Cath and Echo report -finally

[skimomck]

Well it has been a month since I discovered this site and found out that Teddy's pulmonary valve was stenosed (what a wonderful and supportive place this is) and finally today we found out the results and what they recommend we do about it. We got very different advice from the Ross surgeon vs. the cardiologist(probably not uncommon). Unfortunately the surgeon didn't get the Cath CD until this morning, I overnighted it to him. He had originally asked that the cardiologist call him after the cath which they never did and discuss what he found and it wasn't until today that he new anything. Lots of problems in the cardiologist office and bad enough that we are switching to someone else. The doctor we ended up seeing was new in the office and the cath was done by someone else we didn't know.

The cardiologist we saw yesterday said they were very, very concerned about his aortic sinuses (new to me), which have dilated. I now know it is the aortic root which is Teddy's previous pulmonary valve root and it is not uncommon for this to occur. She said because of this he could do no aerobic or any strenuous activity including all of the things he does on a regular basis. As far as the pulmonary stenosis goes she now says we will wait until he is symptomatic which he wasn't at the time they discovered the problem and became so concerned. His echo gradient is now 68 which is lower than before the balloon even though they weren't able to dilate it very much.

The surgeon thinks we can just watch him and do another cath at Christmas break and he can continue to do his normal activity with some caution and agree to speak up if he becomes symptomatic. That part wouldn't be hard for most of us but for a 19 year old who doesn't want to stop what he is doing and address a problem it isn't easy. The surgeon has a lot more experience with Ross patients then the cardiologist we saw, who has none.

Teddy is very happy today and will start packing. It has been a long grueling month of worry and waiting and especially difficult for him but he is now college bound and will leave in two weeks.

Thanks again,
Cindy

 

[Bryan B]

Cindy,

So he is having problems with his aortic autograft root as well as the pulmonary homograft stenosis?

Well tell Teddy to enjoy this semester and make sure he realizes that he MUST be honest and speak up if he starts to experience symptoms. Please keep us informed on his progress and tell Teddy I admire his courage through all of this!

 

[ALCapshaw2]

Cindy, I KNOW you are concerned, and I feel some apprehension about how a YOUNG MALE is going to react to a slight pain that might be the signal that he needs to SLOW DOWN RIGHT NOW to prevent something more serious from happening.

I know I pushed my recovery and 'almost' tripped while walking in my woods only a few weeks post op which could have have serious consequences. We males don't like being incapacitated and tend to 'push the limits' to find out where they are. NOT always a good plan...

Does Teddy 'Get It' about the potential risks he faces from over exertion? If not, is there someone (preferably some MALE) who can get the point across?

'AL'

 

[surfsparky]

Hey Cindy!
Thanks for posting, I've been thinking about you and Teddy this week. Great to hear that you could get some advice from the surgeon, although it's a little bit disconcerting when the cardio's views and surgeon's views are so different. In my limited experience, my ross surgeon tends to err on the side of caution, so he wouldn't allow me to wait for surgery unless he felt it was okay. It's great to hear that Teddy can now start college, but tell him from us that he needs to listen to his heart. I used to tend to push myself, especially in my surfing, as I was determined to keep going no matter what, but I have now learned that there could be potential damage in taking that approach. Make sure too, that you keep asking him if he's been experiencing any symptoms, because unless my wife asked me, I would never tell her in fear that she'd stop me from doing the things I love! Unfortunately for me, I'm not good at fibbing, so she can see right through me when I'm trying to fib or avoid her questions (I think the guilty smile might be my giveaway!)
Take care Cindy,
Chris