New valve and a new ascending aorta - a few questions.

[Joecb]

When I was 17, a doctor discovered a murmur during a routine examination. I was a senior in high school, played football, ran track and was asymptomatic. The doctor referred me to a cardiologist who listened to my chest and confirmed that further testing would be needed. To make a long story short, they found that I had a slightly enlarged heart and > 80% regurgitation. A valve replacement surgery was scheduled and I had the surgery about a week later. I chose to receive the mechanical valve because I was told that it would fix the problem and would last for a lifetime. I became a vegetarian and have continued exercising religiously to avoid any further complications.

This year is my 20th anniversary. I have done everything that I probably would have done if I had not had my valve replaced. I have water skied, lifted weights for years, mountain biked and even became a career fireman. All has gone according to plan until this year. I began seeing a new cardiologist last year. This year a very thorough echo was performed and he saw that my ascending aorta was enlarged. I don't think this had ever been checked in the past. It was confirmed by CT that I am currently at 5.5cm so although my valve has performed as planned, I now have an aneurysm that will require another surgery. I wouldn't say that I am asymptomatic, but the symptoms (maybe these are symptoms) that I may have are minor (feel my heart beat in my throat - sometimes makes me cough). I am still exercising vigorously or at least I was until I got the news this week. Now I'm backing off until after the surgery.

In a few weeks, I will go in for a valve replacement and aortic graft. I've read about it on this forum and have a much better understanding of the reasons that this is necessary and why it wasn't done when I was 17. I still have a few questions and would appreciate any information that you may offer.

Is it reasonable to expect the valve and graft to last for the rest of my lifespan? Do I need to have the rest of my aorta checked to ensure that there aren't any other aneurysms? Are there typically any problems where the graft connects with the aorta? Is there any thing else that I can do to be proactive so that I can be here for my wife and kids for years to come?

Thanks.

Joe

 

[Freddie]

Hi there Joe. Wish I could help you, but you've made me think that down the line that this too might happen to me
The weekend can be a little slow but someone will be around to answer your question I sure.
Anyways, Hi and welcome to the best forum around.

 

[tobagotwo]

You've required surgical intervention for valve regurgitation while you're still very young. It would be wise to read up on Bicuspid Aortic Valve Disease, just in case. You should consider getting a baseline diameter mapping of your entire aorta (including descending aorta), and getting it rechecked every so many years to determine if there are any other aneurystic hot spots that may develop.

As far as the valve and the graft lasting a lifetime: both should be able to do so. Certainly the valve's action should outlast you and would likely outlast your children.

However, there are no absolute guarantees. There are some unusual things that could require an explant of even a mechanical valve:

- An infection (infective endocarditis) damaging the valve site or vegetation from an infection on the valve

- Pannus (scar tissue) overgrowth impinging on the valve leaflets

- A blood clot on the valve, requiring removal to avoid stroke

- A partial detachment of the suture scar bond causing a perivalvular leak (blood leaking past the outside of the valve at the sewing cuff)

- Physical blockage or irritation, when the valve rubs on the heart wall due to myxomatous tissue allowing it to twist to the side

- Valve failure (very rare, but still possible)

- There are also no guarantees that any other valves or portions of your aorta won't require surgery someday.

These notwithstanding (they are not that common), the chances are excellent for you to carry that valve and graft for the rest of your days.

Best wishes,

 

[Phyllis]

Just want to welcome you, Joe. You can't get any better explanation than you just got from Bob. Please let us know when you have a surgery date and we will add you to the calendar.

 

[Duff Man]

avoid lifting heavy weight, do NOT smoke or chew tobacco, keep blood pressure and cholesterol under control, get serial MRI or CT scans of the aorta. That's what sticks out in my mind right now. I would also second tobagotwo's recomendation to read up on BAV. Maybe go to http://bicuspidfoundation.com/ . There's a ton to learn.

 

[netmiff]

just wanted to say welcome to the funny farm, Joe, and it is good to hear that your valve lasted 20 years - I haven't had mine for 20 months yet, so I think you can see where I am coming from!

As for the aneurysm, I would find out if my original valve had been bicuspid, and if so, check out through the congenital heart disease web site and the bicuspid valve disease site about any other issues to look for - I know that connective tissue and BAV can be closely linked.

