Living with an Aortic Aneurysm

Heart health and blood vessels
1

Hello,

 

I've been diagnosed with an Ascending Aortic Aneurysm size 4.5 and I inundated  with stress and depression. Like most of you this was completed out of the blue and I'm currently in the researching stage of dealing with this. Currently my doctor has me on Valsartan, Coreg and Lipitor hoping to stop the growth. He stated that people can live with this for decades if you're able to stop the growth. My questions to all of you is are there any members on this board who have been able to successfully stop the growth for many years (five or more) and if this is a possibility. Unfortunately Ascending Aortic Aneurysm's are only repaired via open heart surgery and I'm only 39 with kids, so I'm having a hard time wrapping my head around this whole thing. Fortunately I was able to find this site and it's been providing my strength during this difficult time. Any insight would be greatly appreciated .

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Hi, I am in a very similar situation.  I was recently diagnosed with Aortic Root Ectasia which depending on which cardiologist you talk to you could be consider an aortic aneurysm or the stage right before an aortic aneurysm.  I am 6'2 about 230lbs, 42 years old with young boys and my sinus of valsalva is 4.2 CM.  My Echo showed 4.2CM, CT showed 4.4 CM and finally had an MRA which is most accurate at 4.2CM.  I was definitely a nervous wreck about it for a few weeks but then became educated.  Yes, you should be worried but don't let it get the best of you.  Become educated and then just cautious.  Good thing is you know what you have and now you can deal with it. 

There are several things which are consistent amongst that cardiologist when it comes to aneurysms:

(1) Reduce your blood pressure.  Mine was 120/80 but have been prescribed losartan to reduce it even more. 

(2) No heavy lifting.  Weight lifting used to be a huge part of my workout, unfortunately you do need to restrict how much you lift.  I had two cardiologist advise to restrict to no more than 50 lbs.  

(3) I have also had both cardiologist suggest a low carb diet which is better for your heart and maintaining an appropriate weight.  I stuck with the low carb diet for the past 6 months and lost almost 20 pounds and feel great.  

Im a data guy, so this might help....

My current cardiologist suggest that your aortic root is relative to your height and weight or body service area.  Here is a link to estimate yours..

https://www.valleyheartandvascular.com/Thoracic-Aneurysm-Program/Calculate-Your-Relative-Aortic-Size.aspx

You can then compare to this risk chart.

https://openi.nlm.nih.gov/detailedresult.php?img=PMC2605304_yjbm_81_4_175_g06&req=4

when you research normal size I have found several consistent data points suggesting normal range for Sinus of Valsalva, i.e.  range from 3.4cm-4.0cm and 2.9cm to 4.5cm.  In theory you seem to fall within normal range (similar to myself) however I decided to treat as an aneurysm which means change of diet, workout routine, 6 month MRA and blood pressure meds.  I am not being paranoid about it, but cautious.  

The above was my reply to a simliar post a few months back. Ironically, I just saw a surgeon who specializes in aortic repair.  He validated what i mentioned above, and good chance as long as you keep your blood pressure below 120/80, dont smoke and keep a healthy lifestyle..it may never grow.  

Hope that helps a little, good luck!  

Happy to answer any questions you may have.

Dan 

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How much valsartan and CoReg are you on? Is your blood pressure ok?

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I actually have an appointment with my cardiologist tomorrow to talk about what else I can do to stop/slow growth. When my ascending aortic aneurysm was discovered it was 4.1 cm. That was two years ago. It has grown to 4.5 cm. I will let you know if I learn anything new. I am not currently taking any meds but have been able to keep my b/p down with diet, exercise, yoga and maintaining my weight. I am always looking for what else can be done to avoid surgery. Learning that you have an aneurysm is very stressful but with time the stress lessens and you learn to wrap your head around the idea and move on with life. It becomes a new normal. This site has helped me alot in the past year since I discovered it. Hang in there- you are not alone. ☺

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buckpie1978

True; one cannot deny living with an Aortic Aneurysm is more than possible, though initially, it is a major shock to the system which can be an overload of information to the mind and senses...

There are many sites to help you get through this, and these contacts are important to make connections that break down the Tec and professional information into realistic meaningful realities by those who live with it.

