Just diagnosed with Aortic Aneurysm and leaking Aortic Valve

[John K]

Well last year ended with a trip to the ER that resulted in finding out I have a aortic aneurysm. It was originally measured at 5.2 cm up near the arch, however today I found out that when it was remeasured it was 6.2 cm. As a result today I was also told that I shouldn't be driving until told otherwise due to the risk to others, luckily I am able to telework for now. Thursday I have appointment for a CT scan of my coronary arteries and a meeting with the surgeon. Hopefully I will also be finding out what is being recommended, currently all I know is that surgery is being recommended.

Not sure how all of this is going to turn out but this year is not starting off well.

I am thankful for all of the information on this site as it has been helpful.

John K

 

[honeybunny]

Sorry for the reason you are here, John but welcome. You will find tons of support. Keep us posted.

 

[Seaton]

Greetings and a hearty welcome to the forum, John.

No doubt a bit of a shock for you but it’s good to hear they’ve noted the increased aneurysm size. Means it can be dealt with appropriately and in good time.

Lot’s of support here for any questions or concerns you have in the coming months and onwards.

Wishing you the best of health as the days pass – and, if you’re feeling up to it, let us know how things progress.

 

[Catie]

Welcome, John! Sorry for the reason that brings you here. But as you know, the good news is, they found your aneurysm and it can be fixed with surgery. Lots of us have had the repair. Hope you'll keep us posted.

 

[johninsd]

Had almost the same diagnosis in 2011 - aneurysm was smaller, don't remember the numbers now. But my aortic valve wasn't closing due to the aneurysm being right at the aortic root. Long story short after living with increasing restrictions on activity for a few years I had OHS consisting of aortic root replacement and installation of a bovine aortic valve. Passed the 5 year anniversary of my surgery in November 2019 and am still doing fine - no restrictions on my activity - lift all I want to, walk, cycle, swim etc. The only restrictions now are due to laziness and aging (in that order). The odds are with us these days - surgeons can do amazing things for us. I did have a few episodes of atrial flutter and atrial fibrillation so I am on Warfarin - maybe for life maybe not - no big deal either way - a lab test every month or so to check INR - it's been pretty consistent so minimal dosage adjustments have been necessary.

 

[cewilk]

Hey John, I’m sorry to hear about the news. Aortic aneurysms are definitely scary. What I have found really helpful through this forum is being able to find people who can relate to your situation. It has helped me feel confident that others have also gone through similar situations and come out on the other end just fine. I also had an ascending aortic aneurysm that was repaired at the same time I received my mechanical aoritic valve. I had the surgery at 26 and I am 31 (soon to be 32). All has been going just fine post surgery and I just hit my 5 year mark since that surgery. I am just as active as I was before surgery and warfarin has not limited me from doing anything I was already doing. No doubt having OHS surgery simply sucks, but if it’s what you need to get back to living a normal life it’ll be worth it.

 

[Protimenow]

INRs should NOT be tested monthly. Many of us test weekly, and there's strong evidence supporting that frequency.

Some labs or clinics use the outdated protocol, reasoning that if your INR is consistent from test period to test period, the test intervals can be extend to once a month, or once every two months. Any fluctuations from test to test will be missed, and your INR doesn't necessarily stay consistent from test to test. And, with monthly tests, the clinics or doctors would have no way to detect potentially dangerous - maybe life threatening - changes between tests.

With a low INR, you can develop a clot that can migrate to your brain or lungs, in less than two weeks. If your INR should go too high, you can have serious bleeding issues.

I encourage you to get a meter and self-test, or impress upon your clinic or doctor that you aren't comfortable with this testing interval.

I've been self-testing for more than a decade, and I know that a LOT of us on this forum self-test. I suspect that most of us test weekly - and probably all of us test at least once every two weeks.

Meters aren't always too expensive - you can often find one on eBay (many are guaranteed to work, and the sellers take returns), strips often run about $5 each if you buy 48 or 50 at a time, and you WILL get satisfaction in the knowledge that you've taken control of your INR and that you aren't buying into the lab's outdated schedule.

If you need advice about dosage management, there are great resources here (especially from Pellicle). We're here with our mutual best interests being paramount. As far as I'm concerned, weekly testing is extremely important.

 

[bobr33543]

Had almost the same diagnosis in 2011 - aneurysm was smaller, don't remember the numbers now. But my aortic valve wasn't closing due to the aneurysm being right at the aortic root. Long story short after living with increasing restrictions on activity for a few years I had OHS consisting of aortic root replacement and installation of a bovine aortic valve. Passed the 5 year anniversary of my surgery in November 2019 and am still doing fine - no restrictions on my activity - lift all I want to, walk, cycle, swim etc. The only restrictions now are due to laziness and aging (in that order). The odds are with us these days - surgeons can do amazing things for us. I did have a few episodes of atrial flutter and atrial fibrillation so I am on Warfarin - maybe for life maybe not - no big deal either way - a lab test every month or so to check INR - it's been pretty consistent so minimal dosage adjustments have been necessary.

