Living with an Aortic Aneurysm

Posted , 14 users are following.

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 .

0 likes, 29 replies

Report

29 Replies

Next
  • Posted

    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 

    Report Reply
  • Posted

    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. ☺
    Report Reply
  • Posted

    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!

    Report Reply
  • Posted

    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.

    Report Reply
    • Posted

      James, thank you so much for your post! Incredible thoughtful and helpful. I am in a grief stage right now. Reading your post was the best I thing

      since I learned about my diagnosis.

      thank you again.

      Elena

      Report Reply
  • Posted

    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
    Report Reply
  • Posted

    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.

    Report Reply
    • Posted

      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.
      Report Reply
    • Posted

      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.

      Report Reply
  • Posted

    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!

    Report Reply
    • Posted

      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.

      Report Reply

Join this discussion or start a new one?

New discussion Reply

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up