Posted on 01/25/2012 9:09:53 PM PST by Tolerance Sucks Rocks
I am going to try and tell you what happened to us on January 10, 2012, in the conference room in the Nephrology department at Children’s Hospital of Philadelphia.
We arrived for our regular Nephrology visit with Amelia’s doctor who has seen her for the last three years. She examines Amelia and sends us for labs. I ask about the transplant and she says we have about six months to a year until she needs one. She tells us she reserved the conference room and when we get back from labs, we can meet with the transplant team and he can tell us about the transplant process.
After the labs, Amelia falls asleep in her stroller and we are called back to a large room with a screen and about sixteen chairs. Joe and I get comfortable and leave a space between us to fit the stroller. After about five minutes, a doctor and a social worker enter the room. They sit across from us but also leave a space between the two of them.
The doctor begins to talk and I listen intently on what he is saying. He has a Peruvian accent and is small, with brown hair, a mustache and is about sixty five years old. He gets about four sentences out ( I think it is an introduction) and places two sheets of paper on the table. I can’t take my eyes off the paper. I am afraid to look over at Joe because I suddenly know where the conversation is headed. In the middle of both papers, he highlighted in pink two phrases. Paper number one has the words, “Mentally Retarded” in cotton candy pink right under Hepatitis C. Paper number two has the phrase, “Brain Damage” in the same pink right under HIV. I remind myself to focus and look back at the doctor. I am still smiling.
He says about three more sentences when something sparks in my brain. First it is hazy, foggy, like I am swimming under water. I actually shake my head a little to clear it. And then my brain focuses on what he just said.
I put my hand up. “Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?”
The tears. Oh, the damn tears. Where did they come from? Niagara Falls. All at once. There was no warning. I couldn’t stop them. There were no tissues in conference room so I use my sleeve and my hands and I keep wiping telling myself to stop it.
I point to the paper and he lets me rant a minute. I can’t stop pointing to the paper. “This phrase. This word. This is why she can’t have the transplant done.”
“Yes.”
I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.
A bit of hope. I sit up and get excited.
“Oh, that’s ok! We plan on donating. If we aren’t a match, we come from a large family and someone will donate. We don’t want to be on the list. We will find our own donor.”
“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays” He says each word very slowly as if I am hard of hearing.
“STOP IT NOW!” The anger is taking over. Thank God. Why did it take so long to get here?
The social worker is writing some things down. Not sure what. She casually gets up to take a call. My eyes follow her to the phone and I see Joe’s face. His mouth is open, his face is pale and he is staring straight ahead of him at the white board.
Rage fills the room. I point in his little, brown pudgy face. “Do not talk about her quality of life. You have no idea what she is like. We have crossed many, many road blocks with Amelia and this is just one more. So, you don’t agree she should have it done? Fine. But tell me who I talk to next because SHE WILL HAVE IT DONE AND IT WILL BE AT CHOP.”
I see the social worker quickly writing down what I just said. Joe hasn’t moved. Amelia is still asleep.
The social worker decides to join the conversation. “Well, you know a transplant is not forever. She will need another one in twelve years. And then what? And do you have any idea of the medications she will need to take to keep her healthy?”
I speak through gritted together. “YES, I HAVE DONE ALL MY RESEARCH.”
She smirks a little. “Well, what happens when she is thirty and neither of you are around to take care of her. What happens to her then? Who will make sure she takes her medications then?”
In a voice that mimics hers, I snort, “Well, what happens if you die tomorrow? Who will take care of your children? Your responsibilities at work?” She breathes in and her eyes widens. “Right!” I throw at her. “Neither of us can predict the future and we shouldn’t try. But if Amelia does not have this transplant she has no future!”
The doctor interrupts. He puts his hands up and tries to take a stern voice with me. “These medications she has to take after the transplant, they are very dangerous. They can cause seizures. We have to get the dose exact. They may cause brain damage.”
“DO OTHER CHIILDREN WHO HAVE A TRANSPLANT TAKE THIS MEDICATION?”
“Yes, but it is different for her. She is already brain damaged and mentally retarded.”
He pauses as if he is choosing his words carefully. “I have been warned about you. About how involved you and your famliy are with Amelia.”