My AVR was 8 years ago. Developed occasional Afib about 5 years ago and constant A flutter last July. I had a cardiac ablation done 10 weeks ago and have been fib and flutter free for the past 8 weeks.

 

[pellicle]

Hi John and welcome

Not sure how all of this is going to turn out but this year is not starting off well.

I just wanted to say that you new year has actually started off fantastic, the aneurysm and valve were leaking well before the new year and now you know of it. That means that you won't suddenly die in front of your loved ones leaving them traumatised (really).

The surgery is far less difficult (for you) or concerning that you may imagine so my advice is to follow the Stoic teachings and focus on the things you can do to prepare.

We've all done it here (well except for those in the waiting room like you and the lurkers in the waiting room) and are all testimony that it can be done and go live a life after that. Indeed go live a better life after that. I did (and I've had 3 OHS now, although I can say each gets harder over time to recover from).

Best Wishes

 

[John K]

Thanks for all the responses, and yes while I don't like the way the year has started I do recognize that this is a much better option then not knowing and having the aneurism rupture.

I met with the surgeon today and I am scheduled for surgery on 10 Feb, with the possibility of earlier depending upon cancelations.

While she thinks she can save the valve, I need to make a choice between the biological (bovine) and mechanical replacement valves in case she can't.

I am currently leaning towards the mechanical valve, but haven concerns with it due to the bleeding potential as I often work in remote areas with rugged terrain. For those that have mechanical valves, how difficult is it to control bleeding from minor cuts and how difficult is it to maintain INR levels?

John K

 

[pellicle]

I am currently leaning towards the mechanical valve, but haven concerns with it due to the bleeding potential as I often work in remote areas with rugged terrain. For those that have mechanical valves, how difficult is it to control bleeding from minor cuts and how difficult is it to maintain INR levels?

I'd say that for shaving nicks its slightly more annoying (so I have a beard now) and for "life threatening gashes" it won't make the slightest difference.

My dentist regularly is surprised by how little bleeding happens when doing gum intensive work like "scale and clean" (with that sharp little tool) and says that I bleed less than patients who aren't on warfarin.

I maintain my INR pretty well, and its not just my imagination, my Cadriologist and Surgeon have remarked the same when I visit and take a tablet with my yearly graphs. My INR is better than most clinics maintain.

 

[dick0236]

I "second" what Pellicle posted above....
...minor razor cuts were sometimes more annoying than deep cuts that required stitches. I've never had a cut that required more than "first aid" and/or maybe a few stitches.
...I have never had to withhold, or reduce, warfarin for any dental procedure.
...I find it pretty routine managing INR, but I have been doing it for a long time. There is a "learning curve" until you learn how the drug affects you and your lifestyle. At no time has warfarin proved too difficult for me to handle.

 

[Protimenow]

I concur with the other experts and warfarin veterans. I've been using it for more than 28 years.

Minor cuts are really no big deal. It's not like opening a faucet and the blood running out.

Your bruises may be larger, and sometimes more colorful, than usual, but in most cases, it's not that big a deal.

I've been self managing since 2009 - and would have started earlier if I had been able to afford a meter.

Personally, I wouldn't let dread of warfarin factor into the decision of mechanical or tissue -- warfarin is pretty much a non-issue.

 

[vitdoc]

John you did not mention your age. If you use a biological valve and you are less than 70 there is a strong chance you will need a new valve before you are on the wrong side of the grass. The assumption is currently that you would then have a TAVR procedure if your valve failed. This may well be the case. Currently there probably is very little data on valves repaired with TAVR that are connected to an artificial aorta. Also even under the best of conditions every procedure has some risk. So personally I think having the fewest procedures as a general rule is the way to go. Warfarin is an annoyance but not a major impediment. Small cuts bleed a bit more but stop. You can take a meter with you to check your INR if you are gone for significant periods of time from civilization. Clearly there may be new advances in the future that might allow valves to last longer without anticoagulants but for right now you need to make your decision on what is available.

 

[John K]

I am 54 years old and have a job that varies from office work to hiking in the mountains carrying 50lbs of equipment/supplies. When I am working in the field it would normally be at least 30 minutes to a hour before medical assistance could get there.

Based on everything I have read I expected a recommendation for a Mechanical Valve. However both my surgeon and cardiologist are recommending a biological valve due to my job (working in remote areas) and the bleeding risks.

I agree that based on the typical lifespan of a biological valve, my age, and not wanting to have to do this all over again a mechanical valve would seem to be the route to go. Based on what I have read here and on-line, as long as you take responsibility for managing your INR levels taking anti-coagulants is not a major issue. However my doctors are recommending a biological valve due tot the bleeding risk, and while I think they may be overacting to my work it is hard to disregard their advice.

