What is all this, where are the people?

[clouddancer22]

Where is everybody I don't understand this forum, I am having troubles, need to talk to someone, a real person! I am sorry I am freaking out, but I want to do chat with you people!!! I just don't understand your terms, I am lost, please help, I just want to talk to somebody!

 

[Granbonny]

Welcome

Welcome

We are all real... First, start by posting here on the same Heart Forums..what you want to chat about? Have you had OHS before?...Are you having problems with a valve?..just chat away...we will come back and tell you the correct forum you need to post your problems under....If you will notice we have several different forums..Those who have had surgery (Post) those who are waiting to have surgery (Pre) Those who take coumadin, ect...Just tell us a little about yourself..I know you live in California..Have many members from there..that help with doctors, hospitals, ect....Also, age helps us to answer most questions..Bonnie

 

[Ross]

You asked about chat and they posted when they chat. Sundays at 5 eastern time. Most of the time, no one is in chat until then. The main action is right here in the forum so that all can benefit from the answers given to the questions asked.

 

[Lynlw]

I know from earlier post, her 15 yo daughter has a cath coming up and will proably need a valve replacement or a Ross, I've tlked to her a few times on PMs. I wish I could help more, but Justin's CHDs were much different, Lyn

 

[Nan]

HI Cloud Dancer,

Sounds like you are having a really rough time dealing with your daughter's pending surgery. Everyone here would like to help you as much as we can, but we are somewhat limited by the internet and by our own experiences. Not everyone has had the same experience.

Perhaps you could talk to your daughter's cardiologist or surgeon or even her primary care provider, and see if there are any support groups for parents of cardiac patients that you could actually go to, in person, to have two way conversations with other parents. I hope that you can find something like that.

One of the hospitals might also offer a support group of this kind. Talk to the social services department in any hospital near you.

Please let us know how you are all doing.

 

[Lynlw]

Nan, that is a wonderful suggestion, I don't know Cal much since I live on the other side in NJ, but I do know of a few support groups, california connection and there are a few chapters of little mended heart in Cal, this actually is a lucky time to try to meet up since Feb 7-14th is CHD awareness Wekk and there are alot of events going on, also www.tchin.org has a list of support groups, Lyn

 

[clouddancer22]

ok. I just wish I could stop crying. I did post, under a new people post.

 

[sue943]

Crying is fine

Crying is fine

We mothers do cry when our children are ill, it only natural to be upset, that makes you a good mother.

 

[tobagotwo]

I understand that you are looking for a chat room, which we have. However, it has been largely a secondary feature to the site, active mainly on Sunday evenings. Most of what happens here is forum-based, as the greatest span of knowledge is available in that format, or off-line through PMs. Your unhappiness is certainly natural and common to patients, significant others, and most agonizingly, to the parents of young patients.

Most do find that there is considerable emotional appeasement available through this site, and there are many here willing to give their time and energy to that end. But if your distress is so intense that you must have chat access to someone at will, perhaps one of the websites that centers around children's heart surgeries would connect you to more immediate relief. I am also in agreement with others who have pointed out that you should consider local (perhaps hospital-based) patient support groups for that type of 24x7 emotional need, where a phone call can be more satisfying than typed messages.

However, that suggestion is not intended instead of this site. It means along with this forum. VR.com is becoming known for also providing active support and information needed to deal with the pragmatic issues that confront valve patients and their loved ones, which can have a far more lasting and advantageous effect on their lives than simple consolation.

I hope you find what you are seeking, in terms of your understandable grief. I also hope you won't give up on this site for its own values.

Best wishes,

 

[JeanneImp]

I know from earlier post, her 15 yo daughter has a cath coming up and will proably need a valve replacement or a Ross, I've tlked to her a few times on PMs. I wish I could help more, but Justin's CHDs were much different, Lyn

Lyn,
What is the dx?? Similar to Matt's?? Maybe being the mom of a teen with mechanical valves, I can help??

 

[Mary]

You asked about chat and they posted when they chat. Sundays at 5 eastern time. Most of the time, no one is in chat until then. The main action is right here in the forum so that all can benefit from the answers given to the questions asked.

