48 year-old newbie - Lots of questions to come

[ARGreenMN]

Aplogize in advance for the long post - I tend to get wordy... Have had bi-cuspid aortic valve since birth, diagnosed when I was 12. Have known for years I'd have to have it replaced eventually and have been getting annual echo's for last 5 yrs or so. Over last 1-2 years, the shortness of breath, chest/back pains and light-headedness has been getting worse. Had angiogram yesterday. Pleasantly surprised there were no blockages and that my cholestorol is below 200 (was above 200 last time I had it checked couple yrs ago). But, it is time for the valve to go (my understanding is it's only opening at 25% of what it should be).

They want me to call back today or tomorrow to schedule the surgery within the next 4 weeks. Due to work schedule, I'm planning on pushing the envelope and asking if I can schedule it for late April (4 wks from tomorrow to be exact, so I can make it to a big mtg on 4/27).

Have known about the pig vs. metal decision for a few years now, but just starting to do the in-depth research today (well known procrastinator here). Surgeon suggested metal yesterday because of my relatively young age, but he would do pig if I want. As of right now, I'm leaning towards pig because I'm not excited about blood thinners (even though I've read many of the 'they're not as bad as you think' posts) and the clicking sound thing bothers me a little.

Here are some of the reasons I'm leaning against blood-thinners... I'm terrible about remembering to take meds, not excited about having to worry about monitoring diet (i.e. limiting fish), limiting alcohol or having to do regular blood tests. Not excited about bruising easily (still kinda vain) and still want to be active, including 'contact' sports like basketball, softball, sex, etc. But the number one reason I'm afraid of blood thinners is because I saw it may cause hair loss (remember, still vain - and in market for next mrs. right - plus trying to keep some humor here...).

So, my thinking right now is - get a pig valve, get all my fun out of the way in next several years, including finding next mrs. right, and plan on getting it replaced in 7-15 yrs with a metal one. Part of my reasoning is by then, maybe less intrusive procedures will be available so the 2nd on won't be as big of a deal... I know, hopeful thinking... Anyway, I've got a lot more reading to do and may change my mind, but that's where I'm at right now...

Will also have lots of questions (will I have to have someone help me go to the bathroom for a while after surgery???? Single now, and that wouldn't be cool! If so, for how long?). Sexual side effects from any of this procedure or blood thinners??? And many, many other questions I'm sure.. So get used to seeing me

 

[dick0236]

Here are some of the reasons I'm leaning against blood-thinners... I'm terrible about remembering to take meds, not excited about having to worry about monitoring diet (i.e. limiting fish), limiting alcohol or having to do regular blood tests. Not excited about bruising easily (still kinda vain) and still want to be active, including 'contact' sports like basketball, softball, sex, etc. But the number one reason I'm afraid of blood thinners is because I saw it may cause hair loss (remember, still vain - and in market for next mrs. right - plus trying to keep some humor here...).

So, my thinking right now is - get a pig valve, get all my fun out of the way in next several years, including finding next mrs. right, and plan on getting it replaced in 7-15 yrs with a metal one. Part of my reasoning is by then, maybe less intrusive procedures will be available so the 2nd on won't be as big of a deal... I know, hopeful thinking... Anyway, I've got a lot more reading to do and may change my mind, but that's where I'm at right now...

Welcome ARGreenMN. Your will find an abundance of info and opinion here.

My problem was also deteched when I was very young and diagnosed as a result of rheumatic fever. Doctors today feel it probably was a mis-diagnosed bi-cuspid valve. You made it a lot longer than I did ( 48 years ). My valve was replaced when I was 31. It was mechanical because there was no other choice at that time. As it has turned out, the mechanical valve has served me well and still shows little sign of wear. Your concerns over any limitations due to warfarin are unfounded, especially the hair loss. I just came in from my barbershop (still have a full head of hair @74). I have never experienced any of the problems you outline. Even survived a bout with alcholism ( now sober 20 years) Although many advances have been made in surgical procedure, from what I read it is still a lot like it was in 1967. Don't count on it being an "outpatient procedure" in a few years. Do your homework, weigh the pros and cons of each type valve, "go for it" and then enjoy the rest of your life.