John K

 

[vitdoc]

I have been on warfarin for 37 years since age 34. I had a tissue valve at age 29 that failed. I have skiied, biked, climbed etc.. without major issues. I did have a bicycle accident about 10 yrs ago where I fell at high speed and hit my leg. I dropped about two units into the leg and it took 2 months to clear. Other than that never had a big issue. Others here have similar stories. I have had three valve surgeries with the last having an aorta thrown in for a 6.5 cm aneurysm . I then needed a pacemaker for heart block. I am a physician (Retinal surgeon) and I am a less is more person. So yes it would be great not to use warfarin but it does come at a cost of likely more procedures.
Your call. Also I think it is a bit weird to tell you not to drive. The chance of an sudden aneurysm rupture is still small. I find that many of my colleagues are unnecessarily restrictive.

 

[pellicle]

However my doctors are recommending a biological valve due tot the bleeding risk, and while I think they may be overacting to my work it is hard to disregard their advice.

The thibg about advice is that the answers you get will vary on who you ask.

I can see their reasoning. A bioprosthetic will probably get you 15 years. Putting you at about 70 when needing a reoperation.

Myself I think that's a bad time to have one. My experience with ilder people is that sometimes stuff like this sort of major operation can tip you over the edge from a super healthy 70 year-old to one in convalescence.

Have you given thought to a second opinion?

Then there is the fact that a bioprosthetic will not be 100% functional right up until failure. It will degrade in a non linear way and that will impact your fitness, dragging you down with it. You will then need to recover that fitness through training. I can assure you that my last valves did that to me and recovering fitness at 70 won't be easier than it was for me at 30.

Then there is the question of how you feel the US economy will be in 15 years and if their health system will still favour covering elderly people?

Lastly some threads of interest

https://www.valvereplacement.org/threads/cut-myself-pretty-bad.19065/
And of course 29 is younger than you, but look at his work

https://www.valvereplacement.org/th...difficult-decision-due-to-way-of-life.861362/
And this story about him nealy losing his leg in an accident (involving winter, skidoos and icewater)

https://www.valvereplacement.org/threads/a-members-survival-story.874083/
Its not an simple choice and involves considering probabilities, guesses about the future and personal life preferences.

Worth noting is that Ross (the repondent in the first story) died due to a GI bleed some years after that, however Ross was not a well man at the time and had been in declining health for some years before that.

Up to you, best wishes with the decision.

 

[John K]

I have been on warfarin for 37 years since age 34. I had a tissue valve at age 29 that failed. I have skiied, biked, climbed etc.. without major issues. I did have a bicycle accident about 10 yrs ago where I fell at high speed and hit my leg. I dropped about two units into the leg and it took 2 months to clear. Other than that never had a big issue. Others here have similar stories. I have had three valve surgeries with the last having an aorta thrown in for a 6.5 cm aneurysm . I then needed a pacemaker for heart block. I am a physician (Retinal surgeon) and I am a less is more person. So yes it would be great not to use warfarin but it does come at a cost of likely more procedures.
Your call. Also I think it is a bit weird to tell you not to drive. The chance of an sudden aneurysm rupture is still small. I find that many of my colleagues are unnecessarily restrictive.

What do you mean "I dropped about two units into the leg and it took 2 months to clear"?

John K

 

[Astro]

I am 54 years old and have a job that varies from office work to hiking in the mountains carrying 50lbs of equipment/supplies. When I am working in the field it would normally be at least 30 minutes to a hour before medical assistance could get there.

Based on everything I have read I expected a recommendation for a Mechanical Valve. However both my surgeon and cardiologist are recommending a biological valve due to my job (working in remote areas) and the bleeding risks.

I agree that based on the typical lifespan of a biological valve, my age, and not wanting to have to do this all over again a mechanical valve would seem to be the route to go. Based on what I have read here and on-line, as long as you take responsibility for managing your INR levels taking anti-coagulants is not a major issue. However my doctors are recommending a biological valve due tot the bleeding risk, and while I think they may be overacting to my work it is hard to disregard their advice.

John K

I think your cardiologist’s and surgeon’s reason for a tissue valve makes sense. If you had a nasty fall, the increased bleeding around a broken bone or internally (abdominal or intracranial) could make the difference whether you can get yourself out. This is a strong reason to tell yourself in 10-15 years why you are undergoing surgery again (because you chose a tissue valve). At your age, provided you have some luck with a tissue valve lasting at least 10 years, a TAVI may be a real option.

Best wishes

 

[vitdoc]

The question John K asked was about my statement of dropping two units into my leg. My blood level (systemic hemoglobin) dropped significantly after the accident. For the degree that it dropped I estimated that I lost about 2 units of blood around 2 pints. My leg was markedly swollen and very sore.
Blood in tissue is very irritating. Ultimately the body breaks down the blood ,and the blood products and the iron are reabsorbed. That is what took about 2 months. The leg returned to normal. This happened one week before I was leaving for France on a bicycle trip. Part of the trip was to ride up Mt. Ventoux. This is one of the above category climbs on the Tour de France. I was very weak with the anemia and the crummy leg so I only got up about 1/3 the way. My wife made it to the top. So in 37 years of Warfarin this was my worst bleeding experience.