Looking for validation

[Magic8Ball]

Ok so surgery is looming (Nov 16) and i'm pretty calm with my choices but have been reading a lot of threads lately with people being a lot more aggressive with their valve choice than i have been and so i'm just going to type out my reasoning in a thread and hope for some constructive feedback.

I have an aortic anurism of 5.6 max with no historical data on the aorta to judge if i can wait and see and so it needs to be replaced, my BAV is working fine and they would not be going in at this stage to replace it if it wasnt for the anurism but the thinking is 'while we are there, do it all'.

I had initially thought to keep my BAV and hope to get 10+ out of it before going mechanical but the surgeon talked me out of it with little resistance, my own mind was turning before i spoke to him and i didn't need much of a push as none of us really know if a BAV is a symptom of everything else or a causal affect (my reasoning not the surgeons).

I've never even considered tissue, from what i gather tissue is very popular in the states and north america but its not a big thing down under.

So i'm going for a separate St Jude Mechanical with a Dacron graft for the aorta unless my aortic root is buggered also then it will be a one piece bentalls re-bore.

I don't think i want an on-x as in my humble opinion at this point in time it aspires to be as good as a st-jude with a future promise of low coudamin which may or may not materialise. I'm not a great risk taker which is a good trait for a motorcycle rider.

I'm basically going for tried and tested technology as any risk i take is not just my own, it would not just affect my own life but would affect my whole family but mainly my kids who are the most important thing in my life, i want them to fully grow up with a dad in the house, not a picture on the wall!!.

In fact if i could guarantee no affect on my kids for the rest of their developing life (until grown up and left home) i'd pull a mechanical heart behind me on a bloody trolley.

I also think i'm more going mechanical so that my family don't have to go through surgery again rather than myself. I think they go through the worst of it, i just sit in bed, sleep, eat, walk and complain for a while .

I certainly think physically i could keep my BAV now go tissue at a reop at 47 and 57 with the 57 one being my last (never expected to be here after 60 anyways) but in my opinion it would be a little selfish on my part to put them through this just so i can get drunk and ride motorbikes.

So thats my reasoning behind where i am, i want to be here in any configuration for a long time rather than be bullish and only want to stay around if i can do xyz with abc.

Life on coudamin doesn't really phase me (although i do like a drink and a ride on my motorbike), nor does the operation, i actually think i may turn out to be a fitter and thinner person because of the lifestyle changes that i will need to make some of those changes would have been made long ago if i'd been fully educated as to all the things that could happen to a kid with a BAV, my education has only happened in the last month thanks to this site I don't think my hard living contact sport playing lifestyle would have happened if i'd known the anurism was a risk, of course you can look at this as a bad thing or a good thing, i've had a blast so i only look on it as good.

So there we are, thats my brain dump, you may not agree with my choice but if my reasoning sounds rational and valid i'd appreciate the thumbs up..

Regards.

 

[Phyllis]

Big thumbs up- you've thought it out and made the "right decision for you"! Best wishes for all good results and a speedy recovery. By the way, I will add you to the calendar for Nov. 16th.

 

[Mary]

Here's your requested thumbs up!

 

[EireCara]

Best Wishes

Best Wishes

Hi, Well I dont have any knowledge (yet) concerning the different types of op or valves but I think whatever you do will work out GREAT because your ''heart'' is so full of caring and love for your children...all that generous spirit will come back to you a thousand fold. I will be praying for you.

 

[mntbiker]

Just another one to pile on and say it sounds like you have it together. You have made the decisions that are the right decisions for you! Now go forth and breeze through this little bump in the road.

 

[Marguerite53]

Magic. I think you've thought this through beautifully. I don't see any gaps in your reasoning. You are maturely dealing with the hand that was dealt you and it seems to me that your priorities are completely in line and perfectly prioritized.

Sounds like a job well done, to me!!! Now it's just up to the real magicians.... the surgeon and his cohorts, to make it all happen for you. And they will.

You're right on course!! Good job!!

Marguerite

 

[DeWayne]

You made the tough decision, it is yours and yours alone to make. No one can put you down for making it. You chose to live and that is the best part of it all. Now that you have made your choices I am sure you feel some comfort in that, I think most of us have felt that way afterwards. Best of luck and a speedy recovery when it all takes place.

 

[PJmomrunner]

Add me to the list of validators. Your reasoning sounds top-notch to me!

The only thing I'll throw out there for you--for what it's worth-- is, someone I talked to on the phone about her upcoming valve replacement and aortic graft said that her surgeon advised against the valve conduit (which you mention as your back-up plan) because he said it made it more difficult to replace the valve should that become necessary. I don't know if that means the valve conduit has to be cut and a new valve attached to the remaining conduit or the whole thing has to come out requiring DHCA (deep freeze) or what it really means. Now, she was talking about a tissue valve, and in a perfect world your mechanical will never require replacement, but as a self-professed non-risk-taking motorcyclist (Hmmm...can you say oxymoronic? ), I thought you might want to ask your surgeon about that.

 

[WayneGM]

I don't know enough about the various valves to voice an opinion but it looks like you've been very thorough job thinking this through.

Best wishes with your choice!

 

[pipersmith]

Another validating thumbs up!!

Another validating thumbs up!!

