New Member Early 30s BAV, Aortic Root Dilation, Wondering about Woodworking

[Dan Williams 88]

HI All:


Per the title, I'm new to the forum but have occasionally lurked as my mental health and anxiety would allow me to glimpse my future. I was diagnosed with BAV and aortic regurgitation shortly after college and have struggled with the diagnosis for the last decade. I've been lucky to have good healthcare access and have been monitored annually and now, biannually, as time has progressed. It's been a long road; I've definitely learned to be my own advocate.

In 2012 my Aortic Root was at 3.8 per MRI; in 2018 after a 4.4 reading on MRI I learned, like many others, that aortic root dilation is a separate comorbidity (previously, the concept of aortic dilation had been vaguely explained to me as my "aorta" size and I thought it was intrinsically part of the valve issue--which in some ways is the truth). This further set me back mentally. As a bevy of echos in between 2012 and 2018 had reported high 3's (since then I've learned echos notoriously underestimate, or at least are inaccurate on this measurement) Luckily, things have remained stable the past 2 years and if the average deviation (undercounting) of the echo is an indication longer htan that.

I did have a couple questions that I thought I'd ask for your anecdotes on. Now, I've asked my doctors, but I imagine this search for answers--even if they may not be had--may be common here.

1. I've always abstained from 'weight-lifting," as my cardiologists told me from the very start, but with stable echos with my regular behavior (I've never lifted weights since my diagnosis, smoked, etc, normal BP) and looking for an outlet, I took up woodworking. Now, I have rarely picked up 'heavy' things (over 30 lbs, usually 15) outside of setting up a couple machines (100-115 lb range) on a one-time basis, grabbing some 50 lb plywood sheets in 2017. And to be honest, I didn't think of it much as "weight-lifting" semantically, but I cannot rid myself of the fear of woodworking with the 4.4cm aorta now. I'm at a crossroads with a move and the ability to get our of the hobby--should I? Has anyone here faced a similar choice? I am willing to give it up, even though I've invested a lot.


2. When I started out, out of a fear of being 'unhealthy,' I compulsively compensated by over-exercising (think 7-8 miles a day running, being an avid runner). This led to losing far too much weight and actually needing to rehab to gain weight. My cardiologist at the time actually commended me--even though I had become severely underweight. The running then was out of want of willing myself to be a platonic ideal of 'healthy' as if I could counteract my condition with running. With the aortic root, now, moderate is the word of the day, and just as I've gotten older I haven't run much at all in years. Yet I dwell on that year or so running patch. Has anyone had read/heard/experienced what heavy aerobic exercise can do to do root dilation.


Thanks in advance to anyone who indulges these questions. Part of the reason I joined--and I imagine this may be true of some of you as well--is a quest to try to put fears to bed through talking. And, also as you guy shave probably experience, the place for commiseration is not in the cardiologists office on a 15 minute timetable

 

[Protimenow]

Personally, I don't think you should give up woodworking. If you have a heavy setup (like a 110 pound machine) try to get help, if you have to lift it.

As for plywood - don't you put it onto a table or cutting area? I don't know if you're actually lifting the full 50 pounds - you probably lift an end, put it onto the cutting surface, lift the other end and slide it on. This isn't a dead lift. Of course, if you're moving it from one place to another, you may be lifting the full 50 pounds. I don't know how it would effect your aortic root - you're probably best off asking your cardiologist.

 

[Pete81]

Hi Dan, thanks for sharing you story. I can relate to what you’re saying, I have to say that even after almost 4 yrs I still struggle with the impact my surgery had on me. The realisation of something being seriously wrong with my heart/health made me also want to control every aspect of life that carried a risk of making things worse. You don’t want things to worsen or start all over again. For instance The fear of getting endocarditis again (where it all started) had me carry around disinfectant and plasters all the time, and I was super aware a knocks and bumps because of my anticoagulants. Avoiding risks makes a person feel in control and that’s pleasant but also very limiting. Therefore I am happy I’ve gotten better at deciding what I see as real healthrisks and where I need to relax and keep living my life. Surely those couple of times you lifted a heavy log or sheet of plywood did not dilate you aorta in the way it was measured but that’s your common sense talking and not the doctors advice. And that’s where the difficulty is because it will always be your medical risk management mode vs the relaxed you who wants to keep doing stuff. Therefore I would take all the time you need to ask all the things you want and talk with your doctor and express you worries, on top of sound medical advice, these things are really important. In the end it is his/hers advice and your thoughts and fears that have to balance out to have you keep on enjoying life. Good to have you here, I to get a lot of comfort from writing and reading here on the forum. I do hope some others can relate more specifically to you dilated aorta.

