Facing a two-fer: aortic valve and ascending aorta replacement

[Guest]

Aging alumnus here, who had his first aortic valve replacement back in 2001 just before 9/11 at the University of Florida Hospital in Gainesville. That bovine valve has done marvels and lasted over 17 years (compared to what I am told is an average life of 12 years). But not only are tell-tale symptoms now showing up, but I am apparently a candidate for double replacement surgery, since my ascending thoracic aorta has been dilating in the meantime. If that is verified, it would seem to rule out any intravenous surgical procedure for aortic valve II and probably relegates me to the open-chest variety.

I have an echo-cardiogram scheduled for next Monday the 21st, then will see my cardiologist here in Tallahassee, after which the situation should be much clearer. Does anyone know if there are folks on these forums who have experienced this sort of double-doozer?

Best to one and all. PBE

 

[Warrick]

Assuming you had your first replacement because of a bicuspid valve it is relatively common for aneurym with BAVD, even after the valve is replaced and the ascending aortic artery appears normal it may dialate years later such as yourself.
This site explains a bit
https://badaorta.com/double-trouble-...tic-valve-bav/

 

[pellicle]

Hi

Aging alumnus here, who had his first aortic valve replacement back in 2001 just before 9/11 at the University of Florida Hospital in Gainesville. That bovine valve has done marvels and lasted over 17 years (compared to what I am told is an average life of 12 years).

one can be lucky, my revalve in 1992 was a homograft, and it made twenty years when the average for my age group was more like 17.

But not only are tell-tale symptoms now showing up, but I am apparently a candidate for double replacement surgery, since my ascending thoracic aorta has been dilating in the meantime. If that is verified, it would seem to rule out any intravenous surgical procedure for aortic valve II and probably relegates me to the open-chest variety.

a couple of quick points

• you're going to be better off (unless you are on deaths door) with an open chest, even for a simple valve
• I wouldn't classify this as a double replacemnt surgery because that's what I'd call those who have both Aortic and Mitral valve replaced at the same time (or those who opt for a Ross Procedure where they rip out your perfectly functioning "Tricuspid" valve and poke that into the Aortic position and give you a prosthetic valve back where the Tricuspid came from (thus somehow avoiding you have need a prosthetic valve ??)
• I've heard of a Double Valve (Aortic and Mitral) with a graft on the aorta too.

Does anyone know if there are folks on these forums who have experienced this sort of double-doozer?

quite a number of us, especially those who had their first surgery for a bicuspid aortic valve earlier and then (as Warrick clarifies) develop an aneurysm later in life (like me, Superman RobThatsMe ... and a few others I can't recall without looking them up).

You'll be fine ...

Best Wishes

 

[ottagal]

Great news that your bioprosthetic valve lasted 17 years, but sorry to hear about the re-do.
I agree with all the other comments.
Keep us posted and know that we are here for you.
Thinking of you and sending you best wishes.
P.S. If you don't mind sharing and me asking, how old were you when you received your first valve in 2001?

 

[DachsieMom]

I have a st Jude mechanical valve conduit - It is when they replace your aortic valve and a potion of the ascending aorta is replaced with a connected Dacron tube. I had a sinus of valsalva aneurysm. Due to the location, they used the valve conduit.

 

[Aortic]

Hello again, folks. I've gotten temporarily hung up by a username and password problem that seemed to resist solution, but Hank Eyring of valvereplacement.org managed to unscramble it, so I'm operational once again and will return tomorrow with the (somewhat surprising) results of my echo-cardiogram and cardiologist appointment.

 

[Aortic]

Back again. I did my echo-cardiogram yesterday morning, then saw my cardiologist. Results are surprisingly good: the replacement bovine aortic valve is no worse off (as it motors towards its 18th birthday) and my ascending aorta has ceased dilating, no less! So where are my symptoms coming from?

They aren't particularly severe ones, amounting more to some increased dizziness and wobbly-ness on exercise and a habit of sleeping 10-12 hours a day and awaking in a pretty groggy state rather than any very pronounced breathlessness. They have, though, been noticeable enough that I decided to suggest getting the echo-cardiogram done about six weeks before the initially scheduled date.

Well, we talked about diagnosing the symptoms and the cardiologist had two recommendations: (a) put me on a heart monitor for four days (that started early this morning); and (b) sometime later doing a sleep study to see if there is any apnea. I was down that road once before, complete with CPAP. It didn't seem to me to work awfully well, but the condition improved to the extent where I have had no more of the heavy snoring problem or awakening short-of-breath.