You sound a lot like me - I leaned towards mechanic from the onset - and never looked back. My surgeon also spoke to ma about the "tride and true" St. Jude valve. At your age - I totally understand and share your reasoning for not choosing tissue.
I will add one thing - there are so many people here that continue to enjoy hobbies/activities - like having a few drinks and riding bikes. Maybe some regulation is in order, considering the circumstances, but I would think that exercising caution could allow you to continue to do what you love. Maybe avoiding the urge to FLY and only listen to the urge to RIDE ;0)

Best of luck to you - I have to have my tubes tied on the 16th in preparation for my AVR - I will think of you on that day - prayers for success!!

 

[kodi]

Thumbs up from me too. I think your logic at thinking this through is sound and if you're satisfied with your decision, that's what counts most.

 

[Lynlw]

question

question

Add me to the list of validators. Your reasoning sounds top-notch to me!

The only thing I'll throw out there for you--for what it's worth-- is, someone I talked to on the phone about her upcoming valve replacement and aortic graft said that her surgeon advised against the valve conduit (which you mention as your back-up plan) because he said it made it more difficult to replace the valve should that become necessary. I don't know if that means the valve conduit has to be cut and a new valve attached to the remaining conduit or the whole thing has to come out requiring DHCA (deep freeze) or what it really means. Now, she was talking about a tissue valve, and in a perfect world your mechanical will never require replacement, but as a self-professed non-risk-taking motorcyclist (Hmmm...can you say oxymoronic? ), I thought you might want to ask your surgeon about that.

I'm kind of curious about this, I never really thought of the dcaron graft for the aorta as a conduit before all of a sudden it was a "duh" moment when I read this, so now I have a question, Justin has had some form of conduit from his right ventricle to his pulm artery to go around his pulmonary atresia inside his heart, hope that makes sense. Anyways last year he had his conduit replaced with a dacron conduit and got a bovine valve for his pulmonary valve inside the conduit. (his old conduit was mainly made out of his own heart/pericardial tissue) One of the resaons, he got a tissue valve, (and this is a little simplified and no way is the doctors quoted)was because we were told by several doctors, that the dacron conduit will have to be replaced periodically so no sense having a mechanical valve that could last his whole life, since the conduit will need replaced anyway.
So I guess my question is are these the same kind of conduit and how long should they last? Lyn

 

[Karlynn]

Thumbs up! You've taken an honest look at your life, your loves and your possible choices and made the decision that best fits for you. God bless!

 

[Ross]

O.K., your valid, but do me a favor. Please don't limit yourself so much on what you can and cannot do. There is no reason that you cannot enjoy your cycle etc. There are many many ways to get hurt and you'll soon find that your not nearly as fragile as some make it sound. Common sense precautions and enjoy your new life, that is all you need to do!

 

[tobagotwo]

I agree with Ross. Don't limit yourself before you've even started your recovery.

Many times, the actual valve choice is a toss-up for risks. In the end, you need to determine what's right for you. You seem to have reasoned yourself into a state of conviction that will see you through, and are only seeking validation in case there was a show-stopper that someone could come up with. There isn't. St. Jude makes an excellent carbon valve, implanted in many fine chests in this online community, and it's a fine choice.

The job's done, and good for you.

Best wishes,

 

[greg]

Like the others have said; You've got my thumbs up.
I like the 'tried and true' valve but that's just because it is still working for me. Once we have made our choice and got to the other side, we tend to be quite happy with that choice.
Sounds like you have it rather togather. Thats great. Good luck.
Yes you can be very active on coumadin.

 

[PJmomrunner]

So I guess my question is are these the same kind of conduit and how long should they last?

Lyn, I don't know how Justin's conduits compare to the conduit that is used to replace an aneurysmal aorta, but the aortic conduits (which are dacron, I am told) will never need replacing. I wonder if the periodic replacements Justin's surgeon spoke of might be triggered by Justin's individual growth expectancies? Although he is 18, I suppose whatever growing he has left to do could be a factor. Perhaps placement could be a factor too? (Purely guessing, BTW )

 

[Lynlw]

Lyn, I don't know how Justin's conduits compare to the conduit that is used to replace an aneurysmal aorta, but the aortic conduits (which are dacron, I am told) will never need replacing. I wonder if the periodic replacements Justin's surgeon spoke of might be triggered by Justin's individual growth expectancies? Although he is 18, I suppose whatever growing he has left to do could be a factor. Perhaps placement could be a factor too? (Purely guessing, BTW )

hmmm now I can't wait to see what I can find out, because at 5'11 he is pretty well grown. actually he never had a pulm valve before just because they didn't want to change it when he out grew it as long as his conduit was doing ok, since his was made using parts of his own heart his conduit grew with him,. but we were told his dacron conduit would last about 10 years. IF i learn anything i will let you know. I know a few of adults w/ TOF which is a little different than Justin's repair and they've had their conduit /valve replaced since they were adults.

 

[Magic8Ball]

Thanks for the replies, at least i'm now chrystal clear that i've not made and dodgy asumptions....

Well i'm one bottle of beer into my last great piss up session with friends and family before my life of moderation begins so i won't hang about.

There are several bottles of vodka, beer, burbon, brandy and wine to mix and binge on tonight along with the obligatory digital camera to capture the memories.