The devil himself could not have produced a more evil laugh. “Ha! Warned! That is funny! You have no idea…”
I am beginning to realize I want this over with so I can move onto the next person who will help me with the transplant. So I say the words and ask the questions I have been avoiding.
“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”
“Yes. This is hard for me, you know.”
My eyes burn through his soul as if I could set him on fire right there. “Ok, so now what? This is not acceptable to me. Who do I talk to next?”
“I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and we will vote.”
“And then who do I see?”
“Well, you can then take it the ethics committee but as a team we have the final say. Feel free to go somewhere else. But it won’t be done here.”
They both get up and leave the room.
I look at Joe who is sobbing trying to get the stroller and Amelia’s backpack. I break down with him before we head to the parking garage.
I hope you are disturbed, troubled, distressed, and pissed off when you read this. I hope you share it with many, many people. Although I did not know this yesterday, this is very common and happens across the map. I have researched and researched and researched transplants and the MR, as they are called in the medical journals, and it is appalling. We are in the year 2012 and my child still does not have the right to live, the right to a transplant, because she is developmentally delayed.
Congratulations. What a blessing to have your hearing again, and what a blessing that you had good representatives who could help you through all the rigamarole.
“Useless eater” huh.
I guess this is the trap door of the welfare state? Does it matter if the child has an endowment set up for him/her?
A very vexing situation and I’d think that she’s better off living on one kidney transplant than none. Maybe by the time it wears out there will be something new and better that doesn’t carry the risks of current anti-rejection medications. Maybe there will even be something to ameliorate her mental sluggishness, because she was able to live to see it. Imagine the stories that such a person could tell, having regained (or gained for the first time) something like normal mental capacity.
How good does the sound through a cochlear implant sound? As one with an ear going deaf, the idea is intriguing through beyond my means for now. Is it realistic? Is a normal telephone intelligible and natural sounding?
If you can persuade her to move closer near you, that would be best for both of you. It sounds like the healthcare folks are frustrated by your “stubborn but frail” mom. Nothing makes doctors and nurses crankier than a patient who is, ahem, uncooperative in helping themself.
Just three months before my mom passed, she and my dad wrote out Power of Attorney so I could make decisions for them when they became unable to do so. Did she make out such documents?
Thanks for the advice. She saw the doctor today and he was really mad that she got her bandage wet (thus all the threats). He took a sharpie and drew a circle on her leg and said that she had to go back into the hospital immediately if he redness extended out side the circle.
I looked it up on the Internet, and the pictures there look just like a problem I’ve had on my leg for several years. http://en.wikipedia.org/wiki/Cellulitis My doctor and his nurse practitioner both say there is nothing to worry about, although at times mine has been red hot to the touch. It is not bothering me now, but it looks dreadful. They say it is just poor circulation and not to worry.
My mother’s infection, however, was swollen and burst — bleeding. The ladies at the beauty shop insisted she go to the doctor last Wednesday. I am 2000 miles away and just heard about this last Friday when she was released from the hopital and needed a ride home. She wanted to drive herself, but the hospital would not allow it.
I arranged for someone to pick her up and to retrieve her car. It has been a circus ever since. She thinks the social worker is spying on her (she’s probably right). So she is scurrying around trying to straighten up her house in preparation for the social worker visit. That is the worst thing to do when she is supposed to be on bed rest. The social worker (or the visiting nurse — not sure which) insisted that she buy a new washing machine because hers was no longer spinning. She was wringn out the clothes in small batches and then drying them in the dryer a few at a time. They said that if she didn’t get a new machine social welfare would consider that she was not serious about staying in her own home and would make her move into assisted living. She doesn’t want that, so I had to go out and buy her a new machine tonight and arrange to have it delivered in CA — 2000 miles away. The new machine has to use High efficiency soap. Regular soap will clog the machine and ruin it. (Another government regulation messing in our lives).
