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Related: Culture Forums, Support ForumsWell my daughter is having her transplanted kidney removed next week
She had the kidney transplanted in August of 2010 and ever since has been losing function. The doctors say its the Dents Deposit Disease that destroyed this kidney just like it did her original kidneys. So she has been placed on the transplant list once again and has started dialysis from home. If things get worse then she'll have to do dialysis at the center near her home. The doctors are hopeful that her next transplant will be different because they'll start her on Soliris just before she has the surgery. Soliris is the world's single most expensive drug at $409,500 a year. This monoclonal antibody drug treats a rare disorder in which the immune system destroys red blood cells at night. The disorder, paroxysymal nocturnal hemoglobinuria (PNH), hits 8,000 Americans.
bluesbassman
(19,310 posts)Sending out good vibes for her that she can move up the list quickly and that her dialysis goes as smoothly as possible in the meantime. Peace to her, and you and the rest of your family as you cope with this.
Bombero1956
(3,539 posts)She recently moved into her own apartment after going back to school and getting a job. I thought she was doing well until she broke the news tonight.
nolabear
(41,915 posts)I hope she rockets up that list and gets the drug therapy and new kidney soon. You hang in.
Bombero1956
(3,539 posts)Her transplanted kidney came from a shooting victim at a beer distributor in Manchester Ct. I just hope that nothing that tragic has to happen for her to get a new one.
In_The_Wind
(72,300 posts)May her new donor be a gentle soul with a happy past.
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CaliforniaPeggy
(149,308 posts)I hope everything goes as smoothly as possible!
Major, MAJOR vibes to her, and to you as you stand by her.
Demo_Chris
(6,234 posts)I cannot imagine how horrifying this is for you
KT2000
(20,544 posts)and hope she does not have to wait so long on the list.
Thanks for the info too - had not heard of this condition.
Unbelievable how expensive the medication is too.
Good thoughts going out to you and your daughter.
Jasana
(490 posts)I hope she gets another kidney swiftly.
Unbelievable the cost of that medication! That should be consider a crime right there.
Tuesday Afternoon
(56,912 posts)DFW
(54,055 posts)No matter what this drug costs to make, I think our government can pick up the tab to keep some of our own citizens alive. I hope your daughter is one of them.
Sekhmets Daughter
(7,515 posts)I am so sorry. Here's hoping they will quickly find a match for her and that both of you will find the strength and peace to deal with this.
lunatica
(53,410 posts)hedgehog
(36,286 posts)Bombero1956
(3,539 posts)The government wouldn't pay for it so the hospital and drug manufacturer are splitting the cost. Apparently they are trying to find other uses for it. In that regard she's really lucky. Thanks for the good wishes and healing vibes.
Agschmid
(28,749 posts)my best wishes and prayers for the second!
TuxedoKat
(3,818 posts)and prayers for your daughter and you. I hope all goes well for her. (((HUGS)))
RiffRandell
(5,909 posts)Please keep us updated.
graywarrior
(59,440 posts)Let us know how things turn out for her.
Bombero1956
(3,539 posts)LeftInTX
(24,560 posts)Sorry she has a rare disease too.
GoddessOfGuinness
(46,435 posts)Keep us posted. ~hugs~
tblue
(16,350 posts)and all my best wishes.