Worth a try....

[Magic8Ball]

Well, like many of you i will try to summarise the situation and hope for some helpfull pointers.....i can't be bothered to spell check anything at this stage so appologies for mistakes...

I've had a bicusp aortic valve since birth which has been monitored every year or two throughout my life so far (i'm now 36). 3 years ago i moved to Australia from the UK and started the healthy lifestyle taking up taekwondo etc.

Well a few months ago i decided i needed a checkup so went to see a cardiologist who did the ecg and echo and said everything looks fine see you in 5 years....then i got the call back. Echo showed enlarged ascending aorta and i was sent for a CT scan. CT scan results received yesterday and show Aorta of 54-56mm which is bad by all accounts so i have been recommended to have an ascending aorta replacement but at the same time have my bicusp valve replaced with a mechanical valve to prevent re-operation at a later date.

Yesterday was a bad day.

So today i have a day off work to come to terms with it (which i think i have) and i now need to get as much info as possible to make myself more relaxed with the whole procedure.

I've been told i need a Bentalls procedure and that i should have a 95% chance of comming through with no complications.....would still prefer not to be rolling the dice at all.

So heres my plan and some queries, if anyone can shed some light on them i'd appreciate it.

1. I see my cardiologist in 3 weeks to ask further questions and get refered onto a surgeon.

I'm going to contact my original cardiologist who has seen me since birth to get a second opinion and to see if they can check records to see if this is a recent development or if it has shown signs of gradually getting larger over time.

I'd also like a recommendation on surgeon and or hospital if possible.

2. I want to get informed about the best choice of mechanical valve.

3. I want to get the best possible surgeon, what the hell do you look for.....i guess i'd want someone who has at least done the Bentall procedure at least 10 times....but i hear its only done 2-3 times a year here in Perth. So i could have a good surgeon here who just hasn't done it enought and i could go elsewhere and pick someone who has done it more but isn't as good a surgeon...catch 22 and all that.

4. Where do i go? do i stay local (Perth WA) travel to Sydney/Melbourne or go back to the UK...or even go to the US.

Is the travel/stress and isolation more difficult to deal with than staying local with visitors and suport and perhaps not getting the best surgeon possible.

5. What are the complications to expect (i'm not a lucky man) so stroke, blood clot, Mental health, Death etc look to be mentioned but is there anything else.

6. How long do you last afterwards....will i reach 50..60..70..?

7. Whats life like on warafin, been told i'll bruise and bleed more and to avoid contact sports....**not happy** but worst of all it looks like i'll never be riding my motorbike again unless there are some bikey warafin takers on this site to tell me different.

So, i guess thats enough drivell and over to you guys to assist with any pointers to get me going.

Thanks in advance.

 

[DeWayne]

I just underwent basically this same surgery 2 months ago. You don't say how much of the aorta has to be replaced, whether or not the arch is involved, in my case the aneurysm was into the arch but the dialation did not include the vessels out of the top of the arch so they did a crossway cut and replaced only the bottom part of the arch. I was at 5.8 CM dialated about the same as you. If the entire arch is involved it gets much more complicated, if none of the arch is involved it is easier.
The aorta is a much bigger deal here than the valve. You want a surgeon who has experience in this area. As my cardiologist told me, you need surgery and it needs to happen in the next 6 months, you are at risk for the aorta bursting, if you remember the actor John Ritter, this is what killed him. Immediately you should not be picking up anything heavier than 10 pounds, period. I was told prior to surgery I could do things, just not lift.
As for valve types, I know some will tell you about the on-x valve, but this valve I was told did not have the proper setup for the dacron aorta to be attached, so that probably leaves you with St. Judes or a couple others, St. Judes is a well used long successful valve.
I however opted at my age (52) to got with a tissue valve, I received the Medtronic Freestyle valve, which allowed me to stay off coumadin.
I cannot tell you much about coumadin, others here including Tobagotwo can give you much better info on that than I can give you.
For me this was a second surgery, my odds of success were put at about 93-95%, hey said if it had been my first the odds were more like 97%. But here I am typing this so I guess I have to say my odds were 100%
My surgery at Emory University in Atlanta was done by a surgeon who's specialty was aortic replacement. Again I will say that your choice of surgeons should be based on their experience with that part of the procedure as a priority.
I wish you the best of luck, but remember starting immediately do not lift anything over 10# till after your surgery and the doc has cleared you to do so. At 8 weeks I have been cleared to resume anything I want to do, just used common sense, if it hurts stop!