Just noticed your comment about "remembering your meds". This is the ONE thing you must do with Warfarin. In my opinion, if you cannot establish a dosing regimen, do not go on warfarin.

 

[Ross]

Here are some of the reasons I'm leaning against blood-thinners... I'm terrible about remembering to take meds, not excited about having to worry about monitoring diet (i.e. limiting fish), limiting alcohol or having to do regular blood tests. Not excited about bruising easily (still kinda vain) and still want to be active, including 'contact' sports like basketball, softball, sex, etc. But the number one reason I'm afraid of blood thinners is because I saw it may cause hair loss (remember, still vain - and in market for next mrs. right - plus trying to keep some humor here...).

First off, your hearing a lot of myth and downright B.S. about anticoagulants. So your bad at taking a pill. Do you forget how to start your car in the morning? You do not need to worry about what you eat nor really, limit your intake of alcohol, unless your predispositoned to ulcers. Go have a look at what the mechanical valvers are doing in the active lifestyles forum. We hear this same line from every new person that comes in here. They've been told so much B.S. that tissue is attractive. Thing of it is, going tissue, your going to have to have yet another operation down the road, maybe even up to 3. Just because this surgery can be done again, doesn't mean it should be. Ideally, you shouldn't have to go through this at all, but that's not reality. Some of us have been at deaths door after surgery, some never made it through surgery, so I'm all for anything that would lessen your chances of another surgery and beleieve me, taking a pill a day is much better then subjecting your body to the possible commorbiddities that go along with surgery. Heck, if you develop chronic afib as a result, your going to be on anticoagulants anyhow.

My suggestion is for you to visit the active lifestyles forum and anticoagulation forum and really make Coumadin studying a part of your decision making process. Also go and read your brains out at www.warfarinfo.com . In the end, it's your choice. I'm only trying, like I do with all of you younger people, to spare you from anxieties down the pike. This is serious surgery and should be given serious thought. There are no guarantees either way, that you won't have to have another surgery, but mechanical is going to lessen that probability greatly.

Need help going to the bathroom? Are you kidding? There going to make you get your lazy, very sore butt outta bed and MOVE. j/k You may need some help the first trip or two just because of sedation is going to make you wobble like a weeble. Other then that, nope, your on your own once they take the catheter out. Sex? Umm what is that? Someone else mentioned it in another thread and I'm still trying to figure it out.

 

[neil]

hi there,welcome aboard,well just remember its your choice and pick the best valve for YOU, you will hear opinions for both valves no doubt,but thats all there are opinions,i to didnt want to be on anti coags hence i picked a piggy one,even though most on here do well on anti coags its not something i would like to be on,if it was that easy to just take a pill everbody would have mech but you can get problems with anti coags hence all the effort being but in to do away with coumadin,never the less i do believe most people do fine on them,also be aware even if you do pick tissue you can still finish up on them,as you can having to have a reop with mech,personally i didnt find the op that bad at all, but the most important point is this,whichever you pick it will sure be better than the one you got now,

 

[Woodbutcher]

Hi and welcome to the forum ... pretty much all your fears with regards Warfarin, as Ross and Dick say are unfounded. I've had a mechanical valve about 15 months or so and had all your concerns to start with. Now though I eat what I want, drink what I want and pretty much do what I want too ... I do everything now that I did before with the only difference being that I take a pill at bedtime. That's just become part of my routine...Actually probably my only routine ! It's very hard to forget because when you lay down and switch off the light to go to sleep, the last thing you'll hear is the quiet ticking inside you, which never fails to serve as a reminder that you've forgotten the pill ! The only time I alter the routine is if I intend on drinking copius amounts of alcohol, in which case I'll try and take it before hand !
But whether you go for a Pig or Mech, neither are ideal ... But for me atleast, I'd rather put up with the Warfarin than have the thought of another operation on the scale of the one I had again, a few short years down the line ! It completely knocked me for six, both mentally and physically, with a long hard recovery too, and I for one wouldn't be setting myself up for more of the same.

