29 years old having a AVR....any help would be appreciated

[vhmoriarty]

I am a 29 year old female. I was diagnosed with Aortic Valve Insufficency when I was 15 years old with a gradient of 48.

I had a son when I was 19 that was born with Hypoplastic Left Heart Syndrome (born without the left side of his heart). I went through the pregnancy and the next 8 years without problems.

When I became pregnant with my daughter the OB/GYN wanted to do a echo just in case and found my gradient to be 78. I was monitored closely during my pregnancy and even gave birth at 30 weeks due to being short of breath, dizzy, and my blood pressure bottoming out while my heart rate skyrocketed.

I gave birth to my daughter and went for post op checkup 6 weeks later and the gradient had went back down to 68. The cardiologist said I would have another 6-7 years till I needed my valve replaced. I needed to be checked every year.

This past summer I had a echo and my gradient has risen to 102. I am having symptons of:
Shortness of Breath
Dizziness
Fatigue

I am scheduled to meet with the surgeon on Wednesday about the options for my valve. I have no other problems other than the gradient being that high and my symptons.

I am leaning towards the Ross Procedure.

My questions are:

I need some advice from someone my age range on which valve to choose?

How long does the surgery last (wheel in time to ICU time)?

What happens in surgery?

How long in the hospital?

Have you had any bad expierences after surgery?

Thank you in advance for your help. I have searched several sites and on here and am looking for any advice I can get or expierences you would like to share. THank you!

 

[Lynlw]

Hi, Welcome I'm not the heart patient, but like you my son was born with complex CHD. You might just want to have this post in 1 place or it will get confusing keeping track of all the replies ect.
As for surgeies or which valves, are you planning or hoping to have more children? Also when I looked at your profile under surgery you have a couple listed, have you allready had surgery or will this be the first? That also could play a role in valve choice.

As for your other questions, when you are asking what happens in surgery, how detailed are you asking? The usual hospital time seems to be 4 days-a week but of course you never know.
Many people have small "bumps" in the recovery road, but the odds are very good for first time AVRs and even bigger bumps are pretty manigble.
How is your son?

 

[kfay]

Hi and Welcome. I'm sorry you are in the situation you are in, but you have found a great place to get support. First, let me tell you, that there are several people on here who have had the Ross procedure and hopefully they will be along to answer any questions you may have. You can also use the search tab at the top and put in Ross.

You know, none of us can tell you which valve is the right one for you. One of the major things I would consider if I were in your shoes would be if you want to give birth to any more children. If you do, a tissue valve would make it easier and safer.

As for your other questions, each of us is different. Some of our surgeries are relatively short while others are in for a much longer ride. Some people get out of the hospital in as short as 3 days, some who have complications can be in for much, much longer. I would say you could safely plan on at least 5 days and as many as 10 without complications.

If you really, really want to know what goes on during surgery, there are plenty of videos on the internet that show the whole thing.

As for your last question, "Have you had any bad expierences after surgery?", why not ask about good experiences after surgery instead. It is important that you go into this with most positive frame of mind possible.

By the way, my husband grew up in Knoxville and we actually met while we were both attending UT.

Kim

 

[ThirdTimesACharm]

if you can, get a natural valve — they last a bit shorter of a time, but they can replace them via catherization in the future, and mechanical valves, like the one i had until recently, comes with coumadin and complications. you can obviously deal with it and live a happy, healthy life, but avoid it if you can.

also, get the surgery ASAP. tests dont always tell you the extent the damage, and i would just get it over with.

 

[hall]

Hi and Welcome! Sorry for the reason you found us. You will find people have a wealth of information. As for me.....I did not find this site until after my AVR. I was extremely lucky, I had no complications. My surgery was 5 hours long and after 8 weeks, I went back to work full time. I will look forward to hearing from you. Good luck with your appointment with the surgeon.

 

[vhmoriarty]

Im sorry that I have posted this but this is the first forum type thing I have ever posted on. So thanks everyone who is giving me input...anything is helpful.

If you have links that you have found in the past and care to share them let me know. I think I have found the end of the internet on this type of thing, lol

I do NOT want anymore children and have had my tubes tied, so that is not a issue with me. and yes I plan no doing it as soon as they can arrange it, but Im trying to get as much info as possible before I go in Wednesday to discuss my options.

 

[Lynlw]

Im sorry that I have posted this but this is the first forum type thing I have ever posted on. So thanks everyone who is giving me input...anything is helpful.

If you have links that you have found in the past and care to share them let me know. I think I have found the end of the internet on this type of thing, lol

I do NOT want anymore children and have had my tubes tied, so that is not a issue with me. and yes I plan no doing it as soon as they can arrange it, but Im trying to get as much info as possible before I go in Wednesday to discuss my options.

