New member Surgery Fri Aug 10,07

[dot4toto]

Hi Everyone,
Glad I found you. I hate this! But I love that it can be done. Thank God for the wonderful doctors and nurses.
I'm having my aortic valvle repalced and aortic anureysm repaired. I've had 2 coarctations of the aortia reapired. One at 12 years old the other 7 years ago at 35 years old. They were both left thoraconamies(sp?). I haven't had the surgery from my chest, don't know how that goes....I'm hoping to avoid a pace maker, do you feel like that is common with the vavle replacement? I haven't read a lot about this surgery. I just know I don't want blood thinners. I'm very nervous and trying to stay positive and thankful. I really just want this to be over. Thanks for any info that might help....Tina

 

[Adam 12-21-05]

Hey Tina,

Nice to meet you and welcome to the site!

Like you, I wasn't too interested in blood thinners. So, I opted for an aortic valve replacement known as the Ross Procedure. The RP is kind of like a game of musical chairs with your heart valves. They switch your pulmonary valve for your aortic valve and then insert a homograft (donor valve) for the pulmonary slot.

I'm not sure if that is appealing to you but it is one option that you may want to consider. I'm about twenty months post-op and doing great. I recently Scuba dived for the first time since my surgery.

As for being nervous, I think we can all relate to that. But, the statistics of heart valve surgery are pretty encouraging. You're going to do great.

Quick question - Did you get a second opinion?????

I hope so.... I've done some research on that topic and just read the book "Coronary". Have you seen that book yet? Anyways, it's pretty critical that second opinions are considered through this process.

All the best,

Adam

 

[Susan BAV]

Hi Tina -

I just replied to your private message (PM).

And publically also, welcome to the site; glad you found it! Sometimes weekends onsite are slow with responses but I think you'll get plenty of replies.

I mentioned this in the PM but I'll also post it here; you will most likely find the following website very informative www.bicuspidfoundation.com

One (very smart and informed) member here told me that she has been told that perhaps 15% of bicuspids have coarctations and 85% of coarctation persons have bicuspids. Also, most bicuspids are men. So that makes us really special! I don't know exactly what having a coarctation spells out for us, however, in regard to the possible likelihood of connective tissue disorder and aneurysms.

Adam mentioned a second opinion. I even sought three opinions from excellent and experienced and highly recommended surgeons.

If you have more questions, please feel free to PM again, or post here. Your surgery is coming up soon, and you want as much information/feedback as possible, so don't hesitate to bump your thread up by tennis-style posts.

Take care!

 

[Cooker]

Hi Tina,

Wecome to vr.com!! Hope that all goes well and that recovery is smooth sailing.

Cooker

 

[dot4toto]

Thanks so much for your posts. I've been followed my whole life and I knew this surgery was coming. But every year since my 2000 surgery (coarc repair w/dacron) I"ve heard "looks good see you next year". I'm in shock that this is moving so fast,but I've had some back pain and they think it may or may not have to do with the anuresyum. I've had 4 different doctors tell me about my situation so I know this is what has to be done. But the fact that it may have to be done with one solild graft/valve I haven't read anything about that. Does anyone happen to know of or has had this done. I don't want ACT if I can help it. I understand if that I have to . Does life change a lot? My life even with the 2 surgeries really hasn't changed. I am gratful, just a little worried. Thanks I'm so glad I found you all.

 

[dick0236]

Regarding your "pacemaker" question, I don't think pacemakers naturally follow Valve Replacement Surgery. I have never had a doc mention a need for a pacemaker for me. I have two friends, one mechanical and one tissue, that do not need pacemakers. I have two other friends on pacemakers but they have had no valve surgery.
Regarding ACT, I have been on warfarin(Coumadin) for 40 years. I have found the therapy reasonably easy to manage. For me ACT has proven to be far better than the probability of multiple surgeries had I had "tissue" valve implants over these 40 years. Read and ask questions but don't let ACT play too big a role in valve decisions. That's letting the tail wag the dog.

 

[Ross]

ACT to someone who is not currently on it, is scary, because there is so much misinformation in the world about it. You've no doubt heard a bunch of horror stories and half truths that it's made you decide against it. Fact of the matter is, it hasn't changed anything in my life nor many others here. We still eat what we want, do what we want and live our lives.

Make ACT part of your studying plan. Please see Al Lodwicks site at www.warfarinfo.com and read all you can. It will dispell probably 90% of what you think you know about ACT now. Also, see the sticky threads in Anticoagultion forum. You should not rule out a mechanical valve simply because of ACT. You should be more concerned with how many times you'll have to have surgery in the future. This is something that one should do only one time if possible. There are no guarantees regardless, but mechanical would offer the best chance.

