PMs Vs open forum discussions

[Guest]

*frowns*

Hey Rich ... you've met me, remember? And, I hope to be in Michigan again this coming August ... so, hopefully we'll meet up again....


*pauses*

*sighs*

Holy crap (not the word to use) what a thread.....

Some of us don't have a choice, ya know. What do you do with us? Make us buy fake MCs?



Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"You've made a fool of everyone" ... Jet ... 'Look What You've Done'

 

[mntbiker]

I might as well chime in here. I think this issue is at the level of beating a dead horse.

There are two different issues being discussed here. First is the PM verse Forum debate. PM?s have their place. They are a good way to share information you don?t want the world to see. The idea of having everything posted on the forum so it can be peer reviewed is a wonderful idea but let?s face it, none of us (well almost none of us) are or claim to be medical experts so everyone here should be consulting a doctor. This is a great resource as well as a wonderful place for emotional support when needed. This is why I came here and stay here. This site has made me more aware of my condition filled in the gaps for questions I forgot to ask the doctor and has made dealing with this issue easier. I have received my fair share of nasty PM?s and even left the site for a while because of them. But the people that are nasty are the minority, most everyone is very supportive. I did delete one post because another member misunderstood it and thought I was slamming coumadin which I was not but I deleted my post to keep the topic on track. Others should execute similar judgment. Yes I believe a valid point that should have been made was lost but it?s better to keep the topic on target to benefit others.

Second is the valve issue. We are here because we had a defective OEM installed piece of equipment and we are now faced with replacing it with an aftermarket item. Everyone knows the aftermarket products are not as good as the proper OEM products so no matter what decision we make about which one to install it will never be the right one. I think we should start a class action law suit against the manufacturer of our valves to force him to reinstall new valves. Seriously though, choosing a valve is the hardest decision a person in our position can make. There is no right or wrong and I for one like hearing the longevity stories such as 14 years for Karlynn. I also want to hear the horror stories. Why? It is all information we need to have. In the end the decision is really between the doctor and the patient. I will not make my final decision until I have had an in depth conversation with the doctor, his is the opinion that really matters.

 

[Karlynn]

Second is the valve issue. We are here because we had a defective OEM installed piece of equipment and we are now faced with replacing it with an aftermarket item. Everyone knows the aftermarket products are not as good as the proper OEM products so no matter what decision we make about which one to install it will never be the right one. I think we should start a class action law suit against the manufacturer of our valves to force him to reinstall new valves.

Thanks for a really good laugh this morning!

 

[Rich]

Cort,
Of course I havn't forgotten, hopefully I will be able to meet up with again this year.
Your'e right, a lot of us including me wern't given a choice.
And by the way don't worry about those fake MC's, GM has that one down pat.

Rich

 

[Granbonny]

My 4th year having a mechanical will be soon..My heroes..are other active members who have had a mechanical valve LONGER than me. RCB, Rich, Geebee, Nancy's Joe, and....Hank, Rain, Janie , Sherry, Gina who attend the annual reunions. ...who do not worry about their being on coumadin, ect...Just out there having fun. .......And I am sure, that others watch for active members who post....who have had tissues, Ross, ect......longer than them.....Just makes one feel better.. and don't want to leave out the Members who were lucky and had repairs. And NOT to leave out Ann (hensylee)who just had a by-pass.. but one of the top posters on VR.Com.... ....What a GREAT site... Bonnie

 

[Turkey Hunter]

As one who has a ?ring around my toilet valve? I have usually stayed above the fray when the discussion of valve choices has erupted. I went to sleep January 21, 2005 expecting to wake up ?clicking and ticking? for the rest of whatever life the good Lord has planned for me. Expect my surprise (and my wife?s too) when I found out I was ?repaired?. Dr. McGiffin did not put ?repair? on the table and STRONGLY recommended mechanical based on the ?condition my condition was in?.

I have GULPED a few times when reading about a ?repair? suddenly going bad (such as blessed and a few others) and I think if Dr. McGiffin had woke me up on the table to ask me I would have told him to only make ONE trip in (HOPE, HOPE) and PUT IN THAT MECHANICAL NOW; but I wasn?t given that choice. I was on coumadin for only 4 or 5 weeks but based on what I had read here I accepted it as part of my life, however temporary it wound up being.