So... some remaining mysteries. I am encouraged by the relatively robust state of the aortic valve complex itself, though there's no question that I will need to undergo an operation not too far in the future. As the cardio says, whichever gives out first -- malfunction of the aortic valve or further dilation of the ascending aorta -- BOTH will need to be replaced at that point. And he very much confirmed what was said above about open heart surgery being the better bet even for simple aortic valve renewal.

In any case, the points made in your posts above were very helpful to me, so many thanks. And I'll revert once there is more news.

 

[pellicle]

Hi

Back again. I did my echo-cardiogram yesterday morning, then saw my cardiologist. Results are surprisingly good: the replacement bovine aortic valve is no worse off (as it motors towards its 18th birthday) and my ascending aorta has ceased dilating, no less!

that's excellent news!!

So where are my symptoms coming from?

dunno ... sorry

And he very much confirmed what was said above about open heart surgery being the better bet even for simple aortic valve renewal.

its always good to have opinions supported with another trusted source...

a habit of sleeping 10-12 hours a day and awaking in a pretty groggy state rather than any very pronounced breathlessness

FWIW a surprising amount of my friends are finding CPAP beneficial ... (we range in age from 40's to 60's but I'm not a CPAP user yet)

BTW, if you fill in your BIO it will make further answers easier without asking "how old are you" ... an stuff ;-)

Best Wishes

 

[tom in MO]

Back again. I did my echo-cardiogram yesterday morning, then saw my cardiologist. Results are surprisingly good: the replacement bovine aortic valve is no worse off (as it motors towards its 18th birthday) and my ascending aorta has ceased dilating, no less! So where are my symptoms coming from?

They aren't particularly severe ones, amounting more to some increased dizziness and wobbly-ness on exercise and a habit of sleeping 10-12 hours a day and awaking in a pretty groggy state rather than any very pronounced breathlessness. They have, though, been noticeable enough that I decided to suggest getting the echo-cardiogram done about six weeks before the initially scheduled date.

Well, we talked about diagnosing the symptoms and the cardiologist had two recommendations: (a) put me on a heart monitor for four days (that started early this morning); and (b) sometime later doing a sleep study to see if there is any apnea. I was down that road once before, complete with CPAP. It didn't seem to me to work awfully well, but the condition improved to the extent where I have had no more of the heavy snoring problem or awakening short-of-breath.

So... some remaining mysteries. I am encouraged by the relatively robust state of the aortic valve complex itself, though there's no question that I will need to undergo an operation not too far in the future. As the cardio says, whichever gives out first -- malfunction of the aortic valve or further dilation of the ascending aorta -- BOTH will need to be replaced at that point. And he very much confirmed what was said above about open heart surgery being the better bet even for simple aortic valve renewal.

In any case, the points made in your posts above were very helpful to me, so many thanks. And I'll revert once there is more news.

I was told by my wife and internist that I could have sleep apnea based upon my snoring pattern. I didn't have symptoms but went for a sleep study that was botched due to a computer failure and the incompetence of the hospital. They supposedly got enough data to determine I has sleep apnea. But I wasn't having symptoms and then my valve needed replacement and that took over for awhile. The nurse in cardiac rehab convinced me to pay more attention, as well as a member here. So I dumped the first sleep doctor and hospital and went to ones recommended by a friend, who's also a doctor. They told me I had apnea and set me up with a CPAP machine.

It takes awhile to get used to but now I wouldn't be w/o it. I actually fall asleep quicker now because my body is trained for sleep as soon as I put on the mask. It's the Pavlov effect Some of the "side effects" are great. I got to cut my blood pressure meds in half, my sexual function increased and due to the HEPA filter, my allergies aren't as bad in the morning. Plus, on cold days, I can go totally under the covers, because the machine delivers the air to breathe

It's hard to get used to the CPAP. One person told me to wear it while watching TV...I didn't. I just used it every day and in about 3 months got comfortable with it. If you have allergies, particularly sinus problems, for me the mask that goes over the nose and mouth was the best and mine has a humidifier.

 

[Aortic]

Thanks for these comments. I will fill in my history by this weekend. I actually filled it out two or three times while trying initially to renew my registration, but that didn't work for quite a while and so each time I lost the history that I had written. Short demographic note in the meanwhile: I'm heading toward my 77th birthday in another five months.

 

[pellicle]

I will fill in my history by this weekend..... Short demographic note in the meanwhile: I'm heading toward my 77th birthday in another five months.

that's pretty informative right there. Just the basics often helps in formulating a reply.

myself I don't think an exhaustive autobiography is needed

given your age I would give consideration to a biological prostheses, if nothing else it may simplify and medications you are currently on.

best wishes