Whom To Trust, That Is My Question
I have been fooling around with my cardiac condition since it became undeniably obvious, or a full Sudden Cardiac Arrest in June of 2003.
Survival of the Sudden Cardiac Arrest was like something out of the Keystone Kops Movie. Absolute absurd emergency (?) treatment. No Defibrillator carried in ambulance 🚑, in Portland, Oregon 1 in 4 ambulances carry Defibrillators! So, the poor EMT panicked when I flat lined. He was praying and working on me, his co worker just froze.
I was bagged on the way to the local Fire House (station), the fire 🚒 applied their Defibrillator, so the trip to the hospital continued.
Weekend, the Cath Lab not ready, proper staff had to be called from home. The attending Cardiologist was about to have a Stroke, he kept vocalizing junk, he thought I was having Sleep Apnea (3:00 pm)? The poor EMT kept insisting he had the tapes to prove I was flat lining several times.
I suspect part of the issue was, I was talking, I knew what was happening I knew the procedures.
When I moved from my ten days in ICU, I received a way too long speech from a Cardiac Nurse. The gist was my heart was seriously damaged, I would not be returning to normal. I would not be able to walk or take care of myself. Basically I was sent home to die. I refused to be put in communal living.
After about 10 days at home, I demanded a trip back to ER. The attending physician seemed to think I was faking, my release papers were on their way. My lab results showed up while I was putting on my coat. Surprise, I was in Acute Kidney Failure! They said I was within a hour or so from death. A lot of things happened that should not have. I have Legal Proof of Medical Errors.
So, now onto my dilemma.
I have been getting very mixed messages for years on my over all condition. I know my B.P. is low, my E.F. is very low (not sure how low, because I will not allow any sort of dye load). Post COVID I am borderline COPD, some ankle swelling. I refuse Lasix because it sends my systems out of control. No more Kidney Dyalis for me, not taking Lasix.
The problem is the Cardiologist tell me everything from I am A okay, to being surprised by my appearance.
The E.P.s I consulted with want to immediately rush me in and replace my CRT-D. I am not excited about the replacement, I feel a lot better without the device. My life has been a interesting trip, but all good things come to an end. I am not interested in dying but by bit, another Stroke, loose the ability to walk, maybe Alzheimer. Just last week the Cardiologist spent at least 30 minutes trying to convince me Palative Care was for me. The E.P. attached to the Cardiologist told me I was too fearful. Ha, I definitely am not a sissy, I just have some knowledge and experience. I really hated my CRT it always hurts, sometimes the itching is insane etc.
My Pulmonologist said I am in good shape and I do not need Palative Care as did my other specialists. I do have way too many allergies, major issues with anesthesia, I have been told I'm difficult to keep sedated,I believe that is true. I have popped out of anesthesia when having my shoulder put back together. Balancing anesthesia and my heart stopping evidently is challenging.
To whom do I listen? I have no idea. I sure dislike being bullied & I am not buying it.
1. Very concerned in regard to the anesthesia and due to my past history.
2. In my personal opinion hosts to Defibrillators should not be operating motorized vehicles on public roadways. Simply because there is no warning the Defibrillator is going to render a full strength correction that leaves the host unconscious. Vehicles cover a lot of ground in a few seconds. There are a lot of rules about people with seizures not driving, yet most places hosts to Defibrillators are legal to drive.
I am not insulting anyone, just stating my humble opinion.
I know this is too long, I will only leave it up for a short time. I am really frustrated. I am getting too many views on my condition and my best plan.
Welcome to our community! Thank you for sharing your journey with us. I am sorry that you are dealing with so much, but I do understand the frustration you are going through. My previous cardiologist told me that there was nothing wrong with me either and it wasn't until I had a stroke and was diagnosed with advanced heart failure did things change. You are in a unique situation though with the anesthesia, I remember my heart being so weak that the doctors could only put me into what they call twilight to do surgery. It is hard to trust people with your health because we haven't studied for years to become doctors. I think it's good to have an advocate who can speak for you whether that is a family member or a close friend. Mine is my mom, any time during my heart journey she's there advocating for me. I'm sorry I don't have the answers or the wherewithal to try to answer your question. I trust my doctors because they went to school and they are supposed to be experts, but I can understand why you are lacking in trust. I wish you all the best. -Olivia 
Thank you you for sharing. That is a lot, and you seem like a unique medical case in a lot of ways. I can only go back to when I was a VERY unique GI patient, and even now I had a major SCAD leading to heart failure so I am also a unique heart failure patient. Personally, I have found that sometimes it can become necessary to try several different doctors, until you find someone with the experience, skills and ability to tell it to you straight. Perhaps the mixed messages are that some people don't want to put the work in to sort it all out as you are not a 'cookie cutter' case OR they are simply overwhelmed themselves. It happens, unfortunately. As far as who is best for extra challenging cases, I have found the best luck at major academic institutions, and just keep on trying (if you can afford it). Like I've been to the Mayo Clinic, U of M, etc. I also just wrapped up a medical malpractice lawsuit, so I do not inherently trust my doctors. For example, I started my heart care journey at a different hospital and switched because it was not a good fit. Just because somebody went to medical school, does not mean they a) understand your condition (or conditions), b) want to deal with it all and c) speak your language. If I was you, I'd get a referral to the Advanced Heart Failure Clinic at the near major medical center and start from there? Can you get a regular echo to get your EF; you don't need dye to an EF. I hope that helps! Morgan (heart-failure.net Moderator) thank you for your comments. I realize we are in a Health Care Revolution, however, I want to know exactly what I am obligating myself to. I have more of a formal education and life experience than some of the M.D.s I come in contact with. I certainly know mistakes happen, I know the statistics are very telling about the numbers of medical professionals who are drug addicted, if anyone reading this is interested give "The Economics of Medicine" a read. I was shocked by the number of physicians practicing while being treated for drug addictions. I know my daughter's partner, his mother and two sisters all RNs are in and out of treatment while working with clients. The American public really needs to wake-up and become proactive in their search for appropriate treatment. Anyway that is my humble opinion.
Thank you for your inputThank you for sharing. I am sorry to hear of the struggles with your daughter. Do you have anyone that you can talk with to help you process things? Also, I've had therapist offer to come with me to doctor's appointments, just FYI. Good luck with the move to Canada! As well as finding an EP that is the right fit. It is so tough being different! Virtual hug. Morgan (heart-failure.net Moderator)
