Warm Heart, Cold Feet

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Superbob

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Okay, I am on a track toward having surgery for an ascending aortic aneurysm measured at 5.5 cm on May 2 by my prospective surgeon. I have taken just one of a battery of five tests so far, but they are supposed to come in rapid order over the coming week. Then, likely, a surgery date.

Now on this Sunday morning, my feet are getting cold.

Wondering if we couldn't just hold off and do another echo in 3 to 6 months to see if this sucker really is growing.

A little background: Had aortic root and valve replacement in 2005. Aneurysm was measured at 5.5 in surgery; valve, bicuspid, was extremely leaky.

Replacement valve is still working well. A Medtronic Freestyle, porcine.

The surgeon says in process of zapping the current aneurysm, he would go ahead and put in a new valve. And a valve job makes sense, I suppose. They don't last forever and 14 years has been a pretty good run.

Still, I wonder re the aneurysm: what are the risks of rupture or dissection at 5.5 cm? What degree of chance would you be taking to delay and see if you are on a track to 6.0?

A little more background: This same aneurysm was measured at 5.1 cm on a CT 10 years ago. Not deemed a problem then. The measurement on a CT this March was 5.3 cm -- didn't seem like much of an increase over a decade. But my original surgeon back in Virginia took a look as a favor to me, and he measured it at 5.7 and word came back to me that he thought it was growing rapidly. That's when I visited my current prospective surgeon in North Carolina and got the 5.5 measurement and recommendation to address it surgically.

I was 63 when I had the first surgery. Now, lo and behold, I am 77. Have stayed active -- walking and exercise class -- but cringe at thought of another OHS. Could be 5-7 days in hospital, then rehab center, leaving a lot of life in limbo.

So feet are cold this Sunday morning. What if I just put the whole thing off?
 
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Superbob

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Oh heck, guys, I know the answer -- need to get it done. That is the prudent thing to do. It was helpful to be able to come here and vent, though!
 

Duffey

Me and Granbon
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Just do it, and get the valve replaced too. You’ll be good to go for another 30+ years. Invest in some warm socks in the meantime . . . ha! On a selfishly serious note, I rarely talk about Granbon’s passing, but she dilly dallied around with an aneurysm and we know how that turned out. I just as soon not lose another dear friend.
 

Superbob

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Oh dear Granbonny -- one of all-time favorites here. Granbon urged me at age 63 to get a mechan value instead of a tissue so I wouldn't have to worry about a re-do as I approached my 80s. However, turns out the piggie valve is still doing well; it's the aneurysm that's the problem. Didn't realize (or had forgotten) she had delayed in dealing with that. Sure do miss her.
 

Duffey

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Bonnie purposefully made no mentioned of it on the forum. As you say, the thought of another OHS after she had received a mechanical valve to prevent such an occurrence disturbed her so much that she was almost immobilized by fear. The thought of repeat surgery is very scary, but the odds of a good outcome surpass the odds of delaying.
 

ottagal

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SuperBob, As much as NO ONE looks forward to another OHS, glad that you are getting 'er done'. I think it is human nature to want to talk ourselves out of something that we didn't sign up for. :)
You will be in good hands and we are all here rooting for you!
 

pellicle

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Hi SuperBob

Okay, I am on a track toward having surgery for an ascending aortic aneurysm measured at 5.5 cm on May 2 by my prospective surgeon.
well it sounds like your team are doing the right thing. In Australia the guidelines are like this:

https://www.anzsvs.org.au/patient-information/aortic-aneurysm/

When an aneurysm reaches 5.5 cms most surgeons would consider offering surgical intervention. This is because, at this size, the aneurysm has a greater risk of rupture. It then becomes as safe to have an operation to repair the aneurysm, as it is to leave the aneurysm alone.




Wondering if we couldn't just hold off and do another echo in 3 to 6 months to see if this sucker really is growing.

A little background: Had aortic root and valve replacement in 2005. Aneurysm was measured at 5.5 in surgery; valve, bicuspid, was extremely leaky.
that's interesting and in my view I would question why the hell didn't they fix it then and there at that time?

Well that's moot now anyway


Still, I wonder re the aneurysm: what are the risks of rupture or dissection at 5.5 cm? What degree of chance would you be taking to delay and see if you are on a track to 6.0?
well to me that's a valid question because it seems to have been stable since 2005 right?

I would ask those pressing questions if I was you ... and seek an alternative opinion.

It might just be there is no reason, it may also be there is some.


...That's when I visited my current prospective surgeon in North Carolina and got the 5.5 measurement and recommendation to address it surgically.
interesting history ... as I said above I'd get another opinion. Especially since according to our guidelines:
Rapid expansion means more than 7mm in 6 months or 10mm in one year.

which is not what you have seen.

