Teenager in severe status

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hannahsmom

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Joined
May 25, 2011
Messages
71
Location
Ohio
Hello Anne,

How did your son's appointment go? Was the dr able to determine if these symptoms are anxiety related?

Hopefully you were able to get some answers

Kelly
 

anne casey

Well-known member
Joined
Mar 10, 2011
Messages
48
Location
usa
Hello everyone,
His FP said it was anxiety. Since he was not " physically" active at the time and it did get better as the days went on. This Dr. Thinks he should have surgery this summer! He wants him to have it done while he's in good physical shape, and thus be stronger to heal. We agreed to get a cardio. 2nd opinion. He'll see one from mlps heart institute in early march ( day before state BPA!) we'll see what he thinks if he should have surgery before symptoms or wait. The thing is, he's the best man for his sisters wedding in early Aug, so we got a lot on our plate already for this Summer.....of course, his health will come first, if that is what is recommended.(mayo cardio says wait for symptoms and have an echo next jan.) see what this new cardio says. I think he's just going to go off echo taken this Jan.? Or do u think he'll call for a new echo again? I've just got a simple typed summary of jan. Echo. I better call mayo and request full digital records be forwarded to mlps. So new cardio has that. They'll do that, won't they?
 

hannahsmom

Well-known member
Joined
May 25, 2011
Messages
71
Location
Ohio
I am glad to see his symptoms were most likely anxiety. It is so hard to tell the difference and you can never be sure. I will be thinking of you and your family. Sometimes just having a defined plan can help with the anxiety of it all.
 

anne casey

Well-known member
Joined
Mar 10, 2011
Messages
48
Location
usa
Our son got a cardio. Second opinion. He said they will replace part of aorta too! 1st we heard that. He says no baseball and then describes in some graphic detail how they will do surgery! We were mad about that. Just freaks him out more. I feel no need to explain to the patient, when he'll be asleep through it anyway.....just tell him about before and after surgery what to expect. He's at a state competition now and told me on the phone last night that they did a lot of walking to get to a train to take him to the mall and then walked the mall of America. He said it was hard, didn't feel good and had to lean against shelves in the stores to rest! Ok...symptoms big time, right? He's gona see his original cardio in early April and we will update him on symptoms (I called and left message @ symptoms to dr. Too) We (hubby, I and son) are preparing for surgery in late May right after graduation. That's 9 weeks before he has to be best man at his sisters wedding, that should be doable, right? If dr. Agrees that it's time to schedule surgery, sure hope this time line is ok for his health and works for drs. I know what we would like, may not be what dr. Thinks. Thanks for listening (reading). This helps when I'm stressed and can't focus at work!
 

Duffey

Me and Granbon
Joined
Sep 29, 2004
Messages
5,042
Location
Far side of the moon
Yes, he should be good to go for his sister's wedding. Please let us know what the cardio says after the April appointment.
 

AZ Don

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Joined
Apr 23, 2013
Messages
675
Location
Phoenix, AZ
Although I like to be well informed about my condition, symptoms, treatments, etc., I had little interest in the details of the surgery. My valve was spared but I did have part of my aorta replaced. I'm sure it was a surprise to hear that this far into it, but I doubt it adds much to the surgery and may even simplify the valve replacement a little. I just think of my aortic graft as a tube in place of a portion of my native aorta, only more durable. Your son will likely be feeling better at 9 weeks post-op than he is now.
 

anne casey

Well-known member
Joined
Mar 10, 2011
Messages
48
Location
usa
He seen his original pediatric cardiologist in mayo last week. So glad we did that! He spent a solid hour with us! answering questions, showing us the actual pics. from tests, etc. Very helpful. Our son is borderline, but can play baseball now his senior year (although I'm worried this will bring on symptoms). His echo hasn't changed from 3 mo. ago. The Dr also reviewed the CT scan that was taken about a month ago, and showed us those pics (how the aorta is enlarged.) And we did learn that he has some regurgitation too. The Dr. does NOT recommend having surgery this summer. Wait until he has symptoms. His gradient is @ 50-52, and aorta is @ 4.2....I think I remembered those numbers correctly. A relief for us, but yet I know as time goes on, the waiting and unknown anxiety will set in again! Oh dear, won't I be a mom on pins and needles when he plays ball! (BTW, we have informed his coach about his condition and the Dr sent him a letter, no power lifting and no high cardio aerobics.) He said to come back to see him in late fall.
 

Duffey

Me and Granbon
Joined
Sep 29, 2004
Messages
5,042
Location
Far side of the moon
It's good that he saw the pediatric cardiologist. It sounds like he was able to answer many of your concerns. Best wishes for an uneventful summer.
 

kfay

Well-known member
Joined
Dec 5, 2007
Messages
1,906
Location
North Carolina
Anne, I had my surgery done at the Mayo in Rochester by a pediatric/adult congenital surgeon there named Dr. Joseph Dearani. He is awesome and really a fantastic surgeon. I know many other families who have taken their children to Dr. D and they all rave about him as much as I do. You can't go wrong with him and his staff taking care of your son. Dr. Burkhart is the other pediatric surgeon there. Although I don't know anyone who has used him, I'm sure he is a great surgeon as well. Best of luck to your son. He will be fine.
 

MrsBray

VR.org Supporter
Joined
Nov 2, 2013
Messages
281
Location
Clearwater/Tampa FL area
Hi! I'm 42 and not terribly active or fit. My surgery was 28 days ago. I'm walking a mile at a time, 3x a day, doing my own laundry & food prep, housecleaning, tending to my chickens, and will start driving a car again this weekend. Your son will be more than ready for the wedding, having the whole summer to recover. Plus, he's fit, active, and young. Most of what we read about heart surgery is geared toward patients in their 60s+. Us "younger" patients progress a bit quicker. :)
 

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