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New to Dialysis: How can I get my life back?!?!

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  • New to Dialysis: How can I get my life back?!?!

    I have been seriously ill since 12/09... 1st with Autoimmune hepatitis, then avascular necrosis in R hip from taking prednisone that led to a hip replacement- then hepatic encephalopathy(coma) then liver transplant in 2012. Now I am in Kidney Failure, very anemic, require frequent transfusion and have reactions to procrit drugs and to top it off I'm on dialysis in -center 3x a week... I don't like the in-center tx's I would love to try PD but, becuase of my surgical hx. They say I'm not a good candidate. So now this leaves only home... started off with a fistula, but it would not develop, had a revision surgery to add/create a graft. Should get the ok to use next week. Anywhoo! This is my current situation... I have been unemployed since 2010 due to these back to back issues... I'm on disability. I would like to try to work again. They have these agencies that hire work from home customer service agents ie: The virtual agent... But anyone who is on dialysis knows you feel so drained and by the time you get over the hangover, you have a few hours and then its time to go back to dialysis.I was offered a position with one of these agencies and the training is like 6 weeks M-F 10 am- 2pm not long, but def possible if I didn't have in-center hemo.... How realistic am I to think that I can do this? Will home hemo free up my time? Do I have to have a care partner for home hemo ( husband works during day) Does anyone completely manages home hemo by themselves? Will I have the energy to work if I switch to HHD? I don't know... I'm fustrated, depressed, need to feel independent again. Any insight is appreciated


  • #2
    Hello amgaskin,

    You've been through quite a bit more medically than most folks who are active on these forums. You're desire to work is applaudable. While there are HD in-center patients that work, they are in a decided minority. The mostly inflexible scheduling of in-center dialysis makes it difficult to work a full time job. There are centers that offer nocturnal treatments that would accomodate individuals working days and of course individuals working 2nd and 3rd shift can be accomodated with first shift in center treatments. The hours of most in-center dialysis clinics is 6:00 am to 5:00 pm, which doesn't accomodate an individual who wishes to work first shift.

    There are numerous advantages to home hemodialysis, not the least of which is treatment scheduling flexibility. The modality requires 5 or 6 short daily treatments during the week, which do a much better job regulating blood toxins and fluid build up between treatments in contrast to the 3X weekly in center treatments. Because the home hemodialysis treatments are shorter, there is far less recovery time needed, if any at all. Diet and fluid intake still have to be managed on HHD but with less rigor than with in-center HD.

    Unfortunately the number of DaVita clinics that offer home hemodialysis is quite small. In the Milwaukee metro area, there is one facility that has two locations. At any given time, two to four individuals can be in HHD training at these facilities. You must have a care partner to both go through the 3 to 5 weeks of training as well as be present in your home during your treatments. You will not be accepted for the HHD training without a care partner.

    It could take months to get a scheduled time slot for HHD training. In my case, I visited my HHD clinic in November 2011 and maintained semi-regular contact, whilst monitoring my kidney function to determine the optimal time to begin training and in my case, starting hemodialysis. The expectation of a spring 2012 start moved to mid summer 2012, when I simply made the committment sometime in May to start the training and hemodialysis in July 2012. I was not sick at the time of my start, but my GFR was around 9 and my creatinine in the 6's. I had grown used to that level of blood toxicity and did not have fluid issues with my polycystic kidneys - still producing adequate amounts of urine. My 9 month old fistula appeared excellent visually but required a fistullogram and balloon venoplasy to remove an 80% narrowing in the anastomosis that was reducing blood flow, which was leading to chronic infiltrations.

    I supported the on again/off again 7 weeks of training with 1/4 days of vacation starting at 1:30 pm each week day for the 2:00 pm to 6:00 pm training and hemodialysis sessions. My care partner spouse and I went home just after Labor Day 2012 and we've been excelling at all aspects of HHD ever since.

    The HHD modality amounts to a 20 hour per week part time job that requires co-management of inventory and supplies, treatment schedule, monthly lab draws, IV delivery of Epogen and Heparin, and of course the safe conduction of your 5X or 6X weekly treatments utilizing proper aseptic technique.

    On the HHD modality, I have not only been able to continue my demanding full time office job but have been able to support short notice multinight business travel and even week long business travel with in-center treatments in the cities where I am conducting business. As of June 2013, I became qualified in the use of the NxStage System 1 for nocturnal hemodialysis treatments, owed to my participation in a 6 month FDA approval study for same. My treatment week includes a mix of 2 ea. nocturnal treatments of 7 to 9 hours each and 3 ea. short daily treatments of 2 to 3 hours each. My monthly lab work is exemplary, and I manage my anemia (Hemoglobin) with one 2000 IU dose of IV Epogen every other month, in contrast to 5000 IU 3X weekly when I started HHD training. I am on a single BP med, down from 3 ea., and while I follow the kidney diet, avoiding foods high in phosphorus and potassium, I can take my liberties while taking Calcium Acetate 667 mg (Phoslo generic) twice a day with meals.

    We've had our challenges with NxStage Medical's equipment reliability (24-7 phone support and 24 to 48 hour equipment replacement are excellent), development of buttonhole access (5 working sites developed) and other aspects of home treatment. I've treated in center and I wouldn't trade it for the treatment scheduling flexibility and empowerment I get with the HHD modality.
    Last edited by stumpr54; 04-21-2014, 09:08 AM.


    • #3
      This is definately some great info. I have already had a talk with the HHD nurse and she has agreed to train me without a care partner because my husband is working 2 jobs because I can't.... He will try to come once a week to learn the ins and outs of the nx stage machine. To help troubleshoot the alarms etc She feels confident that I can perform task on my own I am still a licensed nurse, I just need to get over sticking myself with 15 gauge needles- lol. Today was my 3rd stick with the 17 gauge. I will tell them to go to next size on Friday. Also the lidocaine cream actually worked today... I guess I applied it the right way today. :-) It hurts more coming out!


