Greetings from South Africa - new to forum

[Mat Durrans]

Hello from a new registered user in South Africa. I found this site while going through what many of you have no doubt experienced yourselves - facing a valve replacement with a bewildering lack of knowledge and searching for some kind of help/advice/information to help me make an informed decision about the inevitable operation.
I notice that most registered users tend to be in the USA, but that side of the world or this, northern hemisphere or southern, a heart is still a pump, so here goes with a couple of my own questions - if anyone can offer any advice it will be gratefully received.
I have a Bicuspid valve, have just turned forty and am in pretty good shape, and after two cardiologists and a surgeon I've been told I need the aortic valve replacing - and pretty soon too. It's called elective surgery I believe, and that means I get to choose when to go in - the first gap in my business/private life is going to be the end of May - so I have one more visit with the surgeon to answer any final questions and book a date.
I have so far been disappointed with the rapidity of the examinations, though I have now had two Echocardiagrams - both done in under 15 minutes. I discussed what the cardiologist discovered, but he hadn't had any time to really study his results from either the Echo or the ECG (can't remember the exact term - but the sensors,treadmill/heart monitor affair) - just feel like I'm on some express-way to the operating theatre. I appreciate that this is just one more in a long (30 year long, my surgeon reminds me) line of procedures, but I get the impression that I'm going to get what I'm given, and should be grateful for it.
After being offered a mechanical valve I've actually opted for a bovine tissue valve -my job as a motorcycle magazine editor carries too many risks for ACT. I've yet to be given the brand name of the possible valve replacement, but am not sure how much good that will be anyway - are there major differences between brands? Is such information freely available?
As I'm being herded towards this rendezvous with OHS I get the impression I should seek a 2nd opinion, but since I'm paying for all this myself, I will only do so if it will prove useful. My problem is that in a country as small as this one, and with as few hospitals as we have that are capable of such involved surgery, how likely is it that I will actually get a genuine second opinion? I'm pretty sure there's a small pool of such professionals over here, they probably all play golf together...
I don't know whether to try and battle my own cynicism and paranoia, or make a concerted effort to root out an alternative view of my condition. Your thoughts?
Anyone heard anything about South Africa, or is there even someone out there living this side of the planet?
Sorry about the length of my first post, it's amazing what comes pouring out given half a chance!
Regardless of any replies, this site has already been invaluable to me, the best information I've yet to find during the last couple of weeks... so thanks for that!

 

[Marguerite53]

Welcome to our wonderful community. I hope you will get all sorts of varied responses to your many questions and concerns. I hope you will come back with new questions and concerns as you digest all that we may have to offer.

First of all....I'm abit uncomfortable with the notion that the "elective" part of this surgery means that you get to choose when. My understanding of elective is that you get to choose whether you want the surgery at all, or not. Trust us....you WANT the surgery!! You haven't mentioned any symptoms you may be having. You haven't mentioned whether your aortic valve is experiencing stenosis (closing up due to calcification...hardening) or whether it is regurgitant (leaking and flapping around in too large a way). Symptoms and statistics generally dictate when. Most of us would agree...waiting too long can damage the heart. It is good that you are scheduling things for this spring. That is probably soon enough, though without any numbers, we could not form a non-professional opinion (and you will get lots of those here!! )

Your echoes should honestly have taken 30 minutes or so. Did they arch your neck back and echo your throat? I can't remember why that is done (help me Tobagotwo or others...) but it is to rule out other problems.

Your valve choice should dictate to some degree which surgeon you choose. Much as you wouldn't take a Mercedes to a Toyota repairman as your first choice, so you should have a surgeon who has experience with bovine tissue valves. That said, I am very happy with my CE (Carpentier Edwards... see my signature) valve. They have a website. You should peruse the latest choices as they have anti-calcification properties which make them more desireable. Your must check to see that your suregeon has the newest models available. When he is inside you, he may deem that the "perfect fit" (which you most certainly want!!) is a different valve from what you have chosen, but at least you will be educated about some of the variations.

