Isabel
Joined: 11 May 2003
Posts: 25
Posted: Tue May 27, 2003 11:51 pm Post subject: Meeting with Unit center
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I tried very hard to get the copies of my mothers treatment log and her lab results, they were negative.<
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>They told me that it was against their policy and that the only way I can get those papers is with a Power of Attorney from my mother. ( No problem!)<
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>We discussed the issue of the reuse treatment and they showed me a consent form signed by my mother on her first day of dialysis letting her know that they are a reuse unit. I was not aware of that paper since I did not take my mother the first day, but I mentioned to the Administrator that my mother did not speak or read English at all, so she did not know what she was signing and I felt the consent was not valid.<
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>They claimed that the pt were fine with reused kidneys after 6 months, this is the length of time that it will normally take for pts.<
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> I know though the possibility of Peritoneal Dialysis, but my mother has a feeding tube and according to them it cannot be done. <
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>They told alot of things that I did not understand . They explained to me that Medicare is the one that approves the reuse of kidneys. Is there anything that we can do???? <
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leadsag
Joined: 31 Oct 2002
Posts: 263
Posted: Wed May 28, 2003 12:04 am Post subject: what can you do.
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Get in touch with Arlene.<
>Arlene, do you have a 'form' or 'letter' for revoking re-use consent?<
>
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leadsag
Joined: 31 Oct 2002
Posts: 263
Posted: Wed May 28, 2003 12:08 am Post subject: contact info
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Phone: 360-604-4440<
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>Mailing Address ialysisethics.org<
>11500 NE 76th St. Box 241<
>Vancouver,Wa 98662<
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>Email is amullin@uswest.net
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aprnjam
Joined: 28 Apr 2003
Posts: 85
Posted: Wed May 28, 2003 4:38 pm Post subject: Contacting Arlene
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Hi, I'm Joyce, and I will be working with Arlene on some of the Advocacy issues. Since Arlene is out of town until Tuesday, there are several things that you can to do help speed the process up. First, e-mail her, with all the facts that at issue, dates if you have them also a great help. On the first page of the General Discussion is an Advocacy Authorization Section. Print the form, and complete it. Having it notarized is much better, but 2 signatures will work. Arlene will need 2 copies. You can fax one to her to get the process started, but both copies must be mailed to her for her records. Since you indicated it would be no problem for your mother to make you her Power of Attorney, this would be a good idea to get this done as soon as you can. This can either be a Power of Attorney for Healthcare, or a full Power of Attorney, just ensure that in this document that it address health care issues as well. <
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>Again, the sooner you get this done, the quicker Arlene can move with the process. I will be helping Arlene with some of the Advocacy Cases, and I may work with her on your case, but I'm not sure. I do know that this is the information that she needs to get started on your case. Since she will be out of town, this gives you a few days to get all this information together, e-mail her, get the notarized forms to her, and even possibly get the Power of Attorney for Health Care changed with your mother. We will work to get these issues resolved for you!! Again, a big HUG to you for caring so much for your mother!!! <
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>Joyce
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tx gal
Joined: 08 Mar 2003
Posts: 3
Posted: Mon Jun 02, 2003 2:13 pm Post subject: hang in there
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i am sorry too that you are going through this with your mom, but hang in there! are you her responsible party? do you have any power of attorney? it might be helpful if you could get them if you don't already. my mom was a dialysis patient also. she was so 'dried out" afterward that she couldn't even talk. they finally adjusted the dry weight and she was better about that. she had cramps quite often and they gave her quinine also, however,she couldn't adjust to it. it made her forgettful and confused so she had to stop taking it. they are telling you right that it is a big adjustment period and remember that EVERYTHING she eats,drinks, and all medications travel through the bloodstream in some form. so it is very important to watch the intake. the more fluid they have to remove, the longer and harder it is for her. as a patient she will feel different than it is being the daughter and you will be treated different from most staff because you aren't the patient. but you have a right to help your mom understand what and why things are done they way they are - and to question whatever does'nt make sense. ethically and morally they have to explain treatment. i wish i had learned about a lot a long time ago and you have the best advocates available anywhere right here at this site. arlene will find the answer if she doesn't know it immediately, she will get it for you. again, as a child of a patient, it is hard, and somethings you will not understand overnight. just listen to your mom, be there and it will be ok--one way or another. if they don't want to help you- try to go somewhere else if possible. if you can't, keep pushing for answers, they will answer you sooner or later even if it's just to shut you up for a while! i am talking too much, but i think you understand what i am trying to say. i lost my mom a little over 2 years ago. i wish i had known then what i have learned since. and believe me, most all of it was through dialysis ethics. you have come to the right place!!
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patient
Joined: 29 Oct 2002
Posts: 137
Posted: Mon Jun 02, 2003 5:55 pm Post subject: to tx gal
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tx gal,<
>Thank you for sharing your story and caring so that others will not have to go through what you did with your mom. I am really sorry you had to lose your mom as you did due to poor quality dialysis care. Being a patient I see the elderly patients, or other age patients who are uneducated on their treatments, have their lives stolen right away from them. I have witnessed this over and over again. There is no nice way to say it - the companies, doctors etc are money grubbing murderers. I love my country, but I am in shock that our govt. knows all about what goes on (2000 Senate Hearings on Dialysis) yet doesn't stop it. I wish you well. Thanks for standing with us to put an end to this atrocity.
