Is it just me.....

[LUVMyBirman]

I would like to quote Johnny here, and BTW, Your post said it all.Could'nt have said it better.

" When I hear people say "Coumadin is no big deal," I just about go ballistic. Coumadin is a HUGE deal. My son had a major bleeding catastrophe while on Coumadin even though he had been religious about his dose and getting checked."

Johnny and everyone else.. Did have a major bleed after my MVR'. So bad that all of my vital organs were hemorrhaging. Was read my last rights and fully transfused with frozen packed cells. Funny part, I was under close supervision after my MVR and my INR still was out of control.

Took me a very very long time to get over that. Do I let it run my life today? Nope. I am my best advocate when it comes to the Coumadin. Home test and self regulate with the blessings of all of my doctors. Guess what,? I actually have a real life now and do a better job of regulation than they ever did! They had my INR flying all over the place by changing the dose consistently. Even if it was still within range, but 'just about to sway'.

I think when people say they Coumadin is not a 'big deal'. They mean it can easily be managed. Catastrophic events, sure they happen. But are rare. If you want to get technical, any one of us undergoing OHS could have an irreversible event. Time and time again we talk about personal preference here. Valve selection is personal. We should not be putting each other down for that choice, opinion or medication we have to take on a daily basis to keep us alive! I will say it again, some of us DID NOT have a choice.

As for new members coming here for information. How many of you actually would take the advice for valve selection from some unknown on the Internet? Come on. Let's get real.

Honestly, as I read the start of this thread, the intention that Hank put forth for this group, was not there. Competition? Yeah ok, LOL. Very appalled and seriously considering not reading into this forum any further. My life is to a point where I don't want to think about these issues day after day. When I come here and read crap like this it is very upsetting.

Coumadin is a way of life for the majority of us here. Like Johnny said. 'Can't do a damn thing about it'.


Have a nice weekend.

 

[fdegranville]

Competiton?

Competiton?

Hello,
Bottom line is: We DO NOT come here primarily to get medical information. We can get that on a number of various and very good websites dealing with valve disease. We come here to get what we CANNOT get from text books, websites, our friends and family and I hesitate to say, our doctors. Here we get understanding, a place to vent and support each other. The medical situations are never black and white for anyone, each is different. The variables are just that, for each and every one of us, and as Gina said, we would not base our final decision on what a member decided for their own situation. As a long time member here I've never seen what has been called a 'competition' between bio or mechanical supporters. All we look for is a positive outcome, no matter what the procedure and help from each other along the way and after.

Gina, your contribution and experience have always been appreciated and I know we would all miss you if you decided you could not participate any longer.

fdeg

 

[ILoVeNY25]

I've been following this thread and I believe there is no competition. As many of you said, We come and share our personal experiences with new members and I don't think we sway them either way of their personal choice. Yes, There's advantages and disadvantages to every choice. The people who actually have that choice are very lucky. I'm 19 years old and you know what I never had that choice, I had to have 3 valves replaced/repaired and I have to say I agree with Johnny, I can't do a damn thing about it. Yeah, I have to have that "reminder" of taking coumadin everyday because I'm still a heart patient. But you know what everytime I look in the mirror and see a 7 inch scar, That's a reminder. I never had the choice of being on coumadin or not and I deal with it. I may never be able to have children and that's a reminder everyday and every second of my life, So to say there is competition...I think that's ridiculous. I applaud all of you for speaking your mind and I hope no one will think before they speak to a newcomer, Everyone should continue to welcome the newcomers how they always have with support and personal experience.

 

[Christina]

To Gina & Johnnie Cochran...

To Gina & Johnnie Cochran...

You were absolutely right by saying that Coumadin can be a big deal and should not be taken lightly.
That it should be closely managed, and professionally monitered.
I was wrong in saying that Coumadin isn't a big deal. I should have said that it isn't a big deal "for me" anymore since I took control of my own testing.
I APOLOGIZE!
I edited my previous post so newcomers will see what I should have posted in the first place, and not imply that Coumadin is no biggy.
Gina, I agree whole heartedly with you. Coumadin can be easily managed, but catastrophic events do happen eventhough the dose is managed from week to week. Mistakes do happen!
I also am my best advocate when it comes to Coumadin.
Home test and self regulate with the blessing of my doctor. My life is much better since I got rid of that one doctor and do a better job of regulation than he ever did! He had my INR all over the place by changing the dose all the time, and than yelling at me because the INR was either too high or too low.
I hope we all can get passed this issue and not spend unnecessary energy on topics like the above.