Have you read a few of the threads in the "valve choice" section there is alot of info in them? It would probably be easier to answer specific questions and you won't get over whelmed with tons of links that we find useful, but aren't what you are interested in.

 

[vhmoriarty]

Im actually really nervous about the WHOLE thing. I have read some things on the net, but none for people around my age. I am sure I will find out everything on Wednesday when I go in to discuss my options. But my cardiologist wanted me to mentally prepare myself...and I want to go in and know exactly what they and myself are talking about.

I also have family that is going to have to take care of my small children and husband that will have to take off work and others coming in for my surgery, that Is why I am concerned about the time line.

I have never had ANY surgeries and this will be my first. No I dont want anymore children and have had my tubes tied.

My son passed away at two days old due to hypoplastic left heart.....my daughter is now 2 and is doing wonderful other than some premmie delays.

 

[Lynlw]

I am very sorry to hear your son didn't make it. I can only imagine how tough that was to lose your baby.
I was thinking you might have some more experience with what all surgery involves because of him, (I never had heart surgery, but picked up alot over the years because of my son's surgeries)

I guess the best thing to remember is how good the stats are for first time valve replacements, also most hospitals doctors try to keep pain as well manged as possible.
Since you don't want any more children, you can pretty much have any kind of valve, usually the recomendation for women who want to have children is tissue valves so they most likely won't be on coumadin which makes pregnangy difficult. Most people recomend mechanical valves for younger people since tissue valves wear out and you'd probably need several surgeries thru out life.
There is alot of good info here, be sure to check the "stickies" at the top of most of the individual forums.

also it is up to you, but you might want to edit your "about me" since alot of people go there to see your history because it makes it easier to offer advice and yours looks like you had several surgeries so far.

PS the "resources forum" has a ton of great links to all kinds of info

 

[kfay]

If you haven't already read this sticky about valve choice you should. Here it is: http://www.valvereplacement.com/forums/showthread.php?t=14330.

At your age, knowing you don't want any more children, I would probably lean towards mechanical. Tissue valves have a tendancy to not last very long in someone your age, so you would be looking at quite a few re-ops. And even though most of us with tissue (me included) are hoping for them to be able to replace them via cath, that just isn't the standard for the time being and we don't know when that may happen.

I don't know a lot about your specific problem, but there have been volumes written about it on here. Please use the search tab and read away. There is more info on here then you could probably ever read.

Best of luck on Wednesday.

Kim

 

[Superman]

Welcome aboard.

Getting right to your questions:

I was almost 18 when I had my first AVR. I went with mechanical because I didn't want to face multiple surgeries. That was done almost 19 years ago. I'm going to be having my second surgery on the 15th of this month due to an aortic aneurysm. I'm going to get a new valve at that time. I'm going to stick with mechanical. I had a St. Jude put in the first time and it would still be going strong had my aorta not decided to inflate. At your age, I would stick with mechanical just to reduce the likely-hood of repeat surgeries.

I don't know how long my first surgery was. I'm being told to expect a minimum of six hours this time because sawing through a sternum that has already healed once is much tougher. Scar tissue is the reason I was given.

19 years ago I was in the hospital for six days. I understand 4 - 6 is pretty normal these days.

I haven't read anything on the Ross procedure that would make me want to choose it, but that's just me. We all have different goals and are willing to accept different outcomes.

My only bad experience after surgery is having to do it again 19 years later. This time I have a wife and four young kids, so a bit more to worry about then before.

What goes on during surgery? Couldn't tell you. I was out. I haven't found any beginning to end video's, but the On-X website has a video of a mechanical valve being sewn in. I've been told you don't want to know too much. Might be tougher to face if you know exactly what they do.

 

[vhmoriarty]

Definately thanks for that link. I read most of everything I could find on it. Its just so overwhelming and with everything that has happened in my life in the past I come full of knowledge. I guess its the wait that is getting me. Every valve has some sort of flaw. Also they have only done echocardiograms on me.

Have you had a heart cath or other tests to find out more indepth information about what is going on? Should I suggest a test to be done, before they just jump in there and I think Im just getting a heart valve and something else going on.

I currently have only aortic valve stenosis (moderate) with a gradient of 102% and a enlarged left side. That is the only diagnosis that I have been given.

Thanks so much for your help!

 

[Mileena46]

I personally, would question a surgeon or doctor who wanted to do surgery without having done a cath. Yes, an echo shows some...but it wasn't until after I had my cath that they even suggested that I go ahead and do the surgery.