 

[Luana]

Hi,
I had AVR surgery in Nov. I'm only a bit older than you, and was recommended a mechanical valve. The deal breaker for me was the thought of additional surgeries. Without ever having had OHS before, somehow I had the idea that I probably would not want to have it again if it could be helped. Within hours of waking up after surgery I thanked God for the surgeon's recommendation. I had a few speed bumps during recovery, but it all worked out fine. As for the anti-coagulants, it really is not a big deal. I have not modified diet at all. I don't know why you would need to restrict fish? Never heard of that one!

As for what the future holds for less invasive valve-replacement procedures, my crystal ball did not say much; I don't put much stock in that. You don't know what your health will be like when you need the tissue valve replaced, and generally, the younger you are, the less mileage you get out of them. I decided to go with the here and now rather than what may be in the future.

I was out of bed the morning after surgery in ICU sitting in a chair for breakfast and at lunch. I did not need any help going to the bathroom in the hospital. I live alone and came home after 8 days and did fine. It will be nice if friends/family can bring food and/or groceries for the first couple weeks and you will need someone to drive you to first few doc appointments, but other than that, you should do fine on your own.

Luana

 

[njean]

Just wanted to welcome you to this forum. I hope too that some of your doubts & fears will be somewhat lessened by some of the responses that you receive from those of us here who have survived & thrived after OHS.

As others have said in their previous posts, valve choice nowadays is a matter of preference. Back in the days when Dick0236, myself & a few others had our surgeries, valve choice was not an option & our surgeon usually made that choice for us. That said, however, if I'd had the opportunity to make a choice, and I knew what I know NOW, I wouldn't have changed a thing.

I've been on coumadin for 35 years, lived an absolutely vibrant & active life, have a full head of hair, and have survived 3 OHS, plus two other major surgeries & I'm still standing! (Maybe that's the feline in me, in which case, out of the 9, I still have around 4....LOL!)

However, whatever choice you make, it will be the RIGHT choice for you as long as you feel comfortable & at peace with your decision!

Best of luck to you!

 

[ALCapshaw2]

It's not clear from your post whether you have interviewed a Surgeon yet or only a Cardiologist.

I'm wondering how much you have read in the BAV and Connective Tissue Disorder Forum.

As a congenital BAV patient I would highly recommend that you find a Surgeon with LOTS of experience dealing with BAV and Connective Tissue Disorders for reasons I have outlined many times in previous posts. Have you been checked for signs of an aneurism? The Gold Standards for aneurism testing are a Full Chest Catscan or MRI. You are most likely to find Surgeons with the relevant experience at Major Heart Hospitals such as the Mayo Clinic. I know there are other Heart Hospitals in MN but not sure how many BAV / Connective Tissue Surgeries they perform.

Given your age, I would recommend a Mechanical Valve (made with Pyrolytic Carbon leaflets, NOT metal) but have given up trying to persuade patients who are predisposed to fear anti-coagulation since I rarely see many change their minds.

I would encourage you to look into Bovine Pericardial Tissue Valves rather that "Pig" Valves because the Bovine Tissue valves have a Proven Longevity typically TWICE that of Pig Valves.

'AL Capshaw'

 

[BlindFaith]

Welcome... you came to the right place. I am 56 and waffled back and forth on which valve and didn't decide until the last week. After much thought and reading, I went with tissue. Read and ask all you want and then decide what is right for you. Either way will be a good choice... they both work. As far as after surgery, you'll be walking as soon as they get you off the ICU and the catheter comes out pretty quick as well. After that, you can take care of most everything for your self... except driving, That takes a little time and if you start driving before you're ready, you'll take longer to feel better (as the chest fully heals). Like most things, you'll be surprised how many movements impact the recovering chest area. My valve was diagnosed as "severe" stenosis and encouraged to have the AVR within 6-8 weeks. I pushed another month after that so that I could get my kids to college and then have the surgery. This is a great place to read about similar people in similar situations as you. Very calming to realize many others have come before you and are doing everything post-OHS that you want to do. Good luck.

