Pacemaker rights

Hello

Haven't posted in a long long time. 4 years ago took minocyline for 28 days and started burning. Diagnosed with neuropathy. From there got ecoli probably throughout body but no doctors found until simple gyno swab test. Bowels didn't work and stomach. Gyno gave me antibiotics call avelox which causes nerve damage. Anyway lost 35 pounds cannot gain weight and now total body nerve damage. I'm in pain 24 hours and skin and bones in ribs and back. I'm suppose to get my 3rd pacemaker next year. What are my rights not to get one ? I also have a controlled seizure disorder and reason for pacemaker is neurocardiogentic syncope. I've had same wires for 17 years. I do not want a pacemaker to extend life. It sounds sickening not to get a pacemaker but in very bad shape. I would like to say I used to exercise 5/6 days a week before this. Very active working and playing ! I'm not depressed just very sick. I've been to John Hopkins no doctors know what happened to me. Total 8 neurologists including Columbia in NY too. I also had a botched floroscopy epidural spinal tap which caused tarlov cyst, sacral swelling and 8 bulging discs. 


4 Comments

pacemaker rights

by new to pace.... - 2019-11-15 17:53:24

You might just watch what you are eating to see if something you are eating causes some of your problems. If that happens take all those food items including spices etc. Our of your life for 6 weeks.  than put one at a time back in until the reaction comes.  The other faster way is through food senitivity blood tests.  their are a couple of companies out there.

    I found out a many years ago that a medication i was taking was coated in lactose and caused many problems.  Did all kind of tests to see.  one day i looked at the piece of paper that came with the drug.  Once i stopped taking  the drug.  The body pains, tireness, bloating etc went back to normal.  of course could not cold turkey had to reduce the medication slowly.

I'm sorry you're in so much pain

by Jo S - 2019-11-15 19:37:48

First, I am very sorry you're in so much pain.  I'm not a legal expert, but I don't think anyone is going to force you to get a medical procedure done against your will.  In fact, my understanding is that patients can request to have their ICD turned off under certain circumstances like  terminal illness or reaching a point where they don't want their life prolonged artificially.  I don't think doctors are bound to honor the request to withdraw treatment by actively turning the pacemaker off in all circumstances, but I certainly have trouble believing that they can make you get a third pacemaker if you don't consent to treatment.

I would talk to your doctor and see what they say, then consult a lawyer if necessary.

Thank you everyone

by Blondpacer - 2019-11-16 09:10:44

I hope everyone didn't think I was ungrateful for my time with a pacemaker. At 42 it saved my life because of neurocardiogentic syncope. I have autonomic neuropathy also which attacks the organs. I also have dysautonomia which affects the nervous system.17 years doctors still disregard and do not study the condition. I've had over 50 blood tests over 3.5 years. All weird blood tests testing everything under the sun. All blood tests I test like a perfectly healthy person. I miss exercise so so much but cannot. Make sure to exercise for me ! Also be be careful with antibiotics. Some cause nerve damage and tendons to rip. That started this. FDA in 2013 gave a warning on this. Unfortunately my gyno gave me avelox. Just a FYI. Thank you. 

No replacement?

by Gotrhythm - 2019-11-16 17:43:10

You absolutely have the right to refuse a replacement pacemaker. Indeed, as an adult you have the right to refuse any medical treatment of any kind.

Because we're not always able to speak for ourselves it's best to give someone you trust your Medical Power of Attorney, and make sure that person understands that under no circumstances do you wish to have your pacemaker replaced.

BTW I have decided I will not replace my pacemaker when this one gives out. Not because of reasons such as yours. Fundamentally, I just don't want to replace it. So you're not all that unusual. It's your decision and you don't have to justify it to anyone.

You know you're wired when...

Titanium is your favorite metal.

Member Quotes

I have had my pacer since 2005. At first it ruled my life. It took some time to calm down and make the mental adjustment. I had trouble sleeping and I worried a lot about pulling wires. Now I just live my life as I wish.