Mileena

 

[twinmaker]

Hi and welcome to our group! There's a wonderful bunch of people here with loads of helpful info. I had my first OHS when I was 22 (mitral valve repaired), had our three children during the next several years and then had my mitral valve replaced when I was 29 years old. I went with a mechanical...St. Jude Mechanical. We were not having any more children and my surgeon said that he thought this valve would last for the rest of my life. The St. Jude had not yet been approved by the FDA so I was sort of one of the guinea pigs. I am now 57 years old and have had this same valve for 28 years. I play tennis, ride my bike, ran after and kept up with a daughter and twin sons (they were ages, 5 and 3 when I had my surgery) and now run after our two grandchildren from time to time. Out of 28 years on Coumadin, I have had two bleeding episodes that were considered serious but in my opinion, are just part of the price you pay whenever you take any medication or have any surgery or for that matter, if you walk out the door or walk through your house. In other words, there's a risk in just living. I can only speak for myself and my situation, but if I had to make a choice all over again, knowing everything that I do today, I'd make the very same decision. Good luck with making your decision. I know that whatever you decide to do will be the right decision for you. Keep us up to date on how you're doing and what the surgeon says. We care! LINDA

 

[kfay]

Definately thanks for that link. I read most of everything I could find on it. Its just so overwhelming and with everything that has happened in my life in the past I come full of knowledge. I guess its the wait that is getting me. Every valve has some sort of flaw. Also they have only done echocardiograms on me.

Have you had a heart cath or other tests to find out more indepth information about what is going on? Should I suggest a test to be done, before they just jump in there and I think Im just getting a heart valve and something else going on.

I currently have only aortic valve stenosis (moderate) with a gradient of 102% and a enlarged left side. That is the only diagnosis that I have been given.

Thanks so much for your help!

Just curious, where are you having this done, UT? A cath is definitely going to give them a more accurate picture about what is going on. Some of those echo numbers could be off a bit, but if you are having symptoms, I don't know that I would push them on a cath. Before my surgery last year, the decision to do surgery was made without the benefit of a cath. Two days before my surgery, they decided to do a cath just to check for rhythm issues. I'm relatively young and they felt confident that I didn't have any adult onset cardiac disease. If it makes you feel more comfortable, ask for one.

What do you mean by every valve has some sort of flaw? I don't know a lot about mechanicals (other then what I have read on here), but I don't get the sense that they are filled with flaws. Most people on here have done very well with their mechanicals and if there has been a problem, it seems it has more to do with how their heart has reacted to the valve (scar tissue, etc.).

It is normal to be feeling anxious about all this. But I get the feeling you have been through alot of this before with your son, so you are probably a little more prepared then most.

Kim

 

[vhmoriarty]

Im actually having it done at St. Marys Medical Center.

http://www.etcvsg.com/index.html This is my surgeons.

The tissue tends to have to be replaced at my age. Mechanical has comadin. Ross, not really sure. That is what I was talking about on flaws.

i had a in depth MRI done in 2007 after a echo. Yes I am having symptons such as shortness of breath and dizziness.

How are the caths done now? My late husband had one done but it was done through his groin and he had to lay still for 8 hours. I have heard they have changed but wasnt sure how.

We didnt do anything with my son. We chose compassionate care over putting him through the surgeries.

 

[kfay]

Valerie, I'm sorry to hear about your son and your late husband. Having had caths throughout my life, I can tell you they are pretty much done the same way. They almost always go through your groin. Some places now put a plug in the incision so that you are able to get up sooner, however, you are still made to lie flat for a while. I have not had to lie flat for 8 hours though. I think for the one I had done last year, I had to lie flat for 4 hours afterward.

If you have had a cardiac MRI, that gives them a much clearer, more accurate picture than the echo. Again, I don't know that a cath is going to tell them any thing more, but ask your surgeon about it if it is really something you are concerned about. He may already be planning on having one done the day before.

You are right about the valves. You will most definitely have to have the tissue replaced and yes, you will have to take coumadin for life if you choose mechanical. I may be wrong here, and I hope someone who has had a Ross will come along and correct me if I am, but since they move your pulmonary valve into the aortic position and then either give you a human donor valve or either a porcine or bovine tissue valve in your pulmonary position, you will most likely not have to take coumadin (unless you develop A-fib). In that scenario, you would take daily aspirin therapy. A tissue valve in the pulmonary position can last a very long time in some one your age (they won't put mechanical there due to low pressures and higher clotting problems). So, even though it would probably mean another surgeryat some point, that could be many, many, years away.

If you are going to have the Ross, I would make sure that this surgeon you are talking to has done them before. And I'm not talking about 1 or 2! Ask him how many, and how successful they have been.

Kim

 

[Philip B]

Questions

Questions

Your questions are pretty typical. It's also pretty normal to be nervous and concerned about what valve replacement surgery is going to be like. Actually, nervous and concerned is probably something of an understatement. Personally, I was terrified.