 

[tobagotwo]

Welcome to the site.

Some thoughts...

The less intrusive ways available are minimally invasive and robotic surgeries. Both are still surgeries. And surgeons are sometimes reluctant to use them for second surgeries.

The catheter-delivered valves you may have heard about are special, tissue valves, which would need replacing later on, and aren't being considered for younger patients who can physically handle surgery.

The only sexual side effects I can think of are that you can't be on top until your sternum heals, and the scar can scare the heck out of your partner, so that they become afraid you might pass away during the act (not an issue, they'll get over it).

You shouldn't need anyone to help with the bathroom. However, you will be restricted in lifting and carrying, so milk has to come in half gallons. Also look at other things (like laundry) in terms of how you are going to do it without going over your weight limit.

You won't be able to drive for maybe four weeks. Even if you can physically manage it, your insurance usually won't cover you until your doctor releases you to drive. It takes more twisting and movement than you think.

You're on the very young edge of reasonable tissue valve use, maybe not even to the edge. You'll most likely be at the seven-year end of that guess, rather than the 15-year end.

The mechanical valves are made mostly of pyrolytic carbon (like a really expensive sports car), rather than metal. Tissue valves come in pig, cow, horse, and mixed grille. The ones with the longest stats are the cow pericardium version (Edwards Perimount Magna) and the mixed grille version (St. Jude Biocor).

Let us know what you're thinking and how you're doing.

Best wishes,

 

[dick0236]

Welcome to the site.
The only sexual side effects I can think of are that you can't be on top until your sternum heals, and the scar can scare the heck out of your partner, so that they become afraid you might pass away during the act (not an issue, they'll get over it).
,

I almost spit my teeth out on this one. I had forgotten about those early post surgery episodes with my wife. I think both of us had concerns whether or not I would croak......kind of puts a damper on the whole thing. Fortunately, things get better.

 

[halleyg]

Welcome to the boards...as others have said, valve choice is a personal decision. I have a mechanical mitral valve, got it when I was 38. I have had two OHS and no way would I want another one if I could help it! IMHO, you should consider getting the mechanical, find your Mrs. Right, and not have her worrying about you undergoing another OHS. You can just get on with life. And I'm not sure what you meant by watching your fish intake..? I eat fish and am otherwise a vegetarian, eat lots and lots of green stuff, all the things they will tell you in the hospital not to eat. (it really is all myths...) You will be able to play sports, have sex, etc... I have joked in the past about being vain and I disliked my scar, so I had a few laser treatments at my dermatologists office and you can hardly see it now... about going to the bathroom, right after surgery you aren't really going to care if you need help! Anyhow, you've already gotten some great advice, just my 2 cents... good luck with everything.

 

[Jkm7]

Welcome. Happy you found us and hope we are able to help you through this stressful time in your life.

We have all been there, been there with a loved one or are waiting for surgery and only those who have been there truly understand. The wait and anxiety are very difficult to bear.

I had two OHS in four years and my second surgery was valve replacement. When I was choosing which valve, I full well knew what to expect from surgery having been through it just four years prior. I chose bovine tissue valve and am so happy I did. For ME, it was the right choice. Most tissue valvers have a short course (about 3 months) of coumadin until our own tissue grows over the valve to keep us safe from clotting. When my surgeon said okay for me to stop at 2 1/2 months, I was very happy. I had no horrid incidents while on it but really wanted to stop taking it. You really should read the anti-coagulation section here. So much excellent information. There you will learn you should not think in terms of dieting the dose of coumadin but rather your coumadin clinic (manager), if you go with mechanical valve, should be dosing your diet. You won't have to avoid food but will have to be consistent in eating them regularly.

Whichever valve you choose, it will be the right choice for you. Don't look back or second guess yourself. Any choice you make is life saving and the only bad choice is to not have the surgery.

Sending you all best wishes.

 

[Freddie]

Hi and welcome, I echo what the others have said and all I can add is that my surgeon said point blank "I don't think you want to go through this again", I was .....46 I think.