 

[Dan Williams 88]

Protime: Thanks for the reassurance. I have a great cardiologist, but he can be a bit contracted in responses (he's in high demand--appointment a year out type of situation). Obviously, I don't expect him to deliver a thesis, but you know...its mostly just a search for reassurance on my part. I've had two of his Physician's Assistants (they do mostly valves, so they're not generalists) kind of quickly say yes, oh! That's all right! One set a 100lb limit or "strain" as the threshold--which I thought was too high for my comfort. But the biggest thing is wondering whether they understand that I'm not say, just tinkering or building small birdhouses (on the other hand, I'm nowhere close to doing carpentry, doing this for a job, or doing big projects or large slab tables).

As to the plywood, I mostly did some dead lifts of plywood when loading up the SUV and setting up the shop a couple years ago. Maybe 7 full sheets in that year before getting it cut up smaller. Put it on top of the car. walked 50 feet to the garage, then the pivots you mention, Etc. In retrospect, trying to maneuver some of the machines (a friend and I pushed a 220 lb table saw crate up 3 stairs and into the garage) and lift a Kobalt tool box onto a shelf was not smart, but they were one time and--really--unanticipated obstacles. Now I have a hydraulic cart that raises and lowers and a little crane hoist and really nothing is over 25 lbs and less. I use jacks, carts, cranes, and ingenuity. As for the hobby I've produced very little besides some shop furniture but spent a lot! Funny how that happens. I've kept at it the past two years with this very conservative approach and everything is stable, so maybe that's an endorsement.

I feel you Pete.

The problem is I think about every little thing now--like you describe. I hand put some cellulose in the ceiling up and down on a ladder (not that heavy at all). I get to looking back--was that a problem? When moving I had family do most of the heavy stuff, but took some Ikea couch parts with others help. That kind of circuitous thinking but focused on the aortic root, and yours endocarditis. I can't stop kicking myself--although I know I shouldn't because I was doing things without knowledge (the echos came back the same--hence I was doing things fine-- but were wrong and undercounting; didn't even know about aortic dilation, thought it was just the regurg to be worried about).

Thanks again for the commiseration. Looking forward to the community here.

 

[dick0236]

Hi Dan and welcome. This will be a good forum for you.

I see no problem in staying with your woodworking hobby. I have enjoyed woodworking, including building a lake house, since my surgery....and continuing up to this day.....altho my woodworking is now limited to model boat building and simple "honey do" jobs. I follow the simple rule of "do not run with scissors" and altho I have had a few runs to the doc for "stitches" I have suffered no serious injury.

 

[Protimenow]

Dan -- thanks for the reply.

If you already know what size you need the plywood cut, your store should be able to cut it for you. (Or, perhaps, you can have sheets cut in half, if that's what you need. ) You may not need to lift the sheets.

If you have a portable circular saw, you may be able to do some straight cuts in the parking lot (I've done that - carefully) to reduce some pieces, although I have never bought a sheet of plywood.

Like you said, tool purchases DO add up. I've got a LOT of tools that are still laying around unused. Maybe some day I actually WILL do something USEFUL with some of the tools.

There are times when you do something that you barely have the strength for - or shouldn't be doing. It's done. Don't do it again until you're c;leared to do it. But don't stress over it- it's in the past.

My ep has turned out to be non-responsive - or at least, his office isn't giving him my messages.

It sounds like your doctor has a staff that can intelligently handle questions. Don't be afraid to use them. They're busy, but can you think of any other patient whose interest is more important than yours? (No, I haven't called them).

Get your answers. If you don't like the answer, you may be able to ask someone else at the organization. And, if you want good guesses, based on experience, that's what we're all here for.

 

[Dan Williams 88]

Thanks ****! A lot like other crafts, did they build them better back in 1967? Your signature makes me happy and hopeful--as well as your comment. Thank you!

 

[Dan Williams 88]

Protime: You're telling me! I had to do an insurance inventory because the garage was burglarized (they just took hand tools they could pawn quickly--doubt they knew how valuable many things were under their noses or what they were) and the number of items and what that total added up to surprised me. I've turned to cutting down things in the parking lot as well--even long 2x4s. Excellent advice.

 

[Protimenow]

My daughter's 'partner' made a lot of things with pallets that were, apparently, thrown away. I got her a set of power tools that she probably didn't need, but this may have helped her make even more stuff.

I'm thinking about doing some of that, myself.

I've been using the Black & Decker Matrix tools - and have most of the attachments. In fact, I have some duplicates and triplicates that I haven't sold yet. I'm not exactly sure WHY I had so many duplicates, but I do.
The only duplicates, triplicates, etc. are the trim saw attachments that I bought for less than the cost of replacement blades.

Hey, anyone, let me know if you have a Black & Decker Matrix or Craftsman Bolt - I have extra attachments.

(Yeah, not too much cardio in this post, but it DID start with questions about woodworking).

