Dilated Aorta - Scared

pearjas

I’ve been blessed with relatively good health my entire life, though despite that, there have always been certain aspects that are ‘different’ about me. One of the most interesting things about me is that I’m “hypermobile”, which is basically when you can bend many joints in your body farther than they should. If you’ve ever seen me give thumbs up, you’d know this about me. I often joke with people and show it off or get comments from friends in my ability to make a pillow out of my elbows. I’ve always enjoyed being this way.

It wasn’t until I began going to the gym long ago that I noticed this frequently, and I just had to be a bit more ‘careful’. I did have a minor dislocation of my shoulder back in 2010, and this was what provoked me into doing research into this issue – why am I this way? Can it be bad?

That research took me nearly two years to complete, and by 2012, I was in front of my doctor and decided to mention it. He gave me a “hypermobility scale test”, in which I scored an 8 out of 9. My knees bent backwards. My elbows bent more than a 90 degree angle. My thumb could bend backwards to my forearm, and all my fingers went back a ways just by extending them. The doctor said he believed it to be Ehlers Danlos Syndrome Type 3, otherwise known as Ehlers Danlos Hypermobility Type, which I had come to the same conclusion.

Per my request, he also ordered an echocardiogram, as I had read this was suggested, in fact, generally mandatory for this sort of diagnosis. The echo was to check for a dilated aorta. The test showed my aorta to be at 3.5cm, which was on the high end of normal.
This doctor also sent me to a rheumatologist, who admitted it was beyond his expertise. As I wasn’t having any problems, I learned a little about myself and moved on with my life, putting all the knowledge I had gained in the back of my mind while keeping my eyes peeled for potential problems.

Fast forward to July, 2015. I was at the doctor’s office, as I now have another primary doctor. I had already requested a follow-up echocardiogram a couple times, as it had been three years. The biggest reason why I wanted a follow up echo is because I had started weight training at the gym. It was normal for me to be at the gym around 6 days a week. Beforehand, I was always more of a cardio guy. I was/am in the best shape of my life currently, and he assured me many times the test would be normal and weight training would have any impact on your heart. After about the third time mentioning it, he said due to my anxiety about it, even though it would be normal, he’d order the echocardiogram. I had that done on August 10, 2015. As he believed I had Ehlers Danlos as well, he referred me to another rheumatologist.

Over the weekend, I had come up with a new gym plan to try and help me achieve my fat loss goals even further, The first day for this was August 17. I worked out pretty hard, and I loved it. I was sore the following day, which I often took as a good sign. I never imagined I’d always remember this workout.

On August 19, my life changed forever. I had my appointment with the rheumatologist, and he looked me over. The alarming part of the appointment was getting the results of the echo. I was horrified to read I had a “severely dilated aortic root”. It was shown at 4.4cm. They told me to suspend all activity until I consulted with a cardiologist. I had actually planned on running a 5K when I got home and going to the gym later that night. I was devastated. I was shocked. I was worried.

Obviously, I had to do some research, because I really wasn’t all that familiar with the heart. The aortic root is the very beginning of the aorta that branches right off the heart, and dilation of this are very frequent in connective tissue disorders of all types, which was the reason I asked for the follow-up to begin with. Surgery was generally indicated between 4.5-5cm, and I was right there already. This is full-blown open heart surgery, heart and lung machine – the whole nine yards. I was, and still am horrified. If you’d have asked me before any of this what my biggest fears in life were, I would have told you anesthetics that put you to sleep, surgery, and maybe death. This brought all those into play. Up to this day, I have yet to experience any of them.

Before I seen the cardiologist, I was called two days before stating I needed to get a CT scan, which was a more accurate test. The CT scan showed a better dilation at 4.0cm even. So there I was, at an even 4.0. That’s where I’m at now.

After seeing the cardiologist who likely wasn’t familiar at all with connective tissue disorders, he said we’d do follow-up in a year and it’s basically “watch and wait”. He said I could do everything I was doing before, but not to “overdo it”. I am not confident in his judgement, and now have an appointment to see a cardiologist at KU who is familiar with connective tissue problems. That appointment is on Christmas Eve.

While I'm thankful I know and can be 'careful', I’m not thankful for is the chaos it’s put me through. I’ve sleeping more than I ever have in my entire life, as that’s the only thing I feel like I can do. I want to go running, or go to the gym, as that was my escape and my way of keeping my sanity, but I don’t know if I can. While I plan to slowly get back into the gym routine, I can’t help but wonder if I’m going to need this major operation in the future. I also can’t help but wonder how many others this is affecting that don’t know about it. They call it the ‘silent killer’.
This issue causes more deaths every year than breast cancer and car accidents. Frequently, people who have a ruptured or dissected aorta are assumed to have a heart attack. If you are athletic, smoke, have high blood pressure, or just want to make sure – you really should ask about getting an echocardiogram. There have been “talks” about it being a standard test for everyone, but it costs money, and with that, the idea goes down the drain.

I’m afraid I’m going to have to live the rest of my life on the couch. I’m frustrated that the thing I looked forward to the most, I can no longer do. I am still seeing results from going to the gym. My warped hands from grabbing the weights are starting to heal. My gym clothes, or other people’s posts about the gym or whatever is all a reminder. I feel like I’m in my own world right now. Can I continue to try to achieve my fitness goals with diet alone, or is it even worth it?
In closing, I will state the last couple weeks have brought forth all of my biggest fears, which have in turn made this the worst weeks of my life. If there is ANY positive about this, it’s that I know if I can emerge from this, I can emerge and conquer anything. Small things no longer bother me, because this has taken over.

Does anyone have experience putting together a workout plan with an aortic aneurysm, dilated aorta, etc.? I've done research and see so many conflicting reports. I don't have high bp or any other conditions that would cause or make me prone to heart problems. I am 32, about 134 pounds, and 5'6". I currently weigh less than I have in about ten years, but I've already gained a few pounds because of inactivity. Grr. I have a feeling it's going to be a long journey for me... I just would ultimately like to continue working out while minimizing risk for more dilation, or heaven forbid, dissection or rupture (don't even want to think about that).

shadowfax_c11

Wow, I am sorry. I have nothing helpful to say other than that someone here hears you.

Your situation definitely isn't something anyone on line can really offer advice on. I think one really good thing is that you were proactive and caught this before disaster struck. So there is that. I don't know anything about conditions like yours although I do have a friend who is very flexible (dont know if she is in the same category as you though). My sensei always warns people who are "super bendy" to be very careful and we have to be cautious of those people too because they tend to be injured a lot more easily due to over-extension.

Would it be worth looking into things like tai chi, yoga and pilates? They are not as intense cardiovascular but have value as exercises. In your current state of mind something like tai chi might be a huge help mentally as well as physically. Still ask your physician before you decide to try one of those if you do.

pearjas

Very true, everything is definitely unique. Very frustrating! Tai chi, yoga, etc is definitely something I should look into. Thanks.