Now, lo and behold, I am 77.
myself at 77 I would be very cautious of another OHS ... it is more often the case (than when younger) that OHS at that later age can lead to a marked step back in quality of life.

I think it prudent at least to not just be led into surgery. Also from that link:

Whether you proceed with surgery will not just depend on the size of the aneurysm. It is important that each patient is fit enough to withstand the operation. Fitness for surgery can be affected by many factors and the decision whether or not to proceed with surgery can be a difficult one, as it is a very major operation. It will only be after a detailed discussion with your surgeon, regarding your own personal circumstances and type of treatment available, that a decision can be reached.



So feet are cold this Sunday morning. What if I just put the whole thing off?
to me its prudent to get further investigations and factor in that its been stable since 2005. Ask hard questions and I'd also ask for the surgeons report from the surgery as to why when they looked at it with their eyes (best way to see) they did not decide to replace it.

Mean time avoid doing any power lifting but keep walking ;-)

Best Wishes
 

pellicle

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PS: we all have to die, there are far worse ways to die than a rutpured Aortic Artery. Like my dad ... he suffered terrible accelerating decline from mesothelioma, which metastasized into numerous other cancers (including in his spine) and his last months were simply dreadful. It was just awful watching him wither like a poisoned weed before my eyes.


You may know my history as well, and after my last OHS there was a brief investigation as to if my aneurysm was extending in the area past the graft. Given the at that time present infection I said that a 4th surgery would not be an option. I'd rather die out skiing on the lake without leaving a bloody mess.
 

dick0236

Eat the elephant one bite at a time
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Still, I wonder re the aneurysm: what are the risks of rupture or dissection at 5.5 cm? What degree of chance would you be taking to delay and see if you are on a track to 6.0?
Last fall I had an aortic aneurysm show up on my biannual echo at 5.5cm and then confirmed via CT scan at 5.8cm. I agreed to speak to a surgeon. The surgeon gave me the following odds. A 20% chance of the aneurysm rupturing or a 10% chance of a serious problem during surgery to repair. It's a tough decision. I opted to do nothing. My cardio disagreed with my decision, my PCP agreed with me and the surgeon was noncommittal.

Decisions like these are very private and we all have unique reasoning for our decision. Mine are
1. I was 82 when diagnosed......83 now. That's very old for this type of surgery.
2. Would require explanting a very, very old mechanical valve with all the potential issues involving such a valve replacement.
3. A few years ago I was diagnosed with chronic A-fib currently treated with meds only. The A-fib could pose a surgical issue and, at the least, I'd probably come out of surgery wearing some new hardware (pacemaker, etc).
4. Did I mention that I am 83.......well beyond normal life expectancy and my Bucket List is short.

Again, my reasoning is my reasoning only......good or bad.
 

Superbob

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Dick: I greatly appreciate you weighing in here with points you considered in making your decision. You are a valued source of wisdom and inspiration on this site, and have been for a long time.

I may just call a time-out on the pre-op testing and ask for answers from the cardios and surgeons to additional questions. Your point re not wanting to explant a mechanical value that is still working well after many decades probably goes another way with me, in that I have a tissue valve almost 15 years old that may need replacing in a few years anyway (or I might be lucky enough to get 20 years out of it, who knows?) I don't have the a-fib problem; however, because of enlargement of my left atrium, my cardio has told me a-fib might be shortly down the road for me, and that I would have to be on meds for it. So that may be another point to consider.

As for age, I'm right behind you, staring at 80, and no doubt what you say about the difficulty of OHS at this age is right on target. So, again, thank you. I will think it out some more.
 

Kristine55

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Hello Superbob!

I'm a voice from your cardiac past. I've been part of the forum since 2006, when I had OHS (in May of that year when I was 43). I clearly remember you, as I had the same replacement, a Medtronic Freestyle, porcine. I had 12 fantastic years, living a great, very athletic life, taking only 2 baby aspirin each day. Then, last April, after my annual check up, I got the news that, while my valve was fine, I had an aneurysm in the aortic root... as you know, part of the Freestyle. Like you, the aneurysm was driving the surgery. For that next month, I engaged in a lot of discussion, both here on the forum and amongst my friends and family. In addition, I had a first, 2nd and 3rd opinion (1: Northwestern in Chicago, where I had my first replacement, 2: the Mayo Clinic in Arizona, and 3: my aunt, who is a cardiologist). After careful review of all the facts, I decided to move forward with surgery.

