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  • #16
    Some updates ... because of the way my husband feels after diaylsis ... he had started AMA off the machine when he started feeling better. So doctor is now threatening to not let him get on home diaylsis,
    BUT ... I think we are making some progress on what is causing him to feel so bad. we are waiting on the blood tests results ... but we saw a Neurolgist Monday ... and she thinks that they may be pulling too many minerals or electroliytes off him during diaylsis. She gave him some medicine to help with his burn feet and hands ... and that has made such a big difference !!! Wednesday was the first time that he felt human after diaylsis ... for the last year and a half !!! I could actually be around him without getting mu head bite off !!! So keep us in your thoughts that the Neurolgist finds out the problem !!!

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    • #17
      It appears there's a huge disconnect between all the parties in this. Might I suggest you get hold of the ESRDNetwork and ask them to help you with resolving this problem. The ESRD Network is empowered by CMS/Medicare to act on behalf of patients. You can file a complaint and they will help. There are various network offices depending on your location. Find the office location and phone number at www.ESRDNetworks.org.

      From their website home page: "The Forum of ESRD (End-stage Renal Disease) Networks advocates for the organizations that monitor the quality of chronic kidney disease, dialysis and kidney transplant care in the United States."

      I hope you get this resolved. Your husband shouldn't have to suffer more than he already is. And thank you for being his caregiver.

      Devon
      Fistula - March 2008
      Began Dialysis - August 2008
      Fistula Revision - Feb 2011

      Dialysis Patient Citizens, Patient Ambassador
      NW14 ESRD Network, Patient Advisory Committee Member
      CDC Infections Control Discussion Panel Member
      National Kidney Foundation Peer-to-Peer Mentor

      Blog: www.DevonTexas.com

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      • #18
        My Mom has terrible leg cramps during dialysis when they are taking water off. They used to take water off occasionally, now it's eveery time she goes. The pain is so bad she talks about not going anymore. She has been having very low blood pressure after dialysis also. Her dialysis is for 2 hours & 15 minutes. Does anyone know why she is having such bad leg cramps?

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        • #19
          Mab,I too have experienced the severe cramping. I am relatively small and do not over drink being on peritoneal dialysis for over 11+ years. Dialysis is a deicate process. Wnen the machines run more slowly the patient has to be on the machine longer and there is a danger of clotting. I do homehemodialysis now and my care partners(my husband and son) are able to adjust speed and back off if I start to cramp. This type of diaysis is ideal as you don't have different techs all the time. You are in the comfort of your own home, can dialize when you and your care giver want to during the day not someoneelse's schedule. It takes all in all about 5 hours start to finish. There is training which must take place,. Ask at your dialysis center ifit is an option for you. It is gentler because you are doing it more times during the week. Hope this will help you not have to suffer. God Bless, Hoofpkr

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          • #20
            Thank you so much. Home dialysis is not an option for my Mom. She is almost blind also. We all tried to talk her into it years ago but she was afraid. She even went to a ladies house that does it at home & watched her going through the process, but she didn't want any part of it. She is 80 years old. It seems like every day after dialysis she feels awful. Her blood pressure is also low after dialysis now. These are new problems for her. Thank you so much for your response.

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            • #21
              Just wanted to say Goodbye to everyone. My husband never got to try the PD diaylsis. He started having some severe stomach cramps. His regular doctor said that they were nothing serious and gave him some pills for irritable bowel syndrome. Five days later he was dead. Acording to the coroner is was from intestinal bleeding. We have no idea what caused this since we did not have the money for an autopsy.
              I do want to spread the word to everyone ... beware the drug Neurtoin. One of his doctors gave it to him for his heuropithy in his hands and feet. It worked great at first ... but then he started having the side effects. Some of them are cramping ... parkinson's like shaking of parts of the body ... and many many more that I won't list here. Please vereyone remember ... it does do some good to call the 800 number listed at each clinic ... and do not let them get away with some of the **** that they do. They are working for you ... supposed to be taking care of you. But in the time my husband was on hemo diaylsis ... we have seen so many infractions ... and many many lazy techs that are only there to put in their time ... and don't give a sit abouth their patients. Stand up for yourselfs ... if the tech that is trying to stick you and can not ... you have the right to tell her to stop and demand that someone else do it. This is your life that they are dealing with and you have a say on the kind of treatment that you receive.
              Last edited by mab; 10-31-2012, 04:50 PM.