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aprnjam
Joined: 28 Apr 2003
Posts: 85
Posted: Mon Jun 02, 2003 9:49 pm Post subject: Re: to tx gal
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Thank you for sharing your story! I am so sorry that your lost your Mom. I know how hard that is, I lost my Mom and best friend to giant cell lymphoma 2 1/2 years ago. While this poor treatment occurs in dialysis, it also occurs in other areas as well. My mother was put through unnecessary chemotherapy and shortened her life, because I feel the oncologist wanted to experiment with chemotherapy on a 90 year old patient.<
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>In our first meeting with him on August 30, 1999, he told my mother (a feisty, alert and oriented lady), myself, my husband, and my son, that with chemotherapy, she had an 80% chance of remission. He stated that he did not know what the outcome would be, since they had never given this type of chemotherapy to anyone her age. With those odds, we all agreed to the chemotherapy. After one session, she was so ill, it
oke my heart. She had to be hospitalized for dehydration. After her hospitalization, she was sent to a skilled nursing facility, for some rehab and strengthening before going home. It just happened to be the facility I worked
at. When I read her records, I was livid. I will never forget the words in the admission history and physical, he stated, "Although the odds of remission were only 20%, it was discussed the patient, her family, and her daughter, who is a nurse practitioner and all agreed to the treatment plan." <
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>There is a h--- of a lot of difference between an 80% chance of remission and 20% chance. There is no way she would have made the choice for chemotherapy, nor would have I encouraged it, with only a 20% chance of remission. Once I read that, I took the chart to my mother and had her read it. She made the decision to immediately stop the treatments and change to Hospice care. That was on September 23, 1999, she died on Oct 11th. I always question, how much time did we lose with her because of the chemotherapy?<
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>I have also seen numerous elder patients in their 80's and early 90's put on chemotherapy and radiation therapy for various types cancer that have little or no hope of remission in their age groups. Again, this is my own personal opinion, but I think since people are living longer, they have no data base for elders and how they will respond to chemotherapy and radiation. So let's do a little research and find out, without actually telling the patient that's what we're doing. So elders suffer through the rigors of chemotherapy and radiation treatments, does it lengthen their life, maybe, but what is their quality of life?<
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>I did have a bit of retribution with this physician. He sent me a bill for over $3,000 for her care. I went to his office and asked to speak to him privately. I was told that he was "too busy" to talk to me. I asked to make an appointment to see him. I was told if I was not a cancer patient or a family member of a patient, that I could not make an appointment. I said that I was, and gave my mother's name. She looked it up on her computer, and informed me that my mother had passed away (big news!), therefore, he would not see me. By then I was getting angry. I was still polite and I told her, "He will either see me, or I will say what I have to say to you and this entire waiting room, and believe me, you do not want me to do that." She told me, "I told you, he's too busy, your mother is no longer a patient, and he will not see you, so you can leave!"<
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>I took at the bill and a copy of the skilled nursing facility history and physical handed it to her, and then very calmly, but loudly, so that all the elders sitting in the waiting room could hear me, said, "Dr. X, lied to us, he sat in this office and told us that my mother had an 80% chance of remission if she started chemotherapy. She had one, mind you one, treatment and ended up in the hospital, and then in the nursing home. The nursing home history and physical states that he discussed it with us and that she only had a 20% chance of remission and that we all agreed to the chemotherapy. I have news for him and you, there is no way in the world that we would have put her through chemotherapy with only a 20% chance of remission. Dr. X is using elders for research to see if it works or if it doesn't, without regard to their quality of life. He can take this bill and shove it, when he decides to start telling his patients the truth instead of lying to them, I'll think about paying for it!" As I turned to walk out the door, about half of the elders in the waiting room got up and followed me out. In the elevator, they all said they weren't going to be a guinea pig for anybody and they were going to live the rest of their life to the fullest extent. I never got another bill.
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QUESTION ANSWERED
Joined: 03 Jun 2003
Posts: 1
Posted: Tue Jun 03, 2003 6:04 am Post subject: REUSE
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All you have to do legally is to tell them that you dont want to do reuse as is your right.<
>Some clinics want you to state that in writing. It is a contract all sign in the beginning when you first start reuse.<
>You at anytime can change your mind. You will be told that you will have to spend more time on dialysis. The clinics will punish you by stating more time is needed as it is a cheap dializer that they will use.<
>Fortunately they have to give you a close to the same prescription dializer as before. This is usually just a threat as if they give you more time on the machine you screw up their times for the other patients.<
>In the clinic I worked in before, they were re-using CT190's and when a patient went to a non reuse,they still used the CT190's.<
>Each box of dializers has an insert in every box. You can ask for the insert on the one they reused before and the new one they want to give you.<
>Usually they will just give you a good dializer, as they are accountable if they give you the wrong prescription. It is your choice and you should be allowed to go into the reuse room and see how they are sterilized.<
>It is your life and your choice. Try it for awhile and see if you feel different with reuse.<
>Arlene
