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View Diary: Playing God. A Human Being is Denied a Kidney Transplant. (42 comments)

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  •  Medi-Cal covers his dialysis (14+ / 0-)

    Unlike other organ transplants, being denied a kidney transplant if you are on dialysis is not life-threatening. I lived for over three years on dialysis. Not everyone on dialysis can get or even wants a kidney transplant. You can actually live well on dialysis, depending on the kind you do. Navarro may well be on peritoneal dialysis, since I caught a key phrase in your article excerpt: "daily dialysis". That's PD, which is the easuest and gentlest form of dialysis there is. People can and do work and/or go to school if they're on PD. Navarro can easily go for years on PD.

    The criteria by which he was evaluated at UCSF are the same as the criteria I had to meet at UW. I had to be able to demonstrate an ongoing ability to afford my medical care and anti-rejection drugs. My need for both is lifelong and the U wanted to ensure that I wiuld be able to guard and protect the gift that gave me my life back. Note that in my case the transplant was lifesaving because hemodialysis turned out to be extraordinarily bad for me; my exoerience is the exceotion and not the rule. Before receiving The Call, I had already spoken to my GP about using our state's Death With'Dignity option. But I don't say "lifesaving", I say "gave me my life back" and enabled me to live more like a normal person.

    Quite honestly, f I were to emigrate illegally to the country in the world with the best socialized medicine, where none of their citizens or legal immigrants goes without, and needed a kidney transplant or dialysis, that country would deport me and send me right back here, because while they can plan for the needs of their cutizens, legal immigrants, visitors, etc., they cannot and should not have to plan for life-sustaining treatment that requires a high ongoing expense for an undocumented person who entered the country by breaking the law. There's no way any country can plan for that sort of unexpected charity care, and if they did, they'd be flooded with the world's sickest of the sick until there remained no resources to care for their own legal citizens and immigrants.

    There are grim realities here that must be faced. One is that a kidney transplant at an equivalent university hospital cost $188,000 a year ago, not including all the billed time for specialists, clinic visits afterwards, and my ongoing prescriptuon refills. Another is that if Navarro had followed proper procedures to enter the country, his Medi-Cal, should he need it, would cover his anti-rejection drugs. See the previous paragraph about planning for a country's or a state's legal residents versus those for whom nothing can be planned because they remain unknown until there is an emergency. California, or Washington state for that matter, does not have an unlimited supply of money and must take care of its legal residents first.

    I sympathize with Navarro and his family, I really do. I've walked part of the path they're walking. In an ideal world, everyone would get all the care he or she needs. If there were some back door that could be created for Mr. Navarro to get the transplant and follow-up care and meds he will need for as long as the graft lasts, I'd pressure the state to open it for humanitarian reasons. And then there'd be another Mr. Navarro, and another, and another, until one day a young, poor American mother is pleading with you to save her toddler, who was born without kidneys and needs a transplant, and there's a match available (maybe she's the match), only because you've used up all your resources on folks for whom you couldn't plan, there is nothing left to help this tot for wgom plans could have been made had the resources not already been used.

    I hate hate hate coming off like this. I sound like a fracking Republican. But I live with the harsh medical realities of ESRD (end stage renal disease) daily, and this is what I see from the perspective of someone who's been through the system and discussed t with those whose job it is to provide the care and/or make the decisions.

    Organ donors save multiple lives! A donor's kidney gave me my life back on 02/18/11; he lives on in me and in others. Please talk with your family about your wish to donate and sign up to give others the gift of life.

    by Kitsap River on Tue Jan 31, 2012 at 07:15:14 PM PST

    •  Thank you, KR, I know you have actual experience (5+ / 0-)

      with this. Hope you continue to do well for a long, long time.

      If life gives you melons, you may be dyslexic.

      by glorificus on Tue Jan 31, 2012 at 07:28:19 PM PST

      [ Parent ]

    •  The article says (2+ / 0-)
      Recommended by:
      FogCityJohn, Terranova0
      But the soft-spoken metalworker has been growing sicker. Life expectancy for dialysis patients hovers around six years.

      and that his kidneys started to fail eight years ago.

      You said

      Unlike other organ transplants, being denied a kidney transplant if you are on dialysis is not life-threatening.
      •  Yes, I did. Here's why. (2+ / 0-)

        First off, Mr. Navarro is indeed on PD, as I recognize the cycler shown in the second picture. I had one next to my side of the bed for two and a half years, probably one identical to his. It uses no blood and no needles and is really pretty easy to set up, run, and clean up. Like most PD patients with a cycler, he almost certainly runs it while he's asleep. Set up (less than fifteen minutes on a bad day), connect up, go to sleep, and when you awaken, your cycler time is over. He may have to dô a fluid exchange at mid-day, which is easy and doesn't take more than twenty minutes. You can do it in a car. I have, on many occasions.

        Second, that statistical average includes all dialysis patients, most of whom are older, a lot sicker with more comorbidities, and in hemodialysis three times a week, barely getting enough dialysis to survive. PD helps you stay a lot healthier, and it's the easiest and most gentle method of all. He's chosen a good method. He's very much on the younger side of the spectrum of adult dialysis patients. I know patients, boththose who go to a center and those who dialyze at home, who have been living well with dialysis for as long as two decades. A lot of how healthy you stay has to do with how well you take care of yourself and mind what you're supposed to do with dialysis treatment, technique, diet and exercise, fluid restrictions, and caring for any other fluid restrictions you may have. He could very well go for seven or more years on PD, then switch to home hemidialysis and do that in his sleep, getting even better dialysis and clearances as good as those from a cadaver donor transplant like mine.

        You can travel with PD easily. I've done it at two NNs. You can live a rich and full life with dialysis. One guy I know, Bill Peckham, has even gone river rafting and dialyzed doing "home" hemodialysis during the trip. There are dialysis cruises for people on home dialysis. I went to school fulltime while on dialysis (had to give up because bronchitis laid me up for months and then I lost my funding). He can be a present, involved, loving father and husband on dialysis. I have had sex plenty of times while doing a dialysis run. (Only on PD, though.)

        Dialysis is not a death sentence. ESRD is fatal if not treated, but a transplant is only another form of treatment. And the six-year life expectancy includes a lot of people who are sick senior citizens getting barely-adequate dialysis in the statistic; in fact, that's most of the dialysis population. Mr. Navarro is an outlier and I am not his physician, but there's not necessarily any reason to think he might die soon if he keeps getting his dialysis.

        Organ donors save multiple lives! A donor's kidney gave me my life back on 02/18/11; he lives on in me and in others. Please talk with your family about your wish to donate and sign up to give others the gift of life.

        by Kitsap River on Wed Feb 01, 2012 at 12:07:30 AM PST

        [ Parent ]

      •  Typo. Should read... (2+ / 0-)

        "caring for any other medical conditions you may have", not "any other fluid restrictions". Fluid rextrictions on the brain is not ubcommon when thinking about dialysis. And with PD, he should have few to no dietary and fluid restrictions, except sodium.

        Organ donors save multiple lives! A donor's kidney gave me my life back on 02/18/11; he lives on in me and in others. Please talk with your family about your wish to donate and sign up to give others the gift of life.

        by Kitsap River on Wed Feb 01, 2012 at 12:21:34 AM PST

        [ Parent ]

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