 

[WayneGM]

Welcome to the VR community, Tina. Glad you found us. Best wishes with your surgery and recovery.

 

[Phyllis]

Welcome, Tina. Glad you found us before surgery and I added you to the calendar.

 

[dot4toto]

Surgery soon I have to pick a valve

Surgery soon I have to pick a valve

Thanks everyone,
I know that ACT can't be the only reason to go tissue valve. But isn't it true that any valve can fail? Tissue or mechanical. I mean going mecanical doesn't guarantee there won't be any more surgery.

I have to say this is the toughtest choice of my life. I have no way of knowing how my body will do either way. So I have to take a leap of faith just like you all had to. It's just so hard.

This whole thing is coming about in a 2 week period, I really thought I'd have a few months to think it all out. I've been seeing the cardiologists for years but I haven't wanted to think about this until I HAD to.

Whatever, right. I have been blessed since I was 12 years old with great doctors and wonderful results, I believe this trip to the hospital (Aug 10th,07)will be no different.
It's very comforting to have met you all and read about your experiences and choices. I've been feeling very alone in this, lots of love around me but loved ones can only understand so much. I've been reading the pages here and you guys write about things like wires and scares and how you feel. I have found my "people"!!!

 

[VikiVix]

Welcome

Welcome

Welcome to you Tina and just know that the surgery is bringing you many more days, months and years to enjoy this beautiful life.
Viki

 

[Karlynn]

Thanks everyone,
I know that ACT can't be the only reason to go tissue valve. But isn't it true that any valve can fail? Tissue or mechanical. I mean going mecanical doesn't guarantee there won't be any more surgery.

I have to say this is the toughtest choice of my life. I have no way of knowing how my body will do either way. So I have to take a leap of faith just like you all had to. It's just so hard.

This whole thing is coming about in a 2 week period, I really thought I'd have a few months to think it all out. I've been seeing the cardiologists for years but I haven't wanted to think about this until I HAD to.

Whatever, right. I have been blessed since I was 12 years old with great doctors and wonderful results, I believe this trip to the hospital (Aug 10th,07)will be no different.
It's very comforting to have met you all and read about your experiences and choices. I've been feeling very alone in this, lots of love around me but loved ones can only understand so much. I've been reading the pages here and you guys write about things like wires and scares and how you feel. I have found my "people"!!!

Welcome!

You are right, going mechanical doesn't guarantee no more surgeries, but at the same time you know that going with tissue does and at your age, you are most likely looking at, at least, 2 more (hoping you live to a ripe old age). At the same time, going with tissue doesn't guarantee you won't have to be on ACT. The more surgeries a heart is put through, the greater chance that they will develop an arrhythmia that will require ACT.

You are in a tough spot. What is your surgeon recommending? He has the surgical notes from the last surgery, so should be able to get an idea of how your body handles scar tissue.

There are lots of myth and old information going around "out there" about Coumadin. The biggest problem with being on ACT is having it managed by someone who operates off of old information. The majority of the issues we see posted here seem to stem from this. So if you go with the mechanical option I would definitely recommend becoming very familiar with the drug This site and Al Lodwick's are a Coumadin user's best friend.

Best wishes!

 

[dot4toto]

Hi VikI, You are so right! I'll take everyday I can get.


Hi Karlynn,
Thanks for your post and insight. My hope is to have the tissue valve and later yes have another surgery, hope the last one. In years to come who knows what advances will be made. Look how far we've come since my first surgery in 1978, right? I'll be reading a lot in the next couple of days.....you know?

 

[Ross]

I've been feeling very alone in this, lots of love around me but loved ones can only understand so much.

Try as they will, unless they've gone through this, they have no idea what it's like. It really helps to talk to those that have been there and done it, some of us a couple of times now.

 

[ALCapshaw2]

Tina,

It would be wise for you to go to the Valve Selection Forum and read the "sticky" written by Tobagotwo on valve options.

You need to know that Tissue Valves deteriorate more rapidly the younger you are. Bovine Pericardial tissue valves are approaching 20 year longevity when implanted in patients age 60 or above. LESS for younger patients.

Unimproved Porcine Valves only last 8 to 12 years. There are some improved models of Pig Valves but I am not familiar with them and don't know how long they will last.

Mechanical Valves rarely fail. They are designed for Way More cycles than anyone can hope to live. One possible reason for having to replace a mechanical valve is if your own body tissue grows into the path of the leaflet motion. This is RARE.

You may also want to browse in the Anti-Coagulation Forum to see how patients cope with anti-coagulation. I agree with Ross's suggestion that you should browse through Al Lodwick's webside www.warfarinfo.com to dispell some of the outdated MYTHS about living with / on Coumadin / Warfarin. Testing methods have improved GREATLY in the last 20 years and it is MUCH easier to manage IF you have a good advisor. Al Lodwick sells an EXCELLENT Dosing Guide for $5 that helps to keep Self Testers / Self Managers in range.

