for every session is to get rid of atleast 3.5-4L. What should we do in this situation? She drinks very less than 2L of fluid between dialysis sessions, but still her body condition doesn't let to pull fluid off if it exceeds more than 2.5 L during dialysis. Any help will be greatly appreciated. I searched for many sites online and finally came here hoping that I would get an answer for this. Thanks for your time.

[obsidianom]

Go with the guidelines from Dr. Agar. Dont let them go faster than 5 to 10 ml/kg/hour . when removing fluid. That is the only safe area. 
If she weighs for example 60 kg, then the rate would be between  300 and 600 ml/hour. (.3 liter to .6 liter  per hour )
Most clinics go too fast and take off too much .

Read this from Dr. Agar
http://homedialysis.org/news-and-research/blog/44-volume-safe-dialysis-duration-kpi

[jo]

Thanks. But, at the clinic, they say that she has got lots of fluid in her and that they have to remove excess (their goal of 3.5 L per session) in order for her to feel better. Yes, she does weigh around 58 kg and she gains 2-3 kgs between sessions. As I said, she drinks less than 2 L of liquid between sessions. But still, we don't know the reason for her weight gain which makes them set a target of 3.5-4 L in every session. What would your advice be in this case?

[Michael Murphy]

When I started dialysis they were taking 4 to 5 liters off off me every session and had limited me to 40 oz of water a day.  When I showed up at the nephrologist office with bp of 75/45 they were not happy.  Two factors were established one I don't retain fluid so they removed the fluid restriction and they dialysis causes constipation.  So while they don't worry about fluid removal any more (they always take one kilo) my weight fluctuates based on how long since I visited the library for a long reading session.  Basically when I start to gain I  take a laxative and the issue resolved till the next time.

[obsidianom]

Thanks. But, at the clinic, they say that she has got lots of fluid in her and that they have to remove excess (their goal of 3.5 L per session) in order for her to feel better. Yes, she does weigh around 58 kg and she gains 2-3 kgs between sessions. As I said, she drinks less than 2 L of liquid between sessions. But still, we don't know the reason for her weight gain which makes them set a target of 3.5-4 L in every session. What would your advice be in this case?

If she gains only 2 to 3 kg then that should be her target . I dont understand why they want more. I would try to get them to just do 2.5 liters SLOWLY and see how she does. Do it as a "trial".

[jo]

Thanks for all your replies.

[PrimeTimer]

I agree with obsidianom. They need to pull the fluid off your mother slower and maybe not so much all in one session. My husband is diabetic and if we try to remove too much fluid during one session and his Systolic (the top number of his BP) drops to under 100, he starts feeling nauseated. So...he watches his fluid intake and we don't pull too much fluid off all at once if he is not very much over his dry weight. Fortunately, we've learned how to manage his dry weight and most of his dialysis treatments go smooth. Hope you are assigned a nurse or can talk to one about your mother's issues. I'm no doctor and maybe don't understand a whole lot about dialysis yet but in my opinion, putting a patient on the dialysis machine and running it until they puke, cramp or their BP drops too low is not right. Seems to me that if a patient needs a lot of fluid removed, the safest and most humane way is a little at a time while the person cuts back on how much fluid they drink each day until they are down to a healthier dry weight. Good luck. Please keep us posted if you can. Hang in there. There is a lot to read on this site and you will learn what you need to but it takes time. You're doing good just by coming here! 

[cattlekid]

I didn't have the diabetes issue to deal with, but often when I was on in-center dialysis, the staff would suggest that I needed to take off more than 2.5L.   After a few months, I had come to realize that 2.5L (my dry weight was 95.5 kilos) was the most I could possibly remove during a session without the potential of cramping, nausea and feeling like a limp dishrag for hours afterwards.  There were times that I would come in with an extra half-liter/liter on and they would want to try to remove it.  I would always put my foot down and tell them that they knew that anything over 2.5 would make me puke.  They didn't want to deal with it any more than I did.  After a couple of rounds of this, I finally asked my doctor what it would take to raise my dry weight a half a kilo.  He just looked at me funny and adjusted it on my chart.  Problem solved.

Honestly, this is one of the many reasons that I decided to go to home hemo.  I controlled my fluid removal and since I still had residual function and dialyzed 5x per week, there were many times I never removed any fluid other than what I needed to remove for rinseback.

[obsidianom]

I didn't have the diabetes issue to deal with, but often when I was on in-center dialysis, the staff would suggest that I needed to take off more than 2.5L.   After a few months, I had come to realize that 2.5L (my dry weight was 95.5 kilos) was the most I could possibly remove during a session without the potential of cramping, nausea and feeling like a limp dishrag for hours afterwards.  There were times that I would come in with an extra half-liter/liter on and they would want to try to remove it.  I would always put my foot down and tell them that they knew that anything over 2.5 would make me puke.  They didn't want to deal with it any more than I did.  After a couple of rounds of this, I finally asked my doctor what it would take to raise my dry weight a half a kilo.  He just looked at me funny and adjusted it on my chart.  Problem solved.