But what I can tell you is that you may/will have difficulties opening the fridge, bending over so forget about putting socks on and reaching for things that are above shoulder height.


I second what Luana said. Also, you may want to think about getting some frozen dinners ready and cut your toe nails soon

 

[Cozycat]

Hi and welcome to our world. (Now your world too.) At age 67 went with a mechanical because both my cardio and I felt I would outlive a tissue valve and once is enough for some things in life, including OHS. I have yet to hear a click, tick or any noise from my St. Jude's valve. Have a friend who had the same surgery a couple years before me and he said his valve clicks once in a while but may be days or weeks between when he hears it. And, like everyone says, remembering to take the meds isn't all that hard......at first it is but after a month or two it really gets to be a habit. I woke up at about 1 AM one day with my brain telling me I didn't take my bedtime warfarin. It's amazing the things our body tells us!

As most on this site will attest, chosing the right valve is one of the hardest decisions you will make...but the answer will come. The shorter the wait time is for your surgery, the better. Less time to stress out about what is going to happen to you. Just remember, you are going to come out of surgery a whole lot better than when you went in.

Midge

 

[Lily]

One thing I was thinking about as I read your post was that nearly everyone here who might reply is a patient, and not the loved one biting their nails, stressing out in the operating room, wondering what might happen to you during your next surgery. Is that too gloomy? It's just that I later realized that my OHS was rougher on my husband (and we just celebrated our 30th wedding anniversary) than I realized at the time. Meanwhile, my pig valve is closing in on seven years and is not doing well; I was 42 when I got it. Not that it matters really, but I'll most likely get a tissue valve again, for good reasons. Remember though that no matter what valve you end up with, there's no guarantee you won't eventually need another valve replacement or won't need to eventually go on some type of medication. That said, I was AMAZED at how much better I felt with my new valve! And I hope it goes so well for you. I hope this candid post was helpful. My thoughts are a bit scattered this evening; sorry.
Best wishes to you .

 

[Philip B]

Concerns

Concerns

I'll simply echo some of thr responses that have already been made...

Many of your concerns about coumadin are based upon misconceptions. Other than testing my INR weekly and taking a couple of pills nightly, my life really hasn't changed since I received my mechanical valve three years ago.

Contact sports present no problems. Sure, if I fall, get hit, or crash, I'll bruise, but I bruised when I fell, got hit, or crashed long before I began taking coumadin. I've been bruised and had bones broken since my AVR surgery in 2007 and I don't seem to be any worse off despite the wear and tear.

I've never altered my diet either. I eat and drink whatever I want.

Sex as a contact sport...I like that concept. An artificial valve and coumadin have had zero negative impacts on my participation in this particular "contact sport." I was back in action very quickly after returning home from the hospital. What you can do, how much you can do, and how you do it is an individual thing. I doubt I'll be cutting back any time soon.

Remembering to take medications still sometimes presents problems for me. I've never missed taking my meds, but I've certainly come close a couple of times. I tend to get busy and just space it off. It's a challenge for me sometimes, but that's okay...I deal with it.

As others have noted, there really aren't any bad choices when you're selecting a valve. It's a personal choice. Do take the time to become well-informed about legitimate issues associated with the valve types which are available. I always hate to see people make decisions based upon misconceptions and/or misinformation.

-Philip

 

[colsha]

G'day and welcome from me too.

The Connective Tissue Disorder was mentioned in one of the earlier posts. Definitely check this out. If this is what you have my recommendation would be the mechanical valve to minimise (eliminate) the need for further surgeries.

One of the issues with CTD is that your arteries may or may not be 100% healthy and therefore the less stitching (even a few years later) that needs to be done around your aorta the better.

I've had 2 surgeries
1. Coarctation repair in 1999) and
2. BAV and aneurysm repair with St Jude's artifical valve 5 weeks ago

Both surgeries had issues and both recoveries had issues. Obviously, from my perspective, the fewer surgeries for me the better. Warfarin was a huge concern for me also - I put off getting operated on for quite some time because I was awaiting a new technology or medicine which would replace the need for Warfarin - but finally had to just accept it. It really isn't that bad and hasn't caused me any problems at all.