Last June 29th, I had my 2nd OHS at age 55. They removed the entire Freestyle, replaced my root with a dacron sleeve and gave me a new Edwards stented tissue valve, bovine. I am SO GLAD I did it. As so many of us know, the waiting is definitely the hardest part. It was a slower recovery than the first time, but by October I was really feeling like myself... back to most of my activities. The only medication I'm taking is the two daily baby aspirin I was on for those last 12 years. Next month I'll happily celebrate my first anniversary with this wonderful valve and I am so happy that the surgery is behind me. (By the way, Dr Chris Malaisrie from Northwestern did the surgery. He was very comfortable with the re-op and if you feel like a field trip to Chicago for the surgery, I'd recommend him highly.)

Obviously, there is a difference in our age, Superbob, so I can't speak to that. What I can tell you is that a couple of weeks before the surgery, I too got cold feet. "Wasn't there SOME way to avoid this?", I asked myself. I spent a couple of days trying very hard to deny the facts. But, like you, I just needed to vent a bit, then move forward. The waiting and decision-making can really play with your head. Just know that you will be so happy when all of this is in your rearview mirror.

I wish you well, Superbob. You'll be in my thoughts as you move forward.

Best,

Kristine

2nd AVR June 2018, age 55
Edwards Perimount valve with a dacron graft
1st AVR May 2006, age 43
Medtronic Freestyle Aortic Root Heart Valve 29mm, Ascending Aorta Repair
Both surgeries at Northwestern Memorial Hospital, Chicago, IL
 

Superbob

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Hi Kristine, great post and very happy that you are doing well. Had you ever been told before last April that you had an aneurysm? What was the size of it then and at surgery time? I was told 10 years ago that I had one of 5.1 cm. Now the official CT number is 5.3. I am asking for a repeat CT in 6 months to determine if real increase is occurring. Yeah there is risk in waiting, but there also is elevated risk for OHS at my age.
 

Superman

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SuperBob,

No doubt a tough decision. One that actually brought me to this forum. I was only 36 at the time and already 19 years into my mechanical valve. I suppose I could have waited a few months. Maybe even years in retrospect. However, I was experiencing rapid expansion going from 2.6 cm to 4.9 cm in a couple years. Couldn’t sleep and was rendered inactive for fear of doing more damage through exertion. For me, mentally, it was better to just get it done. In hindsight, it was for the best. I’ve had a healthy and active 10 years since with no more issues.

Honestly can’t even guess what my reaction would be to another OHS at 77. Whatever your decision, I’ll just pray for many more staying the course updates and great insight and wisdom from you. If you do nothing; I hope you’re right and this is just a stable aneurysm for you. If you get it fixed, I hope for a speedy and full recovery for you.
 

Superbob

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Thanks Superman! With me, technically, I have had an aneurysm of 5.1 cm for at least a decade now. All I want is confirmation that it has indeed started growing significantly. The latest CT in March put it at 5.3 -- a tiny change (if any at all) from 2009. A prospective surgeon took a quick look at a CD of the CTA and said he saw 5.5, which some consider the trigger point for surgery. To undertake the risks of surgery at my age, which I may still do, I need a bit more evidence than that. Maybe I'm right, maybe I'm wrong. Que sera sera. (Thank you, Doris Day!)
 
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Kristine55

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Superbob -

I'm not sure how rapidly my aneurysm grew. I just tried to access my older reports and I wasn't able to do that. I do know that between my most recent echos (I think about 18 months} there was a notable difference in the size of the aneurysm (which measured 5.3 before my surgery last June).

Like Superman, part of my calculation to move forward with surgery was the effect that decision was having on my emotional well-being. I agree wholeheartedly with Superman's comment: "For me, mentally, it was better to just get it done. In hindsight, it was for the best." That describes my mindset perfectly.

Superbob, you need to follow your head and your heart (pun partially intended). Follow the evidence and see where it takes you. If and/or when you are ready to take some action, you'll know it. You and Doris Day had it right: Que sera sera, indeed.

Sending you many good, positive thoughts on this beautiful Tuesday morning.

Kristine

2nd AVR June 2018, age 55
Edwards Perimount valve with a dacron graft
1st AVR May 2006, age 43
Medtronic Freestyle Aortic Root Heart Valve 29mm, Ascending Aorta Repair
Both surgeries at Northwestern Memorial Hospital, Chicago, IL
 

tom in MO

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Good luck Superbob. If the decision is hard, it's probably because both paths have equal merit. You might want to ask if more frequent or a different type of monitoring is an option.
 

Superbob

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Good luck Superbob. If the decision is hard, it's probably because both paths have equal merit. You might want to ask if more frequent or a different type of monitoring is an option.
Yeah, thought I might request an echo at 3 months, Tom. Good idea. Won't ask my cardiologist right now 'cause she may be sick and tired of me by now. ;)
 


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