I think it turned out ok. She has some personal issues going on; very newly divorced and has the responsibility of raising four children. She's also in school, trying to finish up a degree in education, so I'm sure all things added up to one big meltdown.

Her daughter also joined us for awhile, and she seems to be doing very well considering the circumstances.

 

[Nan]

Mary, glad that you think things are OK.

And Bob H, thanks so much for adding the clarification about the support group suggestion not being instead of this forum, but rather along with it.

I was appalled when I realized how what I had written could have been mis-interpreted!

 

[cocoalab]

I am willing to help as much as I can. I've got a couple valve replacements under my belt. One mechanical and one tissue. Well you know as mom.

 

[aussigal]

Well you did find lots of us all on the chat willing to help but you left after a brief chat about skydiving ....

I thought you were anxious to learn more about your daughters condition, thats what you asked about...what to expect and what were her options ?
after dealing with this for 16 years I would have assumed you would be very familiar with what lay-in-store for her and to leave your research til the last weekend weird


and then not much later you left us talking to your daughter about same!
niether of you appeared to want or need any advice regarding the condition and options CC22 was so anxious about

I am very confused too!...

CC22 said to me that my answers to her PM's..... and I quote "it was all too much info!" well yeah...but you didnt ask a simple question either....


I am just going to sit back and see how this pans out....


I know I trust too many people but I have all these "alarms" going off...

so CC22 if your still here, do you mind clearing this up for us?

 

[Mary]

I initiated the conversation about skydiving, because it's unusual to find another woman who has jumped.
Clouddancer told me when I first got to Chat, before you arrived Ton, that she was suppose to be taking the kids out of town for the day. She had stopped her packing so she could talk to some members before she left with them. I don't believe (and of course that's my own spin on it) she wanted specific information, she just wanted reassurance and support. At one point, she asked if I had read, in her own words, "the Primal Scream" she had posted.
I think most new members read Hank's statement on the Home page (see below), and believe his words offering help to people who are distraught with the circumstances they have found themself in. I think Clouddancer fits into this category.
From Hank:
Welcome to the World's Greatest Support Site for those who have had, and/or will have their lives affected by Valve Replacement Surgery.

 

[Ross]

Well we will support, but I have reservations about someone that waits a week before the surgery to ask for support or even become educated on the matter, then doesn't want to really hear about after coming and raising cane to get support. Just too many things dont add up to me!

 

[tobagotwo]

I didn't take your post that way, Nan. I'm sure others didn't either.

Best wishes,

 

[geebee]

Mary, glad that you think things are OK.

And Bob H, thanks so much for adding the clarification about the support group suggestion not being instead of this forum, but rather along with it.

I was appalled when I realized how what I had written could have been mis-interpreted!

Nan,

I think the suggestions you made were very appropriate and I did not interpret them to mean in lieu of VR.com. I could not imagine how someone could think so. Please don't fret.

 

[Mary]

Well we will support, but I have reservations about someone that waits a week before the surgery to ask for support or even become educated on the matter, then doesn't want to really hear about after coming and raising cane to get support. Just too many things dont add up to me!

I remember times in the past when we've tried to "add things up" and our numerical skills took us completely in the wrong direction. Of course, there are times when we've added things up, and sure enough, the answer was just what we expected it to be.
Do questions, or reservations, need to be raised in a thread? If they need to be addressed, isn't it better to do it privately?

 

[geebee]

I remember times in the past when we've tried to "add things up" and our numerical skills took us completely in the wrong direction. Of course, there are times when we've added things up, and sure enough, the answer was just what we expected it to be.
Do questions, or reservations, need to be raised in a thread? If they need to be addressed, isn't it better to do it privately?

I think it should be okay to raise a general question or concern on a public thread. After all, I believe it's important for people to know that we try to keep things open and honest. Otherwise we would have a lot more situations (like in the past) with "plants" like salespeople posting like patients (and I am NOT saying that I think this is the situation here).