I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: mysticnight on April 09, 2015, 05:58:47 PM
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I am SO angry right now.
As usual, I asked for a copy of my recent bloodwork. There was a test I was not familiar with, and noticed it said I was receiving Coumadin as blood thinner. This was totally new to me, as I had no idea I was getting that. I was shocked and looked it up. I have most of the contraindications, but the nephro doesn't believe I really have them.
I used to be on heparin and had horrible allergies to that, which the doc didn't believe either, but in an ER visit was changed to saline drips during dialysis in place of blood thinners by the on-call doc. Felt amazing for a few weeks, until my regular doc came back from vacation and I think just added the coumadin without telling me. The last 3 weeks I have a page long list of new symptoms, which just happen to fit the side effects of Coumadin. The nurses brushed them all off as nothing. And the doc ignored me about it.
My question to you is this - do you guys know what drugs you are given, not only in prescription, but by IV during dialysis, etc. Do you care, do you 'trust' your docs? What do you do about side effects?
I feel violated not giving informed consent and having my allergies once again ignored.
I am considering writing hospital admin about too many such incidents involving allergies to drugs and being dismissed as nuts for having them.
thanks.
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I agree that they should tell you about any drugs you are getting. I'm not sure where you are, but I would assume it is also required by law.
Do you have any way to look at your medical records online? These are usually incomplete, but should at least have a list of all drugs administered.
You can also get complete medical records with notes and other things. This is a lot less convenient, but in your case it might be necessary.
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My question to you is this - do you guys know what drugs you are given, not only in prescription, but by IV during dialysis, etc. Do you care, do you 'trust' your docs? What do you do about side effects?
I feel violated not giving informed consent and having my allergies once again ignored.
My nurse will tell me what she is adding via IV, but I could see how they could add something new without me being aware. I care mildly but trust my team and so far respond well. If I start having more side effects I will need to care much more.
I think you should write to the admin, rather than focusing on side effects, you should focus on your lack of consent and the fact that the staff ignore your wishes. It doesn't really matter if you have symptoms or if you are "making them up." Your care givers should honor your wishes.
Do you have the freedom to choose a different doctor and/or treatment site?
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I doubt there is a law but you should be informed in all cases of any new meds. You should be able to sign a paper if you want to refuse a new med. I would not necessarily blame the nurses. They usually think if the doc prescribed it that you know about it. As a habit though, I ask what they're doing any time something is injected, even if they say what they say every day.
I think first you need an appt with the neph outside of the dialysis situation. You can't really talk to them among everyone else. Ask him why he changed it. Ask him why he didn't talk to you. Ask why it can't be changed back. If he then refuses to help you, then escalate it.
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I doubt there is a law but you should be informed in all cases of any new meds. You should be able to sign a paper if you want to refuse a new med. I would not necessarily blame the nurses. They usually think if the doc prescribed it that you know about it. As a habit though, I ask what they're doing any time something is injected, even if they say what they say every day.
Now that you mention it, it probably isn't possible to give consent for every individual medicine once you've given general consent to a procedure (where you might not even be conscious). You are certainly entitled by law to your medical records (but that might be too late). You should make it clear that you want to be alerted to any change in medication. I would suspect that many doctors would be fine with this but won't put any effort into unless the patient wants to know.
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Holy cow! Coumadin is a serious drug! They not only should have informed you but there should also be some "patient education" given whenever they put someone on that drug. I know because my mother was on Coumadin for life due to having a blood clot embedded into the wall of her heart. Cardiologist wanted her on Coumadin in case the blood clot ever surfaced and broke off. She needed to learn about the different doses, side effects, how much green leafy vegatables (vitamin K) to eat and not eat. She had to learn a lot so that she'd be able to know when to tell the doctor about any side effects, etc so that they could test her level to see if they needed to change her dose, etc....Maybe the form of Coumadin and dose they give patients on dialysis differs from what they give other people but still...I think the patient should always be consulted and educated on any new drug they are prescribed.
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In the last month I have been refusing heparin during dialysis. I have had a series of minor bleeds in my eye during dialysis, last month a major bleed in my left eye. Can't see a thing through the blood, and it will be 12 to18 months before it clears. My nephrologist was not happy with me refusing Heperin because he is afraid I will clot and lose blood. On the other hand if I have a similar bleed in my right eye I will need a seeing eye dog for a year. My sight my life my risk no Heperin. The center flushes my lines every half a hour and I haven't clotted yet.
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Correct me if I am wrong, but I thought the package insert medical information is REQUIRED by Federal Law to be given to everyone with EVERY medication.
A simple phone call to your clinic and they should be able to tell you exactly what meds they have administered during your treatments, and WHO ordered them.
You do have the right to refuse any treatment medication, for any reason, just a "No Thanks" is enough, and the clinic has to respect that.
Any Dr that refuses to listen to a patient complaint of drug reaction should lose his license. Period. Drug reactions can, and do, kill.
Start looking for a new neph. Do not wait for this one to hurt you because of his incompetence.
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I would be very angry too.
As a patient you have the right to be consulted over every aspect of your treatment, and to refuse it if you not happy.
I never take anything that hasn't been discussed with me first and agreed to.
I have fought hard against some of their decisions and won battles over what I will and won't have. (I probably have the reputation as a stroppy patient!!)
but I don't care. It's my body and I will choose (with their opinions considered) my treatment. I am not here to make friends. I don't care about their unit statistics.
I am here to do what is best for me and no-one else.
Fight it. :Kit n Stik;
If a doctor puts you on any drug without discussing possible side effects/contraindications first they can be liable in a court of law if anything happens to you.
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Charlie, in a clinical setting such as a dialysis clinic or hospital, they are not required to give you the official labeling. They are required to make the information available, not the same thing. Even at the pharmacy, you are usually not getting the official labeling. You are getting a summary of uses, dosages, side effects, that sort of thing. If you are not a scientist, many parts of the official labeling can be very confusing or irrelevant.
At your dialysis facility, the also have MSDS of every chemical used. Once again, you have to ask to see them. Even the workers don't get their own copy. There's usually a binder to look at or computer files.
I suspect these days you would be given a url not a piece of paper.