Oh yeah and I plan on living into my 80s!

 

[OldManEmu]

Welcome

Welcome

Welcome aboard don't panic. Magic8Ball I can't comment on Perth hospitals or surgeons, however we do have a couple active of members from Perth one Aussigal who had a Bentall. There are a few issues you have raised. I will attempt to address them. When the Aorta reaches >50mm the risk of dissection (rupture) becomes greater than that of surgery. The Bentall procedure is the most straight forward for your condition, however depending on the condition of your bicuspid AV it may be repaired and only the ascending Aorta replaced however you have the possibility still of needing the aortic valve replaced in the future. Being a UK citizen you would still be entitled to use the NHS. However I would forget about the US, the cost is close to double that in Australia and your Australian health insurance will not cover surgery outside Australia. For a guide the typical US list price for this operation is in the region of USD 100K, if you have complications it can be far greater than this. The Bentall procedure should last you a life time however there is no guarantee. Surgeons generally prefer to use a mechanical valve with the ascending aorta preattached at the factory as this makes it easier for the surgeon, not all manufacturers make valves with this preattached aorta. I can't comment on day to day Warfarin management, as I am not on it, some seem to have no problems at all, others have problems with management. As for activities on Warfarin this is a personal decision on how much risk you are prepared to ware. Contact sports like Australian rules or rugby are definitely out. As it was explained to me if the activity carries a risk of concussion then it carries greatly increased risk on Warfarin, of a brain bleed. Being a motorcyclist myself and having made one trip down the road, I can attest to the bruising and pounding the body takes even with the correct protective gear, I certainly wouldn't have liked to have done it on Warfarin.

 

[Karlynn]

Welcome! Take some deep breaths. There are a whole lot of people here who know the fear and anxiety and uncertainty you face - and we're here to write about it!

St. Jude mechanical valves have been used many years with much success. I have one going on 15 years now. I was 32 when I had my mitral valve replaced. The new valve with promise is the On-X. You would want a surgeon willing to implant it and a surgeon with lots of valve replacement experience (no matter which valve you choose). The On-X has promise in that at some point down the road it may require a less aggressive anticoagulation protocol instead of Coumadin.

For a little read on Coumadin - go to this link and give it a read, then feel free to ask any questions. http://valvereplacement.com/forums/showthread.php?t=17116

 

[Marguerite53]

Welcome, Magic! I have a 24 year old son who often thinks he walks under a black cloud.....I know how to deal with you guys!! Think of it this way... so far you've been "paying your dues" with little things. So, those have paved the way to this larger thing (alright, enormous thing) and since your dues are all paid up..... it won't really be so bad.

We do have our lovely lady from Perth, Tonia ... Aussigal. I know she will be along soon to say hello. She and I had our surgeries and ocean apart, but less than a day apart (I think....confound date line) so we "jumped" into it together. She had a far less easy time of it.... but the good news is that now she feels quite wonderful and it's not even been 6 months!! While I don't think she rides a motorcycle, she is raising 3 boys (that has to be a fairly close comparison!! ) and can attest to the rigors and lifestyle on coumadin.

Your plan sounds excellent.

Can't advise with the surgeon choice. Your procedure is more complex and specific, so I'm sure you will opt for an experienced surgeon...wherever he is.

As far as choosing the valve..... please discuss this with the surgeon. My personal feeling is that since there are differences, your chosen surgeon may have a preference (one may just be easier for him to install, he may have had a better success rate with one in particular, etc.) and you should seriously look at his preference. The one he's had the most experience with would be what I would choose. Don't want him fumbling over the instruction manual during surgery!!

