Information Superhighway
Let's start with a topic of interest to us all... the "Information Superhighway". Much has been written lately with regard to the Internet. Now, it`s your turn to share your thoughts about this emerging technology. Some issues you might want to address include:
- What specific information have you found that has been helpful to you? How did you find it (i.e. search engines, newsgroups, newspaper articles)?
- Do you subscribe to a mailing list? Do you correspond privately with families you have met online ? Are you a lurker or an active participant? In what ways has your participation affected you?
- Do you participate in a professional mailing list? Has this method of communication affected your work? In what way(s)?
Responses to Family Room
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The Internet has actually been my sole source of information and support for my son's CHD. I fumbled my way around at first; doing searches on cardiology and hospitals with cardiology and/or pediatric web pages. I ended up e-mailing a professor/physician directly because I couldn't find exactly what I was looking for (but I managed to find his address). He put me in touch with a wonderful man, the parent of a child with Tetrology of Fallot, who gave me a list of web site addresses and told me about the book "The Heart of a Child". He also told me about a heart issues mailing list which was just starting up.
When I joined the heart issues mailing list, most of the discussion was centered around adult heart diseases. But, I posted a message anyway. I received some wonderful responses and was actually amazed at the kindness and support I found on something as impersonal as a computer! Not only were the list participants helpful, but the physician who was the list administrator also offered his input and advice. I received information and guidance on everything from my son's specific defect to some questions I had about medical insurance.
Since then, the pediatric heart issues mailing list has been formed and, while I am an avid reader, I don't participate much. I like reading the posts and following the kids' progress.
For me, the Internet has been a wonderful source of information, support and friendship. I know my life would have been much more difficult without the people I have "met" and who have helped me not only understand what was going on with my son, but how best to help him and my family through the hard times.
L.M.
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I have found the on-line support groups to be very helpful. I found out about the ACHD listserv about a month ago from a friend who is on the list. I'm so glad that I looked into it and started writing in. What I really like about it, is just finding other people with heart problems to talk with, to share with... because only those that have been through it, understand how it feels. Even if you have never had surgery, you still know what it's like to live a life with a heart defect.
I was born with Transposition of the Great Vessels and lived a fairly normal life. My problems all started as an adult and I just wish, that when I started going down hill, that I knew of these heart support groups on the Internet. It has been a year since my surgery, but finding these places has really made my life happier.
I am on one or two e-mail lists, not including the ACHD list. I do correspond privately with a few others who have heart problems and I truly love the friendship that we all have. My participation in these groups has really enlightened me. I used to not want to know how my condition affected me, when I was younger, I didn't care about my heart. But after my health went downhill 2 years ago, I really had no choice. I was told that I couldn't work anymore, so really, the Internet was my only reach to the outside world. It wasn't until after my heart surgery that I took an interest in knowing about my heart condition. Finding these pages and support groups has really educated me on my heart condition and others. I used to think I was the only one out there with a heart problem and I can't tell you how happy I was to find others who have shared the same feelings. And to find others who have Transposition of the Great Vessels is wonderful, well not that wonderful, but for those of us who have it, to find someone else to talk to is great!!
I just have to say, that the Internet is a great thing that we have now! Without it, none of us could really talk to each other as easily as we do now. The ACHD list , to me, seems to be the best so far. Making it so everyone can send a message to all on the list, is wonderful! This is the best thing that I've seen for adults with heart problems. There seems to be more out there for the parents of children who have defects, but those of us who have gone through our childhood without support, that are now adults, to have this support, is wonderful!
I had no one to talk to about my problems when I was growing up.. having my first heart attack at 19 was very scary for me. I was in a ward full of older people . I felt like I shouldn't have been there.. Being too old for the pediatric ward and feeling far too young for the adult ward. I truly felt alone!! But now, I'm not alone anymore! I'm 26 years old ,and ing friends that I can share and talk with is wonderful.. And my husband thinks that it is wonderful that I finally have others to talk to!
L.
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I have found the internet to be a wonderful source of information. I can remember when my daughter was little and scrounging all around to find information on CHD. It was very hard to find. Once her local pediatric cardiologist sent me home with one of his medical books. It was informative in some ways, but not really in the way I was looking for.
I subscribe to the pdheart list and find it to be very helpful to be able to communicate with other parents that have children with heart problems. It is what I have needed for years!! Most of the parents on the list are new at the parenting of a heart child and it feels good to be able to tell them that I know what they are talking about and when I can help them because I have had experience. It also helps me to be able to talk to other parents that know what it is like to have a child with heart problems. I think I have been looking for that for years!
Even though my daughter is now almost 14 years old it seems like only yesterday that she was just a baby! I guess I will always look at her as my baby, as she is our youngest child of 3 - and the only girl! She's our special angel, our miracle baby!
R.S.
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I only have access to the internet at my job, but we are allowed to use it outside office hours for personal use.
At the job, we start using the internet in a professional way. Most of our mail between the branches of the componay go over the net. Until now, internet access has primarly been used for e-mail purposes, but the company has started designing its own site.
For personal use, I have used the net for:
- fun: looking up information about aerospace technologies
- finding information about CHD. My son has no anatomic defect but somewhere in the interaction between the nerve system and the heart muscle is a congenital defect, resulting so far in multiple cardiac arrests. The ped. are currently deciding if a pacemaker is advisable or not. So I have used the internet a lot for finding information about pacemakers, and where the procedure can be done.
I am a semi - passive member of the PD-HEART mailing list. I read with joy all posted e-mails, and I do respond to subjects I can share personal experiences or opinions. In fact. the mailing list is a superb tool for sharing joys, problems, questions with fellow parents who are / have been in the same situation. Although it may seem useless in offering an instant solution to the problems our CHD children are confronted with, it is a wonderful way to encourage and to be encouraged.
K.V.P.
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