Somewhat new to AAA, new member to this site - my rant and questions

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Hi everyone, my wife turned me onto this forum which she tells me has been excellent with members providing support to each other, whether it's answering medical questions, advice on care and maintenance, or simply being there for each other. 

I will keep my history as brief as possible: I was diagnosed with AAA approx 4 years ago, with Thoracic at 4.5cm. I went for a 2nd and 3rd opinion, 3rd was done 2 years ago at a hospital I work at, was told they couldn't find it. So I was happy and thought I was in the clear. 

I studied TaeKwonDo in my teens and 20's, got into bodybuilding/powerlifting in my 20's and early 30's. Over the years I got lazy, put on weight, have been fighting to get it off and keep it off. Had some odd chest "twinges" (felt more like light tickles, occassional feeling of someone pinching your skin), and 3 incidents where I was gasping for air and panicking (BACKGROUND: despite gaining weight, I have been able to and still manage to get 30-45 minutes of brisk walking in (3.2 to 3.7), stationary bike 20 minutes @85-105 rpm, lap swimming (taking it easy and slow). These 3 episodes included excessive dancing at my friends' wedding, being chased by a queen hornet and running from it and swinging a walking stick at it, and recently climbing 8 flights of stairs at work. This was NOT a simple "whew I'm tired and a little out of breath", these were I cannot breathe fast enough and feel like a bear is squeezing my ribs, I can't get air fast enough and panic is setting in. 

So I decided to go back to cardiologist #2, who has done just about a full workup minus a CT scan, which is most likely coming soon. He and the echocardiagram tech confirmed I have a 4.5cm AAA, which THANK GOD hasn't grown since first discovered 4 years ago.

I was told STOP weight lifting, no smoking (I had an occasional (1 every 3-6 months) cigar), and to focus on losing weight. No moving heavy furniture, no snow shoveling (which I did a little this last winter). So I have stopped all these cold turkey. But I have so many questions......please bare with me, answer whatever you like, add any comments, etc

1. Why did this have to happen to me (I'm sure we have all asked this)

2. As a bodybuilder/powerlifter, why did this happen to me? Does this affect other lifters as well and they don't know it? Why are some susceptible and not others? 

3. Did my being overweight cause this? 

4. How quick or slow will this enlarge? 

5. What can I do to prevent/slow growth as much as possible?

6. Okay to take viagra (small dose) if I need to?

7. Okay to scuba dive? 

8. Will taking a blood thinner (like Coumeden) or a beta blocker (like Norvasc) help?

9. Does my BP really need to be down to 105 to 110 systolic? My BP has always been good but have not hit those numbers

10. How do I know if I have bicuspid aortic valve issue? Cardiologist question?

11. Running out of breath in those 3 episodes: I panicked and thought I may be having a heart attack. Was it? Do I have lung issues as well? (going to make appointment to see a pulmonologist)

12. Been focusing on cardio, 1/2 hour walks each day. Even small things I feel somewhat out of breath. Because of the AAA? Because I'm 48? Because I'm out of shape?

13. I sometimes get nervous about sneezing, coughing or even pushing too much when going to the bathroom. Is this is a legit concern or am I being paranoid? 

14. When I sneeze or cough I sometimes feel a slight "pain" or disomfort in my chest. Is this phantom pain caused by my concerns? Is it something related to the AAA? Lung issue?

15. If this is hereditary (father was discovered to have a abdominal aortic aneurysym in mid 70's, mother has always had a slight heart murmur), will this affect my children?

16. Being off my bodybuilding diet for years, it's tough but I'm doing my best to eat clean but sometimes fall off the wagon. I'm trying to eat oatmeal every morning, Subway chicken or roast beef sandwich for lunch, wife cooks protein, veggie and carb (potato, pasta, rice) for dinner, snack on fuji apple and clementine for snack, drink 1/2 to 3/4 gallon of water daily. If and when I do cheat, how bad will this affect my condition? Cheat = pizza, chinese food, snacks (chips, cookies, pretzels, ice cream), occassional alcohol drinks (vodka with OJ, rum and coke, amaretto and OJ). NOTE I do not binge on these items, just sometimes nibble on this stuff, sometimes a little more than a nibble

17. Trying to learn to live with this, take it seriously but not let it ruin my life. Trying to keep a positive outlook, stay funny and outgoing, sometimes I get down and upset, sometimes angry and say WHAT THE (insert choice words here)....tough but I'm fighting...WE (wife and I) are fighting and facing this head on. One day at a time......

