Surgery on July 19, 2005

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Makro

Makro

Active member
Joined
Jul 12, 2005
Messages
28
Location
Raleigh, NC
Hi everybody,

I am a 40 year old ross patient (we're a small family with a nine year old daughter that already had to go thru her moms breast cancer surgery and chemo 2 years ago) that needs to go in for a second time to fix an ascending aneurism (sp?) this coming Tuesday. My Doctor, Dr. Neal Kon, said he'll try to save my AV, which b.t.w. has mild regurgitation, but I don't think he'll be able to, the aneurism is right on top of the valve. So, I get to choose what kind of AV I would like. The choices are a stentless porcine (Freestyle) and a St. Jude mechanical valve. After what I read on this web page, (I just wish I had discovered it WAY earlier) there is a bunch of people out there on coumadin/warfarin leading a fairly normal life. I still haven't made my decision, but after reading many postings, I'm leaning towards a mechanical valve, just because of the longevity of it. Dr. Kon said he would prefer a Freestyle, but he will go with whatever I choose. I do have some questions:
I feel like I need a living will or something like that. How do I do this ? Can the Hospital help me with it? How did you do it?
What about other stuff like testaments etc. What do you suggest needs to be in place (even if it may not get done this time around).
What is your opinion on the valve?
Does anyone know Dr. Neal Kon at North Carolina Baptist Hospital and what was your experience with him? (I feel pretty good with him and chose him over Dr. Jaggers at Duke)
Any other information is greatly appreciated.
Thanks for even the littlest response.
 
Hi Makro and welcome

First let me say that your choice is personal and up to you. I take heat for telling people your age to go with mechanical and coumadin. My feeling is that no one should have to go through this surgery as many times as they possibly can until death. Once is enough and this is your second.

You do need to get your affairs in order just in case. The hospital can help you, but I'd advise finding an attorney and having it all done by him/her. I got everything done for $100 and could go into surgery with real peace of mind that my will, living will, powers of attorney for healthcare etc, were all in place and knew what my wishes were.

I can't help with the surgeon or Doc, others may.


Again, welcome :)
 
I agree with Ross on seeing a lawyer. Second choice would be an on-line service for living wills and POAs. The important thing is to make sure your POA has iron-clad authority to act on your behalf. You don't want someone finding a loop hole and you end up some way you would hate.

I have been on coumadin for almost 25 years and have had no problems. I have had 3 OHS and do not EVER want another one. If coumadin and my St. Jude's prevent that from happening, I will be one very happy camper.

I do not have any info on the doctors - sorry.

Best of luck and Godspeed.
 
Hi Makro and welcome. I put you on the calendar for July 19th. The valve choice is such a personal one, especially under 60, but I do suggest that you see a lawyer for a living will, power of attorney and will. The hospital most likely will provide you with a living will, but all States are different and it's best to have one drawn by any atty. in your State. Sorry I can't help with the doctor, but maybe someone else will chime in. Wishing you all the best and please have someone post and let us know how you are doing.
 
My husband has had three valve surgeries. He has an aortic and mitral mechanical and had a repair on the mitral which sprung a leak.

He has been told that at this point, he's probably inoperable, and that anything that comes up will be treated medically. Too much scar tissue.

He's been on Coumadin for 28 years, and he feels that it's no big deal. Others will differ, but that is how he feels. It has been the least problematic of any of his meds.

There are no guarantees on any valve needing a reop, but with a mechanical you at least have the best chance of never having to go through this again.
 
Lots of us "know" Dr. Kon from a live webcast of an aortic valve and ascending aorta replacement that someone posted here a few weeks ago. Here's a link:

http://www.or-live.com/wfubmc/1155/

He looked like a fine surgeon to me! (Of course that was the first such surgery I had seen, but it's also exactly what I'll have one day.)
 
My experience with Warfarin

My experience with Warfarin

there is a bunch of people out there on coumadin/warfarin leading a fairly normal life. I still


Just a little (personal) comment on the above.....

I had AVR in 1999, and have been on Warfarin since then. I live a (practically) perfectly normal life; the warfarin has little or no impact on my life other than the (slight) inconvenience of taking the medication daily, and getting the periodic checks. I don't experience bleeding or bruising; nor have any changes to my lifestyle been forced on my by the warfarin. Different people of course have different experiences with Warfarin/Coumadin, but I just wanted to share mine.

The very best of luck with your upcoming little adventure.

Frank
 
living will

living will

our local hospital has a packet they hand out - very informative and has the actual forms you need - fill in the blanks and have it witnesses and you are good to go. I would think most hospitals have this available. I was offered one at each of my my pre-surgery registrations.
 
Valve Choice

Valve Choice

So many of you have already invested so much on this topic. I am especially grateful for those of you who keep coming back to it to help those of us who still have the final decision to make. And it is the kind of decision that defies a definitive answer. I seem to always be coming up with new questions, and the harder I work to find the facts, the more questions I come up with. I would love to have any opinions about 2 new matters I have come accross:

1. Is it true that the level of Coumadin required (for synthetic valve) will vary according to the type of valve replacement a person might have? Because I will be replacing an aorta valve, I would especially like to know if it is true that a replacement of the aorta valve will allow me to get by on a lesser dose of Coumadin than if some other valve were replaced. I have a follow-up question, if the first answer is yes: As safe as the Coumadin treatment is, could I expect that it is even safer in my particular case if, in fact, I am able to get by on a lesser dose than is required for other types of valves?