Wishing you all blessed health!

Christina
Aortic Stenosis
AVR's 8/7/00 & 8/18/00
Tucson Medical Center, Tucson, AZ
Mechanical
Dr. Gulshan Sethi

 

[JimL]

I too enjoy the give and take on this site, and the occasional strong emotions expressed. If any of my words ever seem competitive, chalk it up to pumpheadedness. I still say extremely dumb things without realizing it until (sometimes much) later.
In my innocence and short-time experience with rat poison (9 months), which does indeed seem to me to be no big deal, I have wondered if those contemplating surgery couldn't do a trial run with coumadin, perhaps taking a low dosage for a few weeks and getting tested, just to get an idea what's involved. I'm sure there's a whole list of better reasons why this woudn't work.

 

[Kevin M]

I cannot say that I have ever witnessed any instance of mech. vs. tissue competition - real or underlying.

Aside from the recent marijuana debate, I recall no instance of anyone pushing their views on others and that is what I love the most about this group of people.

Everyone's opinion is respected and everyone shows a sincere caring and love for their fellow person who is in need.

All of us who were fortunate enough to have a choice as to whether we got a mechanical or tissue valve agonize over the decision. When I went through it, I finally came to the conclusion that in my situation I could not have gone wrong either way.

The bottom line is that we all enjoy a fantastic quality of life considering our health problems and for that I think most of us are most grateful.

Yes, some of us have our preferences. The risk of subsequent surgeries to replace tissue is not preferable for some there are those of us who are afraid of coumadin and how it may alter our lifestyle.

The only thing that really matters is that Hank was smart enough to see the need for this forum and there just happen to be hundreds of people who go out of their way to help their fellow 'valver'.

As usual, I guess I've gone off on a bit of a tangent, but I will finish by saying that I have always been amazed at the lack of aggression in this forum. Most forums have a few oddballs who try to coherce people to their way of thinking and go all snakey when they don't get their way. There is none of that here.

I've never 'met' such a warm and helpful group of people.
Kev

 

[Gnusgal]

Choices

Choices

I just got my tricuspid valve replaced two months ago. I was not given a choice. Yes, I knew the differences between tissue and mechanical vavle, and really didn't want to be put on coumadin (mostly because it means I'll never have my own children). But when I went in to talk to the surgeon I was TOLD I would get a mechanical valve, not asked. Yet, I have a friend who had her pulminary valve replaced by the same surgeon and was told he "preferred porcine valves." I don't know what the difference was between us, except which valve was being replaced. Perhaps that had something to do with it, or maybe it is that she and I have different complex heart defects compounding the issues. I don't know that I'll ever know...

In the time I've been on it coumadin has been very difficult to regulate for me and I've had to have my blood drawn twice a week for the last nine weeks. It now means that my pacemaker replacement surgeries will no longer be able to be outpatient because of being taken off of and put back onto the coumadin. Even simple cath procedures will become bigger ordeals. If I had been given the choice there is no way I'd have a mechanical valve, but I wasn't given a choice. Is it frustrating-- Heck yes. But I'll deal with it, just like I've dealt with having heart problems my entire life.

 

[Rain]

Mara, girlfriend... are you trippin??

Mara, girlfriend... are you trippin??

Mara,

There are a lot of reasons we choose the valves we do. When people come here and ask about different valves, coumadin or whatever, we all speak from out own experiences. I?d think someone looking at valve replacement would be interested in how each of us are living and adjusting to life with our new valves, coumadin, etc. Thank goodness, most of us seem happy with our decisions.

Not to sound rude.... but I think its just as bad to tell someone that coumadin is a terrible monster as it is to tell them its no big deal. Especially when you don?t take it. I mean that in the nicest of ways, Mara. lol I hate to fight and argue. Believe me if I can adjust to coumadin anyone can.

