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Dd is having bypass heart surgery


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#51 creekland

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Posted 18 May 2017 - 06:55 AM

:grouphug:  :grouphug:   Adding prayers and support that all goes as well as it can.  I'm glad you have good support from family and your churches.  May God give you wisdom and peace as you deal with it all.  Your daughter is lucky to have you as her mama.   :grouphug:


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#52 magnificent_baby

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Posted 18 May 2017 - 07:00 AM

Many hugs to you! In my specialty, which is not cardiology, I see a lot of patients with congenital heart defects. Many of them have had major cardiac surgeries as children and are returning for subsequent surgeries as they get older and bodies get larger (outgrowing their repairs). I can say that quite a few, if not most, have lead very active lives, even a few of them playing high school sports.

 

Hang in there mama! If you are thinking of a second opinion, I know of a phenomenal cardiac surgeon that repairs these types of problems as well and isn't too far from there. But I do think you are going to be in great hands at Mayo, so maybe a second opinion isn't even necessary!


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#53 [email protected]

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Posted 18 May 2017 - 07:02 AM

I'll pray for you and your family.  We faced a very similar situation several years ago.  I have several children who require specialized medical care and when I start to feel overwhelmed I keep reminding myself how thankful I am that the medical care is available.  I'm thankful with you that you were proactive and had her checked when you did.  

 

ETA:  my kid with multiple congenital heart defects is in high school and plays three different sports.


Edited by [email protected], 18 May 2017 - 07:04 AM.


#54 mominco

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Posted 18 May 2017 - 12:46 PM

:grouphug:



#55 kbutton

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Posted 19 May 2017 - 01:58 PM

My son was diagnosed this winter with a genetic disorder that has very similar heart risks (including aortic expansion and dissection), and at the same time, it came to light that we have "related disorders" circulating throughout our extended family that can include those things as well. That history goes back five generations and the overall pattern was missed by cardiologists. It's frightening! Your cardiologist sounds like one of the good ones, and I am so glad you followed up.

 

I think you are extremely wise in going someplace big like Mayo. They will have done more of these surgeries and seen the variety of complications that come with the surgery. It's a really important difference for such a big procedure. I am sorry that the timing is so crazy for you, but it will be worth the effort to make this happen someplace like Mayo.

 

In the meantime, do you have instructions for what to do if she should have emergent symptoms? There are packets online that you can fill out and keep with you (and that your daughter can keep on her person) describing symptoms and the CORRECT TESTS to diagnose an emergent issue with her heart. Believe it or not, the local emergency department may not know the nuances of those tests even if you mention her diagnosis. https://www.marfan.o...it#.WR89b_nyvIU

 

The packet I linked is from The Marfan Foundation, but the packet clearly states that it's applicable to related disorders so as not to confuse emergency personnel. It sounds like your daughter is getting excellent advice for her planned surgery, but I wanted you to know that there is information about how to handle emergencies too, even though I certainly hope you do not need that information. You can also use the information to make your own emergency card if you think it's confusing to have other diseases referenced. The packet includes specific information you can hand to an EMT, paramedic, or emergency room physician.

 

I am sorry that she is having to face these issues so early on, but the advances in these types of surgeries in recent years is astounding and hopeful.  

 

I hope you are able to find good long-term management strategies as well, whether that be beta-blockers or ARBs or something else. I know that each genetic basis for these aortic complications has its own strand of research as the diseases that create these related heart problems sometimes have different molecular pathways, and I assume there are meds and things to consider going forward.

 

Please update this thread as you have time.

 

I will pray for you all!


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#56 MeaganS

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Posted 19 May 2017 - 02:16 PM

My son was diagnosed this winter with a genetic disorder that has very similar heart risks (including aortic expansion and dissection), and at the same time, it came to light that we have "related disorders" circulating throughout our extended family that can include those things as well. That history goes back five generations and the overall pattern was missed by cardiologists. It's frightening! Your cardiologist sounds like one of the good ones, and I am so glad you followed up.

I think you are extremely wise in going someplace big like Mayo. They will have done more of these surgeries and seen the variety of complications that come with the surgery. It's a really important difference for such a big procedure. I am sorry that the timing is so crazy for you, but it will be worth the effort to make this happen someplace like Mayo.

In the meantime, do you have instructions for what to do if she should have emergent symptoms? There are packets online that you can fill out and keep with you (and that your daughter can keep on her person) describing symptoms and the CORRECT TESTS to diagnose an emergent issue with her heart. Believe it or not, the local emergency department may not know the nuances of those tests even if you mention her diagnosis. https://www.marfan.o...it#.WR89b_nyvIU

The packet I linked is from The Marfan Foundation, but the packet clearly states that it's applicable to related disorders so as not to confuse emergency personnel. It sounds like your daughter is getting excellent advice for her planned surgery, but I wanted you to know that there is information about how to handle emergencies too, even though I certainly hope you do not need that information. You can also use the information to make your own emergency card if you think it's confusing to have other diseases referenced. The packet includes specific information you can hand to an EMT, paramedic, or emergency room physician.

