I've been under doctors care for 4 years now after finding a 4.5cm ascending aorta aneurysym casued by a bi-cuspid aorta valve. I have MRI's and or CT Scans 2 X's a year, and it hasn't grown. No-one seems concerned about it until it grows to 5 cm or more. I'm 56 yr. old female, in good health, taking beta blockers and high blood pressure meds, twic a day.
Recent Echo stress test showed no problems. I work out at a gym 4-5 times a week with weights and cardio.
Other than being tired and gaining weight due to a slower metabolism, I feel pretty good.
Problems? My family hates that the unknown could trigger a rupture. They feel I should have surgery to repair the aneurysm and replace the valve to get on with my life without that fear.
Just curious how others manage this same type of health risk.
I'm Paula and I live in Helsinki, Finland and I'm 46 years old.
I have been in doctors care all my life. I have had a congenital aortic stenosis and bi-cuspid aorta valve, which was repared with Ross Procedure: my aortic valve and aortic root was replaced with my own pulmonary valve + root and to the pulmonary position I got homograft. Now after almost 7 years of worry-free living I am facing a new open heart surgery again to replace a dilated section of my aortic root.
The dilation is life threatening, because of the risk for aortic rupture! The aortic root wasn't dilated seven years ago when they did the Ross. When I was tested 6 months ago the dilation was 4.9 cm and now it has generated 1 mm more and was 5.0 cm when I was tested last week. I have have understood that the 5.0 cm is the limit when they do the surgery in my case (and yours too), because I had congenital aortic stenosis (of course there is different opinions what is the optimal time for surgery).
It is somehow worse now to get ready for the new surgery, because I know what to expect! It is very difficult (as it was also before the first surgey) to motivate myself that I relally need this surgery, because I feel that there is nothing wrong with me and I am in a perfectly good condition.
Back to your question, I think that I have managed quite well with my heart problems and also with this aneurysm it easy because you don't feel that you are sick. Of course the coming surgery itself is scary and of course you think a litlle bit differently, more seriously about the aneurysm too, because it must be quite worse, because they want to take a risk and do the surgery. But I try not to think about too much and think that life goes on now and also after the surgery.
By the way is it really healthy for you to lift weights, hopefully thouse are not heavy ones? I got on Tuesday my first prescription of Beta blockers, I don't have high blood pressure, I just got it to lower the blood pressure in excertion/stress, because of the aneurysm.
I know exactly how you feel. I was always fit all my life with running and lifting weights and remaining thin. In June of '05, the doctors at Mayo Clinic here n Jacksonville, Fl found through an incidental test that I have an aneurysm near my aortic root that measures at 4.2. I have an echo and a ct scan 6 months apart from each other every year, so, I am being checked every 6 months. I am always sick to my stomach before I go in for my test which ever it is at the time. So far, my MONSTER has not changed...but as you and I know from reading other posts that could change anytime and it is HELL to live with. We don't have outward symptoms so people forget about what we are living with. I hate the physical limitations and the BETA BLOCKERS make me feel fatigued and weak. I walk everyday approx. 4-5 miles. Mayo told me not to lift anything over 10 lbs and another doc told me 20 lbs. Some say just don't strain. WHO KNOWS??? I have also noticed in the past 5 months that I am losing hair and I did some research and found out that that is one of the side effects of Beta's. This is sickening to me. I would like to drop about 6 lbs. and it is so hard to do. You have to just about starve yourself to make any headway. Once again this is caused from the Beta's. You cannot win for losing here, nevermind, the worry we live with. I am sick about losing hair. Everytime I get out of the shower the drain has more than usual hair in it. I wish there was something else I could take and not have this problem. Please know that there are many of us out here just like you living with these MONSTERS. Stay in touch....Christine in Florida......
Have you had your surgery??? If you have, I do pray that you are on the mend and doing well. I just read your post. What worries and fears we all live with, huh? I am sorry for yours. Please update us on yourself. Christine in Florida.....I had a dear friend who was from Finland...her name was Raija....she was one beautiful woman. Take care....
Thanks for your reply to my previous posts, you, who share my fate!
The surgeons and doctor had their meeting and they desiced to wait and see, I have my next check up on January. The reason to postpone my surgery can be also that the doctors just couldn't yet decide (this is of course my wild guess), what they will do in the next surgery, because there is so many options
Of course they may somehow fix now just the aneurysm in my ascenting aorta, or I quess they could chage also the fully functional aortic valve (with mecanical), or maybe even but my own pulmonal valve back to my pulmonal position were they took it in the first place and made the aortic valve I now have to me. I have in pulmonal artery now the homograft valve which may degenerate in due course. Or they could chage all my valves (aortic and pulmonal) to mechanical ones (I don't feel very confortable with that option)! That is what the doctors might want to do to avoid that possible third surgery. I don't know do I fancy too much, with all these options, are those all even real? Do you think those are all possible? I know this is not “a game” but what do you guess they will do?
I got my first beta blockers prescription two months ago, because I acctually don’t have high blood pressure, but I just got beta’s to avoid the possible rupture of my aorta. I like to ask you one question Christine how strong is your medicine? Mine is very mild only 23.75 mg so I hope that it wont cause any weight gain or make me loose my (already quite thin) hair .
I am happy to hear that you have had a friend from Finland. Raija is quite common Finnish name. I found out coincidentally a couple of years ago that I acctually have a bunch of relatives in USA, but that is acctually another amazing story….
I just got the news that on routine CT for my renal issue they found ascending aeorta aneurysm 4 cm. I just turned 40 and enjoy life. I feel like a brick fell on my head. I work hard in a very stressful job. Should I cut my hours? Can I lift things? Can I go to the gym?