She does not need to be worrying about learning to use a new washing machine wit new soap. She needs to be resting and getting her leg healed.
it takes about four or five mappings to get to your sound and pitch levels but once you reach that final mapping you adjust and hearing is wonderful and using a phone takes practice but you can handle that..I talk on the phone often and daily to my adult kids..
the first thing I hear was rain on a window pane, oh what a beautiful sound.
sometime I just sit out doors (we live in the country) and just enjoy birds, gravel under my shoes, a baby giggle, or so many sounds and they are normal..I have difficulty with music...I use to love to listen to my cd as I drove, but not as much
I highly recommend a cochlear implant if you get tested and the audiologist and doctor agree..My implant audiologist is so fantastic, the patience of an angel..my doctor told me hearing will not be perfect but it is better than not hearing at all and living in a world of silence.. will I think it is pretty darn near perfect...
I have my final mapping in March.
my doctors hands have surly been touched by the MASTERS HAND. he is darn near perfect too....
No, and she refuses to move. Moving would probably kill her. She has a wide circle of friends where she is, but she refuses all help. It’s a bad situation. We’ve told her that she could move here, but she refuses; and she refuses to move into a senior facility in the town where she lives too.
That “sounds” wonderful!
And unfortunately this is more and more the state of our health care. The government and the committees and the ‘quality of life’ experts all have their say. NOT ONE gutsy doc stands and says this is what is right and to hell with the system. My father would be appalled. I am sure my mom is rolling in her grave. And I feel sorry for those folks who are currently having to practice medicine and give care in the face of this.
For this family my thoughts and racers go up for you. May your miracle come sooner rather than later. I hope you Amelia gets a chance to stand and tell this idiots just how wrong they were
so never feel you don't qualify...search it out..I have NUCLEUS 5 implants..
did you know if you live in PA. and are hearing impaired you can quality for a Cap tel phone, they run programs off and on..each state is different check out your state to see what they offer sever hearing impaired
It sounds as though she is still capable on managing on her own. At some point you may have to step in and go to court, have her found incompetent, particularly as she won’t cooperate with medical people who want to help her heal. Her refusal to cooperate with medical treatment, however, may not have anything to do with her ability to form judgements.
This is a very difficult decision and may alienate her from you for the rest of her remaining years. You know your mom better than anyone else. The question is...how much should you do and why?
Is her independence more important to her than, say, living longer while not being independent? If the answer to that is yes, that puts you in the difficult position of standing apart and watching what happens to her.
I would talk with a lawyer who deals with these kinds of issues. These problems with the elderly are common.
She is THEIR CHILD, for goodness sake. Are they not supposed to be involved with her? Her Mommy carried her under her heart for nine months. Is she supposed to no longer love her as her baby because she is retarded?
Interesting that it doesn’t deal too well with music, since I’m a musician among other things. Is there a way to cut it off when you don’t want it “piping in”?
yes there is...
the processor is all computerized, it does many different things..
I still listen to music, just don’t enjoy it like I did...but to hear conversation with other, and to be able to join in is unbelievable...
would I do this again....your darn betcha...
have a wonderful day..
How quickly Americans forgot just who elistist (ruling) Socialists are.
Liberal elitists hate Christians centrally because Christians don’t agree with their Darwinistic social philosphy of eugenics where the weak and non-productive of the human herd are culled by the government in the name of a shortage of resources and the “good will” of superiority versus inferiority.
Socialists always have inferior people to kill and hate. They philosphy is based on coveting and killing; the Ten Commandments up-side down. When they call their enemies “stupid” they are calling them unworthy of life. When they put on the watermelon mask and speak of over population, they are not beyond using the State to solve that “problem” of human life.
I thought you said one ear was still working OK, the other one needed the implant to function again. Do you have a stereophonic sense again when the implant is running?
It seems that modern liberalism (as opposed to classic liberalism, which most modern conservatives actually embrace) manages to become a reverse caricature of the virtues it supposedly championed. Instead of being softhearted, it becomes hardhearted.
Modern social leftism is what classical liberals thought - up-side-down. They call it different things - liberal, progressive, humanist, atheist...but it is all based in the depths of darkness which humanity has seen act out in regimes in China, the Soviet Union and Nazi Germany. They want to take it global and they want to “rule.”
Unlike classical liberals these elitists don’t care about our stinkin’ rights and nor about constitutional limits on their power. I always said Nazi Germany or Mao’s China could never happen here because no elite group could get total control over Federal power for the machine needed to carry out the mass murder. This is no longer true.
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