why is this taking so long?

[11121978]

hi all , i am a 25 yr old female with SVT and mitral valve damage i was diagnosed with svt 6 yrs ago but it has gotten progressivly worse i am now on 160mg sotolol bd and have been admitted on several occasions for iv medication to bring my rate down again. i have been told i have mitral valve damage but it be honest was not listening to what it ment i am due to another cardio at st thomas's in london soon but dont know what to expect! someone must be able to help.sorry its been long winded but im new to all this forum malarky

 

[bethanne]

The not knowig what is going on, yet feeling like something is has been the hardest part for me so far. It is important to find a doctor that you can talk to about your symptoms that can provide you with the answers you need. Sounds like you are on that path with your cardio appt. soon.

In the meantime learning more about your condition, the symptoms to look for, etc. will help take the mystery out of the situation. If you have specific questions, you should ask them here and others who have related experience will share their own experience. Also searching the forums here for information is valueable.

I am glad you are here and hope you find what you are looking for.

 

[bvdr]

Hi 111,

Welcome to this forum. It is an uncomfortable feeling not knowing what is really going on with your heart.

Knowing that you have SVT and "mitral valve damage" gives you a place to start. Before you see the cardiologist try to get very familiar with the anatomy and function of the chambers of the heart and the valves. This will help you to understand what is going on and well as think of the questions you will want to ask.

Also request copies of test results for your own reference.

 

[Karlynn]

Welcome.

I had some really nasty arrhythmia prior to my mitral valve replacement. I have heard that it quite often comes along with mitral valve issues.

You meantioned that you've become worse since your diagnosis 6 years ago. Try writing down any changes you've noticed. Try to recall if you've given up or slowed down on certain activities. What do you feel like when you walk, or do laundry or shower. Do you become short of breath for no reason? Do you have chest pain? Do you get faint or dizzy? Do you wake up at night sweating or coughing? Have you found that you've added pillows to elevate your head when sleeping?

Write anything and everything down that you can think of, and also write down any questionsl. Have this list in front of you when meeting with the doctor.

You may want to do some web research on symptoms of mitral valve disease prior to your appointment. Go in knowing something about your issue, so that you can tell whether or not the doctor has knowledge of your issues.

I should also mention that we have some UK members that participate a lot. I bet they'll be by shortly to say hi.

Best wishes with your appointment and your valve issues. You've come to the right place for support and knowledge. Let us know how things go.

 

[Raverlaw]

You'll find a lot of information here; use the search function. Also, I found a lot of basic reference material at heartcenteronline.com

You may want to check that out for basic information on your condition.

Welcome to VR! You'll find that besides great reference material you will also find a great family of people who care and share similar problems.

 

[Nancy]

Hi 111-

Welcome to the site.

I think everyone here started out "in the dark". This site is a terrific place to help you learn about your condition and to give you all kinds of support along the way. As everyone else has mentioned, learning about things is the first place to start. I know you want to ask the cardiologist questions, but probably don't even know where to begin. Try running your questions by us. You'll have lots of answers that will lead you on to learn more and more. There is a wonderful reference forum here. What you have to do to see all the references, is to go to the bottom of the page while in the Reference Forum, and find the setting for viewing posts that says "last 30 days", and change that to "from the beginning". You should see a very long list of helpful links. Just plunge right in and start reading. It hard and scary at first, but trust me when I say that it does get better. The more you know, the less scary it becomes.

So come on in often and ask all kinds of questions.

 

[hensylee]

Welcome, 1 - nice to have you with us. There is a whole lot of information for you here. The gang is coming - just keep checking back and you will find many answers to your questions.

 

[Gemma]

Hi there,
Just thought I'd add my welcome - it's actually my boyfriend who had the valve replacement, but I've had to learn about it too - seems daunting at first then one day you'll see it all makes sense!
Have you checked out www.guch.demon.co.uk? It's the UK website for Grown Ups with Congenital Heart disease, and there's a message board there you can search for info as well as here - lots on SVT. Jim had to be admitted to hospital 2 months ago, 1 month after his aortic valve replacement, with SVT - arrythmias are common in the first few months after heart surgery - so I kind of know what it must be like for you. He also had an amioderone drip for 24 hours, and has been on sotalol ever since, which has thankfully kept it under control.
his circumstances are different to yours, so I can't offer much advice about mitral valve problems I'm afraid, but please know that you've found a great group of people here, and I'm sure there are many who can offer more advice than me (also if you're up in the middle of the night with questions there might even be someone in America who's awake too and can offer some support)
Gemma.