What would you do without this site?

[Curtsmum]

All my friends and even my husband tried to make me stay off VR.COM because they all said it was making me worse and i was getting more information than i needed. I can only say that i'm glad that i didn't listen to them. The information is priceless and i know you will all help get me through Curts surgery and any bumps along the way. Hank, Ross THANKYOU and eveybody else THANKYOU for being around when nobody else understands.

 

[thecoolkid17]

New member

New member

Hey everyone, I have been looking for a site that helps break down everything a little farther past the lingo that the surgeon and cardiologist describe to you. I have known of my bicuspid aortic valve since I can remember but actually knowing what it was and some of the things that could go wrong with it, that I did not. Well until I had a routine echo done and it showed that my upper ascending aorta was dilated at 4.5cm which was not an immediate concern.........but I just turned 21 last month.

And none of my friends in college, going to school for Nursing ironically, could relate or offer anything that seemed helpful, because obviously no one in my age group has this surgery usually, especially since I work at UPS, play soccer, run miles per week, and am in the best shape of my life and this comes along and just stops me like a brick wall. I have been down since I found out three months ago, and I got another three months till my surgery, Im waiting till school gets out for the summer so I have time to recover, and this site seems to be that "ticket" back to reality and am looking forward to making new friends here and asking a bunch of dumb questions

Luke

 

[Curtsmum]

Brian, just wanted to say it is members like you that are invaluable, who stick around to help people out and take the time to send messages, thanks.

Hi Luke, welcome to the forum, best of luck. It may be best for you to start a new thread so people dont miss it. I must say you look like your in the best shape of your life, if that is you in the avater

 

[LUVMyBirman]

I was one of the original mail list members. Initally seeking post surgical info. Though, think I may have appeared shortly before my surgery? Marty and Rich? Do I still have "pump head" syndrome after 9 years?

As time went on, I was able to offer support to new members. Hope I helped some.

I will never forget all of the kind and gentle words. Great friendships made along the way

Can't beleive how far all of us have came since 'way back when'. How lost we would have been without of the caring, sharing and support.

Hank, you are da man! Ross...you are awesome! How would we survive in here without you?

 

[Guest]

I was a total mess until I found this site. I'm the type of person who has to know everything, good and bad, when facing a health issue. When I had my consult with the surgeon he said I knew more than most people facing surgery. The only reason I did was because of VR.com and the folks who steered me in the right direction for information. I have an OnX aortic valve, I home test now rather than travel to the coumadin clinic, I feel comfortable with coumadin dosing, I know members here can answer my questions, and I can discuss matter of factly what my future holds with others. Friends have asked me if I'm afraid and I can say that I am not, most of the time, I intend to live my life to the fullest and with my new heart valve, I hope the possibilities are endless.

Thank you Hank, Ross, and everyone else for this site.

 

[Praline]

Where would I be without this site? I honestly don't know. I probably would not have got hit by that train behind the truck on the way down that mountain.. because the men in the white coats would have come and got me before I made it to surgery. I would be asking for crayons so I could draw a pretty picture.

Seriously though, you all saved my sanity. I have said this more than once. I was so scared!!!! But not only were you all reassuring and full of information before my OHS, but you made me feel like I had acquired a new family. When my husband was diagnosed with lung cancer, this is the place I came for???? whatever..prayers, support.... There was always someone to listen to my hurt and pain, to offer prayers, support.... It will be a year next week,March 19, that John died and I will never forget all the members on this site who went out of their way to be supportive. I feel like crying as I write this because I am thinking that one of these caring supportive members is not with us anymore.I am speaking of Granbonny...
So to everyone, thank you. Thank you to Hank and Ross for this site. Thank you to everyone for all the caring posts.

 

[bvdr]

What to do without this site? I know the feeling I get on the rare occasions that the site is down. It is like being without electricity in a storm.

 

[Cooker]

Good question. Would I have made it through surgery and recovery without vr.com, yes?.Would it have been as easy and as stress free, no?.I cannot begin to list the benefits that I have receive from this site?..I have made a few dear friends, a host of acquaintances and picked up one or two that, well quite frankly, don?t care for me, but that?s ok too.

The laughs to date far out number the tears and I suspect that will continue to be the case?.I would like to think that I have made some sort of small contribution to vr.com whether it be a small bit of information, a shoulder to lean on or a few laughs?.If nothing else I know that I have raised a few BP?s and an eyebrow or two??and it never hurts to have your cage rattled once it a while ?.What would I do without this site?...I hope I never have to answer that question?..There is no doubt that my life is richer because of all of you????.Thank you

 

[Bina]

I had not found VR.com before my OHS, but I had found 2 people living in my area who had AVR and I "interviewed" them both. That was a blessing!
Months later I found this site, but was nervous to join, so I lurked. When I finally joined, Ross was so warm and welcoming to me....it was like being taken into someone's arms. Instead of being shipped off to a nut house I found solace, comfort, tons of information, and some wickedly fun humour all in one place.
Many thanks to Hank, Ross, and all the fine people who make up this family.

 

[Ross]

This site has been my home for what? 6 or 7 years?