I wish I had time to write more now. I know others will be along.

Again, welcome!!!

Marguerite

 

[CathyK.]

Welcome! I have not had surgery yet so can't give you information as far as after surgery. They are looking at a different part of the Aorta, acending I think, from the neck view. I was one that did not get a second opinion. I was happy with my surgeon and cardiologist and chose to stick with their decision. I asked alot of questions and they answered them with knowledge and my surgeon does hundreds of heart surgeries a year.

I am also going with the bovine tissue valve and it will be the same one that Marguerite stated. It will be the newest version.

Good Luck and ask away. These people here are a God send!!

 

[Karlynn]

Welcome, and if I were you, I'd be a bit concerned with the brevity of your exams too. I think they should also be checking to see if you have an aortic aneurysm. From what I understand, this is fairly common with BAV and it is not always readily seen on an echo. A CT scan is the test usually used to detect and measure aortic aneurysms. If they should find that you have an aneurysm, this could affect the type of valve you get. Some valves are better to use than others due to the type of structure they use to shore up an aneurysm. This is not to say that it's highly likely that you have an aortic aneurysm, but it would be something you (and the surgeon) would need to know going into the surgery.

 

[Mary]

Hi, and welcome to the bicuspid aortic valve club! A few quick thoughts and then you can maybe answer what you like and ask some more!
No echo should be done in 15 minutes. Mine generally run at least 45 minutes-- sometimes an hour. Do you have access to your echo records? In the US, all patients are guaranteed access to their records, and most of us on this forum ask for them, and then keep them for future comparison. If you can get them, please do, and then post the values.
There are different types of nonmechanical valves--porcine and bovine are the most common. I have an Carpentier-Edwards bovine. There is a thread in the valve selection forum that asks members to tell which type of nonmechanical valve they received. You might want to look at it and read the comments. http://www.valvereplacement.com/forums/showthread.php?t=14312&highlight=type+tissue+valve
I don't remember any members residing in S. Africa, but you can still get second opinions from Cleveland Clinic by having your test results sent to them. I don't know much about the process, but others do, and they will be along to offer advice if you want to pursue that option.
Once again, I'm glad you joined us, but I hate that it's under these circumstances.
Mary

 

[Mat Durrans]

Wow, quick responses!

Wow, quick responses!

Thanks for your quick responses.
I can't remember the figures exactly, but the major problem is stenosis - figures bandied about include 50 for one of the gradients - 55 for another. There is some regurgitation. As far as I know I have no symptoms as yet, apart from (maybe) slight shortness of breath - but that may just be a combination of trying to get too fit too quickly! Condition found as a result of an insurance requirement.
It is oh so weird to be contemplating something as invasive as OHS yet still feel as fit as a fiddle.
As far as elective surgery - oh, yes - I'll be having the operation, it's just that as far as I can make out I'm not likely to drop dead immediately - so I'm trying to make a gap in my schedule of a month or so - difficult given that I run a monthly periodical!
I will be calling the cardiologist and surgeon in the morning - I want those records! After all, what's the purpose of a second opinion if you can't compare it in detail with the first?
Thanks very much for your help so far, you've already given me the impetus to sort those records out...
Mat

 

[Phyllis]

Welcome to the forum, Mat. Here is the url for a second opinion from Cleveland Clinic: http://www.eclevelandclinic.org/
I would think it is well worth it to send them your records (once you have them all) and get another opinion.
Best wishes,
Phyllis

 

[Mary]