Like a lot of new people coming here... my 19 year old son will need surgery at some point in time. I am very interested in knowing how different people are getting along with different valves, etc. I cannot tell you what valve I would want for him....... It depends on so many different things. His life style, his heart problems, etc. It?s not a black and white issue. And most importantly not one anyone can make for him... Not even me. But we can tell others about our own decisions.

Anyway..... Thank goodness we have choices. Thank goodness we have each other to thrash it all about... and hopefully help people like my Ryan make the right decision for themselves when that time comes for them. I would certainly want you to tell my Ry in a very honest and upfront manner about your valves.

Rain

 

[McCln]

Mara

Mara

I agree with the others, there is nor compitetion. It is just what each person brings in their experience to this table. I had to make a decision, which took a lot of thought and consideration. I was refered to this board after I made the decision to stick with the mechanical valve. The choice was to have surgery again in twenty or more years with the mechanical valve, or have surgery in 5 or ten years with the tissue valve. I went with the mechanical valve, since I am single, no children, noone in my life yet, and not really ready to have surgery again too soon. But we all have choices to make and I point out that one needs to be educated in what options are out there. I never point out that the choice I made is for everyone. So you have a choice and here you can get educated by experienced people. You are a good person and everyone had to say something. You take care and keep haging in there. I have my one year coming up soon and plan to praise God for me still being here on this Earth to help others. Be good now.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[sylviayasgur]

can i just say that, although i am not the patient here, i am so proud to be part of this group/family.
you are all amazing people with different views and opinions and as someone before me mentioned, that is why we come here.... to get different perspectives on valves. it is what got me through and what helps other newbies as well. most of us land here right before this frightening surgery and need some guidance, direction, and support (especially those who are fortunate to have the choice).
you are all incredibly wise and giving in so many ways.
mara-
i know why joey chose the rp and why he particularly wanted to avoid coumadin. however, he had this scare back at his 6 month mark when they thought his valve was leaking severely. with the prospect of a possible re-surgery, it was surprising to me to hear him say that if he had known this could happen, he would have opted for a mechanical even with the coumadin.
i think this whole decision is such a very, very personal thing. what may work for one, may not for another. my dad has a st.jude's and does just fine.
i see both sides of the coin on a regular basis and am thrilled that there are options out there.
how fortunate for all of us/you.
thank you all for all you give.
-sylvia

 

[Granbonny]

Confused?

Confused?

Im beginning to get a little confused? I have been posting for almost 5 months and have never seen a thread where someone had a side effect from taking coumadin. If there is a thread..would someone put me on it. I'm not talking about having surgery, teeth cleaned, ect. I'm talking about feeling bad..as nausau, weakness, ect...I would love for Al to respond to side effects..Also, Caroline, you mentioned having a mechanical replaced in 20+years...I thought that is why my surgeon told my family to go with the mechanical..I would be too old to have replacement surgery with anything else....I don't want to offend anyone but the only bad thing about my taking coumadin is to REMEMBER to take it..around 6 P.M. everything evening..Try to think of it as a birth control pill and my gums bleeding when I brush my teeth (any suggestions on that..rinsing with salt water, ect. )...I'm blaming coumadin on my weight gain to hubby I guess this will be a never-ending question from Newbees..which valve to go with..Don't ask me..I'm TOO old Bonnie

 

[Tammy]

Hmmmm....

Hmmmm....

I couldn't tell you what kind of valves most at this site have nor do I think about it. What we all have is valve replacements and that is our common bond.

Would you prefer Lethal Injection or Electrocution? The outcome is the same. Death.

Would you prefer mechanical or tissue? The outcome is the same. Life.

It is a personal choice and we all speak with passion about our personal journey.

If you go with the Tissue Valve you don't have to take Coumadin but you have to face surgery sooner.
If you go with the Mechanical you have to take Coumadin but may not face another surgery, at least for a long time.

The Risks are Real when taking Coumadin and the Risks are Real when you have to face a second or third surgery. You are the only one that can choose. For me - Surgery scares me more than coumadin, we each are individual in our choice. My 13 years on coumadin hasn't been as traumatic as surgery was. The Physical and Mental tow of surgery is different for everyone.

