New member- some surgery/recovery questions

[LaughClown]

ok, I had an echocardiogram to check up on a coarctation repair done on my aorta when I was an infant. I hadnt really had any symptoms but it had been a very long time since I had an echo. It took two weeks for me to get the results (my original doctor went on sick leave for a month right after the echo was done.) When I asked what the results were, there answer quite surprised me. They said my LV was enlarged and I had "moderate-severe" aortic regurgitation and its efficiency was down to 46%. The echo report (of which I got a copy) said that I had mod-sev aortic insufficiency and indications of stenosis.
This all said they then told me I need to have the valve replaced probably by the end of August to the beginning of september. They also said that there is increased pressure in the aorta around the repair which means that there may again be coarctation.
I guess my question is, what is the recovery difference in having the valve replaced, and having it replaced and the coarctation removed? Is the recovery longer? or more meds required after?
Any answers would be appreciated. Im having an MRI on the tenth to find out exactly whats going on. Also, what are the side effects of the meds required for a mechanical valve (i can tell its what my cardiologist prefers)?
Sorry for all of the questions, but I got a little caught off guard and Im trying to get as much info as possible, thanks.

 

[Georgia]

Hi, Laugh - welcome. I'll bet you're more than off guard - most likely shocked & terrified, etc. We've all been there and know just how you feel.

I really can't offer the info you need - there'll be others along who are aorta and coarctation patients; just wanted you to know we're glad you're here and we'll be happy to help however we can.

I suggest you read all the threads you can - if you're talking a mechanical valve, you might want to look at "anticoagulation;" and also check out www.warfarinfo.com. It's a website run by a member of ours, Al Lodwick, who's a pharmacist and who runs a coumadin clinic.

People may be slow to come by as it's the weekend; be patient and you'll have lots of info.

 

[tobagotwo]

Two parts of the recovery are longer, but they're not things that will really affect how you feel during recovery, nor your physical abilities.

Your risks of stroke and endocarditis are elevated for about three months with a "simple" aortic replacement. When there is aortic repair work done or root replacement, the risks remain elevated for about six months. This is the extra time it takes for the epithelium to grow over the dacron velour tubing or similar substances used for aortic work. An incomplete epithelial layer can attract the chemicals that create clots, and can leave openings for opportunistic infections. Neither of these things happens commonly, but neither is worth the risk of not applying reasonable preventative measures.

This means that if you have a tissue valve implanted, you will likely remain on some kind of anticoagulant (usually Coumadin or Plavix, rarely aspirin) for a longer time after surgery. If you have a carbon (mechanical) valve implanted, you will already be on lifetime Coumadin anyway, so this issue will be largely moot for you.

It also means that if you have any invasive medical or dental procedures in the first six months after the surgery, the cardiologist might want you to take intravenous prophylactic antibiotics before the procedure is done, to avoid risk of infection.

By all means, anyone having heart surgery of any kind, especially valve surgery, should have their teeth and gums tuned to their optimum before the surgery, if at all possible.

Best wishes,

 

[Ross]

Adam please look at the anticoagulation forum for your questions on Coumadin and Al Lodwicks site at www.warfarinfo.com . No doubt that you've probably heard a ton of old wives tales about Coumadin and we work very hard here dispelling most all of them. What we hear from new folks all the time include the completely laughable, "You can't use a razor to shave" to the ultimate BS of "You can't eat anything green". It's amazing what is being told to potential mechanical valve patients from friends, the medical community etc.

 

[temp69]

Good Luck!

Good Luck!

I had AVR and AR and bypass done one month ago. I'm up and around, going to rehab, feeling better every day.

Keep a positive attitude. Smile as much as possible. Avoid TV news.

let me know if you have any questions.

temp69

 

[LaughClown]

Considering valves

Considering valves

Well, its 3:42am and Ive been researching valves, etc and thought I'd just write what I'm thinking. The thing I guess is that Im 22yrs and my doc said the mechanical valves generally last 50yrs or so, which puts me in my 70's needing a new valve. So I started thinking, what if I got a tissue valve and decided to go with a mechanical valve in 20yrs? Or maybe try a ross procedure if possible, I am getting the surgery done at the university of utah which has a cardiac research section and is top notch from what I hear. Of course this still all says that I have another surgery in my 40's or so. Its just that 50-60yrs on ACT seems like a long time. I dont know. Alot of this probably depends on the results of the MRI. Just putting my thought out there I guess.