My internal pet is a Type B, but with full dissection from the arch down to the legs.

Now.. Size, as they say, is not all it is crapped up to be... Mine is 8.5!

This info is misleading because male and female are different in overall sizes, plus, it starts small out of the heart grows big over the arch largest part 4.5 in men 3.5 in women and descends (narrows) until it reaches the legs... The size... Is not the same anywhere... So where it is. Is more important in size comparison and what gender you are... plus age... Hope this helps... As a start...

Yes. It can stop growing. But that is complex to explain at this stage.. suffice to say, mine grew from 6.5 to 8.7... Bear in mind. I only have 1mm of wall left through the dissection complication... I am medically controlled with drugs... My BP is strictly controlled.. So is stress levels..as with activities... And diet..lastly lifestyle. And it is reducing two years on the decline... Happy days!

6

I am living at 4.8cm root and 4.6cm ascending. There are a couple of things to keep in mind. First of all, they won't operate in the US until it gets over 5cm unless there are mitigating circumstances like genetic connective tissue disorders etc.  There are many many people who have successful operations and go on to live long and full lives. The operation has its risks, but it is very routine for the people who do it, but I know from personal experience there are many who are even much younger than you who have had very successful operations to correct it.

Please remember you are lucky. I spent the first month or so in grief and despair, but as time went by I realized how to live each day fuller, to let the things I hate slip by, to learn to put stress aside. Live in the moment if you can, do what you can for yourself for the day, control your blood pressure, the first and foremost way to slow or stop growth.

I do know someone who has lived at 4.6cm for over ten years, but the stress will make that harder to do. Anxiety is terrible for the blood pressure, so do everything you can to try to live in the moment. The Cleveland Clinic is perhaps the best place in the world to get it taken care of, and they have a lot of resources to help learn about this. Hopefully you will learned what I have, in that while horrifying at first, this is not even close to the worse medical issue a person can have, especially when caught and cared for before dissection or rupture.

Be well, take care of yourself, and try not to let this dominate who you are.

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Hello welcome to the boat lol mine has a few holes in it but dipping the water out to stay afloat helps keeps the heart exercising lol jk Sorry for the joking its just the way i deal with it im a 43 yr old truck driver trainer that was in a wreck breaking my back and discovering this ticking time bomb in my chest i have the (TAA) 4.4 which disqualifies my Commercial Drivers License and since im injured and cant work my employer is only obligated to workers comp meaning all the insurance i paid while working doesnt count 3 months out of work on workers comp my employer stopped paying my ins. as soon as they could leaving me with no insurance talk about stress when u dont need it this forum has help me alot also might not get the answers u want but you will see your not alone in the battle . Now as for stopping the growth of a aneurysm i havent heard ive only read where they might grow very slow that u might never need surgery but all i know is that if i keep God first i have nothing to worry about dont believe he brought me this far to leave me now

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Hi Buckpie1978, 

I am a 32 year old male currently living with a 4cm Ascending Aortic Aneurysm.  I have been trying to deal with this for a year now and can say it does get easier to live with it, through support networks might I add, whether this is counselling or just friends and family, also this, talking about it, accepting what is happening.  I have my good and bad days, but I am thankful they have found it now rather than waiting on an acute problem.  

I am due to see my consultant next month and that will be a year since seeing them, and I have a lot of questions and concerns I want to raise.  Currently I am on no medication to control the growth or blood pressure, the advice that was given to me was, no sports, heavy lifting or strenuous exercise.  I have quite a demanding job and can be stressful at times, I also suffer from anxiety, but this does not seem like grounds for any medications to reduce my blood pressure, last reading I had done at the doctor I was 123/98, which they say is fine with my age.  

Not sure if anyone else experiences the same as I do, but they also say nothing to worry about you are young and healthy, your blood pressure is fine.  I feel it is their lack or awareness and knowledge of an aortic aneurysm.  I hope you don't experience this. 

I do not hold much of an outlook for myself due to family history of aortic disease, My father had a dissection 2 years ago, My uncle (dads brother) dad from ruptured abdominal aortic aneurysm and so did my grandfather.  

In short, things will get easier, cherish everyday and every moment.  We are the lucky ones to have found out before it's too late.