Also, and I don't mean to scare you, but if it was bicuspid, have you thought about getting your kids checked out? and any siblings, if you have any?

 

[Ross]

Lets not forget to check for Marfan Syndrome. I doubt this is the case, but you never know. I had a normal bio valve, but developed an aneurysm that ruptured before ever getting to 5.0. I'm one of a couple of people here that survived a dissection. I now have an abdominal aneurysm measuring at 3.6. I've been tested for Marfans and a variety of other things and they have no explainations for me.

 

[jjay32]

The ct scan should have shown the whole aorta, so it there was a problem, something would have been said. The aortic graft will outlast the rest of you! You can request a copy of the ct scan. It has some cool pictures
View attachment 6629 This is mine with a 4.6 assending aneurysm.

Jjay

 

[Fran]

Hi! I had the ascending aortic aneurysm as well as the bicuspid valve replaced.

Got an Onx valve, and the 5.5 aneurysm grafted.

My aorta has been great when it's been viewed via TEE's for other stuff.

From what I've read at the biscuspid valve disorder site (it's very informational!), the likelihood of the aorta doing that goes with the bicuspid valve. The same dysfunctional tissue and cells doing their "thing" means we have to deal with this.

I was 44 when I had the new valve and graft, I'm expecting to keep going for a long time...HOWEVER, I've had clot issues since the surgery. If any of those had broken loose - I'd be singing a different story, if singing at all!

I don't think we can look too far down this road and try to foresee the threats. I absolutely understand your questions, but get the graft, stay healthy and fit (I am at the Y every single day, kicking butt for such an old girl, did my 10 miles on the bike machine in 40 min's yesterday!), and just take what comes.

We sort of have to combat what can seem like a fatalistic situation with almost indifference. Kind of a "bring it on!" mentality.

My nephew was born with coarctation of the aorta, he's got a bicuspid, I bet he'll have to deal with this later, too.

Get your new graft, heal, recover, and get back on track. That's all you can really do, your end of it.

Us exercise nuts really put "healthier" folks to shame who've never had the cardiac issues. So I see us living much healthier even though we've had these huge threats to our survival.

My best to you! It's going to be fine.

 

[skeptic49]

Just a note to say welcome, Joe. Sounds like you're valve might have been bicuspid as others have suggested. Join the club

Best wishes,

Jim

 

[Ross]

The ct scan should have shown the whole aorta, so it there was a problem, something would have been said. The aortic graft will outlast the rest of you! You can request a copy of the ct scan. It has some cool pictures
View attachment 6629 This is mine with a 4.6 assending aneurysm.

Jjay

This is not a normal catscan, but a 64 slice catscan. Not all hospitals have them yet, but if it's available, it's highly accurate as you can see.

 

[Joecb]

Thank you all for the fast responses. It's nice to hear from those that have been through it and are still doing well. The list from Bob is excellent. I realize that there are some unusual things that can happen and I'd much rather know about them beforehand. Of course, I'm going into it with the expectation that it'll all work out well.

Phyllis- I am scheduled for Feb 18th.

I'm planning on dropping the weight lifting and focusing on push ups, pull ups, deep knee bends etc. to keep in shape. That'll be a bit of a change too, but I want to stay in shape for the long term like Fran.

I had my kids checked while in utero, but I I'd like to have them both checked again now that they are approaching their teen years.

One more quick question. My original biological valve was bicuspid. Will doctors typically order serial CTs to check for other aortic problems or is that something that I would need to have done on my own dime? Is there a blood test for Marfan syndrome? Ok that was two questions.

Thanks again.

Joe

 

[MrP]

Joe,
My health insurance covered costs for my CT scans before and after surgery, at least for the first two years. My surgery for composite valve replacement with Dacron graft for ascending aortic aneurysm was almost five years ago. And I am expecting insurance to cover costs for an MRI which I believe the doctor will order within the next month or so to evaluate my remaining aorta.

Concerning a blood test to determine Marfan Syndrome, I don't think this is widely available for now, but genetic molecular research is a focus for this to be a reality. Regarding diagnosis, I cut/paste below from the webpage for the Stanford Clinic for Marfans and Related Aortic Disorders:

Diagnosis and Treatment of Marfan Syndrome
A number of physical characteristics are commonly associated with Marfan, including bodies that are extremely tall and slender, usually with arms and legs that are disproportionately long compared to the torso, loose ligaments and joints, abnormal curving of the spine and chest wall abnormalities.


