valve questions

[Nancy]

Something else I forgot to mention. Some have mentioned that these posts are repetitive, and some of our older members may be very bored by all this.

I have been in sales for as long as I can remember, both for others and then in promoting my own business.

Sales Managers know this fact. YOU may be bored with things that you've discussed every day forever. YOU may see the imperfections in your products, and the foibles of us all. But for the people who have never seen this site or are looking for guidance, this site is brand new and we DO have to concern ourselves with that. It's new, exciting and scary, all at the same time.

So, oldies, please put on your newbie glasses and keep your mind from glazing over as you discuss things that have been discussed over and over. It's not boring to the newbies, and it may save their life.

Try to never be bored when you are trying to help others who need help.

 

[Lynlw]

Thank you everyone to the replies about my post and for taking it in the way I meant it. thank you to for the nice things you always say about the parents of kids having CHD. I really am thankful for groups like this. when Justin was born we felt so alone since there weren't support groups or even computers lol. And since Justin's repair is ones they have only been doing about 2 decades (we were told if he was born only 5 years earlier, they wouldn't have had the technology to help him and would have had to sent him home to die) I know really each day is a gift. We also had to make alot of choices based on theory since there weren't older kids to see how things turned out, so you tend to get a different mind set and in some cases have a procedure to basically buy time until the next advancement is made and hope it comes in time to help you. right now our hopes lie w/ the tissue engineering being done, where they are growing conduits and valves out of the patients own cells so hopefully Justin won't have to get his conduit/valve changed every decade or so.
RBC, no you were not one of the people I was thinking of ) but there are a very few people that do use the words, stupid, foolish or nuts to describe younger people choosing tissue, and even tho they make very good points, I think other new people might disreguard everything they are saying when they use those words. I have seen how wonderful everyone is once a persn makes their decision and what a great support system the group is whatever choice is made
Justin just got a bovine valve in a dacron conduit from his right ventricle-pulm artery and really for us tissue/mechanical wasn't really an issue since he will need the conduit replaced anyway, but when we were discussing the possibility (since for we were trying to pick a surgeon/hospital and talked to 4 centers) My concern about mechanical was Justin takes no meds and since in a year he would be going to college, I honestly didn't want to worry about him taking pills making sure he goes to get blood work or even refill his prescritptions, (i know how 18 year old boys in college can be) he already broke his arm and needed rods put in and out skateboarding and broke his arm snowboarding and one of his concerns was he didn't want to 'click" he has a friend his age that clicks and he didn't think he would like that.
Luckily all of the doctors agreed w/ our choices and since it was a pulmonary valve and he is 17 and never had one before, going into surgery it was decided he would get tissue or if not possible, would just not have a pulmonary valve until next time he needed his conduit replaced.
I do have to say he feels so much better, I'm not sure if it the valve or the fact his conduit isn't almost complete blocked w/ scar tissue/calcium, but I think it is probably the combination
Thank you again for everything, Lyn www.caringbridge.org/nj/justinw

 

[Rain]

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MMARSHALL said:

i have to admit...this is the big turn-off of this site. how about a new rule...a new member comes in asking about the tissue vs. mechanical....let the person know what you decided on and maybe why...and what i mean by that is....what the cardio and surgeon told you. maybe the lifestyle you have...and what your cardio and surgeon told you what valve better suited that. if you have data and stats...give that person the link to go see it for themselves. before my surgery, this site helped me with support. i already did my research and talked to 3 different surgeons. but seeing ross post about how he is tired of all of the tissue talk and feels that mechincal is the way to go....this site should not be about persuading a person's decision...it should be about support, and when that new person asks about your experience...let them know. because personally...i had no problems at all with this surgery and when the time comes...i feel confident i can do it again. i had positive thinking going into surgery...had it coming out....and when the time comes...i will have it again. scaring people with near death experiences should be stated just so they know...but scaring people and stating it over and over to the point to changing their mind on valve selection...that should not be left up to us.

 

[Sherry]

My concern about mechanical was Justin takes no meds and since in a year he would be going to college, I honestly didn't want to worry about him taking pills making sure he goes to get blood work or even refill his prescritptions, (i know how 18 year old boys in college can be)

You know...I never really thought about the valve issue from this perspective until I read this comment of Lyn's and then Rain's subsequent post about Ryan. I too have a 17 year old boy who will be off to college next year, and if he were in the same situation, I would be scared as heck that he wouldn't be consistent with his coumadin (eating wacky, perhaps forgetting to take it, getting his blood checked). He was on an antibiotic this year for some minor acne, and I had to badger him daily about taking it. Thanks to both Lyn and Rain for opening my eyes to this debate.

