Introducing myself

[Dorsai]

I've been reading this forum non-stop for a couple of days now, so I thought I should take a moment to introduce myself...

My name is Matthew, I'm a 39 year-old married IT guy with a four year-old son. My first hint that something was up with my heart was back in June, when my PA was doing my annual physical checkup and heard something funny in her stethoscope. I was given an echocardiogram, which indicated an aortic root aneurysm in the 4.5cm range, so I was scheduled for a CT scan for a more precise measurement.

That was done in late August, and the cardiologist called me that same day to tell me the aneurysm was measured at 5.5cm, and I was going to be needing surgery. He put me in touch with Dr. Edward Chen at Emory Universirty, who is apparently the go-to guy in Atlanta for this kind of thing, and I met with him in September. I got a very good feeling from him, so based on that and my prior research I had him schedule me for surgery October 21.

Just a few days ago I went in for a TEE, and Dr. Chen called yesterday to tell me that I will most likely get to keep my aortic valve, although I should go ahead and decide what kind of replacement I want should that prove necessary. I'm leaning toward the artificial option, but I still haven't nailed that down yet.

So that's my story. The biggest reason I am posting is to thank all of you who maintain and participate on this forum; after reading so many of the posts here, many from people with far more difficult situations than mine, I am feeling much more confident about the whole process. It's gonna hurt, but I know now that I'm going to come through it just fine.

 

[ALCapshaw2]

Welcome Aboard Dorsai !

From what I read, Dr. Chen is THE AORTA Guy in the SE so you are in Good Hands.

There are Several "Artificial Valve" options, both mechanical and Tissue.

You may want to browse around in the Valve Selection Forum, beginning with the "Sticky's" at the Top of the Thread List for a good background in the trade-offs and options. Once you have a better feel for the valve options, feel free to ask more questions.

You may also want to browse through the Anti-Coagulation Forum to learn the Real World aspects of living with / on anti-coagulation (Coumadin / Warfarin).

There are a lot of Old Wives Tales about the horrors of anticoagulation which came from the 'Early Days' before there was good and reliable Test Methods called INR for International Normalized Ratio (even Home Testers nowadays).

Another good source of information on anti-coagulation is AL Lodwick's website www.warfarinfo.com He is a retired anti-coagulation center manager and certified anti-coagulation care provider.

'AL Capshaw'

 

[coach14]

Welcome Dorsai,
As you have found out, there is a lot of good information here. I am close to you in age (42) with 3 children, oldest is 13. You should sail through the surgery with no problem. I found the recovery was not nearly as bad as what I had running through my head prior to the surgery. I had my AVR done on 7/27 at Hopkins. I can honestly say there has not been one part of the process that I can look back on and think, "I do not want to ever have to go through that again". Which made me happy, as I chose to have a tissue valve for my replacement (for a variety of personal reasons) and realize that I have at least one more surgery down the road. Knowing now what to expect, I am much more comfortable with my decision. Just remember to take each personal account with a grain of salt. Everyone's experience is different and I remember that prior to my surgery, I read through as many logs and surgical stories as I could. And I found that I could read a story with 10 positives and 1 negative experience, and I would dwell on the negative, convinced that it was going to happen to me. Finally, about a couple weeks before surgery, I had to stop my reading and just learn to relax.....

 

[westie]

gonna hurt

gonna hurt

It's gonna hurt

are you talking about physical pain?

if so, my experience says you are wrong. i did experience some discomfort after ohs, but i never had any pain. but, in the dentists chair i have had pain, but not after ohs!

 

[EVELYN]

Welcome, Dorsai.....

As you have already found out, it's a really great site!!! You are most welcome. Please ask questions and you will always find numerous answers. My husband had AVR 7 years ago. He was 59 at the time and both our cardio and surgeon recommended that he go with the mechanical valve. After much discussion and knowing he didn't want to undergo surgery once or twice again in his lifetime, he decided on the mechanical. He has a St. Jude's valve and is on coumadin. He has never looked back. Managing the coumadin/warfarin is NOT an issue. We test weekly and have our own machine. I have learned much from the wonderful people on this site and would have been absolutely lost without them.

You have a wonderful attitude regarding OHS and will do just fine. As long as you trust your surgeon, don't be afraid to ask his recommendation; just do your own research and go with what you're comfortable with.

Again, Welcome.

Evelyn

 

[Duffey]

Hi, Matthew, and welcome.

 

[Dorsai]

are you talking about physical pain?

if so, my experience says you are wrong. i did experience some discomfort after ohs, but i never had any pain. but, in the dentists chair i have had pain, but not after ohs!

I certainly hope you are right. I have a hard time imagining it not hurting after being sliced and diced for a few hours, but I will be more than happy to be proved wrong. And frankly, I'm not that worried about it anyway...they have good drugs, and in any case some temporary pain is better than the alternative!

Thank you all for the warm welcome, it is appreciated!

 

[coach14]

Matthew,

My experience was that pain was never a factor. As mentioned, there are plenty of meds to help with this, so try not to worry. One of my big fears going in was how it would feel as they disconnected me from all the tubes and wires that are placed during the surgery. This turned out to be a non-issue and had no problems or pain. One thing - don't be afraid to use the little self dosing pain button as often as needed (if they give you one). Every bit helps and I made sure to hit it often when I knew I was having a tube or IV disconnected.

