Bombero1956
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Tue Oct-25-11 01:15 PM
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My daughter was finally told what sickness she has |
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She first became sick at age 7 and over the years her kidneys eventually failed causing her to have dialysis 3 times a week. Last year at age 30 she got a donor kidney transplanted. Ever since then she has had to go in for biopsies to monitor her kidney function and to check for signs of rejection. Today she was told that her transplanted kidney shows signs of failure. They told her she has Dense Deposit Disease/Membranoproliferative Glomerulonephritis Type II. They told her it strikes 1 child in 2-3 million and treatment will cost $200,000 per month or she can live the rest of her life getting transplants when her kidneys fail. They also told her that her eyesight will fail when she gets older. Some future
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tosh
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Tue Oct-25-11 01:18 PM
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Bombero1956
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Tue Oct-25-11 01:22 PM
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I have no idea what she will do to stay healthy. Big Pharm sure is raking in the dough with that drug.
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Mnemosyne
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Tue Oct-25-11 01:23 PM
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3. I am so sorry to hear this, Bombero. |
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I'm betting insurance won't like covering treatment, if she is fortunate enough to even have any.
:hug:
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MineralMan
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Tue Oct-25-11 01:23 PM
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seabeyond
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Tue Oct-25-11 01:23 PM
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5. wow. i am so sorry to hear this. and to take so long to know. nt |
yellerpup
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Tue Oct-25-11 01:24 PM
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6. You have my sympathy and empathy. |
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Kids who manage to grow up while fighting these rare 1 in a million diseases get left behind in the 'race for a cure.' We have a similar situation in our family with an orphan disease and precious little help. Wishing you and your family the very best. I'm sure your daughter turned out to be a wonderful person despite her health struggles. :hug:
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myrna minx
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Tue Oct-25-11 01:24 PM
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ThatsMyBarack
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Tue Oct-25-11 10:51 PM
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Frustratedlady
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Tue Oct-25-11 01:25 PM
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8. What a shock for this young girl to hear that. My thoughts are with you both. EOM |
geardaddy
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Tue Oct-25-11 01:25 PM
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Edited on Tue Oct-25-11 01:26 PM by geardaddy
:hug:
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hamsterjill
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Tue Oct-25-11 01:29 PM
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I'm so sorry that your daughter and your family are having to go through this. I wish you all the best.
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lbrtbell
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Tue Oct-25-11 01:29 PM
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11. I'm so very sorry to hear this |
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There is nothing in the world worse than illness.
One possible hope is that, maybe, by the time your daughter is older, medical science will advance to the point where they might be able to prevent her eyesight from failing.
You and your daughter are in my prayers.
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tblue
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Tue Oct-25-11 01:30 PM
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12. Can she get to Mexico or Canada? |
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She could get help there....maybe...? I don't know how the immigration thing works, but it may be possible for her to get better care for much less money.
She should not have to suffer because this country can't get its act together. Just trying to come up with a solution. Worth considering. Wishing her & you the best.... :hug:
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Bombero1956
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Tue Oct-25-11 02:18 PM
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20. it just so happens that my other daughter married a Canadian |
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We were in Toronto for the wedding and she said she liked it there so much she could move there.
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lunatica
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Tue Oct-25-11 01:31 PM
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13. I'm sorry to hear this. |
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I hope they find either a cure or a way of managing it.
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monmouth
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Tue Oct-25-11 01:35 PM
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14. My heart breaks for you and yours. Good thoughts out to you...n/t |
sinkingfeeling
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Tue Oct-25-11 01:37 PM
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15. Sorry to learn this. Has she tried to get into any of the clincal studies being done on this disease |
Bombero1956
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Tue Oct-25-11 04:11 PM
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27. she's participating in one now |
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Through the University of Iowa.
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joeybee12
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Tue Oct-25-11 01:38 PM
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16. Oh, I'm so sorry...good vibes to you and your daughter |
lumberjack_jeff
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Tue Oct-25-11 01:42 PM
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OneGrassRoot
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Tue Oct-25-11 01:43 PM
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18. I am so very sorry. Thinking of you and your family... |
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:hug: :hug: :hug: :hug: :hug:
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leftyohiolib
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Tue Oct-25-11 01:51 PM
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19. it breaks my heart that life can be so cruell.damn |
riderinthestorm
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Tue Oct-25-11 02:22 PM
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21. Oh no!! I am so sorry about this. the most frightening thing for a parent ever |
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That their child is diagnosed with a disease like this.
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Ilsa
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Tue Oct-25-11 02:24 PM
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22. As the mother of a special needs child who will need my assistance |
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Until our last days, I feel for you and her. I am so sorry she is going through this and will have to deal with more down the road. It isn't fair. I wish I could fix it for you. I just hope and pray that treatments will improve to better her quality of life, and everyone will be understanding that some people have very special needs and will be charitable about those needs.
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Initech
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Tue Oct-25-11 02:25 PM
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23. $200K a month??? WTF?? |
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Fuck the greedy bastards in our for profit health care system - may they alll rot in hell. :grr:
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nadinbrzezinski
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Tue Oct-25-11 02:28 PM
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demigoddess
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Tue Oct-25-11 03:18 PM
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MadinMo
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Tue Oct-25-11 03:56 PM
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26. My heart goes out to you and your daughter. |
Maraya1969
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Tue Oct-25-11 10:08 PM
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28. I pray for a miracle for her. I've seen them growing organs in laboratories |
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now which I consider a miracle. I am so sorry she and you and your family have had to go through all this. I do believe in miracles and maybe this is the first step.
Light and love to all of you.
:grouphug:
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donheld
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Tue Oct-25-11 10:14 PM
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glinda
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Tue Oct-25-11 10:26 PM
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30. Light & love to your daughter. |
spin
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Tue Oct-25-11 11:13 PM
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32. I don't know if prayer will help but I said one for your daughter... |
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My heart goes out to you and to her.
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KT2000
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Tue Oct-25-11 11:13 PM
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what difficult news to have to hear. :hug:
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RamboLiberal
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Tue Oct-25-11 11:36 PM
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34. I am so sorry Bombero |
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My prayers and thoughts are with you and your daughter.
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lonestarnot
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Tue Oct-25-11 11:37 PM
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35. I am sorry Bobero1956. |
reggie the dog
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Wed Oct-26-11 01:25 PM
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Greybnk48
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Wed Oct-26-11 01:28 PM
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37. That's a kick in the gut. Sorry for everyone. |
AikidoSoul
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Wed Oct-26-11 03:56 PM
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38. How will she manage to pay for the care? What will happen to her? |
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I cannot even imagine what I would do in your shoes. It is beyond terrible.
:(
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DU
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