2. In the short time that I have been researching this topic, I have learned not to panic every time I read or hear some coumadin horror story, but here is another question based on my reading: Is it true that being on Coumadin puts me in a group that will experience a valve%/blood clot fatality of 1 or 2 per cent per year? Based on family history (which does NOT include anyone else with a bad valve) I could normally expect to live another 30 years. One or two bad cards in a 100 card deck doesn't sound so bad at first, but encountering that same risk for 30 years would be a significant consideration for me.

Someday I want to take the time, and expend the effort, to tell you what your help has meant to me. I guess it starts with your knowing how hard it is prepare for this thing.
 
Gary has been on coumadin for 5 years - had the Ross in 97 which failed 3 years later and a St.Judes in 2000. I was so upset about the coumadin - to the point I tried to get him to change his career (he is a carpenter.) I really worried for nothing. Other than periodic blood tests and asking everynite if he took his pills it makes no difference in his life. I thought for sure he would bleed to death.
He is still a carpenter, still gets some cuts and scrapes - he actuallly just stepped on a hammer with socks on because a client insisted he take his shoes of in her house - he bled for a while, but I cleaned it up and put bacitracin on it for a few days and he healed fine! Same as when my kids get hurt.
He maintains his INR 2.5-3.5 We have never had a problem. I only wish we didnt do the ross in 97 and went straight to the mechanical - then he may not be going again for an aortic aneurysm repair.
Take care Good luck and I will be praying for you. You have a great attitude,Keep it up!
Christine
 
I believe an aortic valve requires a lower INR range than a mitral. Usually a mitral is 2.5-3.5 and an aortic is 2.0-3.0. Please, anyone, chime in if I am wrong on this one.

I have been on Coumadin for 25 years. I don't know about the fatality %s but I try to stay away from statistics. In my case, I expect to be around for quite awhile and, if some statistics were true, I would not be writing this. I do not believe I am an exception. There are a lot of us out there.

Best of luck to you with your decision making. It is not an easy one.
 
geebee said:
I believe an aortic valve requires a lower INR range than a mitral. Usually a mitral is 2.5-3.5 and an aortic is 2.0-3.0. Please, anyone, chime in if I am wrong on this one.

I have been on Coumadin for 25 years. I don't know about the fatality %s but I try to stay away from statistics. In my case, I expect to be around for quite awhile and, if some statistics were true, I would not be writing this. I do not believe I am an exception. There are a lot of us out there.

Best of luck to you with your decision making. It is not an easy one.
Click to expand...


Hmmm, I don't know, Gina, they are keeping mine between 2.5 nd 3.5 but now that you mention it I had heard 2.0-3.0 too but on my discharge instructions they wrote the higher range.
I suppose y ou could go lower because of the higher velocity flow across the aortic valve??? But I think I stick with what they told me! LOL. My last INR was 3.7 but they didn't do anything with my dose, just kept it the same. (I alternate 5 and 7.5) I did make sure I took the same TOTAL dosage as I had the previous week, since alternating that way doens't give me a consistent quantity week to week.
 
Hi Makro and welcome. So sorry I missed your post 4 days ago.

I've had a St. Jude mitral valve for over 13 years. I had it put in when my children were young. If I had gone with a tissue valve it would have been right about the time they were graduating from high school that it would have been replaced and I feel my mechanical got me through the busiest time of our lives w/out having to worry about an upcoming valve replacement, or suffering a decline in health due to a tissue valve beginning to wear out. Instead that time was spent going to many swim meets, debate tournaments, taking the kids to Europe for two weeks, and seeing them off to college. If my valve developes problems tomorrow, I will be grateful for the uninterrupted time it gave me while my kids were growing up.
 
Makro - Good luck with your surgery tomorrow! My boyfriend had his AVR with a mechanical valve in December 2003 and to date is very happy with it - he still motorbikes, uses various dangerous tools :eek: , works in a precision engineering factory and repairs motorbikes and cars regularly. Has had various cuts and scrapes but (touch wood) nothing serious so far. As this is your second surgery I also feel it would make sense to go with a mechanical valve this time around - or course there are no guarantees but at 40 you'd definitely be looking at another surgery some time in your 50s (approximately) if you went with the tissue.

qtson - your INR (basically the clotting factor of your blood) does have to be higher with a mitral valve than with an aortic. The standard range used by most doctors for the aortic valve is 2-3. This means that your blood takes 2-3 times longer to clot than "normal" blood. It sounds a lot but in practice it's only a matter of seconds. It may be worth putting a specific post in the Anticoagulation forum for Al Lodwick re: risk of clotting/bleeding events - I seem to recall he cited his own experience in that area from his clinic recently. Will see if I can find you a link later.

Best wishes,
Gemma.
 
qtson

qtson

OK, this is Al's comment, taken from Ross's post "Al, does something look funny here?" in the Anti-Coagulation forum:

I have looked at the statistics for my clinic. Minor bleeding occurs at the rate of 1 per 1.5 patient-years. Major bleeding 1 per 33 patient-years. Clotting 1 per 100 patient-years.

(These are statistics from a clinic where the managing pharmacist REALLY knows his stuff).
 
Makro's surgery tomorrow

Makro's surgery tomorrow

Thanks guys for all your prayers and good thoughts. Thanks to you, I was able to make a decision on the valve. My wife Dana will try to keep you posted in the post-surgery forum.
We'll be leaving in an hour or so, I already did my heartcath.
See you at the other end!
 
Wishing you the best and we look forward to all good reports from Dana.
 
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