Honestly, this is one of the many reasons that I decided to go to home hemo.  I controlled my fluid removal and since I still had residual function and dialyzed 5x per week, there were many times I never removed any fluid other than what I needed to remove for rinseback.

DR. Agar writes about this issue all the time. The American way is to remove too much fluid too fast. It tends to stun the heart and make patients feel sick. My wifes nephrologist and I iscussed this yesterday and he is coming around to this way of thinking also. He sees the stunning of the heart as a big issue. 
5 to 10 ml/kg/hour is the fastest the fluid should come off with the lower number better.  At 100 kg that would be about .5 to 1 liter per hour with .5 liter the best . Going at .5 liter that would give only 2 liters in 4 hours. So you can see the stress going above 2.5 liters would cause the body.   

[Speedy1wrc]

Hemo will drop my blood sugars about 100 for  a full treatment. I am 77kg, so your mom will possibly see a bigger drop. Do you go with her to treatment? If so, the center should allow you to come in and check her blood sugar.

I am guessing that when her BP drops they are giving her saline? Depending on the date of drop and where it falls to, they may also be giving her "tonic". If her BP rebounds and ricochets it sounds possible.

Her nephrologist should review her flow sheets and can make a recommendation for a UF profile and/or also a sodium profile. For a smaller mass person trying to pull that may liters off is difficult and tends not to be enjoyable. The trouble is, the center has a set dry weight for her and if she comes in say 4 liters heavy, they will set the machine to do that. They will only do what the orders say. I tried while in center to manage my prescription and got all sorts of hate from the tech's. One of the first steps is to find out what her actual dry weight is. Through trial and error you should be able to bump it up or down depending on what the data dictates.

Keep us posted.

[jo]

Hi PrimeTimer: Thanks for your response. Doesn't matter whatever we say. When we go for dialysis, they decide they need to remove about 4.5 liters of fluid as they think that my mom has lots of fluid in her body. Like obsidianom suggested in the forum, when they took fluid off her very slowly (about 2.5 liters total for 4 hours) when she had a flu and was sick, she did fine at that time. I guess we have to meet with a neph and explain the neph about what's happening and ask him to look into the issue of removing 4.5 liters in every session.
Hi cattlekid: Yes, that's exactly what's been happening to my mom. We have to meet with a neph asap to discuss about this.
Hi obsidianom: You are right. She felt her heart stunned so many times and she will feel her heart beating faster for a few days. Since that happened, we told the clinic that we are not happy with removing excess fluid than normal, and we ask them to stop if cramping occurs or if she feel sicks after the 2.5L limit.
Hi Speedy1wrc: When the blood pressure drops, they make her lay flat instantly. After a few minutes, the blood pressure goes really high and they make her sit at that point. This is what happens during the whole session. When I asked the techs about tonic, no one had any idea about what tonic is. The problem is even if the blood pressure drops, they don't really care at the center. Instead, the techs will be snacking or chatting with other techs. I am a person who would never complain about anything whatever happens, and I hate complaining. But seeing my mom sick, I really can't help it. When the BP drops, we call the nurses and they get mad. There are always 1 or 2 bad apples among the good ones everywhere. Those bad apples even complained to their supervisors that we are bothering them and we were told not to be present inside the clinic until dialysis is done. We requested the supervisor to let us stay as we know that my mom would not be comfortable if no one is present as she had experienced lots of trouble since she started dialysis. What we were doing after that is we monitor her blood pressure and when it drops, we don't call anyone (as we only develop hatred when we do so) and make her lay flat. When the BP goes high, we make her sit. This way we constantly monitor her blood pressure throughout the 4 hour time frame and thus, they accomplish their set goal of about 4-4.5 liters. This is what's been happening all these days. I really don't know how to deal with this, but I feel like this is the life that God gave us and we just have to move on and on.
Thanks again for all of your responses.

[PrimeTimer]

Hi PrimeTimer: Thanks for your response. Doesn't matter whatever we say. When we go for dialysis, they decide they need to remove about 4.5 liters of fluid as they think that my mom has lots of fluid in her body. Like obsidianom suggested in the forum, when they took fluid off her very slowly (about 2.5 liters total for 4 hours) when she had a flu and was sick, she did fine at that time. I guess we have to meet with a neph and explain the neph about what's happening and ask him to look into the issue of removing 4.5 liters in every session.
Hi cattlekid: Yes, that's exactly what's been happening to my mom. We have to meet with a neph asap to discuss about this.
Hi obsidianom: You are right. She felt her heart stunned so many times and she will feel her heart beating faster for a few days. Since that happened, we told the clinic that we are not happy with removing excess fluid than normal, and we ask them to stop if cramping occurs or if she feel sicks after the 2.5L limit.
Hi Speedy1wrc: When the blood pressure drops, they make her lay flat instantly. After a few minutes, the blood pressure goes really high and they make her sit at that point. This is what happens during the whole session. When I asked the techs about tonic, no one had any idea about what tonic is. The problem is even if the blood pressure drops, they don't really care at the center. Instead, the techs will be snacking or chatting with other techs. I am a person who would never complain about anything whatever happens, and I hate complaining. But seeing my mom sick, I really can't help it. When the BP drops, we call the nurses and they get mad. There are always 1 or 2 bad apples among the good ones everywhere. Those bad apples even complained to their supervisors that we are bothering them and we were told not to be present inside the clinic until dialysis is done. We requested the supervisor to let us stay as we know that my mom would not be comfortable if no one is present as she had experienced lots of trouble since she started dialysis. What we were doing after that is we monitor her blood pressure and when it drops, we don't call anyone (as we only develop hatred when we do so) and make her lay flat. When the BP goes high, we make her sit. This way we constantly monitor her blood pressure throughout the 4 hour time frame and thus, they accomplish their set goal of about 4-4.5 liters. This is what's been happening all these days. I really don't know how to deal with this, but I feel like this is the life that God gave us and we just have to move on and on.
Thanks again for all of your responses.