 

[Dan Williams 88]

I'm happy to indulge tool talk. I spent (too much) on dewalt stuff. When it got stolen (and it was the yellow hand power tools that were stolen) it got recouped by insurance. Looking ahead at the move and questions about continuing the hobby, I kind of wish they had burned the garage down (somewhat facetious)

The pallet re-purposing thing is big. Lots of people doing it. The pallets are often in bad shape after their life though and you don't know whats in them (metallic wise) or was on them. You'd probably want to paint--or resurface the boards. But mainly, I'm kind of freaked out by their weight and using a crowbar to take them apart (back to the heart dilatation thing). People say there are tons sitting around, and I believe them, but I haven't looked.

If I didn't have the heart valve combo I would probably try to salvage some 1x4s this way for moving pallets.

 

[pearjas]

Oh my... Hi Dan. You sound like me. My new year's goal for 2016 was to start Crossfit. I too, have had to become my own advocate and would have never even learned of my aortic root dilation/size/aneurysm had I not bugged my doctor about it to the point he insisted I see a psychiatrist. I, too, have a lot of anxiety and even when things are stable, it's always something in the back of your head. I, too have wondered about weight lifting. I was also running a lot before diagnosis.

I started out at 3.9, then had readings of 4.0, 3.9, 4.1, and another 4.1 going into this year (it's coming up in August).

I now see a pretty good cardiologist at KU and like you, I've done a lot of digging on this stuff myself as well. The weight lifting thing is something no one really has an answer for, though I often see 50 pounds being the "stop" weight for lifting. Reps of lighter weight are encouraged over heavy lifting. I stopped lifting for quite a while, and I have resumed lifting again, though it's a fraction of what I used to do. I've been told running is fine, but I've also had a cardiologist tell me it's not recommended...but 90% of what I see in terms of aortic root seems to state mainly avoid heavy lifting. Of course, mine is caused by a connective tissue disorder.

I don't think I would do 'heavy' aerobic exercise, though I do jump on a trampoline still and I want to resume jogging. Feel free to reach out to me if you want to chat. I know how it feels, trust me!
Jason

 

[Dan Williams 88]

Thanks Pearjas! I'll take you up on that. I've seen 50 lbs to as well as "half your weight" or 100 lbs. I think I'm just going to have it moved to the new place and well, it will be there pending whatever decisions I make in the future. Sell, use, use for birdhouses-whatever!

 

[spartangator]

Hi Dan, just another note to say welcome. My journey is similar to yours in many ways regarding cardiac journey and activity questions. Glad you're here to get info and input. It's a lovely group.

 

[Protimenow]

In response to Pearjas -- don't you just love it when doctors don't want to listen to you, and if you persist about symptoms they either tune you out or suggest a psychiatric intervention? Sounds like time to jettison your doctor (which I think you said you've already done).

I may be having a showdown with my primary care physician who doesn't seem to think that it's possible for a patient to self test, and even less possible for any mere mortal patient to manage the anticoagulation. He REFUSES to write a standing order for a PT/INR test, and seems to insist that I waste time and gas going to an entirely unnecessary (and now, misnamed) coumadin clinic.

These doctors are SO SMART, and the patients ARE SO STUPID THAT THEY DON'T EVEN KNOW WHAT THEY'RE SAYING.

 

[vitdoc]

The reason that heavy lifting is not recommended with dilated aortas is that when one is working very hard doing isometric exercise and valsalva maneuvers the blood pressure can go very high. There have been some isolated cases of aortic aneurysm ruptures with extreme activity. For the vast majority of people they are not doing that kind of lifting. So unless one feels that they are about to explode lifting probably is not a big deal. The value of how much to lift is "plucked out of air" and is just some recommendation without really good justification. The aneurysm is unlikely to change in size unless one becomes a heavy duty weight lifter. So I believe the worst thing that people do is to start limiting themselves due to some perceived issues that really don't exist. I am a physician and I know that some physicians tend to give advice that can be very limiting which is not based on any science. Live your life reasonably and don't become a pro weight lifter.

 

[pearjas]

You definitely have to be your own advocate when it comes to health care...and the cause of my aneurysm (connective tissue disorder, Ehlers Danlos) is sort of rare... the doctor could pronounce it..he knew some of the basic symptoms of it and even diagnosed me with it but obviously didn't know protocol which typically calls for an echo at LEAST every 2 years.

 

[Pete81]

I believe the worst thing that people do is to start limiting themselves due to some perceived issues that really don't exist. I am a physician and I know that some physicians tend to give advice that can be very limiting which is not based on any science. Live your life reasonably and don't become a pro weight lifter.

I don’t know Dan if you have youngsters (yet) but I was thinking the other day, and I don’t know exactly in lbs, but my 4yo daughter is ~23kg now and still she want me to carry her up the stairs bringing her to bed or throw her high up in the air. the thought of me having to say no to that and miss out on that smile and laugh....no way I would want to limit myself in that way.