Size?

[Curtsmum]

Curtis goes for his heart scan in 13 days, i'm starting to get a little nervous as usual. We only know that he as moderate narrowing of the mitral valve. I have noticed from reading threads that a lot of you seem to know the size like in cm, so do i just ask the consultant and do they have a number for pulmonary pressures, as this seems to be there main concern with Curtis. He will be having another t.o.e and cardiac cath somtime after his heart scan but iam starting to get curious and would like to find out more.
Thanks for any help, Paula x

 

[Lynlw]

Curtis goes for his heart scan in 13 days, i'm starting to get a little nervous as usual. We only know that he as moderate narrowing of the mitral valve. I have noticed from reading threads that a lot of you seem to know the size like in cm, so do i just ask the consultant and do they have a number for pulmonary pressures, as this seems to be there main concern with Curtis. He will be having another t.o.e and cardiac cath somtime after his heart scan but iam starting to get curious and would like to find out more.
Thanks for any help, Paula x

Paula, alot of times since kids are growing the actual size isn't quite as important to follow as the pressures. I think to make it easier for you to keep track of and have something to follow to see if Curt is staying relatively the same or is getting closer to needing surgery, would be to ask what they use as one of the numbers. for Justin,since most of his ongoing problems have to do with his right ventricle -pulm artery. the importan number is his "pressure gradient" (which I'm hping someone can explain easier than me) that has to do w/ the pressure in his right ventricle since blood has problems getting out of it. good is pretty low, like 0-20, alot of kids/adults start talking about intervntions around 60, but of course it also depends on other things, how they are doing ect Justin is "fine" in the 80s and since he has had many interventions basically we go by "when do the benifits of having surgery outweigh the risks"
I hope that helps and didn't make you more confused, Lyn

 

[Curtsmum]

Thanks lyn,
looks like i need to have a good chat with his consultant, just wondering if you know if i can ask for the results from his cath, as they never really tell us much. Paula

 

[Ross]

Thanks lyn,
looks like i need to have a good chat with his consultant, just wondering if you know if i can ask for the results from his cath, as they never really tell us much. Paula

In the U.S., you have a right to have them. I don't know what your laws are there, but I'd sure try.

 

[Lynlw]

Thanks lyn,
looks like i need to have a good chat with his consultant, just wondering if you know if i can ask for the results from his cath, as they never really tell us much. Paula

Like Ross said, in the US that is our "right" but don't know about UK. have you ever checked out the UK Adult CHD group I don't remeber the link but it is something like GUCH, they probably know all the rules. I would ask the doctor and don't just ask the actuall numbers, but makes sure he explains what they mean. Do you have his email addy? sometimes I find it easier to ask a more lengthy question by email so the doctor can take some time to explain it in writing and after you read it , you can ask for better explainations on things you don't wuite understand. BUt you can certainly do it in person, and if they say something, you don't understand, ask them to explain it or draw diagrams until you really do. Sometimes doc have a tendency to talk using words we don't know , or the opposite and make it too simple. and ask what exactly they take into consideration on Curts heart specifically to decide the plan, Lyn