Thanks for your quick responses.
I can't remember the figures exactly, but the major problem is stenosis - figures bandied about include 50 for one of the gradients - 55 for another. There is some regurgitation. As far as I know I have no symptoms as yet, apart from (maybe) slight shortness of breath - but that may just be a combination of trying to get too fit too quickly! Condition found as a result of an insurance requirement.
It is oh so weird to be contemplating something as invasive as OHS yet still feel as fit as a fiddle.
As far as elective surgery - oh, yes - I'll be having the operation, it's just that as far as I can make out I'm not likely to drop dead immediately - so I'm trying to make a gap in my schedule of a month or so - difficult given that I run a monthly periodical!
I will be calling the cardiologist and surgeon in the morning - I want those records! After all, what's the purpose of a second opinion if you can't compare it in detail with the first?
Thanks very much for your help so far, you've already given me the impetus to sort those records out...
Mat

Mat,
You need to know if that's the mean or peak gradient when they mention your gradients. Peak wouldn't be too worrisome; mean would. And if your valve is stenotic, you want to know the valve opening size.

 

[PJmomrunner]

Lars Svensson, MD, who is a respected cardiothoracic surgeon and aortic specialist at the Cleveland Clinic (others have posted links to CC) is himself South African by birth, I believe. He may even be able to suggest a surgeon who is local for you.

 

[Susan BAV]

Hi Mat -

Welcome! Glad you found this site! My AVR was considered elective too which I thought was ridiculous when I first read that description from the insurance company. But I believe that it is just considered elective as opposed to emergent or emergency surgery. The term is misleading. When my gradient was measured at 55, I was already pretty ill.

There is a site called Bicuspid Foundation, which you might want to get on and search out information regarding your condition.

Being an editor, no doubt you're computer saavy. Find out who are the bicuspid experts around the world and email them your stats and questions and see what replies you get back. Hey, this might be a great story for your magazine when it's all said and done.

Keep us posted. Glad you found this terrific site. Take care.

 

[ALCapshaw2]

Welcome to our world Mat! You may be our first member from the 'other' U.S.A. but we have several members from the UK, Australia, and New Zealand (even Singapore).

My first choice was a Bovine Pericardial but I ended up with a St. Jude Mechanical Valve due to severe radiation damage.

Be aware that ALL tissue valve will deteriorate and eventually need replacement. The (new) Bovine Valves are hoped to last 20 years but only in OLDER patients. The younger you are, the faster they wear out. Sorry about that.

You may want to look into the On-X (third generation) Mechanical Valves. That's what I have chosen for my Mitral Valve replacement when the time comes. On-X valve were designed to have less turbulence and do less damage to the blood cells. There as studies underway to evaluate NO Coumadin use in the Aortic Position in Low Risk Patients who are in otherwise good health.

In fact, one most interesting study of the On-X valve came out of South Africa where there was a large under-educated and / or non-compliant patient base. Stroke Risk was GREATLY REDUCED with the On-X valve vs. older mechanical valves. Another study is underway to evalute REDUCED Anti-Coagulation Levels for Moderate Risk patients. See www.onxvalves.com and/or contact the company for more information.

Bottom Line: SOONER is BETTER both from a risk and recovery point of view. Less damage to the heart and all that.

'AL Capshaw'

 

[StretchL]

Hi, Mat! Greetings from the US.

In reading your post I thought of two things, the first of which I'm sure you already are aware of:

1) Christiaan Barnard performed the world's first heart transplant in your country, in Cape Town. I don't know if that means that anyone there knows anything about hearts today, but I would bet there are some good docs in South Africa!

and

2) My wife, Noni, needed back surgery while she was living in Kenya in the early 90's. She went to Jo-burg and to this day still says that her care in the hospital there couldn't have been better. AND she's now without back pain and has not had to have a re-op, both signs of what a good job they did on her there.

Best wishes as you move through this process!

 

[briansmom]

Hi Matt,
Just wanted to say welcome. This forum is the best and I couldn't get through without them. I don't know what type of riding you do, but my 16 yr old son is(was) an off-road motorcycle rider/racer before his aorta dissected. You can see from the picture that his surgeries have taken him off of his bike and put him in a Yamaha Rhino. He will be having AVR surgery in March. We have chosen an on-x valve because of his age.