 

[aussigal]

Hi and welcome...

I can see you have gotten addicted to research already...I found I too needed to know everything before I let the surgeon have his turn on me.

Personally I hope my new mechanical valve lasts every bit of 50 yrs if not longer...I was told it would outlast me and I plan to be around til at least 90. A lifetime (50 yrs plus) on warfarin doesnt bother me at all. In the 3 months I have been on it I havent had any dramas once I got my dose right ...I really dont know why anyone should be afraid of it.

I had a pretty big valve and aorta OP then followed up with a by-pass as well (10 hrs surgery). Recovery wasnt much longer than others here although it seemed to take forever at the time and at 3 months out I am back to normal.

I say get it all fixed at once and get on with living your life.

 

[Liz]

Welcome!

Welcome!

Hi Laugh - I don't have experience with the aortic valve so I can't address your questions, but I wanted to join in on welcoming you to the site. Keep doing your research and asking your questions here and of your doctors. But ultimately when you are making decisions about what type of valve to get, etc., my advice would be to listen to your heart. Only you can know what is right for you. And if you start to feel overwhelmed by all the info remember to breathe, take a walk, be in nature, laugh with friends - balance all the left brain info so you can make decisions with your whole self.

Looking forward to hearing more from you. Take care, Liz

 

[ALCapshaw2]

Welcome Adam,

The Ross Procedure offers some interesting benefits IF you are a good candidate. I strongly recommend that you consult with an RP Specialist with LOTS of experience and a good track record. Most cardiac surgeons do not do the RP or don't do it often enough to be really good at it.

In the mechanical valve department. you may be interested in the Third Generation valves from On-X, ATS, or St. Jude Regent. These valves have been designed to minimize turbulence and clot formation. Studies are underway to see if lower anti-coagulation levels and even aspriin-only therapy may be viable long term. Do a SEARCH on the above valve names and see their websites for considerable information on these improved valves.

The Gold Standard for longevity is the St. Jude (standard) mechanical valve which should last longer than you would need to be concerned about. Most mechanical valve replacements are due to growth around the valve which inhibits motion or issues with the sewing / sewing cuff (and how well the surgeon implanted the valve).

I expect the Valve Selection Forum, Anti-coagulation Forum, and Al Lodwick's website www.warfarinfo.com will keep you busy for a while!

Feel free to ask more questions as they arise.

'AL Capshaw'

 

[Ross]

Adam a mechanical valve will out last you and long term Anticoagulation therapy is not a big deal either. I don't know how long RCB has been on it, but he is one of the first valve receipients when it all started. I'm sure if he sees this thread, he'll have some words also.

I'm for anything that is going to keep you away from repeat surgeries. With each one, the risks get higher, the recovery more difficult and it's just not something you want to be doing over and over again. At 22, that would be a lot of possible redos.

 

[Arlyss]

Multiple Things to Sort Out.....

Multiple Things to Sort Out.....

I am wondering if they have been able to detect whether the aortic valve is bicuspid or not? Sometimes it is hard to tell on an echo if the aortic valve is bicuspid. Bicuspid aortic valves and aortic coarctation are found together in some people.

MRI is a wonderful imaging technique for the aorta. The MRI should tell you all about your aorta. It will show the site of the coarctation repair, which is usually just beyond the arch as the aorta begins to bend downward. It will show your ascending aorta. You want to know if the ascending aorta is enlarged or not. And it will show your descending and thoracoabdominal aorta. You and your doctors want to know all about every part of your aorta.

Then there is the aortic valve, which you are currently researching.

An aortic surgeon will need to review the MRI studies and explain all about your aorta and your valve. Then decisions may need to be made about what needs attention first. Is it the valve? Is it the ascending aorta? These could be done in the same surgery. Does the coarctation site or descending aorta need repair? Surgery for this area of the aorta is a different surgery than what is done on the aortic valve/ascending aorta.

You might check out www.cedars-sinai.edu/aorta for additional information.

Best wishes in your search for information.

Arlyss

 

[JohnnyV_46]

Man, if you want your life to be more like normal, short a few scars...Get a Tissue valve...You're too young to be dealing with the Coumadin thing. I'm sure everyone here likes the valve they have. Get the tissue valve, stop worry about the "Lasting 50 year" thing.....Heck, who say's you have or anyone else here has 50 years? Just Do It!