You made ME feel better. I had the EXACT same problem, except my valve was TRIcuspid, and merely ACTING like a bicuspid. Well, they claim I was practically on deaths doorstep. I asked the doctor how long I would have lived without the operation, and he said about 5 days. Well, I had the surgery, about 4 years ago. It took about 1 week to be real lucid, about another week(at home) to get some of my strength back, and they had nurses check in on me once a week for about 6 weeks more. I had a mechanical aortic valve and root(although it WAS for an ASCENDING aortic aneurysm) put in. I STILL remember when I first woke up, when I was winded walking 40 feet, etc... ALL due to the operation. Today I am FAR better.
So how did you make ME feel better? I have a CT scan only once a year, but I skipped the first 2 because of work. ALSO, my aneurysm is "only" 2.5cm. I was APPALED when I heard that, but the doctor says he has patients that lived their whole lives with worse.
As for weight? They told ME 35 pounds! They told me NOT to work out. I just started to go against that early this year. BTW I take metaprolol(aka toprol) 100mg. IT doesn't make me tired or week.
Paula. I do hope you are doing well. I was hoping you would post again and keep us updated on what the doctors want to do. Sorry, I did not get right on and respond. I have been busy in my house trying to get it ready to sell although I think it will be futile in todays market here in the USA. My husband and I had already started a home in another state when the housing market here went bad, so, we are stuck. I did think about you. I wish you the best and hope everything is going well for you. I AM STILL SO UPSET about my hair loss from the Beta Blockers. I never knew hair loss is one of the side effects of Metoprolol that I am taking. I take 25 mg 2 times daily. Doesn't seem like much compared to others, but, it is enough to make me feel fatigued all the time. I can live with the fatigue, but, the HAIR LOSS has really got me worried. I talked to oneof the primary docs here at Mayo last week about this and she is looking into it for me. I pray that there is another Beta that I can take that will not cause HAIR LOSS...The diagnosis of these monsters is hard enough to live with only to be magnified by hair loss. What a mess, huh? What did I do to deserve this? Funny what we think about. I hope all the others posting on here are doing well. My next 6 month checkup is in Aug. where I will get a CT scan w/contrast to see what is going on....Always a scary time waiting for the doc to call and let you know whether or not your aneurysm has grown or remained the same. Only those of us that have these can UNDERSTAND...Take care and I hope that ALL is WELL with you....Christine in Florida....
i just wanted to let you all know. There are alot of us who have to live with this Monster on a daily basis. Im 24yr old female facing my 3rd heart surgery soon. My 1st one was at seven wks old to repair a patent ductus ligation at that time I was diagnosed with a aortic bicuspid valve. At the age of 20 I had open heart surgery for a ascending aortic aneurysm measuring 4.6cm and valve sparing surgery. I had alot of complications and was in and out of the hospital for about 2 months. I developed pericardits had to get blood transfusion. It was absolutely horrible, and on top of all of that they told me after all the swelling went down I had another aneurysm but one that was alot worse than the first one, a transverse arch aortic aneursym measuring 4.5cm and also developed a coarctation of the aorta along with it. Now at 24 im facing another surgery to repair my aortic valve I recently went to Duke to see my cardiologist and he said my left ventricle had become dilated measuring 6.2cm. normal size is 5.0cm so now its a waitng game. I go back to Duke in sept for another MRI to see where all the numbers are and how bad my valve is leaking, last time my MRI said my stenosis was is the mod-severe range. I guess they are wating till it reaches severe range till they do surgery again.. I just wish they would go ahead and fix everything. living with this is hell...Im scared to death that one day the monster is going to rupture and thats it...for anyone who has had multiple surgeries is the 2nd one worst than the 1st????...just curious...
Yeah, it does feel like a ton of bricks hitting your head. I found out about aortic problems a few yrs ago - aortic root at 3.5cm, but a bicuspid valve. It kept growing - and with a young family to take care of, it was really stressing me out. I prayed for Jesus' help and, three days later, I get an email about a potential cure. Johns Hopkins researchers (among others) are studying the use of blood-pressure meds (ARBs and ACEi's) in high doses to halt or reverse aortic aneurysms. I got on the meds immediately (this is in 2006) and my aorta has shrunk back down to normal. Countless other people w/ the same story. If you want to know more about this treatment, click my screen name and view my recent replies to other people. Not sure about its efficacy in bicuspid aortas, because there, I believe the pathology is largely due to the bicuspid valve and not so much the structural integrity of the aortic wall (but not sure).
i recently was told i had an aortic aneursym on the root of the heart. I am a healthy 45 year old smimming instructor and am new to this world of things! it was a major blow to be told and would like to know if swimming can make it grow? and also some people have told me that they have been testing blockers. does this stop the aneursym from growing and will they reduce it in size? if so what are these blockers called?
Listen to me very carefully. The "blockers" you have been told about could have been referring to "beta blockers" or to "angiotensin receptor blockers." Most doctors are behind the cutting edge research and will prescribe beta blockers for this condition. Unfortunately, they are minimally helpful. The doctors who keep up with the cutting edge research know about angiotensin receptor blockers (ARB). These drugs, when taken in sufficiently high dosages, have been shown to halt and in many cases reverses aortic root growth. Generally, for the average sized person, the maximum FDA-approved dose of ARB is required to see effect. For larger people, a higher-than-max dose is required.
This generally works for people whose aneurysms are not too big. If it's too big, it may require surgery. What is the current size?
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