'AL Capshaw'

 

[Lynlw]

Thanks everyone,
I know that ACT can't be the only reason to go tissue valve. But isn't it true that any valve can fail? Tissue or mechanical. I mean going mecanical doesn't guarantee there won't be any more surgery.

I have to say this is the toughtest choice of my life. I have no way of knowing how my body will do either way. So I have to take a leap of faith just like you all had to. It's just so hard.

This whole thing is coming about in a 2 week period, I really thought I'd have a few months to think it all out. I've been seeing the cardiologists for years but I haven't wanted to think about this until I HAD to.

Whatever, right. I have been blessed since I was 12 years old with great doctors and wonderful results, I believe this trip to the hospital (Aug 10th,07)will be no different.
It's very comforting to have met you all and read about your experiences and choices. I've been feeling very alone in this, lots of love around me but loved ones can only understand so much. I've been reading the pages here and you guys write about things like wires and scares and how you feel. I have found my "people"!!!

Hi, I also wanted tosuggest you join the forums at the adultsw/CHd board.There are many people there that have had multiple redos and quite a few had valve issues as part of their CHD(like my son) and have been dealing with their hearts and seen so many improvemnts their entire lives like you. http://www.achaheart.org/index.php
Your plan looks well thought out and Surgeons that work with kids and adults w/ CHD have the most experience with operating on hearts that have had numerous surgeries, so are very good at dealing w/ the issues that come up w/multiple redos like scarring ect. I will keep you in my prayers, Lyn
ps i saw your other post about valved conduits all in one,Justin's was made in the OR room with dacron and a bovine valve. So I can't help you , I think Ross may have needed one tho.

 

[Marguerite53]

Hello Tina.

Welcome to this wonderful community. You need a good surgeon! You need a surgeon who will carfully advise you on your choice and give you the confidence going into this major event. Please schedule a long conversation with your surgeon.

Sometimes people go in planning on a tissue valve, but once inside the surgeon determines that it just won't make sense for one valid reason or another. Most of us who got tissue understood that and went into the surgery with an open mind about it.

It is normal to be nervous. You can help that by getting everything in order in the short time you have. There are lots of threads on what to bring to the hospital, what to have prepared at home when you get home, etc.. They are just suggestions. Having loved ones close by is the best thing to plan for!

Keep asking quesitons. Start new threads with each question so that more of us (we are a huge and very caring and supportive group) can help.

Hang in there. Faith (of any description) and optimism are excellent ingredients for success.

Marguerite

 

[Marguerite53]

P.S. The Wizard of Oz is one of my all time favorites!

So much so that I have a wonderful little Cairn Terrier, just like Toto! See???.....

Marguerite

 

[Karlynn]

I get very uncomfortable with people choosing valve options based somewhat on what the future will hold. We don't know what that will be. When I was in grade school (or was it h.s., I don't know) the mechanical heart was the hope for the future, to be a permanent replacement for heart transplants. This never happened. The technology gave birth to great temporary heart pump options, but when the heart is "shot", the only best option is still the heart transplant for those that a new heart is an option. Other technology is just a time-buying option.

We have people who make choices in the hopes that in the future there will be a better option than Coumadin for ACT, or that a mechanical valve will be developed that requires no ACT. We also have people hoping that by the time they are due for their next tissue replacement, one will be developed that will last indefinitely. Great hopes, and entirely possible, but there are no guarantees. Not to mention that not everyone will be suited to the new technology.

My personal opinion is that the decision should be based on current technology and made in the context of your own individual medical history and DX. IMHO the "what if's" should be a nice side thought, but no one should go into a valve replacement counting on future technology to meet their specific needs/hopes. Plan on today's technology being the standard of the future and then be grateful if the technology ends up being better.

It's kind of like going ahead and marrying someone hoping that the really annoying habit they have that makes you cringe will go away with time. It may and you'll be happy, it may not and you'll realize you've made a mistake.

Dot - I would say the same thing to someone choosing an On-X valve because they want it to be the valve that doesn't require Coumadin in the future. It may happen, but the better reason would be to choose it because they are comfortable with the way it works now. If you are more comfortable with the thought of 3 more OHS's than you are with the thought of 1 more OHS and Coumadin, that's perfectly fine. I just encourage you to not place a lot of weight on future technology.

Best wishes!

 

[Karlynn]

PS - LOVE your avatar! We were in Paris 2 years ago and I'll be going to France at the end of January most likely and hope to make it up to Paris again. My daughter will be teaching in France (40 km from St. Tropez!) for 8 months starting in October.