I am sorry that she is having to face these issues so early on, but the advances in these types of surgeries in recent years is astounding and hopeful.

I hope you are able to find good long-term management strategies as well, whether that be beta-blockers or ARBs or something else. I know that each genetic basis for these aortic complications has its own strand of research as the diseases that create these related heart problems sometimes have different molecular pathways, and I assume there are meds and things to consider going forward.

Please update this thread as you have time.

I will pray for you all!

Thanks. I hadn't thought of carrying something like that, although it is probably a good idea. At her appointment, the cardiologist told us basically what to look for and to take her straight to the large ER here if we're at all concerned and to call him on the way so he could help advocate for us. And to demand a CT scan at the ED immediately rather than letting them do other tests first.

She is on some physical restrictions atm, which was sad because she had homeschool field day 3 days after we found out and we didn't let her participate. And she is an incredibly physically active kid, always moving and when she gets anxious (HFA so very anxious several times a day) she tenses her whole body. We're working on helping her to calm her body so as not to spike her blood preasure. Her cardiologist also put her on blood pressure meds to help it stay low too.

The thought that her heart is basically a literal ticking time bomb has been keeping me up nights, but I am so grateful we know and can do something about it.

Edited by MeaganS, 19 May 2017 - 02:24 PM.


#57 Selkie

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Posted 19 May 2017 - 02:25 PM

Huge hugs to you and your family! I hope the surgery goes smoothly and your dd makes a quick recovery.  :grouphug:  :grouphug:  :grouphug:



#58 fastforward

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Posted 19 May 2017 - 03:35 PM

:grouphug:  :grouphug:  :grouphug:



#59 displace

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Posted 19 May 2017 - 03:44 PM

Hugs and prayers for you. Do you have the surgery scheduled yet?

#60 Melissa in Australia

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Posted 19 May 2017 - 03:49 PM

Hugs

So glad you took her in early for her check up

Hugs

#61 kbutton

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Posted 19 May 2017 - 04:02 PM

Thanks. I hadn't thought of carrying something like that, although it is probably a good idea. At her appointment, the cardiologist told us basically what to look for and to take her straight to the large ER here if we're at all concerned and to call him on the way so he could help advocate for us. And to demand a CT scan at the ED immediately rather than letting them do other tests first.

She is on some physical restrictions atm, which was sad because she had homeschool field day 3 days after we found out and we didn't let her participate. And she is an incredibly physically active kid, always moving and when she gets anxious (HFA so very anxious several times a day) she tenses her whole body. We're working on helping her to calm her body so as not to spike her blood preasure. Her cardiologist also put her on blood pressure meds to help it stay low too.

The thought that her heart is basically a literal ticking time bomb has been keeping me up nights, but I am so grateful we know and can do something about it.

Her cardiologist sounds amazing! He clearly gets what other clinicians are likely to know and not know and where you'll be best served. 

 

I am sorry that this is complicated by anxiety and such due to ASD (my other kiddo has autism). 

 

Praying for peace for you all!


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#62 MeaganS

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Posted 19 May 2017 - 05:00 PM

Hugs and prayers for you. Do you have the surgery scheduled yet?


No, not yet. They wanted to schedule the mri first, which took a while and finally got scheduled earlier this week. Right now our cardiologist is trying to find someone experienced and comfortable with this surgery in a child, which I guess is taking some time. Hopefully it will be in June though.
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#63 Starr

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Posted 19 May 2017 - 09:44 PM

How wonderful that your cardiologist is spending the time finding you an experienced surgeon that is right for your daughter.  :grouphug:



#64 kbutton

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Posted 31 May 2017 - 04:50 PM

Meagan, I am wondering how things are going with your daughter's testing and surgery date.

 

I also remembered a resource on aortic issues (GenTAC), and there are some Turner Syndrome resources there as well in case it's a help to you. The site has publications, videos, podcasts, etc. 

 

https://www.nhlbi.ni...ch#Publications



#65 Barb_

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Posted 31 May 2017 - 05:00 PM

When it rains it pours. I've had those years. I'm sorry that this one is yours. Do what you have to for your little girl. Everything else is noise. Don't worry about doing a "bad" job on the move or if you have to spend extra money for help or if you don't unpack for months. Hugs to you and your sweet baby. She must feel so frightened.

#66 Alessandra

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Posted 01 June 2017 - 07:16 AM

My thoughts are with you, your dd and the rest of your family. You sound so level headed in the midst of a crisis. I imagine that will be a help to your dd and all concerned.