Tips for coping with stress waiting for tests?

[beyondbadger]

I'm 29, turning 30 in a month and I have what is strongly suspected from an echocardiogram to be a left ventricular outpouch. It's an extra little pouch on my heart wall and it roughly falls under aneurysm but it might not actually be that, it may just be that I have a misshapen heart. I've been referred for a cardiac MRI so they can more confidently diagnose.

I found this out in conversation with my cardiologist earlier in the week, but a few things are really hitting me now:

-It's likely to be months until I find out either way, as my cardiologist usually doesn't tell me results until we have an appointment and my next appointment is in June. This is even more so as I don't have any breathing issues at the moment, which is what should be affected if it's really bad.

-My condition is so rare there is no information about it on any patient friendly sites. Right ventricular outpouches are something cardiologists may see once or twice in their career but left ventricular ones are something most never see in their lifetime (according to a cardiac nurse). All the case study articles I can find are written about paediatric or foetal cases and I'm 29.

-Even if I do have it, I don't know what this means. It could mean I've just got a weird heart but I'm fine or it could mean I have a weakness in my heart wall, which is a big bad nasty medical situation.

I'm completely freaking out. I spoke to a cardiac nurse on the support line and she was really lovely, but she can't give information that doesn't exist for a condition which has never really been researched.

I'd love tips on how to stay reasonably sane for the next few months whilst I wait to hear my results. It sounds really stupid but I'm 29, and I thought statistically I wouldn't have to deal with life threatening conditions until I was much older.

Thanks for reading, I hope that wasn't too much of an information dump!

[Pyowacket]

Take each day as it comes. Accept that some days you will feel more stressed and others day you will not think about it.

I have a genetic heart condition so I understand how hard it can be to cope.

[Badger2024]

Ask whoever is doing your cardiac CT how long it will take for your specialist to get your results then call up to get put on a cancellation list for an earlier appointment. Don’t you have phone appointments in the UK? You can explain to the receptionist that you just need your result from the CT and are happy for a quick phone appointment rather than wait until June

[beyondbadger in reply to Badger2024]

I think part of the problem is, my condition is so rare the cardiologist in all likelihood will have never seen it before so whoever is doing the scan almost definitely won't have either. So it'll take some time for the cardiologist to do the research and interpretation of the results. We do have telephone appointments for primary care, but I've never heard of it for cardiology unfortunately. They tend to like to get you in and do a bunch of general checks at the same time to monitor.

[Badger2024 in reply to beyondbadger]

Ok I get that. Just keep ringing to get an earlier appointment. They get cancellations all the time. Ring every week so that you’re the first person they think of when someone cancels. Tell them you’re only 29. Chances are one of the receptionists has a child that age