Approximately 90 percent of patients with Marfan syndrome experience changes in their heart or blood vessels. The most serious problem associated with Marfan syndrome is weakness of the aorta (the body’s largest artery). People with Marfan syndrome often develop enlarged aortic vessels or thoracic aortic aneurysms, and without treatment, they are at risk of death from dissection or tearing of the aorta. At Stanford, we specialize in aortic root replacement surgery, including replacing the aortic valve with a mechanical valve. With aortic root replacement surgery, the aneurysm is repaired while the patient's own aortic valve is preserved. This method helps to avoid the use of long-term anticoagulant (blood-thinner) medication and may reduce the risk of stroke or endocarditis.


In approximately 50 percent of persons with Marfan syndrome, nearsightedness and cataracts are common problems, and the lens of an eye is off-center. Thanks to the multidisciplinary approach at Stanford, ophthalmologists specializing in Marfan syndrome related optic issues offer consultation and a range of treatment options.

Sometimes, Marfan syndrome is so mild that symptoms are few. A diagnosis of Marfan syndrome is made based on a thorough physical examination of various body systems and a detailed family history. In addition, our specialists may run specialized tests, including an echocardiogram of the heart and a detailed eye examination by an ophthalmologist. Aortic disorders are diagnosed thorough a physical examination and a detailed family history and with cardiac imaging that includes the latest innovations of echocardiograms (ultrasound of the heart), CT imaging (Computerized Axial Tomography) and MRIs (Magnetic Resonance Imaging). Visit our Marfan Syndrome team for more information.

The Stanford University Marfan Clinic provides specialized care for Marfan syndrome and related aortic disorders.

All my best,
MrP

 

[Curtsmum]

Hi Joe, sorry i can't be of any help. Just wanted to say welcome, sorry you have to go thru it all again and best of luck with surgery.

 

[WayneGM]

Welcome to VR. Glad you found us. I don't have any answers to your specific questions, but best wishes and good luck.

 

[ALCapshaw2]

I was a bit surprised to note that your surgeon wants to replace your mechanical valve.

You may want to look at the On-X valve which has several technological improvements over the older mechanical valve designs, including a BARRIER to prevent (or at least retard) Pannus Tissue Growth. See www.heartvalvechoice.com and www.onxvalves.com Contact the company for additional information and supporting documentation.

'AL Capshaw'

 

[MrP]

Joe,
Having been through the same surgery, i suggest you ask your surgeon about replacement of the ascending aorta with Dacron graft all the way into and including the "lesser transverse part of the aortic arch" to avoid another surgery down the road...replace as much diseased aortic tissue as possible. this technique is now widely performed to avoid another surgery down the road. it requires using what is called a "semi-beveled technique" with a Dacron tongue along the base of the arch and Dacron up to the very first artery to the brain...the inominate artery. It will require DHCA to cool your blood and longer time on the heart pump...and a skilled surgeon to resect the aeursym very quickly while the heart machine is turned off".

Yes, they should CT scan or MRI your entire aorta and monitor periodically. A 64-slice CT provides an image of the entire aorta.
All my best,
MrP

 

[Joecb]

I will check out the On-x valve. The surgeon specifically mentioned St. Jude and Cabomedics so I'm not why the On-x wasn't mentioned.

As I understand it, he felt that the replacement of the valve with the Dacron tube would help ensure that there wouldn't be an leakage around the valve connection. So, yes we will be replacing the aorta all the way to the arch with the Dacron graft although he didn't go into the specifics of the attachment technique. I'll ask.

After this is all over, I will definitely ask for the yearly CT as well.

This forum is a great resource. Thanks again.

Joe

 

[Mary]

Hi Joe and welcome.
You've got alot on your plate, but I can tell you're going to be fine. Let us know if we can help in any way.

 

[kbheart]

Hi Joe,
Welcome to the site. I went throught the genetic testing for Marfan's. I tested negative but they said that it was still possible that I had Marfan's or probably some other related connective tissue disease. A positive genetic test can help verify a diagnosis but it's not perfect. They do a thorough medical history and physical exam to make a diagnosis. It's complicated! I'd check with your cardiologist as to whether he or she thinks it would be useful.
Best of luck!
Kris