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  • #16
    I don't know abut SSI but with Medicare per year, I only have to pay out $2.000 medical cost and then I pay nothing the rest of the year. Example: Doctor bill for dialysis visits is no more than 12 dollars a month. Right now dialysis for the facility is about $120.00 a month out of pocket. When I meet the out of pocket of 2,000, I no longer have any bills for dialysis. I have a $20 co pay for any doctor visits but when I hit that $2,000, I don't even have to pay for that. I don't know if that helps but it all depends on your insurance plan. As Stumpr54 indicated, you will have more energy and as long as your legs don't have problems you should be able to do much more. I deal with needing a knee replacement but still go to the Y for water walking and even walking on a water treadmill. Keeping active is very important.


    • #17
      I'm surprised that your nephrologist did not give you IV Epogen for the anemia. I was told before I started HHD training, and with it hemodialysis, that if my hemoglobin got below 9.0, I would receive IV Epogen. As it turned out, I reached that level at the time that I started HHD training, and began receiving 5000 IU Epogen 3X weekly during training. The dosing tapered off as I completed training, and I eventually got down to 2000 IU monthly, which wasn't quite enough to keep my hemoglobin between 11.0 and 12.0. My current dosing at 2000 IU every 3 weeks has been doing the trick. I would suspect as a fellow PKD patient, you have/will have residual kidney function that will "kick in" once you start "detoxing" your blood with dialysis.

      As memory serves, you've had a fistula for a while. The vessel's maturity should help prevent infiltrations. If that proves not to be the case, a fistulogram is a great next step - to assess adequate flow and resolve any vessel narrowing. Although it would prove quite difficult to get the in-center staff to do it. cannulating a sharp just to the point where a blood flash is achieved and then removing the needle and holding pressure just long enough to stop the bleeding followed by the cannulation of a "wet" (saline loaded syringe and needle tube) blunt dialysis needle, instead of trying to advance the sharp needle with the risk of infiltration, may be worth doing, especially if you do experience period infiltrations and are unable to treat as a result. The fistula can be strengthened through specific exercises, but nothing strengthens it like the blood flow experienced during hemodialysis. It acts like an excercised muscle, getting larger and tougher the more it is "worked". It's one of the reasons that starting hemodialyis with a fistula can be a challenging and frustrating endeavor for patient and staff.

      Those are some great insurance questions for which I don't have answers. All sorts of folks take in-center dialysis and work on the same day. You should be considered "available for work" on the days that you treat. I would expect that you could continue to collect unemployment until SSI begins, dependent on the number of weeks you are eligible to receive. When you receive that first SSI check, you will have to discontinue the unemployment claim.


      • #18
        OK, here's the deal: I start in-center dialysis this Friday, and my nephrologist will be there for the first session. He's already prescribing deadening-cream for me, and I will meet with a social worker before he arrives. I will discuss the implementation of buttonhole access when I arrive.


        • #19
          Hello dac0214,

          That sounds like a great plan and solid start. I cannot advocate strongly enough the value of learning how to place your own needles, and button holes are the best way to achieve this. While use of button hole access is a practice that is mostly exclusive to home hemodialysis patients, there are those who treat in-center that perform the task. Button hole sites help preserve your access through the use of established sites rather than an endless ladder of sticks up and down the fistula. Button hole only fistulas look far more uniform and less abused than those stuck repeatedly at different points.

          Before I started HHD training, I never watched the needle stick of the flebotomist or nurse. I began to watch all the sticks during my HHD training to help overcome any fear and to observe technique - all needed to be able to stick myself. I can assure you that there is a huge difference between someone else sticking you versus you doing the sticking. When you stick, there is no surprise, no shock as you manage your expectations.

          I've long since lost any real sensation beyond that of pressure during needle placement, whether with a sharp or blunt dialysis needle that I place. This is because I have come to know what to expect. I did not reach this point overnight, but through repetition and experience. If you have to grit your teeth the first few sticks - while you watch - do it. Think about the value of the therapy and how it will help restore your energy, and that it would not be possible without those needles - a small price to pay in momentary discomfort for the overall value gained.

          As an engineer, you can appreciate the physics of dialysis, with its closed circuit feedback loops, fluid flows and pressures, osmotic filtration, and so on. I have come to accept it as the only way that I can continue to support an active work and play life. Had I not elected dialysis, I would have expired over two years ago.

