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  1. #11
    Senior Member
    Join Date
    May 2014
    Posts
    172
    Such great news! Keep us posted!

  2. #12
    Member
    Join Date
    Nov 2013
    Posts
    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
    Senior Member
    Join Date
    Apr 2012
    Posts
    366
    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
    Senior Member
    Join Date
    Jun 2012
    Posts
    330
    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
    Senior Member
    Join Date
    Apr 2012
    Posts
    366
    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
    Senior Member
    Join Date
    Jul 2012
    Posts
    288
    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.

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