My mother was a very intelligent and vibrant woman, she and my dad were married for 67 years. After WWII she and my dad started their own business and after 26 years my dad ran for public office and so did my mother. She was the first woman elected to the South Gate City Council and first woman Mayor as well. Both she and my dad after moving to Washington state and living there for 26 my dad building homes they both in their late 70’s
decided to build and open a storage facility with a U-Haul dealership. When my dad’s health failed and my mom was running it by herself it was time to sell and move back down to California closer to me. They originally moved to Palm Desert, but even that got to be too far for me to have to run out and take care of a problem. So I moved them in close by me to a retirement community. I got them a doctor, a Cardiologist that I thought was a good one, after all he was from the same state where my mother was from “Alabama” and talked like an Alabaman, he was in with a group of other doctor’s that were highly recommended, he even worked on CSI shows as a consultant to the writer’s, and wrote his own mystery novels.
First he said my dad needed a “pacemaker” which he did, and then my mother was having trouble with tachtycardia so she required a pacemaker too. But my mother was having some skipped beats as well, so he said he was going to put her on Amiodarone. We never questioned it. She would have to go in every 3 months or a phone call made to the home to check on the pacemaker but that was basically it. She was never sent to the hospital to be monitored for this, she was never sent to have a Chest Xray or blood work, he never put her on other medications first to see how they worked.
As time went on she bacame more and more tired but then she was helping with my dad too so we never thought that much about it. She had Maccular degeneration and it had turned from the dry to the “wet” so she went to a retinologist and he said there were shots now that he could put in her eye that would help with her vision.Â The first shot in the right eye helped almost immediately but the succeeding shots in the left eye were having no effect. We didn’t query the retinologist bout the fact that Amiodarone can effect one’s vision because we didn’t know at the time and didn’t know until after she entered the hospital with her problems breathing and I looked up “Interstitial Pneumonia” a word the Pulmonary specialist had said was probably what she had.
I took my mother to the doctor for her pacemaker check in May of 2008 and at that time the tech states, “it’s in a constant state of irregularity and I am going to try and adjust it with the computer”, then she was taken to the exam room where an aid came in and did an EKG, no one saying anything was wrong. Finally the doctor came in for the exam and he said, “well how are we doing today”? My mother answered and said, “well I am a little bit tired and I am having some trouble breathing, catching my breath”. He said, “well let’s take a listen” with that he took his stethoscope and listened to the front of her chest and the back and said, “it sounds ok”. In stead of sending my mother to get a chest Xray he just said, “see you back in a couple of months unless something else comes up”. We walked out of the office and the first thing my mother said was, “well that was a waste of time wasn’t it”. Nine days later I got a call in the middle of the night that the paramedics were at my mom’s appartment and I should come right away.Â Â They were taking her to the ER because she was having trouble breathing.Â We got to the ER and the doctor there sent in a Xray technician to take a picture of my mother’s lungs. When the Xrays came back I saw the doctor put them up on the Xray screen and her (L) lung was completely white, her (R) lung was white about 3/4 complete.
They had her on oxygen, did blood tests and admitted her. The next day a Pulmonary Specialist came in to see her and said, “she probably has (interstitial pneumonia) but we need to schedule a biopsy and then she would be on a respirator for a couple of days after the thoracotomy to do the biopsy. They had to schedule it I believe in about two days but in the mean time she was on oxygen and one of the other pulmonary doctors came in to check on her. She had her eyes closed when he said to me, “has she ever said anything about if things go south”, I immediately ask him to step outside so she would hear what he was saying and he said she was very, very sick and it could be grave. My heart was in my stomach. When I walked back in, my mother opened her eyes and said, “what did he mean if I go south?” I explained everything to her and came right out and ask her that if something did go wrong how long would she want to be kept alive on a machine.” We both said that 7 days was long enough, I had always told my husband ” don’t you keep me on a machine for longer than 7 days as well”. Anyway the next day she was scheduled for the thoracotomy and all went well except her lungs were filled with fibroid tissue. She was kept on a ventilator and each day they weaned her off for a little bit more each day and she was finally taken to a regular medical floor room. PT was finally scheduling her to get out of bed to sit up, to start taking some steps but this was not to happen. They were still trying to put her on the CPAT machine at night and this was very clostrophobic for her and she didn’t like it. The next morning she called me around 6:00 a.m. and wanted to know if I could come to the hospital I told her that I couldn’t get in until after 8:00 but I did get there before that. I walked into her room and she was visibly upset. I ask her what was wrong and she said, “I got thirsty during the night and ask for some water, I was on the bell for a long time before the aid came in and then he poured the water in a glass and sat it on the table beside the bed in the dark”.