 

[briansmom]

Mathew,
I'm sorry you have to be here, but welcome to our group.

 

[Star54]

Welcome!

Everyone has a different experience, I don't remember much, but I do remember "that little self dosing button"...lol.
Good luck with your surgery....

 

[Danny]

Welcome, You found the right place for info... We should talk...I have the same thing as you, and am scheduled for next Tuesday. Good luck.

 

[tobagotwo]

Matthew, welcome into the forums and out of the woodwork. I hope the modified David-type procedure works out, so you don't need your valve replaced at all.

You're young for a tissue valve. If you get a tissue valve at 39, my estimation would be that you would need at least two more after this one, probably three, possibly even four.

Some people do fine with that. Others would say, "No way for me." You have to decide what will suit you best. It's not unheard of that even with a mechanical valve, you may need to have one replacement in 25 years or so due to your own tissue growth (not for the valve itself, which would last well beyond your lifetime), but that's not a certainty, and wouldn't be multiple replacements like tissue in any case.

A possible positive note for a tissue valve is that it would somewhat reduce the risk of a later surgery for further aneurysms, and would be less likely to contribute to cerebral or intestinal bleeds in later life (which your aneurystic tendencies probably make you somewhat more prone to). But that's a lot of OHS's to trade for it.

Certainly a mechanical valve will give you the greatest likelihood of freedom from reoperation, perhaps even for life.

If - again that's if - you do need a valve, and you determine to go with a mechanical valve, you might want to consider the On-X valve. Al Capshaw has listed its virtues a number of times, so you could use the search feature to find his treatise on that. Suffice to say, it's believed to be the most advanced of all of the current mechanical valves, and is in trials for reduced warfarin (Coumadin) and even non-warfarin anticoagulation therapy. It's also the only valve of any type that I'm aware of that has a feature built into it to deter your body from growing tissue onto the valve.

You have a lot to think about, and little time. I wish you good fortune with your decision moving forward. Whatever you choose, be satisfied with it and don't look back.

Best wishes,

 

[skeptic49]

Welcome to the forum! Lots of us here at different ages and different DXs dealing with choices, the frustrations of waiting ,etc. You're among friends.

Best wishes,

Jim

 

[Mentu]

Sounds like you will do fine.

Sounds like you will do fine.

Matthew, perhaps the best thing about VR is that we learn we are not alone and that a lot of other people share the same fears, concerns and experiences. I, too, have felt quite humbled by others who have worse problems than I who have made it through surgery. Now that I am a couple of weeks past my own valve replacement, I can assure you that for me the anticipation was definately worse than the experience of the surgery itself. Once you are in the hospital, you are going to have a lot of help from people with practice easing patients back to activity. If you have questions that we can help with, let us know. We are here for each other.

 

[Kathy McCain]

WELCOME DORSAI!

We are all here to help you through this. Any questions at all, pre-op, or post-op, or just to say hi! PLEASE make yourself at HOME.

 

[hall]

Welcome. Glad you are here, sorry for the reason. I think as far as pain goes, I think the trick is to stay ahead of the pain. They were very good about coming in with pain meds for me and I never got to where I had pain and had to ask for meds. The nurses I had were great. Best of luck to you.

 

[srinivassusu]

welcome dorsai,we are here to pray & support.

SRINIVAS



srinivas Heart History:
13/6/2008 2D Echo Diagnosed Ascending Aortic Dissection ,Bicuspid aortic valve, Moderate AR at the age of 38(2008)
9/6/08 CT scan shows Aneurysmal dilation of aortic root and ascending aorta with dissection extending upto brachio cephalic trunk and mild aneurysm
16/07/08 Operative findings & repair. Aortic aneurysm approx size 10 cms diameter.Aneurysm extd upto 1c m from innomiate artery. Mod. Bental DC Bono surgery procedure done to repair my anueuysm with#25 mm St.Jude medical valved conduit(SN 84094003.REF25CAVGJ-51400 AOROTIC VALVED GRAFT) At CARE Hospital Bangara Hills,Hyderabad,India. Surgeon: Dr K.s. Neelakandan gave me re birth! Dr . Sridar,Dr.Amreesh, Dr.Jagannatham completed the formalities.

 

[Cooker]

Welcome to the zoo ... pain was not an issue, as said above, I too have had much more pain in the dentist chair ... it's not near as bad as people expect...

 

[terryj]

Welcome. I just wanted to let you know my husband had his aortic valve replaced at Emory 8 years ago. Dr. Puskas was his surgeon. Hubby and I had excellent care at Emory the week he was there.

 

[Smiley2000]

Hi there!

Everyone around here will probably agree that the worst part of the surgery is the WAITING period! I am about your age and if someone had to ask me what type of valve I wanted (I was blessed that Surgeon could repair my valve) I would opt for mechanical. INR levels might be tricky for a while, but a lot of people manage to keep in under control with home-testing thingies. At least you won't need a re-op with mechanical and with the advances in medicine (please check the link out that I posted earlier) it should be much easier to do these procedures in the future!

Welcome and we are here to support and help you all the way.