BTW, the Southern California community was devastated by fellow South African Elmer Symons passing. He was a great young man and was great with all our young racers.

 

[Magic8Ball]

Welcome, i too would be concerned at the 15minute echo's and the cardiologists lack of interest at looking at the results....

But, if you have a BAV then it sounds like you are probably nearing the age when you will need something done, especially if you feel breathless.

I'd insist on a CT scan to assess the ascending aorta also as this is a known co-condition to a BAV.

With respect to the 'small pool' of surgeons for choice i also experienced this where i live in Perth, West Australia but have found that the surgeons here are excellent, committed and coveted by the hospitals they work in....my surgeon works here because of a lifestyle choice for his family and although he realises that the numbers will be down on bigger cities he still gets complicated work and good training....he is on the heart lung transplant team here in WA.

I'd definately get a second opinion, not with a surgeon but start with another cardiologist and then work through to two or three surgeons, when you find the right one you will know.

As for booking one month off for the surgery i thought the same but have found that two months is needed to overcome the basics and get back on your feet and the third month lets you gain your confidence back.

Regards and good luck.

 

[BillCobit]

Hello from a new registered user in South Africa. I found this site while going through what many of you have no doubt experienced yourselves - facing a valve replacement with a bewildering lack of knowledge and searching for some kind of help/advice/information to help me make an informed decision about the inevitable operation.out given half a chance!

Hello Mat

There is a great item in our reference section:

ACC/AHA 2006 Guidelines for the Management of Patients With Valvular Heart Disease
http://content.onlinejacc.org/cgi/content/full/48/3/e1?ct

Many of us have found this publication to be invaluable for understanding valve disease.

 

[MrP]

Mat,
A wealth of information is available at the bicuspid foundation website mentioned in an earlier thread.

http://www.bicuspidfoundation.com

As others pointed out, BAV patients sometimes develop an ascending aortic aneurysm. BAV is a connective tissue disease and more than just a valve problem. Aneurysms may develop even years after aortic valve replacement (usually late 40s to 50s or later age), and once the diameter of the aorta expands to 4.5 - 5.0cm or greater, increased risks exist for rupture or dissection. Echo tests will only provide a good two-dimensional view of the aortic root and only a limited view of the ascending aorta. While aneurysms develop mostly in BAV patients with regurgitation, all BAV patients are at risk and should have periodic evaluations of their aorta using CT scan or MRI....even after valve replacement and/or aneurysmal resection. It is not uncommon for someone to have their valve replaced and then undergo a repeat operation years later to resect an aortic aneursym. While most with an ascending aortic aneurysm don't have symptoms, many do have symptoms including chest pain.

Other complications may exist...see the bicuspid foundation website for more details.

With respect to valve choice, there are many good opinions. In my case, knowledge of my aortic aneurysm occupied most of my worry, and despite being very active, I chose a composite mech. valve w/ Dacron graft mainly to reduce risks of another operation in my lifetime. I'm still very active post surgery but have stopped bouncing on my head. See pros vs. cons of different tissue valves and calcification issues as a function of age in other threads. There are good arguments on both sides of this decision and many experts. Also note many of the best surgeons will not recommend the Ross procedure for BAV patients despite successful operation in many (there's plenty of information available in other threads and in the literature).

This surgery is considered elective since it can be scheduled before an emergency situation arises, and timing of surgery is ultimately left to the patient after consultation with cardiologist and surgeon. Best advice you'll get....find the best surgeon at all costs.
Best of luck!
MrP

 

[readsforfun]

Hi Matt!

Please let me add my "welcome" to the host of others you've received! Isn't it absolutely amazing the wealth of information and knowledge that has been passed along to you so far! I just joined VR a short while ago and have been absolutely stunned, not only by the information housed within this incredible body of people, but by the warmth and caring of everyone here. Again, welcome!!

Jan