She was declared legally blind from the Maccular Degeneration by the Braille institute and her Retinologist in 2007. They had a sign above her bed that stated to NOT leave her when eating or drinking. Well she tried to reach for the water and spilled it all over her, so she put the light on and 20 minutes later the aid came in.. so she was very upset about that and didn’t want him back in her room again.Â I said something to the nurses that day, the next morning when I came in her oxygen sensor on the wall had been turned off, I immediately turned it back on and went to the desk to ask the nurse why it was turned off. Her reply was that “it made too much noise” I said, “that’s what it is suppose to do make noise when her oxygen levels drop below a certain point” by this time I was really getting upset with the nurses and the hospital.Â I know sooner walked back into my mother’s room when the Oxygen sensor was showing my mother’s O2 dropping rapidly.Â I yelled for the nurses, some tech ran in and was drawing blood gases on her, all the time her O2 levels were dropping. They were rushing her back into ICU faster than they could move and within 30 minutes the doctor was intubating my mother again and as the nurses were rushing me out of the room I can still hear my mother cry out “am I going to die” and that was that last thing I heard my mother say as they put her back on the ventilator and sedated her to be unconscious as the doctor said, “she would feel like drowning if they didn’t keep her sedated”. I watched my mother 24 hrs. a day for 7 days lay there in that bed, her kidneys failing, her liver failing, a machine pumping oxygen into her destroying everything in her body except her heart.Â She went in weighing about 139 to 141 lbs. and when she died she weighed about 200 lbs. Her body was so full of fluid, the tips of her fingers were black and blue where they would draw blood for sugar every 2 to 4 hrs. and then come in and pump a big syeringe full of glucose into her blood stream. My mother was not a diabetic when she went into the hospital but they were treating her as one because of her condition and everything failing. I sat beside her bed, I slept in the chair beside her bed listening to that machine pumping oxygen into her.Â Two days before she was taken off the machine I could see that the life of my mother had gone from her face. I had worked in a hospital as a licensed California Nurses Assistant and I had seen alot of really bad patients but to see my mother laying in that bed and wht happened to her that should never have happened is criminal in my view.
The day the doctor said, “Interstitial Pneumonia” I came home that night and went on the computer and googled in “Interstitial Pneumonia” and the 3 or 4 reason for it was Amiodarone. That word stuck out like a sore thumb at me.Â Then I read the WARNINGS tht the FDA had put out, allbeit they were dragging their feet in getting those warnings out as well. I called the pharmacy the next day and ask them why they didn’t put the warnings on the bottle or inform the patient if they had any of these symptoms, there answer was there weren’t any to put on the bottle… this was a Costco Pharmacy. My mother was still being given the Amiodarone in the hospital even up to the day she died.
I still have the prescription bottle sitting on my computer desk where I look at it daily to remind me of the horrendous acts of not only the FDA, the Phamaceutical Companies, the Pharmacies but the Doctors as well for not following the protocol that is set out for this medication.
It was never intended for AtrialFibrilation, it was for VentricularFibrilation. The use of this drug was supposed to be administered with in a hospital setting, chest Xrays originally given in the hospital and every 6 months there after as well as blood tests but my mother was never given any of these. The only blood test that my mother’s cardiologist did for her was her Protime/INR for the Coumadin that she was on for thinning her blood as she was prone to blood clots. On the website www.topix.com there are many many others who have lost husbands, father’s and other family members from this horrendous heinous drug.
Phamaceutical companies, the FDA, and doctors need to be accountable for the loss and suffering that are families have gone thru. You can be fine one day and then the roof falls in.
Had the doctor sent my mother to get a chest Xray when she told him she was having trouble breathing have saved my mother, probably not but who knows we will never know.
It has a half life of I think 6 months and would have taken that long for it to get out of her system. But why, why wasn’t she tried on another medication for AtrialFib instead of putting her on a drug that was meant for VentricularFib. Why wasn’t she monitored appropriately in the hospital, why wasn’t she given a chest Xray, and blood work? These are all questions we all want answers to.
Amiodarone/Cardarone/Pacerone they are all the same, need to come off the market and stopped. It is killing people. We need as family members people to help us get this drug off the market, we need someone to make this right. They can never bring my mother back but atleast I know that I did something to stop this insanity.
After my mothed I called the FDA and they actually took a report from me, but they never followed up, I called the Pharmaceutical company that produced my mother’s Amiodarone and they took a report but they never got back to me, I sent a letter to the Californai Medical Board and the answer I got back from them was that they could find no negligence.
No negligence, NO chest XRAY, NO blood work, I was furious about that and filed an appeal and never heard another thing. I thought I was alone until one day I found the Topix website and found I was not alone that there are a lot of people out there who have lost loved one’s to this drug and it is not just a drug that kills, it is a drug that “tortures” its victim and their families.
I hope that this will help you in finding out and getting this medication off the market and giving us who have lost our loved one’s from the drug some peace.