In Competetion there has to be a winner - and we are all winners here.

Just my two cents.

Love to all,

Tammy
MVR 04/06/89
Aortic Stenosis

 

[Mara]

So, is the real story that Coumadin is the Great Divide?

No valve replacement is a panacea. We make individual choices based on what we know at the time, even having no choice is a choice. Some of us were able to sit back and reflect on all the different options, others had no time and had to decide immediately, or were given only one option.

I stand by my belief that Coumadin is a big deal and is a dangerous drug. That's why you need a prescription and you don't just go out and nibble on some rat poison pellets. I hated being on Lanoxin because digitalis is a dangerous drug. I would never have told anyone otherwise and I had to have a digitalis level taken several times a year. I didn't just go out and chew some foxglove leaves. Drugs, in any form, are not a joke. I am all for better living through chemistry, but can't say that I would ever believe that a lifetime on any drug is no big deal.

As a sign of peace amongst the mechanicals and the tissues I offer this: Let's rejoice in our differences, because as Tammy said, in the end we are all the same.

Mara

 

[John Cochran]

Dave's request for posting of age

Dave's request for posting of age

Dave,
I will tell you flat out my age: 8 (in dog years); it is up to you to figure out the breed.

Why is this a pet peeve of yours (not knowing how old everyone is)? There are people I suspect are "seniors" here who think young, are dynamic and open-minded. Some who are perhaps younger sometimes display wisdom and compassion of someone twice their age. While folks here often share intimate details about their surgeries and experiences surrounding them, that doesn't mean that others are entitled to any additional private information about them, no matter how curious they may be.

As to the idea of relating anything to age, if you hadn't noticed, we have people who need this surgery at all ages.

If people wanted to share their ages, they would have posted them originally; many believe that their age is simply not relevant to the purposes of this forum.

--John

 

[Billy]

Re the 'age old' question of AGE

Re the 'age old' question of AGE

If everyone had an up to date 'avatar' we could surely make a pretty accurate guess.

Congratulations Sylvia on posting your avatar. My 'mental picture' and your avatar bore no comparison..........what a pleasant surprise.

 

[Hank]

Coumadin in the AM or PM

Coumadin in the AM or PM

The reason that they say to take your coumadin in the evening, is because if you were ever required to make a dosing change after a test or something, you could stll make it that day.

It really doesn't matter. I just take mione at night because thats when I take my other meds (unisom and vitamins).

Personal preference is the best reason I think.

 

[sscholz]

Bio vs. Mechanical... Doesn't matter, I have had both, and they have their appeal. Currently running a St Judes AVR, with a Mitral Ring. Had Porcine valve before. They installed them they worked to a normal degree, they are replaceable parts. Some people like to get caught up in semantics and words, and read what is implied, and at the same time gloat about their own procedures.
i.e. one overthruster insalled 04/02/01. (Just a joke). It's all fine.

Coumidan is fine for me, but I can complain about it with most any other "Users". And it is lethal for Rats. Probly people also.

Sam

 

[Blanche]

In the days when protests were the norm, radicals abounded, and police stormed college campuses, I went to hear self-proclaimed radical Saul Alinsky speak. During the question period following his talk, his assistant recognized a person to speak by saying, "Yes Sir, or is that Mam?" The person being recognized responded by saying, "What difference does that make unless you want to date me?" Well, the person didn't exactly say "date."
History may not repeat itself, but it sure does rhyme.

 

[John Cochran]

I really like sscholz's avatar! Looks like he/she is the only one here entitled to a PET peeve! From it, I can tell roughly the age, and I'm really surprised by his/her likeness to Nikita Kruschev! All useful information in learning about valve replacement surgery! Oh, would you mind posting your height and weight, religious preference, and social security number? Also, I'd like to know if you are keeping your rabies shots and heartworm meds up-to-date.
--John

 

[Gail in Ca]

I feel the need to let those of you that call coumadin rat poison know that it really bothers me when you do this. It is not funny. We must take it for the health of our valve. There is nothing else.
Had to get that off my chest...
Gail