Everyone is different. There are SO many variables going into this type of surgery (meaning all types of valve surgery). To list the possible complications would not be feasable. If you don't have the surgery, you die for sure. That should be enough incentive! We have 1700 members here. I don't know the exact statistic, but they have overwhelmingly been successful surgeries.

Please turn the corner toward optimism. It is very difficult, and especially at your young age. But we are all so lucky to have this option. Visit the active lifestyles part of our forum. There is a lot of discussion about every kind of activity there. PM some of those members who are of a similar ilk and get a good reading of their experience. It honestly is not as bad as you are probably thinking.

Visit often...start new threads with any kind of question that comes up for you. Keep us posted!! We're looking out for your news, now!

Marguerite

 

[Ross]

With something that large, your in danger of blowing any day. Not something to be wasting time on. Find someone how has done many bentals and in the best possible facility you can get too. You know about the complications, so nothing to mention there. Coumadin or Ratsak as you folks call it, is not a big deal, just an inconvenience. For the most part, you'll be able to do whatever you did before, but you must use common sense in protecting yourself. I don't know that I would continue Tae Kwondo, but others here have. Get er done as soon as possible.

 

[PJmomrunner]

In the interest of identifying highest volume hospitals:

http://www.health.vic.gov.au/specialtysurgery/cardiac.htm

 

[catwoman]

Contact sports -- I'm sure we do have some valve patients on warfarin who are involved in those. And I'll bet there are motorcycle riders who are on warfarin, too. Check out Active Lifestyles forum elsewhere here.

I understand how you feel. I was reeling when I was told I needed valve surgery.

I chose a mechanical to hopefully avoid re-ops. So far, so good. I have gotten much better, more useful info here about warfarin than the stupid, cartoony booklelts cardiology offices purchase to give to patients.

 

[Mike C]

Be agressive in setting up appts to get this taken care of soon. The chances of survival and living a good life are high with surgery, chances are not good to say the least if it dissects/ruptures.

If you go with an experienced surgeon, get a proven mechanical valve, you should live a long life.

 

[aussigal]

Hi Majic,

I am the member from Perth who had a Bentalls done in April this year.

In Australia we dont have the huge choice of surgeons or hospitals like our USA friends. So its not going to help much looking for someone with tons of experience here in Bentalls' cos you wont find them.

If you like and trust your current Cardio ask for his recomendations. I have the names of 3 surgeons I would let operate on me with the guy I had being my favourite choice . I would also get this done at "The Mount" hospital in the city.

Warfarin wont change your lifestyle that much, its only a daily pill and a tiny blood tests every few weeks which can be done at your local doctors for free. They say next year we are getting home-testing, which is a finger-prick test!.

We have another local Perth member who is quite an active sportsperson "Arpy" look out for him on the active lifestyles section here. He does the Rotto swim and stuff.

I sent you a PM with other local info...let me know if I can help...

Your Aorta is a worry to me , I am guessing you had the CT done at either Murdoch or Subiaco, either way its gonna be a pretty accurate measurement.

Keep in touch , we will be looking out for you

 

[Magic8Ball]

Well thanks for the initial feedback, the past two days have been a bit of a flurry of research and deep thought....

Thanks Aussigirl, looks like me and you have been assigned the same surgeon so that gives me some comfort to know he's not a newbie, not that any surgeon of that level really is.

I've brought my follow up appointment forwards a week as i too feel that no second opinion is really going to change things...even now i am a little jittery thinking i could hit the deck at any second if a dawdle too long.

I should see the surgeon the week after so in 3 weeks time i could be getting my surgery date....boy does life turn on a dime (it was sixpence but i altered the saying for all you yanks ).

I'm just compiling a list of questions for work, cardiologist, surgeon, health fun etc so if any of you were as anal as i'm starting to become and already have a list of must ask questions then please fire them across to me in a PM.

