New to forum: Congential pulmonary valve stenosis.

[Rob4001]

Hi I'm Rob I from the UK aged 38

I'm very glad I've found this site. I have congenital pulmonary stenosis and had a valvotomy aged 3. I've try and keep fit by doing weights etc but marthons are out of the question . I noticed a few years ago I was becoming very breathless when jogging short distances less than a mile and having mild chest pain. long story short I had to wait over 1 year to receive MRI scan, which has indicated 70+% pulmonary regurgitation and moderate dilation of my right ventricle. It has been suggested that i would need to replace my pulmonary valve. I have been told they want to test to quantify my exercise capacity. My problem is I don't get to see my cardiologist for another 5 months to discuss findings I'm worried about how long heart can go on before right sided heart failure. The good and bad of UK health system is its free but waiting lists for tests, seeing cardiologists, surgery. Its all the waiting that worries me. Don't get me wrong I am grateful for all healthcare I have received throughout my life & fantastic staff.

Any way thanks you for reading

Rob

 

[Duffey]

Hi, and welcome, Rob.

I don't know much, if anything, about pumonary stenosis, but I'm confident that someone on VR will come along with similar issues.

So glad you joined us. I just wish it were under different circumstances.

Mary

 

[Fundy]

Is an MRI scan an accurate measurement test for regurgitation. I know its not an accuraate test for stenosis. My MRI had stenosis at mild while Echo had it at almost severe a few years ago. Cardiologist says they never rely on an MRI to measure stenosis, always an echo. So I'm just curious as to if an MRI can accurately measure regurgitation. My gut feeling guess is that it wouldn't be accurate and that an echo was needed instead.

 

[Greg~]

Hi Rob and welcome to the site. You've found an awesome resource here as there are many people who have different heart problems and regularly post comments about their situation. So I'm sure someone will comment regarding your specific situation. Additionally, you can perform a site search for 'pulmonary stenosis' to retrieve any previously related posts.

I totally agree with Fundy regarding the MRI. I'm not a physician nor an expert on heart disease diagnosis, but I am 10 days post op and I know from my own experience that the MRI taken for my chest was only one of many other tools used (echocardiogram, TEE, x-ray, and angiogram) by the cardio to diagnose my condition.

I live in the US so I'm just generally familiar with how your healthcare system works. But there are several people on this site from the UK that can add a lot of value regarding the possibility of getting seen sooner. 5 months sounds like a long time to wait given what you've described to be the symptoms and the MRI scan indicating a 70% blockage. I hope and pray you'll be able to get some traction on this soon and then get your heart fixed quickly

 

[Ovie]

Welcome! Although I personally have no information on your situation.

I'm shocked how long of a wait it is just for an MRI, and am to curious how well, if at all, it can pick up what's happening. Like Greg said, there are usually multiple tests to find out exactly what's going on.

Only advice I can give you is don't let up, that's a long time to wait when you're having issues and don't k ow what's going on. I wish you good luck and hope tho GS work themselves out.

One things for sure, you've come to the right place.

 

[Rob4001]

Hi

Thanks for all the info and messages of support they are much appreciated. I have had echo's and ECG's I was lead to believe that cardiac MRI was a gold standard test. Any way thank you very much for kind messages glad I've come to the right place.