Symptoms starting to show?

[ALTSELGREEN]

Hi all
Been a quiet observer here for a while but just wanted some info.
Our 17 year old son was diagnosed at birth with congenital Aortic Valve Stenosis. He has had annual check ups until early last year, when his echo picked up that his left ventricular diastolic dimension had increased markedly from his previous visit. His cardiologist thought this had been caused by occasionally using weights during his exercise routine. He stopped this immediately and his last appointment indicated a reduction in the LVDD and no changes to the Aortic Valve pressure gradient. He has always been assessed as having mild to moderate AVS with some regurgitation. The possibility of surgery has been discussed, but as he has been assymptomatic, this has been under ongoing review.
Tonight, he happened to mention to us that he has been feeling quite breathless when climbing flights of stairs at school and had to drop out of a 5 a-side soccer game today after two minutes of moderate exertion. He has also remarked that even running up the stairs at home makes his heart race with the feeling it is bursting out . He has also stated that he gets a dry cough following exertion which leaves a strange taste at the back of his throat which he describes as similar to blood??
I am taking him to see his doctor first thing tomorrow morning to get all these factors checked out- but in the meantime does anyone have an opinion as to whether this may indicate intervention in the near future.?

 

[Julian]

Only a doctor can say for sure but this does seem like it may be time soon.

 

[bradvo]

Only the docs can decide when it is time but them symptoms you mention are common to what many here have had. I had a cough but no taste to it, the quick shortness of breath after climbing a flight of stairs, and when I say flight I mean 11 stairs.
Good on you for getting this checked out ,let us know what the Docs say.

Brad

 

[ALTSELGREEN]

Saw GP and he has written to the cardiologist recommending that my son gets seen sooner than his six monthly check up in March. I expect he will get seen in the next few weeks.

 

[Ovie]

I'm having these same problems and they're slowly getting worst, I'm scheduled for surgery next month. I'm 25, so not terribly older than your son. I have the same thing with the taste of blood which is interesting to see someone else comment about, I played softball last summer and managed, than fall ball and ended up quitting due to getting so tired from running, so from summer to fall ball there was a drastic change in symptoms, also I live in a basement of a house and when I run up stairs (8) I'm lightheaded and fatigued.

Like the others above, I'm no doctor, but these are symptoms that may lead to surgery. Like I said, I'm already scheduled next month and your son seems to be having the same problems as myself, and others on the site.

Wish you guys luck tomorrow and hopefully you find out what's going on .

 

[ALTSELGREEN]

Hi all
Havent been on for awhile but just an update. My son saw his cardiologist today. His pressure gradient across the valve has changed significantly from his last echo and his avs has tipped over from moderate to severe. As he has shown intermittent symptoms ie breathlessness on exertion etc they have decided that he will be scheduled for a Ross Procedure after his College examinations in June. The procedure will be carried out at The Royal Brompton hospital in London where he has been monitored since he was 10 months old. We are all a bit subdued this evening-even though we all knew this would eventually be the outcome.

 

[anne casey]

Best of Luck and prayers to you and your son! My son is just 16 and will eventually need surgery for BAV Stenosis. I understand your worry and fears as parent....again, best to you all! Anne

 

[Ovie]

Even knowing this would happen someday, it's never easy being told "it's time". Seeing how he is young, if it's going to happen in life, IMO it's better to get done young, as it's a little easier (in most cases). I hope everything ends up going well for your son and your family remains strong through it all. Support plays a large role, and just you being here with questions and updates proves he's lucky to have you.

Good luck!

 

[Greg~]

ALTSELGREEN,
I'm sorry to hear about your son, and no matter how prepared you are for the news, it's always shocking and very emotional. I know there's nothing I can say to make this better, but please try see the positives in this very difficult time. Your son is very young and resilient and sounds like he's in great physical shape. These factors combined with the fact that heart valve replacement surgery is performed so often it's virtually routine now. And not to forget, he'll feel so much better once his heart is repaired.
I'm 10 days post op for an aortic valve replacement and I'm 52. But I was out aged in the hospital by two 80+ year olds having OHS the same week as me. And they sailed through without any issues. If fact, my son had the Ross procedure performed 15 years ago and it's been flawless with no real limitations.
Please review the 'Surgical Anniversaries' section of this forum for many touching, positively charged, first hand accounts of how advanced our medical science has become. I'll keep your family in my prayers and please keep us posted as things progress.

 

[ALTSELGREEN]

Thank you all very much for your messages. It certainly lifts the spirits to read the experiences of others with similar conditions to Sam. We are just waiting now for his surgery date to be confirmed. Thanks again!

 

[Duffey]

Our thoughts are with you and your son while you wait.

 

[ALTSELGREEN]

Been quiet of late but just an update. Met with Mr Shore, head cardiac surgeon at the Royal Brompton in London last week to discuss Sams' forthcoming surgery. It is expected he will have his operation in September or October. Mr Shore is of the opinion that Sam is a good candidate for the Ross procedure and he is due to have an MRI scan of his heart to make sure. He has been quite well over the past couple of months but cannot really tolerate moderate exertion for too long. He is taking things easy and plans to take a short holiday with friends after his college exams are over prior to his surgery.