Hopefully a healthy 36yr old choosing elective surgery will pull through no problems, certainly the mortality rates seem to favour my age bracket in the studies i've glanced at so far.

I guess i'm comming to terms with the news although i can't say my family are handling it too well...one question, how did you guys deal with telling your children (especially if they are young), i have a 4yr old who will no no difference if i'm not there but a 10yr old who i'm not sure if i'm going to be entirely honest with about what's happening...

How do you say goodbye to a 10yr old when you are not sure if you will see them in 24 hours or never again....its got to mess with the kids head if they know the truth before and if you survive then it was for nothing, if you die then knowing the truth beforehand is little comfort.

I guess your opinions are welcome on that last one, my current story will be along the lines of getting a calf injury fixed and see you in a few days...then fingers crossed.

 

[Magic8Ball]

Now that i've brought the meeting forwards i've just received a call to go to get my arteries looked at next week, its a 1/2 day procedure....don't know what it's called as i am waiting a call from my cardiologist rather than his PA.

Guess you guys will be able to fill me in on what they are going to be doing and how uncomfortable it will be.

Just spoken to my boss and we are going to see the Director and HR tomorrow to break the news and see how helpful they are going to be on the $$ front when i'm off.

I don't think i'm going to have to struggle too hard to get an appointment, they seem pretty keen to get me in.

Anyone want to buy a motorbike?

 

[DeWayne]

thousands and thousands of people under go this type of surgery every year, when they give you "odds" the odds are pretty darn good. A normally healthy person can expect few problems with todays technology. My first surgery was in the stone age of Open Heart Surgery (1959) and I am still here! Take a positive attitude, when I was told I already pretty much knew in my heart what they were going to tell me. The hardest thing for me was deciding on which valve, I did put a will together and such, but then I should have done that years ago.
When I went out of room to surgery I told my wife and my brother I would be seeing them in a while. Sure there are risks, but the odds weigh very heavily in your favor. The other option is to do nothing and trust me you would lose if you go that route.

I would just tell my kids that you will be home in a week and better than ever. Don't dwell on the worst case, prepare for the best case. Oh yeah, and if you don't have a reclining chair you might want to look into getting one. It is a whole lot easier to sleep in the first few weeks!

 

[DeWayne]

Now that i've brought the meeting forwards i've just received a call to go to get my arteries looked at next week, its a 1/2 day procedure....don't know what it's called as i am waiting a call from my cardiologist rather than his PA.

Guess you guys will be able to fill me in on what they are going to be doing and how uncomfortable it will be.

Just spoken to my boss and we are going to see the Director and HR tomorrow to break the news and see how helpful they are going to be on the $$ front when i'm off.

I don't think i'm going to have to struggle too hard to get an appointment, they seem pretty keen to get me in.

Anyone want to buy a motorbike?

I assume that is the catheterization. Not a big deal other than the time you have to lay still after the procedure. You should be awake and coherent through it,about the only thing you will feel will be the initial local injection, oh yeah and when they shoot the dye in you get a really nice warm rush through your body. The procedure takes a little over an hour on average, but afterwards you have to lay still for about 5 more hours till they are sure your incision won't spring a leak.

 

[Magic8Ball]

Ive been told its an angioplasty (apolgies for spelling) but i guess it could involve what you said....

When you say incision, where exactly is that made...sounds like its not an entirely minor procedure.

I was expecting an injection into the arm like the CT but i guess if they are pumping stuff into you for an hour an injection won't do the job....

 

[OldManEmu]

P.J. thanks for the stats link

P.J. thanks for the stats link

P.J. the link you provided was for the public hospitals in Victoria my state. My AVR surgery was at one of the listed hospitals in the last period covered 2004/05 so I was part of the stats! I didn't know these stats were published publicly. I was surprised just how few in the 40-49 age group made up the OHS stats, 6%. The other surprise was that the risk stayed low until such advanced ages. I shall keep a lookout for future year?s stats now I know they are available, especially seeing I am in the group that will require a redo.

 

[DeWayne]

Ive been told its an angioplasty (apolgies for spelling) but i guess it could involve what you said....