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              • #22
                Mab, the advice you have receved is good. The slower speed can make a big difference. You may need to be on the machine a little longer,
                so check with your doctor. If you have a person who would be willing to be trained with you, you could switch to home hemo. You might end up feeling better and it is less stressful..It does take a commitment of time, yet you determine the time of day with your care partner.
                Best wishes, and remember Christ has your best interest for you. He will never leave you or forsake you.
                Hoofpkr

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                • #23
                  i think your my new friend. im on 12 years now and the past 3 years i have learned i had to take control of my dialysis treatments and checking my labs and taking all my pills. the techs were killing me on the machine. my blood pressure was being jacked up to over 230/120 . the machine would beep and they come and turn it off. i was in pain and was getting sick. many other problems. started going to see a therpist and she gave me some great ideas. like making cards to show the techs on how i wanted the machine to be set up. my temp put down, my speed at 300 and doing 5 hours instead of 6. plus i make sure i can see the front of the machine so i can keep a eye out for my bp. now i have no problems. patients need to know , they have the control..

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                  • #24
                    Have him try Quellitall for the cramping. Seems to work better than quinine and you don't need a prescription.

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                    • #25
                      Write down Flo rate and communicate w/ Dr, clinic nurse mgr and techs. They have to listen & counsel on what is best!

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                      • #26
                        When I was on days I would go home and sleep for 3 hours and then feel weak with no enthuasium to do anything until the next day.

                        On Nocturnal I come home at 4:30am and sleep until 7:30am and get up feeling fine. I still don't think I could work full time. I'm on a work disability.

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                        • #27
                          Dear Friend,
                          I am sorry your poor husband is having difficulty with his treatments. It can be trying and in center is hard on everyone. Does he have some water or ice chips during treatment? That may help some. Try to have him stay close to his dry weight so they will not have to pull so much so fast. Iknow the centers have their protocol but please voice your concerns and see if they can work with you. Dialysis is cleaning your blood so you want to feel better not wiped out. Help him keep his mind active with something to look forward to after Dialysis. Read encouraging words to him from the Bible before he goes. You will both be encouraged by the Holiness of God. Hoofpkr

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                          • #28
                            MAB
                            Better late than never I guess. (Your post is 2 years old; if you haven't resolved your situation yet, don't give up). As you have discovered, not all tech's (or Dr's) are created equal. If you can find a good Nurse/Trainer, look into home hemo. Dialysis at home gives you much m9ore control and understanding of what happens during treatment, and is much easier on your body. I know of one nurse/tech that had no idea of how to set the machine (or how to teach the patient) to remove the correct amount of fluid. Luckily I had a very capable, knowledgeable, patient nurse/trainer who was also an excellent instructor.

                            Good Luck
                            Radioman

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                            • #29
                              I know the feeling sometimes I do ok and other times I feel bad I am really little and can't not take off to much if they are tying to take off to much in 3 hrs givin his time maybe he should come back for an extra treatment and to a puff get the fluid off and he will feel better have him to a puff treatment that is where they take off just fluid

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                              • #30
                                I am the same way as your Mom my hrs are 2 1/2 I get cramps everywhere if I move my blood pressure goes way down towards the end make sure no sodium intake,salt in diet might if she takes blood pressure meds to take after treatment I know how she feels been off and on dialysis for 20 years I am tired of it but I drag myself and go they might be taking off to much in those 2 hrs 2.2 or 2 and if she is way up over her dry weight have a extra treatment of a puff where they just take fluid off

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