Newby here. Feeling worried because have just been diagnosed with aortic regurgitation, GP went ahead with appropriate testing based on my symptoms as well as referring to cardiologist. This started in June and I got the diagnosis last week after echocardiogram end of Nov. Still waiting to hear from specialist - who knows how much longer that will take? Set back on my heels a bit because this is the first serious health condition I've faced over which I think I have no control how things will go. I don't smoke, eat healthy, exercise, but am getting old.
Any words of encouragement and/or advice gratefully received.
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HeronNS
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I find constant 'nudging' of the dept/consultant/and his/her secretary is likely to get info. as
to the next step forward. You need to know soon for your peace of mind. Do not let them take their time to get back to you. In this day and age it is every patient has to look after him/her self.
I have no idea who my GP has referred me to. I live in Nova Scotia so the system is different. At the moment, like most of the world, the system is stretching to the breaking point, but it wasn't in very good shape even before the pandemic. My GP has been very good, and it's possible he's already done what he can to get me moved up the list, but there are undoubtedly many others who need help more than me. GP ordered tests which he felt would save time when I finally did get to see the specialist, because they would already have been done, and the cardiac ultrasound was the first one that showed anything. Before that, just my somewhat vague symptoms (which have been getting more definite, unfortunately) and he detected a heart murmer when he listened to my chest. But I'd been told decades ago I had a "functional" heart murmur, so I was a bit dismissive. In fact had I not mentioned symptoms to one of my sons, who then literally nagged me to tell my doctor, I probably still wouldn't have said anything.
So sorry to hear your diagnosis. Of course it is a shock and a worry. Unfortunately I am no expert in such a condition (nor in any other conditions I must add), but some people who understand this better than I do will give you the help and guidance that you need at the moment.
However, I understand what having a serious health issue is, because I have had RA, Sjogren’s, uveitis, vascular insufficiency, etc for quite a while… It’s not easy but once you know what treatment you can start it might ease your anxiety. You have my empathy. If I may say so, try to stay calm… Hopefully your cardiologist will contact you soon, or can you contact him? Take care and sending best wishes. 🌸
I believe we have "met" in another community? I also follow bone health and arthritis communities, although principally PMRGCAuk, for polymyalgia. Seem to be collecting a bunch of "conditions" myself. The joys of aging!
Apologies for intruding into this heart-related conversation. I just want to let you know that I follow you on the bone health portion of HealthUnlocked. Your knowledgeable posts are also a source of comfort and inspiration for me. You seem very level-headed and proactive. I have confidence you can handle this. Best wishes.
Sorry to hear bout you being diagnosed with aortic regurgitation did they specify whether it was a slight leak or was severe leak mine is moderate to severe but as I don't have any symptoms with it I don't need valve replacement surgery yet. Hope you don't need anything like that.Have you been refered to a cardiologist?
Hi, thanks for your comment. No. I found out through a brief phone visit with my doctor where I was asking for a prescription renewal and asked in passing whether he had the result of the ultrasound. He said yes, told me the finding, and reassured me that I would be hearing from a cardiologist. As indicated in a previous reply the referral was made in June. The worst symptom I've had, and it was a one off was while I was driving and, fortunately I think, was stuck waiting to be waved through a roadworks site, and suddenly felt that a fist was squeezing something in my chest. It was uncomfortable, somewhat painful, I felt a bit woozy, and then it passed and has not recurred. That was a couple of months ago. Mostly it's just an odd, but increasingly more frequent, sensation of slight pressure or a sort of flutter in my chest - which was what I told the doctor about, triggering the investigations. Haven't told him about the chest squeeze!
If you don't have symptoms, how did you find out you have the condition?
Ahh that sounds awful what you experienced the squeezing ooh 😳😔. I was actually born with 4 different defects one is mixed valve disease my aorta is leaky and narrow but my cardiologist has assured me don't need surgery yet. Definitely mention the chest squeeze. 🤔
Sorry to hear your news , we do both seem to collect the illnesses , but the cardio ones can knock you off balance , even if you are as used to dealing with health issues like us.The heart and brain diseases are often the ones the effect the variety of things that you can do more than any other conditions without you really being able to make much change to the situation if your already live healthily.
You are standing at an advantage,just as I was , because you have at least learnt the skills of pacing yourself and patience with your body from your other health issues. With cardio problems you can't really try and force the activity or cheat a bit and overdo it deciding you will cope with the pain or fatigue tomorrow , the effect is often instant if you tax your heart ability before treatment is fully done.
Take it easy , keep away from the heavy bags , hills , vacuums and domestic chores that require too much force ,and take stairs carefully. Relaxation and breathing exercises can help with your symptoms.
I'd agree with another member , if you were referred in June and still haven't heard from the Cardiologist you need to push to see what's going on. The cardiologist may have seen results from your GPs tests and assessed that a review isn't urgent and surgery isn't required, but they should inform you of that and give you chance to request the appointment asap.
AR with growing symptoms needs comprehensive tests , if symptoms are medium to severe , my Uncle, whom had AR, was told that surgery was better done sooner rather than later for the best level of recovery. Delays allow more deterioration , so in this case , you need to see yourself just as important as any other heart patient out there.
I'd get on the phone asap , remind them of the length of delay and request the earliest appointment possible in the New Year.
It's a shock, I know , but you have survived and come out stronger before so I'm sure you will do so this time too.
And like you say , when things settle and you have more knowledge about the condition and your treatment you do begin to feel more calm and accept things.
Thanks. If I haven't heard anything by end of January I will get in touch with GP. Until a couple of weeks ago nothing untoward had shown up. I think the ultrasound result changes everything and it won't be acceptable to wait another six months! Sadly people are dying in my province now because they are not receiving timely care. Even ambulances are not showing up for many hours and there are people who have died while waiting. I live close to a hospital, but you are more likely than not to catch covid if you go there. So this is not a good time nor a good place to have the potential for an emergency. It's really quite appalling. When I was a young woman I would be willing to bet that we had the best health care in Canada, newly established medicare. Been downhill pretty much since the 90s when a premier decided we didn't need to train so many doctors because there were plenty (ignoring fact that most of them were boomer age and would retire in droves in a few years) and now we reap the rewards. He also delisted a number of minor procedures so people would have to pay. Interesting that he was himself a family doctor (much disliked by his co-workers because of his imperious better-than-thou attitude).
I obviously can't advise on your individual situation, but just to relate my personal experience with aortic regurgitation, if this provides some reassurance to you.
I 1st experienced symptoms in late 2018 and was diagnosed with mild to moderate aortic regurgitation in early 2019. I am somebody who exercises quite intensely (cycling & swimming). The advice from my GP was to carry on doing what I normally do. Which I have.
A follow up Echo in early 2021 showed no worsening of my condition. Other than occasional heart flutters, which were disconcerting at 1st but I soon got used to, the condition doesn't unduly bother me and I am still able to cycle the hilly roads around where I live.
So just to say, your condition may not necessarily worsen significantly enough to require surgery or impinge on your lifestyle. Hopefully you will get more details on your diagnosis from your medical professionals soon.
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