Sorry for the massive long post, just needed to get these feelings and questions off my chest. I'm a great listener BTW (ask my wife) and will be more than happy to share stories and add any input I can. Thank you all for your support!!!! smile

1 like, 14 replies

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14 Replies

  • Posted

    Hi Eric,

    Doubt I can answer all your questions but I'll try a couple. I'm 69 and my AAA reached 5.5cm last year and had an Evar ( repair procedure with a stent ) and so far so good. Mine was picked up through the screening programme and a CT scan will definitely confirm it's presence although the ultrasound scan should have picked it up.

    Causes are unknown, just one of those things I'm afraid.Could be smoking, could be stress, could be hereditary, could be anything. There is nothing really tangible to indicate actual cause.

    I doubt if weight is a prime cause. Though I'm a bit overweight ( not obese ) a neighbour had an AAA ( also repaired ) and he's thin as a rake.

    I would seek Drs. advice re blood thinning agents. I take daily Aspirin and Statins to help reduce cholesterol.

    Again, seek professional advice re scuba diving. At 4.5cm you may be ok. When mine was 5.5cm I was told in no uncrtain terms no long haul flights due to changes in blood pressure even though cabins are pressurised. The same/similar criteria might apply to diving.

    Coughing or sneezing discomfort may be due to doing so just that bit too hard.

    If you're on Facebook a really good site is ' Abdominal Aortic Aneurysm Awareness '. Members there have have endured all sorts of aneurysms and advice and help is second to none.

    Hope the above helps a bit.

    Regards John

     

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    • Posted

      Hi John,

      Thank you for sharing your experiences and providing your advice. I am seeing my cardiologist on the 15th and have a laundry list of questions for him to help me with smile  

      I spoke with an organization called DAN, which is a team of medical doctors specializing in scuba diving and they provide insurance for things not covered by your standard health insurance and answer any questions presented. I asked them about my thoracic AA, they said depth/water pressure is not an issue, it's the exertion of bringing heavy gear on board, putting your gear on and standing up and walking to the edge of the boat when ready to dive, and most of all climbing back onto the boat with your wet gear. Solution: for bringing gear to/from hotel room to docks, I am buying a special cart for my equipment (it's in a mesh bag already, all I need to do is put the bag on the cart and off we go). For on/off the boat, will gear up at the edge of the boat and roll in, will take off gear at the ladder of the boat and hand to them. Only other concern was currents and swimming against them, which I am learning techniques on how to deal with these situations (going to Cozumel in 3 weeks, it's all about currents there)

      I will check out the FB page you reccommended - although mine is thoracic I'm sure it will be full of information I can talk to people about. Thank you!

      Eric

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  • Posted

    i have read that bodybuilding and powerlifting can contribute to aneursyms. LIfting really heavy weights cause tremendous increases in blood pressure. Also, you can inherit a tendency to aneursyms I have read. Keeping your blood pressure low I believe is extremely important. If your blood pressure is too high you risk rupture or dissection of the aneursym, both of which are life-threatening.

    As for alcohol, my cardiologist says I am allowed to have only one drink a day. I "stretch" that rule a bit and allow myself an occasional frozen margarita (at a good restaurant, they usually have a shot and a half of tequila in them), and if I got out for pizza I will often have a pint of beer. I don't drink at home often and if i I do I limit myself to one drink. I have read that alcohol can intefere with the body's blood pressure management and it can possibly interfere with blood pressure meds. 

    I don't know if being a little overweight is bad or not, altough my guess is that obesity might contribute to the risk of aneursysms.

    The tendency to develop aneursysms can be inherited I've read. If a parent had an aneursym I read that it is wise to get yourself checked out. I don't know if there is some specific gene or combination or genes that code for aneursysms, though. I had a 5.3cm thoracic aortic aneursym which was undetected until it dissected. My mother had an aneursysm in the same place about five years ago but I never knew that I should have been checked out. My dissection was repaired surgically. They told me that I could possibly have some sort of connective tissue disease that contributed to my aneursym/dissection and they suggested I have some genetic testing. Then my siblings and their children could be checked. I have no children. So you might ask your cardiologist if genetic testing woould be helpful in identifying aneursysm risk in your children and siblings.

    Someone else asked, in an earlier thread, about scuba diving and aneursyms and the consensus here seemed to that scuba diving would not be safe for you. There is a lot of data that suggests that reducing sodium in the diet can help control blood pressure. I also read recently that they think increasing dietary potassium (bananas, fruit, I think sweet potatoes, etc) can help reduce blood pressure as much or more than reducing sodium. I have also read many times that we don't get anywhere as much potassium as we need in our diets.