When you say incision, where exactly is that made...sounds like its not an entirely minor procedure.

I was expecting an injection into the arm like the CT but i guess if they are pumping stuff into you for an hour an injection won't do the job....

Basically andioplasty and catherization would be the same thing, they make an incision in the femoral artery in your groin, the upper part of your leg. You will also have a IV in your arm.
They then run a camera on a wire up and into the heart taking pictures of everything. The dye is injected to color the blood vessels so they can see if any blockages are present. They do this because if there are they want to take care of them while they are in your chest rather than have to open you up in 6 months or a year to fix it. At 36 I would be surprised if you had any blockages if you are healthy and exercise as you have said.
FOr the most part the cath/angiplasty is not a big deal, of course they will tell you stuff that will sound scary because they have to, but its a pretty simple procedure, nothing to get worked up over.

 

[pipersmith]

I just wanted to address the kids issue....
I am a 33 year old mom of 4 little ones (well, not so little anymore ) I have a: 12, 11, 9, and 3 year old. I have tried to be honest, and provide the very basic information, without sharing more than necessary, as I was afraid of scaring them. I try to downplay it a bit, without lying. I use terms they will understand - medical terms sound a bit scary. My 12 year old knows and understands the most - of course, and she seems ok with it. My 11 year old son takes Adderall, with a family history, I decided to take him to a local pediatrician (who is also a pediatric cardiologist) to make sure that he has no heart defects. My other two basically forget I mention anything about a minute after we talk - for which I am thankful!! I also waited to speak to them until I had a better handle on the situation. (They can smell fear )

Read through past posts. I asked the same question when I first found the site - there are many past posts with good information - about having the kids visit and speaking to them.

Best of luck - and keep asking questions - it will help tremendously!!

 

[catwoman]

How do you say goodbye to a 10yr old when you are not sure if you will see them in 24 hours or never again....its got to mess with the kids head if they know the truth before and if you survive then it was for nothing, if you die then knowing the truth beforehand is little comfort.

Magic8Ball:

I understand full well, even though I'm not a parent.
However, I have 2 nieces & 1 nephew and I love them all very much. My nephew graduated from high school in Garland Texas in May 2003; my condition was too poor for me to withstand a 140-mile roundtrip without an overnight stay to see him graduate, so we had to miss the event.
I went on short-term disability the next week.
Two weeks after Ryan graduated, he flew to Germany with a school group and would return the day before my surgery. Thinking I might never see him again, I managed to drive myself to Dallas-Fort Worth Airport to see him off. Felt like crap, though. But it meant a lot to me. (The handicapped parking tag I had sure came in handy then.)
He flew back the night before my surgery and, despite jet lag, was in the waiting room during my surgery.

I don't know what I would have done with children. I'm sure I would have hidden many of my concerns, to reduce their fears.
They do need to know you will be having a serious operation, will have a fairly lengthy convalescence, but will be healthier than ever once you've fully recovered. I would devise a list of things they can do for you during your convalescence, to make them feel wanted, needed & loved. And praise them for helping you get better.

 

[Magic8Ball]

Thanks again for the feedback, there is obviously a lot going on and i will be sheltering my 10yr old from it all.

As far as he will know beforehand i'm going to be going into hospital for an operation on my back....i need to tell him something like this as we were planning to move house (not now) and i need to be less mobile so i can blame it on my back.

It will give me the opportunity to give him a hug before i leave etc.

This is also the excuse i will be using for people outside of my immediate family to explain why we are not moving house etc....all of the immediate family know the truth.

Once i have had the operation (and survived) i will obviously have to tell my son the truth, kinda got to as the scar will be on my chest and not on my back but i intend to see him a couple of days later once the tubes etc have been removed and i feel a little better so that its not too much of a shock to him.

He is a very advanced 10yr old and would worry himself stupid if i even hinted at what was actually happening so he will either know afterwards when it is ok or afterwards when it is not, if it is the latter no amout of prior knowledge will make him feel any better.

Regards.