Aortic Aneurysm Patient Survey

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Permalink Reply by jefferson helton on February 6, 2012 at 14:28

I asked my cardiologist this question my last checkup last week.  His answer was probably will stay on it for life.  Beta blockers (which Toprol is) protect your aorta and keep your heart from beating too much as well as lowering blood pressure.  By doing so, beta blockers help prevent redissections or anuerism formations.  If you can lower your blood pressure and pulse rate to acceptable levels without the medications, you can get off of them, but they want our b/p and pulse rates to be so ridiculously low, it would be very difficult to acheive without the medication.  He did change me from Toprol to a new beta blocker, Bystolic due to the side effects of exhaustion and depression which are common with Toprol.  Bystolic also promotes vasodilation and I have felt somewhat better since the switch.  It seems like most answers we get from all experts are rather "ify"

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Permalink Reply by Benjamin J. Carey on February 7, 2012 at 1:43

Hi Jefferson. This is an interesting topic and although I've spoken about this with my doctors and gained their opinions; it's been hard for me to find any concrete facts or details to support why or why not I should be on it. For example I didn't have high blood pressure before or after surgery. I've had low blood pressure my whole life, but I was kept on the Toperol because I had some arrythmia issues a couple weeks after surgery. They lowered the dosage after 6 months and then I stayed on a very low dose for a couple years. I got sick of taking the Toperol recently because I realized it was making me tired (no other side affects whatsoever). I also didn't see the reasoning for remaining on it. On my last visit to my cardiologist he agreed with my surgeon that I could go off it, provided that I agree to be weaned off and have the dosage cut in half for a month. If there are any problems (arrythmias, irregular heartbeats, pvc's) during this time or when I go completely off the drug I'll have to go back on. As I said, I never had any high blood pressure and my blood pressure is still very low, but I have to be honest I'm still a little nervous about going off. At the same time I want to be drug free. Thoughts?

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Permalink Reply by jefferson helton on February 7, 2012 at 3:26

I was never diagnosed with high b/p before dissection  and never took any prescription medications before that time. My ascending portion was fixed by replacing the damaged portion (about 5 inches) with a dacron graft, but I still have a decending dissection that they are treating with medication and monitoring with CT scans.

In addition to being a survivor, I have been a pharmacist for 36 years,  You are on a low dose of Toprol, having side effects, and have a history of low blood pressure, so going off slowly and under a physician's supervision makes perfect sense for you (although your are the exception to the rule). Where most people run into trouble is going off cold turkey which usually results in a "rebound" reaction where your blood pressure and pulse would shoot up dramatically and quickly,  Just take it slowly, follow physician's suggestions, and monitor your blood pressure and pulse carefully, especially during transition period.  I would also get your doctors to give you a target pulse and blood pressure for monitoring purposes.  Best of luck.  I am envious.  It would be so incredibly nice not to have to take medication again.                               jefferson

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Permalink Reply by Benjamin J. Carey on February 7, 2012 at 4:55

Hey Jefferson,

Thanks for the posts I appreciate it. I tell you, it amazes me how much good info I get from fellow Heartosauruses. I appreciate the feedback. That is definitely the most sound info. I've heard to date. Funny; one of my doctors is weaning me off the .25mg of toperol (cutting in half for a month then off), while the other was like just stop taking it your heart is fixed, you don't have high BP, you don't need it and you didn't have a heart condition other than the aneurysm before. I'm just a regular guy, no medical experience, but I think the weaning is a good idea too. By the way, could .25mg make me feel tired as I've felt sometimes being on it?

 

I'm just curious; what's up with your descending dissection? Was that there originally, or develop later on? On occasion I find myself wondering if I'm susceptible to additional aortic anerysms in other places. A friend of a friend had a fix when he was young, and developed another later in his 60's. Will that be me? This is all so freakish. I also wonder often how to account for weight lifting. I've always done a lot of weight training and I wonder if any of it had anything to do with the aneurysm. I mean normally when you get your BP taken in a doctor's office you're sitting around. Why is it that they don't take into account training with weights etc.... It's 2012 and it just seems to be that if someone works out whether its running, or weight lifting etc...that should be taken into consideration in the testing, No? I mean I suppose that is the point of the graded stress test and echo, but what about weight training? It's common........many people do it......why don't they test under that stress? -- Fun stuff all these things to think about huh? :)

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Permalink Reply by jefferson helton on February 7, 2012 at 8:45

thanks. You might feel tired  even breaking the Toprol in half, but should not be as severe. I have noticed from other survivors that they feel tired (and depressed) regardless of medication, so might be a combination of healing, emotional trauma, and medication.  It will be interesting to see how you feel when/if you decide to go off medication.