      • #4
        Hello amagaskin,

        You will grow comfortable with handling the needles and find that any discomfort that you are currently experiencing will diminish greatly when you are the one placing the needles, e.g no surprises and the ability to make slight changes based on what you are feeling. The mental rush the comes from the empowerment of cannulating your own needles more than makes up for any physical discomfort. Certainly, the needles seem big when you start seeing and using them, but that perspective will change, and they will soon seem much smaller. After nearly 20 months of HHD treatments, the 15 ga needles seem too small to do the job that they do - remove and return my blood at a rate of 550 ml/min.

        Presuming that you are developing button hole sites in you fistula, each successive stick with a sharp needle does less and less cutting and should stick and advance with less effort - it's like reaming a pre-drilled hole. Once established after 5 to 8 sticks with a 15 gage sharp dialysis needle, the button hole should accept a blunt needle. You'll feel even more confident handling a blunt needle, as the tips, while still pointed, are virtually incapable of piercing skin or vessel, all they can do is push and deform the tissue/vessel. The tip and bevel serve more as a guide and a "ram" that is augered via twisting the needle tube through the button hole tract and then past the flap that has been cut in the fistula. Once you see a blood flash and pulse in the clear needle tube, you are in the fistula and will be able to treat.

        Once you become adept in handling blunts, you can try developing new button hole sites on your own with sharp needles. At this point you will go straight to a 15 ga sharp and skip the 17 and 16 gage needles. If your fistula is properly developed and you don't have any odd shapes to deal with, placing a sharp needle does require a different technique - hold the needle by the wings to control angle, depth and advance.

        I had always planned on button hole access and placing my own needles, so I made the committment to do so long before I started training for HHD. My fistula and the associated run off vessels are quite shallow and easy to access, e.g. very little tissue between skin and fistula. I never used any topical anesthetic during training or the development of additional sites. As a result, I've developed 5 working buttonholes which replaced the original two that were developed when I started HHD - both had become unusable owed to fistula changes or site inflammation/infection.

        Needle removal is quite a skill that you will develop as well - determining precisely when the needle is withdrawn far enough to apply pressure to the gauze pad to stop the site bleeding, all without pressing on the needle before it's out of the fistula and minimizing any bleeding at the site. I withdraw one of the needles and my care partner withdraws the second needle while I hold pressure on the first needle. 'This way I can hold pressure on both sites and cut down the overall pressure hold time. I was just in for my monthly HHD clinic and unwittingly entertained two new temporary social workers who came to introduce themselves at the moment that I was pulling the needle just used for my monthly dose of IV Iron. This is the only med that is not delivered in your home by you. You will learn to draw your own labs and give yourself IV Epogen for hemoglobin management and IV Heparin if needed to reduce/prevent clotting.

        The role your husband will play could be very much like that of my care partner. I set up the NxStage System1 Cycler for a treatment and also set up and run the batches of dialysate in the Pureflow SL. I arrange all my treatment supplies, place needles, hook up the lines and make any adjustments to the cycler at the start and during a treatment. When we first started, she was there to provide assistance with alarms and other issues that may arrise at the start of treatment. It took several weeks before I was comfortable to "fly solo" through the start of the treatment. As mentioned earlier, she joins me for the end of treatment by pulling the second needle and then while I am holding pressure, strips the cycler, cleans the surfaces with chlorine wipes, disposes of the cartridge and will pull the spent dialysate SAK from the PureflowSL. She also manages the inventory of supplies from NxStage and from my HHD clinic.

        We've got a great division of labor and through lots of weekly practice, we've got our HHD treatment and support roles down. In contrast to trying to cook a meal as a team and wonder who's going to do what and when and then get in eachother's way trying to do it, our HHD routine is as well choreographed and executed as that of an olympic ice dancing couple, which is what we would expect considering the amount of "practice" time we put in.


        • #5
          Actually, she said that she has a graft, which means she's using 'ladder technique' with sharps....


          • #6
            Nice catch. Since the graft is not tissue, it cannot "heal", and it would seem that any attempt at buttonholes would damage the "non healing" graft material to the point of eventually producing leak sites or permanent holes in the graft. What is a typical length for a graft? Are grafts generally straight lengths or are they "U''s" or other curved shapes?

            Are there same site stick time limitations with a graft? Or can a graft be stuck only once in one place? If this were the case, it would seem that one would eventually run out of sites to stick a graft even with the ladder technique. I would think that the graft stick site would "plug" with a clot similar to a fistula at the end of treatment, and if that site were stuck again, the plug/clot would merely be pushed out of the way to access the blood in the graft. While this mechanism is not the same as the flap in a fistula used for a buttonhole, would it be close enough in function to act/serve as a buttonhole?

            I am aware that there is an increased risk of infection/rejection and clotting with a venous graft owed to it being a material that is foreign to the body and perhaps because of differences in blood flow characteristics in comparison to a living vessel. I believe that venous grafts also have limited useful lives, but do not know what factors influence that useful life.

            Any answers or clarification would be most appreciated.


            • #7
              Well, my mother's graft was of the typical "U shape", and as typical with grafts, you should NOT stick yourself in the exact same place twice. And, as a result, most grafts eventually need to be replaced, although my mom's graft served her well over about 7 years total of dialysis, about half of that being 3x/week, and the rest at 2x/week. Yes, I would think that the limitations on a graft would make it a bit more problematic for HHD, since the benefits are at least partly due to buttonhole technique.