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JohnWBurns
@johnwburns

Posts: 300
Joined: Jun 02, 2015

"Mild" aortic stenosis.

Posted by @johnwburns, Jul 1, 2016

I have a laundry list of major things going on and I’m trying to figure out which 1 or 2 is hitting me the hardest in terms of fatigue and feeling generally lousy. I have a few cardiovascular issues that I know about, among them a small aneurysm on my ascending aorta, autonomic neuropathy, mild aortic stenosis, and mild left ventricular failure. Recently, my heart rate has dropped from about 70 beats/min to about 55. I’m correspondingly tired and my exercise tolerance is down. Per the pharmacist and the cardiologist it may be a drug reaction, either hydroxychloroquine or duloxetine (both recent) or both or maybe the stenosis is just getting worse along with the left ventricular function. I guess that there’s a question here somewhere. Has anybody had somewhat sudden bradycardia tied to either or these drugs or to stenosis? The cardiologists seems to think that I’m asymptomatic which is peculiar since I am clearly taking a hit.
Thanks.

REPLY

@johnwburns John watch out. I had this problem and fainted twice. The second time I broke my shoulder big time. Problem solved with a pacemaker. Cannot go below do bpm. PS: get a new cardiologist. RonBee

@ronbee

@johnwburns John watch out. I had this problem and fainted twice. The second time I broke my shoulder big time. Problem solved with a pacemaker. Cannot go below do bpm. PS: get a new cardiologist. RonBee

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Thanks. The timing tells me it could be drug related. The cardiologist admits that but doesn’t seem to care. Time for a new doc but finding one is a bigger hassle the older I get. This is my 3rd cardiologist in 2 years.

Hi @johnwburns. Somehow I missed this message. You situation is beyond the scope of my knowledge, but I’m tagging a few members to bring them into the discussion. @balubeje @jimana @sotiredofit @Weedy @hopeful33250 any thoughts on the symptoms John is experiencing?

@johnwburns are you feeling any better yet? Any changes in the past 3 days?

@johnwburns I wish I had wisdom and/or experience to pass on to you, but I’ve never experienced that before. However, I would encourage you to pursue an answer. Keep “bothering” the doctors with your questions and concerns. If you don’t feel like you are being heard, there is always the option for a second opinion. Your symptoms sound like they are wearing on you and they should be addressed. I think of getting good medical care as being “process-oriented.” You need to communicate until you have answers. My cardiologist at Henry Ford in Detroit has said to me, on more than one occasion, that it is important for each person to be their own patient advocate. He is a great guy! Best wishes and let us know things are going for you. Teresa

@hopeful33250

@johnwburns I wish I had wisdom and/or experience to pass on to you, but I’ve never experienced that before. However, I would encourage you to pursue an answer. Keep “bothering” the doctors with your questions and concerns. If you don’t feel like you are being heard, there is always the option for a second opinion. Your symptoms sound like they are wearing on you and they should be addressed. I think of getting good medical care as being “process-oriented.” You need to communicate until you have answers. My cardiologist at Henry Ford in Detroit has said to me, on more than one occasion, that it is important for each person to be their own patient advocate. He is a great guy! Best wishes and let us know things are going for you. Teresa

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Thanks for the encouragement. I’ve posted about this problem under about 4 different threads. I think that I have it figured out. Either the last thyroid dose adjustment was inadequate or my heart is slowing down on its own, or both. I have the mildest level or heart failure so maybe it just goes in abrupt increments. As far as doctors, they treat you differently after you hit 65 and/or go onto Medicare. When I had cadillac level insurance, they jumped on things. Now, call us if you’re not dead. This is at Mayo or anywhere. I’m sure that this is common. Anyway, thanks.

@colleenyoung

Hi @johnwburns. Somehow I missed this message. You situation is beyond the scope of my knowledge, but I’m tagging a few members to bring them into the discussion. @balubeje @jimana @sotiredofit @Weedy @hopeful33250 any thoughts on the symptoms John is experiencing?

@johnwburns are you feeling any better yet? Any changes in the past 3 days?

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No problem. I saturation bombed various threads with variations of this and its an unusual situation. Pretty sure not a drug reaction, which is good news. Might be my last thyroid adjustment was inadequate or my “mild” left ventricular problems are getting worse. This getting old thing is getting old. I’ve looked under every rock so its up to the cardiologist and the endocrinologist when I see them next month. I did learn more about Sjogren’s than I ever wanted to know. Thanks a million for the interest.

@johnwburns, I noted your feeling of abandonment by doctors after Medicare becomes the primary health care funder. I’m going on 81 and have nearly 16 years experience with Medicare, and I’ve occasionally had the same feeling. I dealt with it by finding another doctor — sometimes still another and another — until I found one that cared about me and showed it. This may be easier for me than many others, because I signed up with an HMO providing services under Medicare Advantage. Interestingly, my HMO last year switched hospitals from a highly rated big one nearby to another large one — this one had signed on with Mayo Clinical Network to guide management of the hospital. It is becoming a pretty good source of medical care in a major suburb of Washington DC. Although I haven’t had to use it yet, my 70-year-old quadriplegic brother-in-law was in and out of that hospital several times in the last two years, so I got to know it well. As @hopeful33250 emphasized above, you’ll regain your faith in the medical system as you take over being your own patient advocate. Let us know how we could help you with that.

@predictable

@johnwburns, I noted your feeling of abandonment by doctors after Medicare becomes the primary health care funder. I’m going on 81 and have nearly 16 years experience with Medicare, and I’ve occasionally had the same feeling. I dealt with it by finding another doctor — sometimes still another and another — until I found one that cared about me and showed it. This may be easier for me than many others, because I signed up with an HMO providing services under Medicare Advantage. Interestingly, my HMO last year switched hospitals from a highly rated big one nearby to another large one — this one had signed on with Mayo Clinical Network to guide management of the hospital. It is becoming a pretty good source of medical care in a major suburb of Washington DC. Although I haven’t had to use it yet, my 70-year-old quadriplegic brother-in-law was in and out of that hospital several times in the last two years, so I got to know it well. As @hopeful33250 emphasized above, you’ll regain your faith in the medical system as you take over being your own patient advocate. Let us know how we could help you with that.

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Thanks for the input. Learned something here, I need to look into this Mayo Clinical Network idea. Believe me I usually push back on providers big time but I just relocated back to Arizona from Oregon. Long story. I had been a non-Medicare patient at Mayo in Phoenix prior to moving to Oregon and I found the experience to be very different when coming back as a Medicare patient. The urologist I just saw for a prostate cancer follow-up screening didn’t have any of my notes, test results, nothing. A joke. A big part of what I’m dealing with is where I want to end up. I thought that my options were limited to being near a primary Mayo site, Phoenix, Jacksonville, or Rochester, but it looks like this Mayo Clinical Network idea may give me the option of casting a wider net. I prefer to have healthcare under one roof so an HMO is likely something that I should explore. I have heart issues, cancer issues, endocrine issues, autoimmune issues, sleep apnea and spinal stenosis so I need to find somewhere where there is general expertise if I’m going to keep this show on the road for a while longer. Again, thanks, very useful info.

@johnwburns Here’s more information on Mayo Clinic Care Network http://www.mayoclinic.org/about-mayo-clinic/care-network

@colleenyoung

@johnwburns Here’s more information on Mayo Clinic Care Network http://www.mayoclinic.org/about-mayo-clinic/care-network

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Thanks, I’ll call around tomorrow.

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