You people are my family. I cheered, laughed, cried, had babies, the whole gambut with you people. I can't imagine not having this site. Sure I venture round, but there is no place like home.

 

[Tom F.]

This is a great place. I was helped greatly as I neared my surgery by a member that posted his story here. He was like me, a former naval officer in the same MOS, I was reserve, he retired off active duty. We shared a common background so I was comfortable with reaching out to him. His generous assistance was what got me through those terrible days as I approached surgery. I have tried, as HarleyGirl put it to me, to "pay it forward" whenever I could, especially reaching out to those interested in or nearing aortic valve repairs.

And as for Ross, the guy who holds it all together, he deserves all the thanks we can give him. Thank you, shipmate.

 

[KathyM]

Wow what a great bunch. I am honored to be a part of this group.

I lost my husband on 911, so needless to say stressed to the max. I found out in 2003 that I had a murmur, but really did not have time to pay much attention to it. In 2006 I finally decided I was stronger and should check out what the murmur was about....Well got the news that it was a bicuspid arotic valve with moderate to servere stenosis. The cardio thought about 4 years to surgery. In 2007 I found out I had a brain aneursym. The first nuerologist said crainotomy. I said hell no. I found a group like this and found that they could do it through the groin. I had that done in Nov. 2007. New Years day of 08 I was coming home from NY in Penn Station alone. Came up the stairs with my luggage and felt out of breath a little. Walked a little further and fainted (syncope). Broke my nose, cut open my lip and black eye. Went to the hospital. Next day to my cardio. He said surgery needed to be soon. I had found this group in 2006 came right back to it and learned so much. I am now going in on April 10. When I saw the surgeon yesterday, I was well informed and quite calm. I have only you guys to thank for that. I have had to face the fear in the face and you guys taught me that. Of course I don't want this and am scared to death, but when I get to freaked out I think of all of you and how wonderful you are doing. I realize if you guys can do it so can I. Thank you so much for this wonderful place.


Love
Just Kathy M

 

[Wi-HarleyGuy]

This site is nothing short of a Blessing to any person who has undergone or will be undergoing OHS. Unfortunately for me, I did not discover it until a few days AFTER my Mitral Valve replacement operation, which was 9 days ago. Had I known about it before the surgery I know it would have been so much easier for me to face the procedure. (The morning of the operation when I walked in to the hospital, I had second thoughts and told my wife to take me home)

All I could do was call friends and ask them if they knew anyone who had this procedure. I did get in contact with two people who had OHS and they tried to answer my questions as best they could. I frantically searched the net for every piece of info I could find on heart valve replacement/repair The Doctors gave me very nice technical answers to my questions - but I was looking for more than just the technical info and doctor terms. I was looking for first hand experiences.

I am sure that the tremendous amount of anxiety and fear I had while counting down the days to the operation would have been greatly reduced had I known about this site prior to the surgery and been able to communicate with the caring and knowledgeable community of people here.

Altho I have only been a member of this site for a short time, I have to say, if it ever went away, it would be to me like loosing a whole group of wonderful and special close friends.

I have a post-op visit appointment tomorrow with my surgeon, and I am going to enthusiastically tell him all about this site and give him the VR.com URL so he can pass it on to all his patients (if that's OK with the admins of this site).


Best to all,
Wi-HarleyGuy

 

[Wise]

Without this website I would possibly still believe that having a bicuspid aortic valve is a death sentence. Of course, that's hardly the truth. I wouldn't have knowledge about coumadin that has been invaluable after my mom started taking it; in fact, I wouldn't know it's not a blood thinner and that it's important to know how to manage it. I wouldn't have known so many patient and kind people, who I now call friends, who helped assuage my fears and put me lights years ahead in knowledge for when, or if, I ever face valve replacement.

I wouldn't have known Granbonny and that would have been the worst thing I can think of.

 

[Nancy]

I found this site when my husband was getting ready to have his one of his three valve surgeries. I actually think I was a member of the VR.com site previous to this one (not the original one, but just after that), so long ago, I can't remember, so I have been here a LONG time, not as long as some, though. Hensylee answered my first post and welcomed me. Over the years, it was such a help and comfort and gave Joe and me such support. Little did I know that after the third valve surgery, he would go on to have lung surgery, then another lung surgery and so, so many other things, it's hard to quantify, all because of rheumatic heart disease.

If it weren't for this site, things would have been terribly grim and difficult to cope with.

I could always come here and if no one knew the answer, they would give me peace and strength to go on another day and help Joe.

I learned how to be a very strong advocate for my husband and not put up with baloney. I also learned so much about heart valve problems and way, way beyond. There is a great wealth of intelligence and common sense on this site. I feel like I got a second degree right here.

So much learning, so much reading.

Thank you Hank for the insight to develop the site. Thank you Ross, for taking care of the site. Ross and Hank together save us from many Internet problems and keep the site running smoothly.

It's probably one of the best run sites of its kind.

Plus, if feels like family.

To all the newbies, stay here, read everything you can. You will be amazed at how much you will learn and it will help you with your health. I promise.