Talking to other members?

[Danny]

I know this may sound wierd, but does anyone ever talk on the phone from this site? Im just curious, because i love the resposes i get, but id love to talk to someone. It seems it would help more in time of need? Am i wrong? I have no problem giving my number to anyone on this site. I think alot of people may agree, sometimes, its better to talk instead of type.

 

[Cooker]

Many of us talk .... most just need to get to know each other before they pick up the phone.....

 

[Danny]

Totally understandable Cooker, I just feel when you get bad news, its easier to talk to someone who has been there, whether you know them or not. I may be wrong, just curious. I found out my news today, and i WISH i could talk to someone. Maybe im just over doing this.

 

[Danny]

I apologize, just in panic mode here, and dont know what to do.Like many others im scared, and am looking for any answers i can get. I dont know what to ask surgeons, how to find there stats, or how to go about doing all this. I know most have been in my position already, but i havent, and im scared.

 

[ottagal]

Hi Danny,
Take a deep breath and know that you are not alone. Why don't you compile a list of questions and post them? Is there something specific that is bothering you? I am in the waiting room myself with surgery scheduled within the 8 weeks. Taking in news and waiting is the worst.
We are all here for you!

 

[Danny]

Thanks ottawa, I have tons of questions... I hear different things about my dilation, 5.0, 5.5, I dont know what to think. When is it time to go? Should i listen to my surgeon, or wait until i fall out? Where to go that is financially feasable? Is there anything i can do to slow the progression down? I totally understand that many have been here, and many are waiting also, I just got the bad news today, and im scared.

 

[Matski]

Danny, just sent you a private message. Maybe I can help...

 

[Mentu]

Danny, we are waiting together. From what I have learned so far each step in this journey brings its own set of anxieties. I will see my surgeon next week and it looks like surgery in late September. Feeling frantic, depressed and anxious seems to be part of the package but there are things you can do to keep your feelings in check. The first thing is to acknowledge how you are feeling and talk about it. Talk to your friends and family; don't keep your feelings to yourself. Come here and talk. The second thing is begin reading and learn as much as you can about your condition and about each test that your doctors order. The more you know the less frightening it will seem. Fortunately, like the rest of us here you found this website. I have found it a wealth of information and experience. Also, this is one place you can always come where if someone says "I know what you are going through" they mean every word. My experience here is that you can explore your condition and your emotions and no one here is going to put you down. You are now walking along with the rest of us and people here seem to take care of each other.

 

[briansmom]

Danny,
This is a great group and I couldn't have gotten through my son's surgeries without them. I have posted plenty of questions and I also have talked on the phone with some of the other "heart moms" when I am particularly stressed. I am happy to talk to and reassure other heart moms and have had that pleasure a few times here. Read through the posts and find a poster that you think has a similar diagnosis and pm them asking if you can call. I'm sure most people here would be just fine with it. Like you said sometimes you just need to hear somebody.

 

[Lionheart]

Hi Danny,
Yep, I've talked to several people from here on the phone. Like you , before my surgery I had many questions and I sent personal messages to a few members that seemed to have similar issues. All responded and I spoke to a few on the phone. After my surgery when I wanted to share my experiences a few times I've had someone call me because it was easier to talk than it was to type a long discussion.

Learning that you face surgery is a tough thing to accept, but for me realizing that it would improve the quality of life helped me get through it all. It is a fairly emotional time, but trust me it will get better. You have a lot on your plate right now with all this but you also have a great resource and a lot of people willing to share their experiences here.
Ask questions and send PMs, you will get a response, and if you really need someone to talk to then shout it out here. There is usually someone around that will answer.

PM me if you need to talk.

Take care,
John

 

[ALCapshaw2]

With an Aortic Aneurism, you would be best served by a Surgeon with LOTS of experience doing Surgery of the Aorta which is a Big Step beyond "mere" Valve Replacement.

I would suggest contacting the Texas Heart Institute in Houston which is one of the Top Ten Heart Hospitals in the nation.

The usual recommendation for surgery is 5.0 cm (some use 5.5) so it sounds like it's time for you to go Surgeon Shopping.

You can learn a LOT about Bicuspid Aortic Valves and connective tissue disorders (which are often associated with aneurisms) in the Bicuspid Aortic Valve and Connective Tissue Disorder Forum. That will keep you busy for a while and hopefully allay some of your fears.

'AL Capshaw'

 

[Guest]

I know this may sound wierd, but does anyone ever talk on the phone from this site?

Danny, that is NOT weird at all! Many of us talk privately on the phone, through Facebook, and many of us have met in person ... it is awesome.

Thoughts/prayers coming your way....



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