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  1. #11
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    Such great news! Keep us posted!

  2. #12
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    Nov 2013
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    87
    Right now I am in a precarious position when it comes to applying for disability. I have just signed on to the paired exchange list which means I likely will get a new kidney this calendar year. And disability normally goes away 12 months after the date of the transplant. So I could be without a job at that time and not have insurance (I know I would qualify for Medicare, but even that costs $105 a month and then only covers 80% anyway) so I am toughing it out.

  3. #13
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    Apr 2012
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    Unfortunately, I wasn't able to "work at the level they expected", and was let go after only 6 weeks. Still broke from my long period of un/under employment, so I can't afford COBRA. GFR is now down to 5, and I've been down to the local DSS office, and registered for MedicAid, to hold me over at least until I start HD, and get on MediCare. Disability SHOULD be nearly automatic, but even at almost $400/week, that doesn't amount to much. Unfortunately, it's better than ANY offers I've had recently (which are invariably the type where you are on your feet 8-10 hours a day, and have to be able to lift 75 lbs regularly..).

    At this point, I can only hope that going onto dialysis right now, while indigent, isn't going to make me bankrupt too quickly. With any luck, I hope to be able to get back at least SOME of the energy that I've been lacking recently, and perhaps add some muscle mass back. THEN, maybe I'll be able to get enough work to get myself out from the disability hole....

  4. #14
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    Jun 2012
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    Hello dac0214,

    I admire your "warrior" approach - endeavoring to persevere work and daily life with a GFR of 5. I have had the energy needed to sustain active play and work lives only through an HHD modality, which delivers upwards of 23 hours of dialysis weekly through combined nocturnal and daily treatments. I was still physically healthy at a GFR of 9 when I started HHD training. I was able to support HHD training with partial days of vacation, effectively not missing a step.

    The path you have taken by circumstance has been a very difficult one marked by a domino effect of economic hardship and declining health. You've always known your options, and seem to have chosen wisely. I am discouraged that it has come to this - up against a wall of despair. I'm confident that dialysis will improve your health and provide the drive and capabilities needed for gainful employment. I'm concerned that the toll yet to be taken, may drag you from the workforce permanently, like it has so many other ESRD patients.

    Not that it can offer any answers to your immediate challenges, I suggest taking the roughly 30 minutes to view a DaVita Google + Hangout that I participated in during mid February, with the topic, "Working On Dialysis". It may provide you will some answers regarding the near future. Here's the Google+ link: https://plus.google.com/events/ch57r...f17fl151a31mk8

  5. #15
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    Apr 2012
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    392
    Thanks for your concern. Frankly, if I had the energy, I just might "go postal", so maybe it's best that I don't. My last bloodwork is showing that I am VERY anemic (hematocrit levels were very low), which probably explains why I have almost no energy, even after sleeping 10 hours a night. For somebody who used to cycle centuries and cross-country ski all winter long, it's frustrating to get to the point where just walking to the supermarket gets you winded. I used to be a muscular 235 lbs, and today, I'm less than 160 lbs. In the last year, I've only cycled further than 1 mile twice, and skied only once, for 1/2 an hour, which left me exhausted.

    I've talked with my nephrologist, and we both agree that I need to start dialysis in the next couple of weeks. As I mentioned, I am now on MedicAid, and will be filling out the paperwork for SSI disability just as soon as I start dialysis. Hopefully, I'll either be able to add enough part-time work to supplement my SSI to be able to survive. Maybe I'll even get back to full-time work? I doubt I'll ever be back into the sort of manual labor I used to do when younger, but I hope to at least manage to build back some of the muscle that I've lost.

    From what I've learned about SSI is this: As long as you don't make more than $200 and something a week, you can work part-time while receiving SSI. Every $2 you earn outside will result in $1 less SSI, so there is incentive to work at least some, while on SSI.

    BTW, I was wondering how to handle my unemployment during the transition period between unemployment insurance and SSI insurance? Can I legally say that I was "available for work" on a day that I take dialysis, provided that I'm not admitted to the hospital? Will SSI take over the day that UI ends, or will I get "hung out to dry" for days or weeks at a time? Also, between Medicare and MedicAid, just how much money is this likely to cost me?
    Last edited by dac0214; 03-30-2015 at 11:05 AM.

  6. #16
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    Jul 2012
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    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.

  7. #17
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    Jun 2012
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    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.

  8. #18
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    Apr 2012
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    392
    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.

  9. #19
    Senior Member
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    Jun 2012
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    341
    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.

  10. #20
    Senior Member
    Join Date
    Jul 2012
    Posts
    298
    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.

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