    I don't know how low your blood pressure should but based on my situation, which is not exactly like yours, my morning blood pressure is usually 90/60 or therabouts. The best thing for you to do, i think, is monitor your blood pressure maybe twice a day, write it down, and discuss it with your cardiologist.

    Hope this helps!

     

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    • Posted

      Hi Timothy,

      Thank you for your insight and advice! 

      Yeah, I have stopped weight lifting cold turkey. My cardiologist said his recent testing found my TAA hasn't grown in the last 4 years. I went to cardiology dept at my hospital I work at 2 years ago, they couldn't find the aneurisym which is odd, I got a copy of my medical records it shows the test was "difficult" and other key words that stuck out, yet they told me they don't see it and I should be okay. WOW, if something happened to me I may have been able to turn around and sue them (and be unemployed)

      I barely drink, although I have a mini-fridge full of stuff to make my favorite drinks and when I do, I may have 2 to 3 one night then not have any again for weeks. I am going to limit it to 2 MAX (vodka/orange, amaretto/orange, rum/coke, etc)

      Cardiologist reccommended I drop weight, so I am focusing on walking as much as possible (I'm using MyFitnessPal to try to keep my caloric intake to 1600 cals/day while keeping protein intake high and carbs low 3 days (100 grams) and high on day 4 (300 grams). This is a trick I used when I used to get ready for competitions and dropping bodyfat and water weight. Also using a walking app to motivate me to stay on track.

      I added your suggestion about asking my cardiologist about genetic testing. 

      Could you please tell me which thread you found the information on scuba diving and aneurysyms? I'd like to read up more on that. FYI I spoke with DAN, a worldwide organization that is made up of a team of medical professionals and provide insurance for things not covered by standard health insurance. They said depth/water pressure is not the issue, it's moving around equipment on/off the boat, fighting currents, etc. Although my cardiologist cleared me for diving, and DAN said I should be okay, I am not going to throw caution to the wind and will take all precautions and steps to reduce/eliminate any lifting/moving of heavy gear and just "glide" during my dives. If my TAA increases at any point, I am backing away from this as well.

      Good idea to monitor the BP. My wife has one, we need a larger cuff though which I need to buy. A coworker also told me of a portable device/watch that you can wear that continually monitors your BP, believe it's made by Garmin?

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  • Posted

    Hi Eric, the first thing is to distinguish between which aneurysm you have. There is a TAA & AAA.. The TAA is a THORACIC Aortic Aneurysm but the AAA is a ABDOMINAL Aortic Aneurysm. I am stressing this because the info that you get such as symptoms, surgery, meds and so on is different. The common denominator here is the (aorta) which runs from the chest into the stomach area. The location of the aneurysm is important to the kind of information you should receive.

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    • Posted

      Thanks Gigi,

      I assumed that AAA was Acending Aortic Aneurysm (i was wrong), but I'm still learning. Thanks to you, I can properly say that I had a TAA. rolleyes

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    • Posted

      Hi Gigi,

      I'm certain I have a TAA (I kept saying AAA, for ascending aortic aneurisym). HOWEVER....I thought I remember electrocardiagram tech and my cardiologist say they ALSO found a AAA? I need to confirm during my June 15 appointment. I hope I didn't do a number on myself with the heavy weightlifting - geez you do one thing to improve your health, strength, etc, and pay for it another way sad 

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    • Posted

      Wow, hopefully weight lifting to be healthy has not caused a problem. We do all we can to take care of ourselves and sometimes things are just out of our control. It is possible but not common to have both. A MRI was done on my abdomen to make sure I didn't have one there too. One is quite enough. Well hopefully good news will prevail on the 15th.

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    • Posted

      My doctor made certain to explain the difference between the two because location matters. My aneurysm was also ascending. Seems like a vulnerable area for aneurysms. Not the best place for them though because of where the aorta is to the heart. The one bright side of this surgery is that it is not on the heart as long as there aren't other complications...

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  • Posted

    When you did your flight of steps, was it first thing in the morning or the middle of the day? 

    It is normal for our valves and arteries to be smaller in the morning (or when we are relaxing) and open up in diameter as the day goes on, so for instance when you get up to fast and you become lightheaded or dizzy it is due to lack of circulation from those small vessels.

    From what I am learning most heart attacks/aortic dissections happen in the cold mornings, apparently just waking up every day is one of the most intense things our body goes through.