 

[cocoalab]

Thank you Lyn,
I too am a new comer and had already planned the tissue valve after we learned it was a choice we had this time around. Since I have dealt with coumadin for a while and the mechanical valve, I think I have some idea how it affects us personally. It seems that kids have a hard time with valves no matter which way you go and you often don't have a choice on which one they get.

Andrew's surgeon was planning on mechanical but had no problem when I asked if we could go tissue this time. When asked what the draw backs were he said the lifespan was only 8 to 10 years on the tissue and 10 to 15 on the mechanical. I know it might have lasted longer but those were the estimates he gave me for Andrew. He did not make me feel like going tissue was the wrong choice. Sometimes when I read here I do feel like some here feel like we made the wrong choice, but it could just be me being too sensitive.

Anyways just wanted to say thank you for your insite and opinion and explaining that sometimes it is more than just the valve that is the problem or causes re-surgeries, especially for the young (read kids) valve recipients.

 

[Karlynn]

Coumadin touches every single part of your life. Everything from the dog sleeping in the flower bed to how many times you had sex last week.

I know Ryan would never adapt to the ?rocking chair? lifestyle it takes to be a good coumadin taker.

Gosh, if I had know that the number of times you have sex in a week affects your life on Coumadin, I would have given up the headache excuse 13 years ago! This is a much better and creative excuse. I have to say that I don't understand how this affects your INR to the point of having to worry about the number of times you have sex. Everything we do affects our INR, just as everything we do affects our bodies in many ways. I'm not getting the "dog in the flower bed" either. I'm always chasing my 120 pound dog out of my garden, but I can't say I've noticed it affecting my INR. It's trashed my zucchini plant, but not my INR. I just walked across the room this morning and kicked my laptop computer that was on the floor hidden by all the music books I'd been working on. Now I have a nice sore toe turning pretty colors. And I couldn't care less, other than the fact that it will probably hurt when I go work out this afternoon, but Coumadin, or no Coumadin, it would hurt.

Rain, you are a treasure and we know you really hate being on Coumadin and I feel badly that it makes you so unhappy. But I'm just not buying the "rocking chair" scenario for one minute. We have so many people on Coumadin here that do not lead rocking chair lives, yet don't have these daily concerns that you do. All people need to do is read the Active Lifestyle forum and they'll get an idea of how inhibiting Coumadin isn't. I feel that if I were to let Coumadin affect my life in such detailed ways, I would be missing out on the gift of life that my valve has given me. Life is to be lived to the fullest. Pedal to the metal.

 

[cocoalab]

Rain I need to say I agree with you on some points but dissagree on others. As far as bruising Andrew hardly ever had a bad bruise and he played some sports and was notorius for running into things hard- like door jams. I think the coumadin does affect bruising of course but some people just bruise easier than others. Andrew's brother Nathan does and my mother did. I don;t know the mechanics of why that is but I have seen it enough to know that is true. You may bruise worse than you use to but not everyone on coumadin does. Andrew was not always in range either try as we did.

I do agree that Coumadin is a volatile medicine that is affected by air quality (just kidding) but it does seem to be affected by a lot of drugs, activities, ect.

I don't know why school and others are so discrimatory about people participating (well I guess i do-lawsuits) but When you are young it does play into what you are allowed to do. If only by being honest and letting them know your health condition. We let Andrew ride roller coasters and never had aproblem but you know if they knew he had a heart problem and was on coumadin they probably wouldn't let him on. Is that right? No but it is the world we live in.

I hope you and your son make the right decision for him whatever way that is. I honestly wouldn't want to be the one to tell you which way to go.

 

[bvdr]

Well, I finally read this thread. I couldn't believe a thread had been going on so long and heated without me ever chiming in. Ross, sorry to leave you out there dangling in the wind.

The way I see it, these discussions get so heated because it is one of the areas in which we have a little control. We had no say in getting valve disease and, if we want to live, whether or not we go ahead with surgery. But, suddenly we are presented with VALVE CHOICE. Hmmmmmmmmm, do we want envelope number one or envelope number two? And then we find out that inside these envelopes are all these other little envelopes that need to be picked. As far as function, they all are known to work pretty darn well.

Some things make the choice easy. If you are in atrial fib and on coumadin already and no great expectation that it will change then mechanical is pretty much the logical choice. If you already have one mechanical valve then if a second valve needs replacing then mechanical again only makes sense. If you are seventy and have other serious medical problems then given the longevity/serviceability of a tissue valve may be more than adequate for you. The same tissue valve if implanted in an older person will last longer than in a younger person since the calcification process slows down (along with most other things ) the older you get.