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Hi dresc0, you are very young and have a long life ahead of you. Your b/p sounds high for someone your age. I was told to keep my pressure around 120/70 (a few points in either direction). You may want to get another opinion regarding meds and b/p. Best of luck to you on this road we travel.

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I would agree about getting a second opinion.  I was told to try everything I can to keep my BP *under* 120/80, and I am struggling with that a little. That 98 sounds a bit on the high side, and high BP is absolutely your worst enemy right now. 

As to your family history, see if you can get genetic testing. With that history, it could be vital. Having connective tissue disorders can change the margins for when they operate potentially by a wide margin.

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Thank you all for the responses, you're awesome! I live in Los Angeles so we have some great cardiologist’s in my area, however I'm having Dr Eric Roselli from the Cleveland Clinic give me a second option. Regarding medications, I've never really had high blood pressure around 125\85 but my Doctor stated they want to relieve any pressure off my aorta so 110\70 is ideal for me, also Beta Blockers, ACE Inhibitors and Statins are known to have benefits for TAA's even without BP issues. I'm a bigger guy at 6'2 270 pounds so it isn't HUGE yet. I'm very fortunate to find this site and I don't feel alone in this struggle, we're in this together!

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Hi there

are you traveling to Cleveland or just having a phone consult?

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Over the phone, but $600 fee.

14

All our symptoms vary as with our personal history... Advice is key. but is a personal experience, not to be specific or generally applied. It takes around 3yrz yo work out what is the best plan for you when you learn to balance all the matters... Neither let the Professionals dictate or advice to be true... You... are what matters!

To reduce my aneurysm my BP was reduced to an Average of 80 with 15 up or down is the target. I go as low as 52bmp over 53. (Close to shutdown..)

But it is allowing the damage to repair... Extrem, yes, and not all can cope for many reasons... But its working for me... All options considered until the fat lady sings!

Today is a good day...Do Don't street.. That is worse... Count the blessings, not any losses.

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Let us know how it goes and how long it was...will he have all your records?

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Had my appointment with my Cardiologist today and my blood pressure in under control with my medications, averaging around 108/73. I have my 3 month scan in August and I'm praying to get good results. Wish me luck.

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That sounds very positive. Wishing you good luck with your next scan!

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Just found this site, very depressed about being recently diagnosed with an Ascending Aortic Aneurysm measuring 4.7cm. It was found from a CT Scan I had and now I am trying to determine what my life is going to look like. I am a recently retired 66 year old male who works out every day, who until now was loving life. I just returned from trying to work out, at the same time wondering why waste my time. 

I have a number of cardiologist as friends, my wife is a cardo RN, and so I am hearing about it from all directions. From past CT Scans, I evidently have had this since 2012, but no one picked up on it until a radiologist went back and review the scans.

It has been stabilized for about 2-3 years. Going to see my formal cardiologist this week. 

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Hi Doug.  I'm so sorry for what you are going through.  I am a 63 yr old recently retired nurse and I have known about my Ascending Aortic Aneurysm for about two years.  It is very scary and sometimes depressing but as someone who is living with this please know that the situation will get easier to live with. You do adjust and eventually don't think about it constantly. On this site you will find people who have lived with their aneurysms for many years, some who have had surgery and many who have chosen not to or are in the "watch and wait" period.  My aneurysm measures 4.5 cm and from what I have learned doctors do not want to consider surgery until it is at lease 5 - 5.5 cm unless you have extenuating circumstances.  Some people have aneurysms that remain stable or grow very slowly.  I also work out and have learned what I should and should not do but I believe it is important to keep your cardiovascular system strong to possibly slow the growth and also to be in your best condition if you do need to have surgery down the road.  You are lucky that your wife is a nurse.  We are great at researching topics and asking lots of questions.  :-)    My advice is to do your research (but reputable sites only), start making a list of questions for your cardiologist and try to keep your blood pressure down, which is not always easy in this situation.  Many people are living with aneurysms and don't know it.  At least we now know and can take steps to deal with it and hopefully prevent complications.  No one knows what life will bring tomorrow so this is a  reminder to enjoy each day.  Please keep us posted as to what you find out and how you are doing.  There are many of us out there who share your situation.  Keep the faith!

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What and how much are you taking?