My experience with aortic valve replacement ended-up being pretty easy. I took five days off work to have the valve job and aortic graft done. I was back to working 1/2 days the week after surgery and returned to full days the week after that. I was fortunate in that I didn't experience any major bumps after surgery.

While I asked the folks here a lot a questions, the staff at the hospital where I had my surgery were great. I actually met with the ICCU staff a couple of times before my surgery and they walked me through the process, procedures, and timelines I would be dealing with. I suggest that you look into setting up an appointment with the people who will be taking care of you after your surgery. They will probably be able to give you a really clear game plan.

Regarding the actual surgery, spend some time visiting with your surgeon. I did a couple of meetings with my surgeon specifically to have him address questions and concerns I had.

You'll notice that experiences and opinions among members here will vary.

Valve choice??? That's a topic that usually generates lots of opinions here.

-Philip

 

[ALCapshaw2]

To make an Informed Decision on Valve Selection requires some research and learning on your part. I suggest you start by reading the "Stickys" at the Top of the Thread List under the Valve Selection Forum.

There are several types of Tissue and Mechanical Valves.

Not all surgeons are familiar with / comfortable with / or offer ALL of the Valve Options and even fewer are proficient with the Ross Procedure. It is usually best to select your Surgeon based on what Valve you desire if you have a particular valve type or procedure in mind. The other option is to select a skilled surgeon and go with whatever Valve HE recommends / offers.

The MAIN things I would want to ask a Surgeon who proposed doing a Ross Procedure are:

1 - How Many Ross Procedures have you performed?

(Dr. Paul Stelzer in NY is the most prolific RP Surgeon with over 400 in his career. Dr. William Ryan in Dallas is another experienced RP Surgeon).

2 - What were your outcomes?

The Cleveland Clinic (#1 Rated Heart Hospital) has Stopped recommending Ross Procedures because of a high number of Early Failures.

Whatever Valve you choose as your First Choice, it is ALWAYS Wise to have a Second Choice "just in case" there is a problem with the first choice and it is not viable.

You also need to know that Tissue Valves (including human valves) tend to wear out and wear out Faster in Younger Patients.

The Bovine Pericardial Tissue Valve is a Good Valve with a Long Record for Durability in OLDER patients. Women who choose this valve to get them through their child bearing years have reported getting 10 good years before replacement was necessary.

Porcine Tissue Valves tend to wear out Faster than Bovine Pericardial Tissue Valves, sometimes in 4 or 5 years as reported by some members.

Mechanical Valves require anti-coagulation for life. There have been Lengthy Discussions on the different types of mechanical valves and how to Live With and On Coumadin for Life. See the Valve Selection Forum.

Most Coumadin / Warfarin patients report few if any issues with Coumadin on a day to day basis with PROPER management. Going OFF Coumadin for other invasive procedures may require Bridging with Heparin or Lovenox to minimize stroke risk.

See the Anti-Coagulation Forum (start with the Stickys at the Top of the Listings). Also see www.warfarinfo.com which has a wealth of information on anticoagulation written by AL Lodwick, a Certified AntiCoagulation Care Provider and retired Coumadin Clinic Director.

That should keep you busy for a while !

'AL Capshaw'

 

[scuba_898]

I am sorry you are having to go through this, I know it is rough. I am a 29 yr old male. diagnosed with BAV 7mo ago. I am having surgery done in 4weeks around the 2nd week of November. As I am sure you've found out there are many options as far as valves go, but the question is what is the best for you, and that can be answered by whatever makes you the most comfortable.

I know that we are the same age. I have seen three surgeons and two cardiologist since mid Aug. the surgeon i am going with is with Emory in Atl, he believes that he repair my valve. A repair may not be a permanent fix, maybe only 10-20yrs, but i will not need coumadin and will no restrictions (within reason). my surgeon sugested this because at this age I will probably need 2 surgeries in life anyway. he (my surgeon) felt that there was less risk of reoperating on me in 20years vs being on coumadin for 20yrs and needing surgery again then possibly. If my surgeon is unable to repair my valve during surgery then he will need to replace it. I have been planning on going with a on-x mech valve, however i am starting to lean towards a tissue valve. I know that tissue valves may only last about 8-12 years in someone my age but I am starting to gamble on medical technology. There was a recent link posted recently about a article in the new york times about trans-catheter valve studies being performed in the us and were expecting results in 2, 6 and 10yrs out. I don't know much about all of it, but basically this would enable the docs to replace your valve without having to split you open, so much less invasive. This to my understanding has been going on in europe for awhile, the US is just behind on this technology.

Didn't mean to make it the post this long. There are a lot of knowledgeable people on this site. they have really taught me a lot. don't be afraid to ask questions. Everyones situation is different. We just happen to be the same age. let me know if i can be of anymore help.