I was 55 and on coumadin for atrial fib so the choice was easy for me. I expect my SJM mitral valve to be functioning for the rest of my life. I don't know how the tissue holding that valve will be holding out but I have no control over that.

If I was Ross, I wouldn't want to go near the OR again! I don't even want to go near it again and what I went through was minor compared to his ordeal.
I'm hoping my other problem valves will limp along just fine until I leave this world.

I am very pleased to be the recipient of a mechanical valve and don't view it as some awful thing at all.

 

[twinmaker]

As a long time Coumadin user (24 years), I really feel the need to defend myself about the "rocking chair" lifestyle. I have had one very bad experience with Coumadin (internal bleeding that almost cost me my life) but that was back in 1983 and obviously my pro-time (they didn't use INR at that time) was being mismanaged, had an ovarian cyst that ruptured at the time and since I had only been on Coumadin for a short time, I was pretty green about it. But except for the fact that I'm a fast metabolizer (which means I have to test more often), I have never sat in the rocking chair worried about what I could or couldn't do. I've been too busy "LIVING". I don't think about what I eat...I just don't change my eating habits wildly. I ride my bike (using my helmet...but everyone should do that), swim, play tennis, travel, have sex...OFTEN---if you don't use it, you lose it, ski (yes, snow ski), and on and on. As a matter of fact, I fell the other day. I slipped on a steep incline (blacktop) and hit my right knee and foot. I have a small bruise and it's sore but my INR three days before the fall was 3.2...and I didn't get black and blue. I know things may be different when you have a teenager who wants to play football and things like that but that's when you sit down and look at the pros and cons and make your decision. Believe me%, I'm not minimizing those decisions. I guess I've been on Coumadin for such a long time that it's just become a way of life for me. I'm tickled pink right now that I've been able to home-test my INR. I got my machine a few weeks ago and I'm so proud of it! But even when I've had to go to the lab once a week to get my blood drawn, it wasn't the end of the world. I'm just glad to be alive!!! Sorry if this sounded like preaching but after 24 years, Coumadin is my friend.

 

[Karlynn]

I have had one very bad experience with Coumadin (internal bleeding that almost cost me my life) but that was back in 1983 and obviously my pro-time (they didn't use INR at that time) was being mismanaged,

I don't know your specifics but it's possible that it might not have even been mismanaged. We know from Al, that warfarin science was pretty much a bunch of educated guessing until the last 10 or so years. I've had my valve long enough to remember the old Protime numbers. I remember asking "What's this INR number?" when they started giving me those too, along with the protime.

Much like your experience, we've also learned from Al that many of the horror stories we hear about Coumadin, come from the time that not a lot was known yet about the management of the drug. And some of the long term studies we see also still have the Dark Ages numbers worked into them.

We're home testing now!!!! We've come a long way baby!

I love your story. It really gives me lots of optimism for my future.

 

[nia]

Thank you Lyn and Rain for your perspectives. I had MVR in the middle of my junior year in college (one more semester to go!!!) and received tissue (bovine). I didn?t choose the valve myself; the brain hemorrhage I had prior to the surgery made it impossible for me to be on anticoagulation therapy after surgery, so mechanical valve was out of the question. I used to think that not having a choice was bad, but now I?m thinking?maybe it was a good thing I never had to agonize over this?

I am happy with this valve for 2 major reasons.
1) It doesn?t complicate pregnancy as badly as if I was on Coumadin. I know that pregnancy with Coumadin is possible. However, I?m glad that I wasn?t forced into a situation that would make pregnancy a major risk for me and the baby.

2) I am also glad that I don?t have to manage Coumadin while in college and soon after graduation when I'll need to adjust to the ?real world?. I am not a reckless person, and I?m responsible, but I attend a very competitive school and sometimes just have to put academics before everything else in order to do well. It?s likely that I?d just forget to take the medicine when I crash after pulling an all-nighter (probably didn?t take the pill while pulling the all-nighter either) or when trying to wash away the memory of a failed exam with alcohol (this was NOT a smart thing to do?) Also, there isn?t much variety in the food that college campus offers, so even though I try to cook as often as possible, it would?ve been hard for me to eat healthy while keeping the INR in range. Living away from home for the first time can make the kid do all sorts of wacky stuff that parents don?t need to know about; if I had to be on Coumadin after MVR, my parents might have seriously pulled me out of college (they were thinking about it even with the tissue valve, trying to convince me to transfer to a school near home). I realize that there are many college students who have to take daily medications, but I?d like to avoid that if possible.