I would also say that it's quite possible you'll be placed on other medications following your hospitalisation - some temporary and maybe some permanent, so the idea of setting a routine or medicine regime may be something you'll have to do anyway.

Cheers and good luck!

Col

 

[Bill B]

I had all the same misgivings about warfarin and clicking prosthetics. Despite the fact I'm trained as a pharmacist, until my surgery I had never taken any medicine for anything more than a cold in my life and I considered myself a terrible candidate for chronic medication. In fact, it was a badge of honor that I had never had to take anything chronically. I did not want to give that up. Also, the thought of monthly blood test bothered me a lot as I've always had a very strong needle phobia.

After a lot of hemming and hawing, I faced the music. My conclusion after reading almost every original study on the subject was that if you are otherwise very healthy, as I am, you should go with mechanical, almost regardless of age. If you have any other health problems, such as diabetes, kidney disease, lung disease, etc. you can go tissue because an analysis I believed showed you will probably not outlive the valve in that case.

So, what has happened since I got my mechanical valve? First, my St Jude's thumps but does not click and has never bothered me. The bruising/bleeding thing with warfarin may be true for some people, but I don't know who. I am a full-time car wrench (as a hobby), and I bang and cut myself all the time. With my protime about 2.5 times normal, you'd think I'd notice it, but cuts stop bleeding just fine and I have no bruising problem at all. I've got a lab tech who draws my blood with such skill that I no longer have needle phobia. Not all lab tech are as good. So, I tried a bunch until I realized this guy was it, and I now schedule my lab drawing with him. Most labs should allow appointments and for you to select the tech you want.

As far as going to the bathroom, the nurses helped me the first few days in the hospital, but that was it. This surgery is not going to make you an invalid. By the time you are discharged, you should not need assistance with any activities of daily living.

One last thing - has your aorta been evaluated? There is a tendency among some cardiologists to not pay very close attention to the other connective tissue problems associated with BAV. My original cardiologist didn't. But I consulted a surgeon who had made a close study of the aortopathy of BAV. He did a rapid CAT scan with contrast that showed my aorta to be significantly enlarged. There is some disagreement about the maximum safe limit for an enlarged aorta, but if it's anywhere near that limit, chances are you are going to need it grafted at some point, and there is risk of dissection even below that. My surgeon favored doing the valve replacement and aorta repair as one operation, arguing that the aorta repair adds very little risk, probably less than two separate operations. Anyway, I know you are considering multiple operations as an option, but I don't think it would be a good idea to not do the aorta at the same time if it is diseased as it commonly is in BAV. Oh, and FYI, there is a smaller (10%) chance of cerebral aneurysms in patients with BAV, another complication of the connective tissue disease. So, I requested a brain MRI, which was clean in my case.

Good luck,

Bill

 

[ARGreenMN]

I'm going to go back through and reply to some of the individual replies later, but OH MY GOD you guys are awsome!!! For those thinking you rarely persuade folks to change their mind about mechanical vs. tissue, think again! I think you've changed my mind. Still not gonna rush to a snap judgement, heck, I do weeks of research when I buy a new car, you can imagine how much I'm gonna do for my new vavle, but as of right now, after reading all these great posts, am leaning towards mechanical. I'm going to have tons of other questions, but in meantime, if anyone has ever heard of Dr. Robert W. Emery (does his operations mostly at St. Josephs Hospital in St. Paul, MN) please let me know any reviews. I've read and heard great things about him so far, but would appreciate even more info. He didn't mention anything about possible connective tissue problems (maybe because I don't have them - hope so) but will defniitely ask. And, it seems several are recommending a particular model for mechanical (St. Jude I think it was). Any idea if I can request that specific one, or does the surgeon usually decide? Or can I order it on ebay? Lol, trying to keep some sense of humor to make this easier on me and those that love me. Hope that doesn't offend anyone - I'm not taking it lightly (trust me!). Thanks again all, and I'll be back soon!