So I don?t know what the good Lord has in store for me in the future. Will it last? Will I have to go under the knife again? Will I try to beat Gina?s record? Will Mary kill me in Florida???? But with the help of all the family here I know I will not have to face it alone. As one of the fortunate ones to come through the surgery in relatively good condition when compared to some of the experiences I already feel very blessed. One thing for certain, if it hadn?t been for my heart problems I probably would not have wound up here. That would have been very unfortunate for Y?ALL. To not experience the wit and wisdom of Mr. ZERO (aka, gadget man, Danny, Danny Boy, Bubba, Hey You---) would have been a tremendous loss for all of you.

Now lets get out there and give that advice. It might be wrong but it is FREE (for the most part).

May God Bless,

Danny

Well stated !!

Ben

 

[Kate]

Karlynn,
I agree that one of the reasons people continue to be interested in valve choice after surgery is that they hope to convince themselves that they made the right choice. However, I like to think the primary motivation is a more charitable one - concern to ensure that each new visitor has complete and accurate information with which to make their own choice.

As one of the tissue valve people who has sometimes felt the facts weren't presented in a balanced manner, I have found this thread helpful. I think it has helped me to better understand how comments that I think of as simply factual about Coumadin could be perceived as negative in the same way that I sometimes hear comments about tissue valves as negative. So, while I'm very sorry that some of the posts (especially early on) were harshly worded and that feelings may have been hurt, overall I think this is a good conversation for us to have. Perhaps it will help us to all understand and accept each other. Kate

 

[Debster]

My mom was so sick before surgery they could have put in a half mechanical half tissue hippopottamus valve and if that would have helped her I would be all for it!!! Love this site! Deb

 

[Karlynn]

My mom was so sick before surgery they could have put in a half mechanical half tissue hippopottamus valve and if that would have helped her I would be all for it!!! Love this site! Deb

That would have made for a very interesting "getting to know you" opening line for her. "Did you know I'm part hippopotamus?"

And you have a great point. I was very sick as well. I had been begging for surgery for about a year and cried with happiness when they finally gave me the green light for it. I remember saying at the time "I don't care if they put a zipper in my chest, I just want to be well."

Being well was my first priority - and how I got there was a formality to me. I am glad however, that my cardio guided me in the direction he thought would be best for me and my young family. And he was right.

 

[Guest]

*grins*

Rich ... glad you remember ... he he he! I had a lovely time that night with you and JimL ... but that's been "too long" ago, imho. Ssssooo....let's keep in touch and hopefully get something scheduled for this August .

I'm glad I'm not the only one that didn't have a choice, per se. I just find it sad that those of us with virtually no choice gets to stand back and watch people that did have a choice "bicker" about having the choice.

*shrugs*

As for Chevrolet ... yes, sadly they do, and the buying public doesn't even know that "dirty little secret" . he he he

 

[Mb]

Hello:

This summer, it will be five years that I have been reading the posts on this site daily.

When I first found the site, it was as though God led me here. The help each of the people gave me during those difficult months I will never forget. At that time, my husband was Stage 4 CHF, and waiting for his surgeon to set the date. He was a very, very sick man. He needed two valves, mitral and aortic, and was in chronic a-fib. Needless to say, there was no choice in the type of valve....it had to be mechanicals.

Unlike many people on this site, he did not "bounce" right back.

I could not count the times I have researched here, on an issue he was having. From a TIA, small stroke, leg weakness, blood in his urine, antibiotics, hypertension, tricuspid valve issues, atrial fib, pulmonary embolism.....the list is endless.

You all have provided me with a wealth of information.

I have known when to worry...........and when not to worry.

I have known when to take him ASAP to the ER, and when to call the Dr.

You have given me peace of mind.

I have never entered any of the "discussions", as I find them contrary to the site's purpose. Now, I only occassionally post, but I read the posts daily.

So, from the bottom of my heart, thank you to all of you who have posted information and personal expereinces on this site.

Even five years later, I am learning from you.

Thank you,


Marybeth

 

[Glenda]

I have stayed silent long enough.

MaryBeth, I so agree with you. I am so glad that I found this site before I had my AVR a year and half ago. The people on this forum are wonderful, supportive and informative inidviduals. You can sense a lot of their personality from their posts.

I, like Bonnie don't feel like I offer much to the forum although I have been through a lot of medical problems over the last six years, dealing with three types of cancer and heart related problems. I can only tell you what has worked for me. I am a very spiritual person and sincerely believe that God has a master plan for my life. God is capable of solving my problems when I can't.