    Yes this will most likely affect your children, so it will be important to get them checked. I believe an echocardiogram should be given in physicals to check for abnormalities. They should be done more frequengtly for kids with genetic history of Aoritic disease.

    It is less likely to happen to women than it is in men, but it doesn't matter how physically fit you are.  I don't want to scare you but there was an extremely healty 15yr old boy that died last month in Washington from and Aortic Dissection, I'm guessing most likely he was not properly treated or diagnosed when he first had his symptoms, but I still do not know the facts or exactly what happened to him that morning.

     

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    • Posted

      It was mid day, I THINK it was after lunch? So I may have had a full stomach, not certain. Now that I've been walking and "dieting" over the last couple of weeks, I'm already starting to feel better, somewhat less bloated and noticed my pace is faster, I am not breathing as heavy. 

      However, I still wonder if TAA's or AAA's contribute to an overall feeling of getting out of breath? Putting aside everything else (weight factors, age, health condition, etc)

      I am going to a pulmonologist next week to see if I have any issues in my lungs. There are days where I take a deep breath and it "hurts" on my left side. Odd....hopefully no issues unless I did something while diving and this is a lingering effect? I take my dives pretty easy, just float, fin kick a llittle and go with the current.

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    • Posted

      I think you might be on to something there, now that you mention it, I can remember being a heavier breather before I dissected.
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  • Posted

    Hi Eric 

    i am sorry to hear about your TAA and it is a worrying time.  

    I was diagnosed with Co-arctation of the Aorta and it was repaired 7 years ago, at the time they explained i had BAV too.   The co-arc left an anerysm and i attended my annual check ups and everything was fine.   My last check up they realised that BAV had been missed somehow on my previous appointment and the aortic root is dilating,  i was sent to  the genetics team, they did a microarray,  whilch was fine. I was obviously worried but my sons have been checked and they have no aorta or BAV problems. These things can run in families but there are other unexplained reasons as to why we get them.

    The only advice I have been given is no heavy lifting, and a be aware of endocarditis, which is mainly caught by dental infections or tattoos,  and get your travel insurance sorted early with an on going policy or your premiums will be massive.  

    I am 5ft and 50kg so not overweight

    My BP has always been low, i dont take any medications . 

    I have had two Gallbladders ops in the last couple of years with no anesthetic problems.

    My cardiologist advised that taking long walks etc is fine.

    The results of my MRI were okay so Cardiologist is happy to wait til next review before taking any actions.  

    I always leave the room wishing i had asked more questions,  such as "how will you repair them*  or "is there anything i should look out for*. 

    I know my family worry and I am sure yours do,  

    Good luck on the 15th and i hope you have wrote your questions down to ask them

     

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    • Posted

      Thank you for your reply - I have an ever-growing list of questions for my cardiologist, I'm hoping he gives me the time to answer all of them. When I say that, it's because of two reasons:

      1. My wife came with me to the stress test, however she had to sit outside in the waiting room while my cardiologist and technician conducted the test. When everything was over, he immediately started explaining the results of the test, to which I had to cut him off and request for my wife to come back in so she can listen as well (in case I missed anything in his semi-fast discussion). He replied okay however I have other patients waiting I will go over what I just mentioned.....factual? Yes. Was that a proper reply? Debatable. He did mention he can go over any questions during our next visit on the 15th (not sure if this will be consultation only; he did mention "eventually a CT scan will be scheduled", so far no mention of it so I think this will be my opportunity to ask all my questions.

      2. I called the office twice, left a message with the receptionist/office secretary with 2 questions I would have liked answered, she took my callback information and I NEVER heard back from him. My wife wants me to change cardiologists (there are several in this practice), I'm on the fence as he has over 25 years experience. Personally I would rather take someone that is very experienced and not the greatest bedside manner, than someone who is friendly and not as experienced. He hasn't been rude or anything, just very factual, detailed but he seems over-serious and fast paced. If on the 15th he doesn't make time for my questions, blasts through them or does anything I don't feel comfortable with, I am immediately switching doctors within that same practice (could have been the secretary's fault as well. Once, okay. Twice, not acceptable).

      Did not know about dental issues such as endocarditis, thank you! Luckily I've been keeping on top of dental treatments, just had 2 small cavities filled and a root canal in January. 

      I am applying for DAN insurance today so I have it for my upcoming trip. Continuing the walking after a 3 day hiatus.

      Best of luck to you as well and thank you for sharing!

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