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I think I have my own diagnosis


Forum: February 2014 Playroom

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  #1  
September 30th, 2013, 01:33 PM
PrettyMommy's Avatar Mega Super Mommy
Join Date: Nov 2006
Location: Nevada
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Of course I am no cardiologist but some things you can figure out from information given. I will confirm my findings with the real cardiologist when I get an appt. From everything the doc explained to me he was seeing, it sounds very much like my son has aortic valve stenosis. His ventricle was of normal size but the blood vessel carrying blood through the left ventricle to the rest of his body is narrow making the blood flow minimal. This is pretty much EXACTLY what he said is happening from what he see's and the description of aortic valve stenosis is this to the T. I read about a procedure on the University of Michigan Health Systems site that can be done in utero before baby is born to place a balloon in the vessel. If the blood flow continues to be minimal it could cause the left ventricle to become smaller causing HLHS, which is what the doc claims usually happens. The balloon procedure prevents him from developing HLHS.
I really want to ask the cardiologist about this and if the procedure can be done here in my state at one of the hospitals. Anything I can do to help his chances I will gladly go through. I haven't researched the success rate of the procedure thoroughly but I indeed plan too. It's a shame I have to find out my own diagnosis through the World Wide Web but this time when I go into the office I will be well prepared and armed with a list of questions and more knowledge then they give me credit for. Not sure why they didn't just tell me this in the first place. It seems cut and dry and obvious this is what he has.
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  #2  
September 30th, 2013, 01:43 PM
melissalaw's Avatar Platinum Supermommy
Join Date: Mar 2011
Location: Tennessee
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A mother's intuition is usually correct. I don't know why dr's can't just tell us what is wrong instead of going round and round. hopefully it is something that they can correct easily. I hope you can get a darn appointment soon so you can find out for sure. I'm a bit pissed that they are making you wait so long. have you ever heard back from them about an appointment time?
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  #3  
September 30th, 2013, 02:46 PM
PrettyMommy's Avatar Mega Super Mommy
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Location: Nevada
Posts: 2,183
Still haven't heard and I called them this morning. The girl handling the appts apparently wasn't coming in until 9 and I left a message for her to call me back and have yet to hear anything. I think I will call them back now and see what the heck is going on.
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  #4  
September 30th, 2013, 03:06 PM
PrettyMommy's Avatar Mega Super Mommy
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Location: Nevada
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Second call did the trick. Appt with the cardiologist October 17th at 2 p.m. They again want him to be a bit bigger so they can see better. So now I wait, AGAIN.
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  #5  
September 30th, 2013, 05:01 PM
OscarsPaprika's Avatar Strong proud Army wife ;)
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Well, hopefully they give you the answers you need and deserve. I'm glad you found some info on what seems to be going on and that there is a treatment that could work. I'll be keeping you in my thoughts, hopefully the time flies by for you too
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  #6  
September 30th, 2013, 07:15 PM
victoria0294's Avatar Mega Super Mommy
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Posts: 1,083
I'm glad you have an appointment! The waiting game sucks, but at least you now know when you will be able to get some definitive answers.
I don't know why doctors don't just tell you what it is- my dr did this to me too... She said a little about what was wrong and a tiny bit about the treatment, but I had to flat out ask "so is this TTTS?" and then she said yes. I think they don't want us looking up information online because there's so much out there.
Hopefully they can do the surgery for you. Even if you have to go out of state for it (we did for our surgery) as long as you get the best possible care that's what's most important!
Good luck, and keep us posted
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  #7  
September 30th, 2013, 08:36 PM
PrettyMommy's Avatar Mega Super Mommy
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Yeah if I had more info with my first appt I would have flat out asked if it was the aorta valve stenosis. Now that I know I am going to ask them straight out this time. I don't like the beating around the bush. I know they try not to use too many medical terms and keep it simple but they have to realize many of us come in armed with a lot more knowledge then they give us credit for. I'm ok with waiting at this point, at least I'll have some sort an answer when I see the cardiologist.
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  #8  
September 30th, 2013, 09:38 PM
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I agree, your mother's intuition is usually right. Ask the questions and be adamant about receiving real answers. The waiting game does definitely suck, but this time, you'll be well prepared. I'm praying you get some real answers and good news at that.

If they don't want us looking up info online, you'd think they'd actually tell us when something is amiss and exactly what they think it is. On the other hand, if they gave some kind of awful unofficial diagnosis, that would undoubtedly cause more worrying, too. We moms worry. That's what we do no matter where we get the info.
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  #9  
September 30th, 2013, 09:40 PM
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Location: Kansas
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You are a wonderful advocate for your baby keep up the great work! I am sure it is tiring and frustrating and SLOW but you keep pushing and get what you need for yourself and that baby of yours. What a wonderful and strong woman you are and know we are here to support you come what may. Please keep us posted!
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  #10  
October 1st, 2013, 05:58 AM
melissalaw's Avatar Platinum Supermommy
Join Date: Mar 2011
Location: Tennessee
Posts: 14,225
Well I'm glad that you finally got an appointment even if it is a little bit away. I can understand that they want him to be bigger so they can see it better. Try not to worry too much between now and then. I know that's easier said than done. but hopefully it will be something that can be easily corrected.
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