Im new (so hi) and wanted someone else's opinion!

A place for GUCH Patients and their families to exchange experiences and gain support. So please feel free to ask any questions you may have.

Moderators: Moderator6, Moderator2, Moderator5, Moderator1, Moderator3

Im new (so hi) and wanted someone else's opinion!

Postby matt1210 » Tue Dec 09, 2014 8:51 am

Hi everyone,

I'm sorry about the long message. Have a read and tell me what you think.

I am a 30 year old male who had a Pulmonary Stenosis repair and VSD closure when I was 5.

In the summer of this year I was ill with a mental illness. The doctors wanted to try me out on a new drug but before they did this they wanted to make sure all was ok with my heart as the new drug can cause heart problems. They did a ECG which showed a right bundle block. They decided to then do an Echo. The echo showed that I had a mild enlargement of the right ventricle. Unfortunately nobody knows if this is something that has been there since I was a child or more recent. Due to not having a echo since being a child. When I got told about the Echo results I asked the GP if they thought I should get referred they said there was know harm in it but would be happy if I decided not to. I decided to leave it for a while as I was visiting a friend for some time on a cruise ship. A week later I flew out and very quickly it became apparent that walking up 3 flights of stairs was causing quite a few problems. With physical symptoms of palpitations, breathlessness, dizziness and pain in chest and left arm. Once I had sat down for a while it went away. I decided to keep an eye on it for a few days. However it did not get any better so I decided to come home. I immediately went to my GP explained it all and he said that he would do some checks and contact the cardiology department. He did the checks and the 24 hour ECG came back with an irregular heart beat but this is not abnormal. The GP has now received a letter back from the cardiology department which basically says that with my previous history of a VSD closure the test results are because of that and the symptoms are of anxiety. So he feels that he can not justify seeing me especially under the current circumstances ( their short staffed) This is fine and I was quite happy with his answer. Then my mum read the letter and brought up the fact that he doesn't mention the Stenosis. So I contacted my GP just to make sure that this was not a problem and he said 'oh, it doesn't say anything about the Stenosis on your notes' at which point my mum said well he had it done. The GP has now decided that he would definitely like me to see the Cardiologist so I'm now waiting for an appointment.

Apart from the obvious concerns about the lack of history on the computer and the staffing issue at cardiology I feel a bit on my own with this. I am aware that I have had a few issues this summer with mental health and sometimes chest issues can be related to anxiety but I feel like it may be more. I have done a little research online, probably not the best idea and it says that you should have regular check ups with a cardiologist throughout life after a stenosis and also a stenosis can recur. Well I can tell you I haven't seen a cardiologist since I was a young teenager. I also wish I could say that symptoms started after I was told about the enlarged right ventricle but this isn't true. I would definitely put it down to being in my head then. I have actually been suffering like this for about 18 months and have been admitted to a&e quite a few times over the past 10 years due to chest pain, and always told it's anxiety. Due to the obs being ok apart from the obvious issues with ECG and irregular beats. However nobody has ever done an Echo.

My current situation is that when I am just sat around (thankfully something I'm doing a lot at the moment due to being off work sick still) I'm fine. As soon as I do anything that isn't walking a short distance slowly I become ill with the symptoms I have listed above. And the current waiting time to see a cardiologist is at the earliest next year.

I'm not sure what to do, I know I'm not going to get a diagnosis on here but if someone could give me a little reassurance maybe or even tell me what I could. That would be great. Even just to have someone else's opinion would be nice.

Thanks a lot

Posts: 1
Joined: Tue Dec 09, 2014 8:37 am

Re: Im new (so hi) and wanted someone else's opinion!

Postby Sctb78 » Wed Dec 17, 2014 8:10 am

Hi Matt,

Sorry to hear your not feeling so good. I had Pulmonary Stenosis since birth and underwent a valvotomy aged 3 to widen the valve. A result of this operation is the Pulmonary Valve is altered so that it will not close completely on each heartbeat causing some leakage of blood back through the valve into the heart. All was well until i hit my 30's where i was told that due to the extra work my heart was doing to push the excess blood out, my Right Ventricle was starting to enlarge and i would need a Pulmonary Valve Replacement (PVR) sometime in the future. That finally happened in September this year, i'm 36 now. The operation passed successfully and although i'm not totally symptom free now i am not getting any worse. I had similar symptoms to you pre op.

I'm not saying you need a valve replacement, far from it, just letting you know there are other people out there with similar stories and living perfectly normal lives. I'm sure you will get answers in due course and i'm guessing the Echo would have highlighted any need for intervention but i would keep pressing for answers regardless. You really should have been followed up after such a big operation in your childhood. I myself was not seen for around 10 years once i transitioned from pediatrics. It was only due to me making a noise about it that i got back in the system again for annual check-ups.

Keep your chin up :D

Posts: 9
Joined: Sat Aug 02, 2014 10:53 pm

Return to General Discussion Group

Who is online

Users browsing this forum: No registered users and 3 guests