JohnnyV

 

[LaughClown]

Insurance question

Insurance question

Ok, I have a question about insurance. Im not sure how many people have dealt with student insurance, by I get mine through the university. The problem is that since Im probably getting the surgery done at the end of august I wont be enrolling for the fall, but you arent allowed to take two semesters off in a row. It mentions in my plan that if someone gets sick and takes an additional semester off then they can get continuance coverage but it maxes out at $12,500 which is only a quarter of my normal coverage and obviously not enough. Has anyone dealt with this? are insurance companies flexible at all on these issues or am I basically going to have to come up with $70k+ somehow? At least they only qualify pre-existing conditions as conditions treated in the preceding 6mons of enrollment, so I will be covered.

 

[Lynlw]

I don't know how student insurance works, but was wonderring if you ever checked out the forum at the adults w/ CHD site? http://www.achaheart.org//boards/index.php
I know a few members there had surgery around your age and used their students insurance, so they might be able to help w/ this. you mentioned missing 2 consec semesters, are you counting this summer? I'm not sure if summer counts as a missed semester since alot of college students take the summer off.
also about your valve choice, I didn't see where you mentioned if you were a male or female (altho since ross calls you Adam, i am thinking male but that would play a part in valve selection for a female your age.
Good Luck, I know it is alot to think about, Lyn

 

[geebee]

Man, if you want your life to be more like normal, short a few scars...Get a Tissue valve...You're too young to be dealing with the Coumadin thing. I'm sure everyone here likes the valve they have. Get the tissue valve, stop worry about the "Lasting 50 year" thing.....Heck, who say's you have or anyone else here has 50 years? Just Do It!

JohnnyV

Hey - I kind of resent this post. I started coumadin when I was 28 and my life has been perfectly normal for the past 26 years. I think it is misleading to imply that people on coumadin cannot lead normal lives.

 

[geebee]

And sorry, Adam, welcome to our forum. I know you have lots of questions and I want to make sure you get accurate information.

 

[JohnnyV_46]

Yes, Gee but you know if you could have done it without it, you would have! Everyone on it would have.

 

[geebee]

Yes, Gee but you know if you could have done it without it, you would have! Everyone on it would have.

Yeah and if I could have been born rich, I would have chosen that path. Everyone here would have chosen a life without OHS altogether but not really the point here.

I had a choice with my third surgery and I chose mechanical because I know the dangers of multiple surgeries and I know the ease of a life on coumadin. Not too many people can say that they know both sides.

 

[ALCapshaw2]

Man, if you want your life to be more like normal, short a few scars...Get a Tissue valve...You're too young to be dealing with the Coumadin thing. I'm sure everyone here likes the valve they have. Get the tissue valve, stop worry about the "Lasting 50 year" thing.....Heck, who say's you have or anyone else here has 50 years? Just Do It!

JohnnyV

You forgot to mention that at BEST, tissue valves (mainly Bovine Pericardial) last up to 20 years when implanted in older patients (over age 60). So, are you are telling this 20 something patient not to sweat having his valve replaced every 10 years or so for the rest of his life?

You also forgot to mention that tissue valves deteriorate MUCH more rapidly in younger patients, and how the risks increase with each succeeding Open Heart Surgery.

Don't think that I am anti-tissue valves either. My first choice was a Bovine Pericardial Valve, but my circumstances did not favor that choice, even though I was in my late 50's at the time.

Bottom Line: I recommend learning as much about the different options and doing what 'feels right' for each individual's life and lifestyle. Just get the 'Big Picture' first and then make and INFORMED decision.

'AL Capshaw'

 

[LaughClown]

Hey, I'm back. Ive been thinking alot on valve selection and I was pretty even until someone made the point that I dont know where my financial status/medical insurane will be, in 15yrs and how difficult it will be to get a replacment done, and since Im so young I might as well get it done for good. So I started to lean towards a mechanical valve, but then I started to think. Im going river rafting in a couple weeks. Will I ever be able to go again or is the risk of head injury to high? What about dirtbikes/motorcycles? Will a helmet be enough or will I have to avoid those too? How careful of head injury will I have to be?