          There are DaVita dialysis centers that offer "self care", which is essentially you doing nearly everything you would do in a home hemodialysis setting, but in-center, e.g. set up the dialysis machine, lay out supplies, cannulate your access, connect lines, monitor your treatment, etc.

          I have not forgotten that your personal circumstances will not support HHD. In the event that those circumstances change, you will be well on your way with the needed capabilities to support HHD given your experiences in-center.

          I wish you success in this endeavor and expect regular status reports on your experiences and progress.


          • #20
            I do buttonholes in center and when I go on vacation at other dialysis centers. I can do this as fast or faster than some of the techs and they seem to be impressed that I don't hesitate or shake. I don't use any cream either. I ask them to put the tape on after the needles are in. I have only been to one of three dialysis center on vacation that does not want buttonholes but they let me do it because I do it at my home center. Taking charge of yourself is important besides being positive. I do a lot of reading at the center on a Kindle and free books for the library. Sometimes I am so involved in the reading that a tech will ask me where I am and I will answer in what State the story is taking place. I really pretend I am not there but in the story. It sure does help the time to go by. Good luck tomorrow. I will remember you now and tomorrow in my prayers. Take care.


            • #21
              Check out my posts about "Dialysis and Your Job" and "Dialysis and the EEOC". I went through a similar experience. I was 59 and laid off before I could take my job's disability benefit. I'm on social security disability now. See my blog at
              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



              • #22
                Well, as of Saturday, I will be receiving SSDI, as well as a paid-for Part D policy (from the gov't), a paid-for medigap policy (from the Kidney Fund), etc. I did some calculations the other day, between all the 'low-income' reductions in cost for insurance, etc., and my student loans going into deferment or even cancellation (due to being 'disabled'), considering the amount these programs pay, along with my SSDI montly payments, and figured out how much per-hour of a regular working week it would pay me. Turns out, just for remaining completely 'disabled' and not working at all, I would make about $15.75/hour. And that doesn't even consider the tax-advantages to SSDI payments!

                As much as I'd LIKE to work, the local economy is in terrible shape, and a lot of employers get people with skill sets similar to min to work for as little as $14-15/hour. Why would I commute with my car to get to a job that would pay me LESS than I'd make just sitting at home? OK, dental insurance might be nice, and I suppose my SS retirement amount would only rise, but then, considering all the issues with getting off on time for dialysis, etc, I'd really have to ask for no LESS than $17.50/hour to be worth the trouble. I think there MAY be a few of those around, but not many. I may just have to settle for occasional part-time employment for extra cash....

                I'm seriously considering just saying "screw it!" to the whole idea of going back to work. I'm certainly not going to settle for less than I'm currently guaranteed.
                Last edited by dac0214; 07-31-2015, 07:23 AM.


                • #23
                  Hi dac0214, when I went on social security disability due to dialysis I also ran the numbers and came to the same conclusion as you did. I decided to just work a better budget and devote my time and effort to keeping as healthy as possible. dialysis is my full time job now. and I'm ok with that.


                  • #24
                    I've got a great job that compensates me generously and provides an excellent benefits package. I made the decision when I started HHD training over three years ago that I would continue working and not join the ranks of "disability nation."

                    A few weeks back, an issue arose in the office that had me jumping on the company's disability provider website and initiating a disability claim. After having consults with HR, my new manager and manager's manager I chose to withdraw the claim.

                    During those two or three tense days, I had discussions with my nephrologist and social worker. When I explained my disability benefits - short term, mid term and long term to my social worker, she laughed and briefly questioned my decision to go on working, especially since the long term disability payments would be tax free and represent something close to 90% of my current after tax base compensation as the annual bonus is included in the calculation for disability compensation. She of course realized that I would go nuts without enough to fill my days - highly task oriented.

                    A colleague's last day is today - retiring at 69 years of age. I had considered working until 68 and now I may delay another year just to match his performance. After 3 years of HHD I've got no limitations other than the time I have to devote each week to performing 4 or 5 treatments, limiting my work week treatments to no more than 2 ea. daily, and up to 3 ea nocturnal. My care partner/spouse and I have the routine quite dialed in, along with a well functioning AVF, 5 buttonhole sites, periodic fistulogram "tune ups" and no other health issues, I don't see anything in my way toward that destination.


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