As for the life span of the valve, my surgeon told me that he?d hope the valve would get me through the childbearing age, and even though the reason he chose to give me bovine over porcine was the availability of published data about the 15-year life span, he also told me that young people, especially young women like myself (21 at the time; I?m 23 now), tend to wear out the valve much faster, so it?d be more like 7-10 years, so I?m not really counting on it lasting 15 years. Then he added, ?But, I hope that it?ll last in you for a looong time.? I hope to prove him right. Meanwhile, my active search for a boyfriend continues?

 

[Rain]

Have you considered this may be why they are leaving??

Have you considered this may be why they are leaving??

Karlyn... Yes, I do hate being on coumadin. But it certainly is not something I dwell on. I call the consistent, consistent, consistent life style ?rocking chair?. I don?t mean it in a bad way. The more consistent you are about EVERYTHING ... the less problems you will have with your INR.

Nia, Congratulations on getting through college. My Ryan takes Atenolol. At one point, while in college... he decided the atenolol slowed him down... so he stopped taking it during finals week.... BAD IDEA!!

 

[Karlynn]

Then he added, ?But, I hope that it?ll last in you for a looong time.? I hope to prove him right. Meanwhile, my active search for a boyfriend continues?

You go girl! We just love having record holders here - the good kind of records that is!

Good luck with the boyfriend search. I'll send any good prospects your way.

 

[Nancy]

Come on everyone, step up to the plate and vote on my little poll over on the Anti-Coagulation forum.

Let's see where Coumadin REALLY stands in everyone's life. The poll is anonymous unless you post a comment.

I see we already have at least one comedian in the poll.

 

[MarkU]

Children - Go to your rooms and don't come out until you can play nice!

 

[Granbonny]

My age 13 year old Grandson

My age 13 year old Grandson

Loves to read VR.com when he is here... He crawled into my hospital bed at day 2 Post-Op to read me a book.. he brought to hospital.. I Celebrate You Grandmother.(Anyone wanting more info can P.M. me..}It stays on my coffee table and NO one is allowed to touch it. It brought me back to life...Quickly..I got up and started walking those halls.. Because I knew he wanted me to get well.( Age 10 at the time)..Ann (Henyslee)spent a day with us last summer..and she can vouch what a wonderful little fellow he is...But, after the last few posts on this thread..Am afraid to let him come back to computer and read the vile language..He would NEVER understand..how people like his Granbonny could argue like this.. So, what to do?..Tell him he cannot read VR.Com any more after 3 years?..Sad..Bonnie

 

[bvdr]

Has anyone gone tissue for the first valve selection and then got mechanical for there second surgery.
I would also like to know if the mechanical valve adapts well to the heart after having used a tissue valve.

I'm 38 and i'm planning on going tissue and then at some point in my early 50's going mechanical , i'm still undecided because i could go mechanical hoping that it would last me a life time or possibly having resurgery at some point in my 70's. Any thoghts or opinions.

thx

Mechanical and tissue valves both work very well. Many go mechanical the second time around. A mechanical might prevent a second surgery in your lifetime but again no guarantees. Most of us have an opinion about this and most of us are happy with the valve we ended up with.

Sorry we got off track on what you were asking about.

 

[Hank]

Wow - What a Great Thread!

Wow - What a Great Thread!

Hi members,

I have just personally gone through this thread and deleted all posts that I felt did not center on the original thread starters best interests.

All changes were my decision and mine alone.

Please see your email for a refresher on the rules of the forums.

 

[RCB]

Playing Soloman

Playing Soloman

Great Job, Hank!

I can tell you put in a lot of work.

One little thing though, I thought I never looked more attractive than in Janie's picture of me-sorry to see that go. ......

Hi members,

I have just personally gone through this thread and deleted all posts that I felt did not center on the original thread starters best interests.

All changes were my decision and mine alone.

Please see your email for a refresher on the rules of the forums.

 

[hensylee]

well, goodness, I seem to have missed whatever happened here. Maybe a good thing for me? Since I am inadequate in knowledge of valves, I didn't read this one with much vigilence plus I have been offline for a few days because of out of state guests.

I have gleaned from valve threads that it can be a sticky wicket and everybody has another opinion. Glad to see the 'father of VR' has come to the rescue yet again. As long as my buddy, Ross, is ok, I am happy.