jo: You're to be applauded for helping and monitoring your mother during her treatments (laying her flat/sitting her up when her BP goes wild). It seems to happen to a lot of dialysis patients. But it's still terrible for them to go thru it. I hope you are able to speak with her doctor about this and that they soon find out what her "dry weight" should be. Hopefully the doctor will understand the trauma your mother is going through and will tell them to remove fluid a little slower or a little less at a time until she can tolerate the treatments better and she gets closer to what her normal dry weight should be.

Meanwhile, you are doing great by being there for your mother and by learning all you can about dialysis. I agree, you do not want to create bad feelings or "hatred" as you say, at the center or make the techs mad. Hopefully you will find a way to communicate with them that will make them WANT to listen to you and your mother. I'm not saying to kiss up to them but, maybe throw them a bone once in a while or somehow let them know that all you really want to do is to be able to help THEM to help YOUR MOTHER. Maybe get your own clipboard and take it with you and start making your own logsheets of your mother's treatments as far as keeping track of her BP and what works and what doesn't and what makes her feel sick. Maybe they will start to understand that you just want to help your mother and want them to be YOUR PARTNER in all this. If your mother is limiting her fluid intake and the doctor wants her to, then that is good. Maybe keep a chart for it and take it with you to the doctor and to her treatments. If she isn't already, maybe someone can exercise a little with her too in-between treatments . Maybe she can go on short walks. This might help her blood pressure get better. I think it is very hard for a dialysis patient to feel up to exercising or do anything after treatments but maybe in-between she could slowly do small activities. My husband works hard to stay active and he works a fulltime job so I think that is why he is doing so well. He stays active every day no matter what.

I hope you will continue to let us know how things are going. Hopefully before much longer they won't need to remove so much fluid off of your mother. All this is so very hard to go through but remember, you are doing right by her and with your support, hopefully she will reach her target very soon! 

Oh, one more thing...I think Speedy1wrc is right...please re-read his post. Also, one way my husband knows that he is staying at his "dry weight" is by weighing himself every day and by checking his feet and ankles every day for signs of swelling. If he starts to have swelling that means he has too much fluid onboard.

[Speedy1wrc]

In my old center your legs went up at the very start. They didn't want to deal with the intervention needed if a patient crashed.

A high supine blood pressure vs a low sitting pressure may indicate the need to consult with a cardiologist in addition to the nephrologist. While there is and should be a difference, at least for a short while. The large of a swing seems a bit excessive.

Is she on BP medicine?

As for them not wanting you in with her, stand firm and do what is best for her.

If she gains 4k in between treatments, she is gaining 4k between treatments. The key is to determine is it fluid or mass. The removal rates are covered well in previous posts. But regardless of rate it would be desirable to keep the gains under whatever goal for her ability to withstand removal. The less gain the better. Four kilos between treatments is quite a bit. Everyone has different goals, but very typically 1.5 per day is bantied about for a reasonable gold. I try to limit myself to 1.2 per day. So the most for including a skip day I try to be less than 2-2.5k.

[cdwbrooklyn]

Tell the center do not take off too much weight. Our bodies need some water as long as your mother can breath and her lungs are not flooded. The techs have no clue what your body is going through. While they want to help, they are hurting your mother. Remember, you are paying them to help your mother and as a patient, your mother has the right to refuse anything she wishes. Let your mother tell the techs how much fluid she wants them to remove. Most techs are clueless.  She is feeling bad because they are removing too much fluid. We do gain weight as time goes by. 

[jo]

Thanks everybody. I will follow all of your advice. We just heard that my mom's catheter has been infected again which was placed 3 weeks ago. The first catheter worked fine for about 3 months until it got infected. So, they removed it and placed a 2nd one the very next day which was 3 weeks ago. Since the day the 2nd catheter was put in, my mom wasn't very comfortable with the surgery and had so much pain. She didn't even feel any pain except for a day or two when the first catheter was placed. They are giving antibiotics right now for the infection. What could be the cause of the infection again? Is it because of the surgery didn't go very well as she was feeling pain even after a week (or) due to the previous infection still present in her body? Please pray for my mom to get better and to feel better after dialysis. Thanks.