As far as what kind of valve to use. I didn't have a choice. I have CML and take a very strong chemo/cancer drug called "Gleevec" and it would not have mixed with coumadin at all. So, I have a pig's valve and will probably have to have it replaced in 10-15 years, but for now it's working very well and I'm very pleased. I was so sick before I had the replacement that it didn't matter what kind of valve they used. I just wanted to feel better. The cardio did say that I wouldn't have lasted two more weeks if I hadn't have had the surgery when I did. Health becomes so precious when we no longer have it.

So to each his own. We all have all different choices to make throughout life, sometimes it's a good choice and sometimes it's not, but it is our individual choice. I find that attitude is also so important. The attitude I chose either keeps me on a positive path or hinders my progress. Our attitude is up to us.

Thank all of you for your continued help, for your words of wisdom, your love and prayers. It's amazing!

 

[Mary]

Glenda,

You wrote in your post, "I, like Bonnie don't feel like I offer much to the forum although I have been through a lot of medical problems over the last six years, dealing with three types of cancer and heart related problems. I can only tell you what has worked for me. I am a very spiritual person and sincerely believe that God has a master plan for my life. God is capable of solving my problems when I can't."

Glenda, I beg to strongly disagree with "I. . . don't feel like I offer much to the forum. . ."

You offer a glimpse of what a true hero is just by your very presence on the Forum. You are a model of a person who lives the Golden Rule, day in and day out. Thank you for being here with us.
Mary

 

[Karlynn]

Glenda, I beg to strongly disagree with "I. . . don't feel like I offer much to the forum. . ."

You offer a glimpse of what a true hero is just by your very presence on the Forum. You are a model of a person who lives the Golden Rule, day in and day out. Thank you for being here with us.
Mary

And I'll say "amen" to that.

 

[Gemma]

We all have very personal feelings on the best choice to make. But all we can do is describe our experiences!! Frankly, that is all we should do. We should never read into anything and add comments that can offend. We should simply be sure our own comments were understood, without degrading or belittling anyone.

I totally agree!

That's the real strength of VR.com - the wealth of real-life experience we all have to share. And it's that sharing which helps make something terrifying a little bit less scary.

I do think that factual stuff is best discussed in the forums, but there are times when a PM is the best way to tell someone you're thinking of them and share a nugget of pertinent information with them.

I was really hoping this thread would've been deleted by now, but it seems to have got a bit friendlier as time's gone on. I just hope no "newbies" come in and get scared off by the opening page or 2 of posts. I don't know where I'd have been in 2003 without all the great advice from Ross, Dave, Karlynn, Nancy, Ann, Betty, Bonnie and the other members who welcomed me and Jim with open cyber-arms back then and it would be a real tragedy if arguments such as these stopped us from helping other people in the same boat.

Glad we're still a big happy family!

Gemma.

 

[geebee]

Gemma,

I agree that this thread has turned into a very helpful one. I think it is just like a family discussion. Sometimes the best decisions are made after an airing of disagreements. Everything is out on the table and things improve from there.

 

[Nancy]

You know, no one ever talks about the anger at just having to cope with a bad heart and valve surgery. I think there is a lot of pent up emotions with being in a position of compromised health.

Maybe some of what we find in these threads is an element of that disguised anger.

Let's face it, having to have valve surgery at all, really, really stinks!

 

[MikeHeim]

Nancy-
I couldn't agree more. There have been periods where I have been downright PO'ed that I have to deal with any of this valve stuff at all - especially at age 28. I also am jealous (probably the wrong word) of those who were lucky to live 45, 55, or even 65 "normal" years before they began to have problems and had to face surgery. That's about the time that I run into a thread from someone who's 4YO child has already had three surgeries and is probably facing many more and realize that I was lucky to get "carefree" time that I did.

 

[geebee]

I was 28 when I had my first OHS, 25 when I first developed symptoms. I was extremely angry because it destroyed my plans to have children, created enough of a rift with my ex (the kind that only likes it when things go well) that we ended up divorced (maybe good that there were no children involved.
But, you are right, Mike. When I see little ones like Katie, I get ashamed that I was upset at all. I was old enough to understand what was going on, the babies have no such advantage.
Truly, there is always someone much worse off than we. My life is so very precious now and I have so many good people in my world that would never have been there if I had not been a valve patient, to say nothing of my wonderful SO, Chris.

 

[LUVMyBirman]

Can't say I was ever angry. Scared, terrified, more aware of my own mortality, oh yes. Major wake up call.

Today I feel privileged to be among the living. Surgery again in my lifetime is inevitable. Have come to peace with that fact. Knowing it will give me another 30+ years to enjoy life. Priceless!