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  • #16
    It is great that you are both there to support each other. As for the back and stomach cramps -- have you tried Quellitall? Works better than quinine did when it was still available. You don't need a prescription either.


    • #17

      I found this great section of the DaVita website that might help relieve some stress. Check it out!


      • #18
        Im in the same boat as the rest of you; husband has been doing hhd for 2 full years now. Five days/nights a week. Has a match for a kidney but needs to lose weight. My complaint is that we have problems sometimes when he's on the machine: air in the lines, alarms going off, etc. I'm at the end of my rope with it all. Although we had training at the beginning of this, I'm not a nurse and I don't handle it well. He seems to be content to do the dialysis (although I'm sure that's not really the case) and doesn't really work at all to get the weight off to get the kidney transplant. My daughter is the donor and she's starting to have second thoughts about it because he doesn't seem to want to take care of himself enough to take care of the new kidney! We're both retired and were looking forward to enjoying ourselves while we're still young but now I'm starting to wonder how badly he really wants to enjoy life or is he just content to sit and dream about it while he's doing dialysis. He also watches tv for four hours while he's on the machine, while I clean or do laundry or whatever needs to be done around the house. Family and friends have told him if it was them and they had a chance to get a kidney and start over they'd do anything they could to lose weight. Not him. He just makes excuses.


        • #19
          I took care of my husband for six years, he had COPD and congestive heart failure. He had been sort of a tough guy most of his life, what many called a mans, man. His last two months he couldn't even turn over in bed by himself, he was totally dependent. He got pretty crabby and watching him slip away day by day was the hardest thing I've ever had to do. One of my fondest memories was; we were sharing a dish of ice cream, he couldn't feed himself by then, and we were chatting. I told him that I hated what was happening to him and that if we wanted to go I would understand and that I would be ok. He said that he knew I would be ok but he did not want to leave me. Can you believe that he still loved me so much that he would rather suffer than leave me. Talk to your loved ones, tell them how you feel, be honest with them. Tell them that you can't do it all all alone. I'm now a on dialysis and start training for home hemo on December first, my daughter and granddaughter are training as mt care partners. We plan on training my grandson and son in law as well. I live in my granddaughters basement apartment but I'm completely independent. Do my own cleaning, cooking, laundry, bills, shopping and driving. It is currently a 45 mile commute one way to dialysis. I spent from the middle of January to the middle of march in the hospital and almost died three times, so we can get better and be involved in our own care. Good luck to all of you and I will keep you in my prayers.


          • #20
            It doesn't have to be that way as evidenced in my August 2014 post entitled: HHD Patient & Care Partner Equitable Division of Labor

            It helps immensely if the patient is a dogged "do-it-your-selfer" and very task oriented. That's my gig. It helps even more if your care partner is a big "do-it-your-selfer" and equally task oriented. We've been married 36 years (I'm 60, she's 58) and doing HHD from the beginning - just over two years ago. We've had no difficulties with our "division of labor".

            For the scores of treatments I perform that go without a hitch, there's always the occassional one that does require her assistance for some aspect. I also involve her more heavily when I'm developing a new buttonhole site. Since I've developed 8 new sites in the past two years, her assistance has been utilized with some regularity.

            I perform all of the NxStage System 1 cycler set up and connections/disconnections, make the batches of dialysate with the PureflowSL, and do the inventory restocking in our dialysis room. My care partner will manage the NxStage inventory as well as the supplies from my HHD clinic. My care partner set up individual storage baskets and other containers for supplies in the dialsyis room as well as our basement storage of bulk supplies and NxStage product. We've got a solid stock rotation process using visual markings or physical order/location. Most of this comes naturally to us and even moreso to me as a process improvement professional for over 30 years with a keen eye on the reduction or eradication of waste and variation in all processes.

            When traveling with the NxStage System1 and ancillary equipment, we split up the aggregation of needed supplies and equipment, making sure nothing is left behind. Much of what we require is already organized for easy packing. Nothing like good planning and repetition to support the desired results.

            My care partner's big role in our 5X weekly treatments comes at the end of treatment. This is after I have returned my blood and clamped off and disconnected from the cartridge blood lines. I will pull the first needle and hold pressure, then she pulls the second needle so I can hold pressure on both sites simultaneously. During the 15 minute dual site pressure holds, my care partner strips the cycler and disposes of the spent cartridge and saline bag and wipes down the cycler and Pureflow with a Chlorox wipe. If a new batch of dialysate needs to be set up, she will remove the expended SAK, prep it for drainage and recycling (plastic) and set a new SAK into the Pureflow tub. After completing my pressure hold, I will then load and connect the SAK lines and begin the batch or wait until that evening or next morning to start the new batch of dialysate.


            • #21
              I am so frustrated - My husband has been on dialysis for 5 years (peritoneal, clinic hemo and now transitioning to home hemo). We are in our mid-thirties and have a young son. I'm so darn tired, and probably selfish too. We both work full time.....and now I will be serving as his care-giver 5-6 nights a week, work and take care of our child. No one gets it- I am loosing my complete freedom. Currently, when he goes to the clinic at night 3xweek, they serve as his caregiver and I spend time with our son, running errands, normal wife/mother duties. Now that he will be doing HHD, I'm responsible for his care. Yes, the HHD is suppose to be gentler, extend his life expectancy, and make him feel better. If I dare complain to anyone, they don't get it, think I'm selfish, don't see what I am giving up, or just feel bad for him for being hooked up every night. I am beginning to feel resentful, angry, frustrated.....every emotion in the books! Please tell me I'm not it going to get better?