My aorta tore just below the heart and the dissection went both ways, ascending and descending. This is not that uncommon.  With all the testing you've been through, they would have picked it up long ago if that were your fate, so don't worry. My surgeon decided to take a "wait and see" approach to the descending part, which in my case was very long.  I was told never to lift more than 40 pounds and to keep my blood pressure as low as I could stand it in order to prevent further dissection or aneurysm formation. Others have been given lower weight limits, so you need to check with your doctor. Aneurysms generally develop slowly and are easy to detect with yearly CT scans. They are also treatable with surgery if necessary once/if they grow to a certain size. Olympic and serious weight lifter's systolic blood pressure can typically go as high as 300 during heavy lifting and dissections can happen as a result. I was also told to exercise daily, but in moderation, so mainly just walk/jog. Again, this may be due to my descending dissection being present, so check with your doctor regarding limitations. My surgeon and cardiologist told me that my dissection was a genetic fluke that was unique to me and probably would not be passed on or was passed down to me.  I had no family history.  They also said that it had nothing to do with cholesterol, weight, my blood pressure was normal. It just happened.  I had a physical a month before and all was fine.  This does make it freakier, since there really was not a trigger. I have often read from our colleagues that fear stays with you...fearing that  every chest pain or twinge is something serious. "Ticking time bomb" is a phrase that I have read used by several survivors. This fear has improved dramatically with time, but is still there occasionally and apparently normal for dissection or cardiac patients.  My physicians have told me that I should live a "normal" life span if I watch how much weight I lift and keep my b/p down even with the descending dissection, but still scary at times.  Another common feeling we all seem to have is wanting our life to go back to what if was before dissection. I have found a "new" normal...not really better or worse, just different.

We are both incredibly blessed.  It's been hard to find survivors outside this group. I am thrilled you are doing so amazingly well.  Just keep monitoring your b/p, pulse, and report any irregular heartbeats to your doctors and you will be fine.       jefferson

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Permalink Reply by jefferson helton on February 7, 2012 at 18:32

You ran a marathon????? I beat the odds, but brother, you totally nuked them! Amazing and inspirational.  I will log off and order your book. Incredible story!  jefferson

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Permalink Reply by Benjamin J. Carey on February 8, 2012 at 2:24

I'm convinced all the heavy weightlifting and endurance training I did in high school and through college, and for some years after contributed to my aneurysm. Perhaps the walls of the aorta were weak already, but I used to do some hardcore weight training. I also took a supplement called ripped fuel for 3-4 years in college. It was basically ephedrine, and I've read stories of how it affected peoples hearts. Not necessarily created aortic aneurysms, but damaged their heart cells etc.....which was discovered in autopsies. I guess what I don't understand is why doctors don't study the affects of weight training in more detail and drill down. I realize most aneurysms are not caused by weight training, but I sure do know a lot of bodybuilders, athletes, etc....that have either had aortic valve issues, aneurysms, or dissections.

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Permalink Reply by jefferson helton on February 8, 2012 at 14:07

pull up www.pulitzer.org/archives/6797 -- article will answer questions... in addition ephedrine (or pseudoephedrine) is main ingrediance used in street production of methamphetamine and there are definate links between amphetamine/cocaine use and dissections/aneurysms.  jefferson

 

 

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Permalink Reply by jefferson helton on February 8, 2012 at 14:22

I decided to share link with group.  I thought it was really good information.

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Permalink Reply by Benjamin J. Carey on February 13, 2012 at 0:24

Great information. Thanks for the link. That makes a lot of sense. That's a great article Jefferson, thanks for sharing it!

bjc

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Permalink Reply by jefferson helton on February 13, 2012 at 2:56

thanks. I just finished your book.  Absolutely amazing.  Thanks for writing it. You said a lot of things that needed saying and said it extremely well. I could relate to so much of it...especially hospital/surgery part.  thanks again, jefferson

Permalink Reply by Benjamin J. Carey on February 13, 2012 at 7:11

Nice meeting you Jefferson. I'd be honored if you posted up reviews on Goodreads.com and Amazon.com. No secret that my best reviews have been from heart patients because they can really identify. Thanks for the kind words.

bjc

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