Whats normal

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Leah d

Member
Joined
Oct 25, 2021
Messages
8
Hi first post x please bare with me x been feeling pretty unwell for a good while x went to a and e 4 wks ago x thought I was dying x long story short theyve said its aortic stenosis x will need a valve replacement x told me I was fast tracked to cardiologist and sent me on my way x phoned cardiologist x was told it will be months before I'm seen x meanwhile I'm exhausted x sleepy x suffering palpations throughout my body x pains in my arms legs breast back neck x out of breath doing the slightest thing x I guess I'm just asking is this normal x should I return to a and e x should I be working a full day x I'm self employed so not looking for a skive x I've also only just turned 40 and have 3 young kids and I'm terrified x I dont smoke or drink x I'm a size 10/12 x I'm usually 100 mph x I cant believe they can hit you with a bombshell like that then leave you to it x
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
9,360
Location
Queensland, OzTrayLeeYa
Hi Leah and welcome to the forum

not sure what all the x are for in your post, but it makes it pretty hard to read.

long story short they've said its aortic stenosis x will need a valve replacement x told me I was fast tracked to cardiologist and sent me on my way x phoned cardiologist x was told it will be months before I'm seen
that sounds like a long delay.

I guess the first thing is don't be terrified as it will all just unfold over time. I appreciate that the shock of learning is quite a hit, but just keep in mind this:

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So just keep your doctor in the loop, inform the doctor if things get worse. Sometimes all the other symptoms you mentioned are stress related.

I guess I'm just asking is this normal. should I return to a and e. should I be working a full day.
if your work isn't hard physical work you should be ok ... just use your body as a guide, rest when you need to

I'm a size 10/12. I'm usually 100 mph. I cant believe they can hit you with a bombshell like that then leave you to it x
the good thing is we live in an age where this doesn't mean you are dead in a few months (as it once did) and you will be able to get treatment (it will mean a surgery, but I've already had three of those in my life) and be able to start life again. Things will be a little different, but then that's how life is: its about changes and adapting to them.

I love the Stoics for calming

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Words written thousands of years ago and show that humans are still dealing with life and facing the same things.

Best Wishes
 
Last edited:

drleng

Active member
Joined
Oct 22, 2021
Messages
32
Hi first post x please bare with me x been feeling pretty unwell for a good while x went to a and e 4 wks ago x thought I was dying x long story short theyve said its aortic stenosis x will need a valve replacement x told me I was fast tracked to cardiologist and sent me on my way x phoned cardiologist x was told it will be months before I'm seen x meanwhile I'm exhausted x sleepy x suffering palpations throughout my body x pains in my arms legs breast back neck x out of breath doing the slightest thing x I guess I'm just asking is this normal x should I return to a and e x should I be working a full day x I'm self employed so not looking for a skive x I've also only just turned 40 and have 3 young kids and I'm terrified x I dont smoke or drink x I'm a size 10/12 x I'm usually 100 mph x I cant believe they can hit you with a bombshell like that then leave you to it x
Hi Leah, it's great you have found this forum. You won't feel so alone as all of us here have been through that frightening journey and most have emerged unscathed. Pellicle will reply your worries in a flash ;-)
It is indeed a shock to be told you have a heart valve problem (and require open heart surgery!) after being slim and fit all your life. The heart has a remarkable ability to compensate for reduced output until it can't so it isn't unusual to be diagnosed till late i.e. when you have severe symptoms.
I received a rude shock of being told I had a bicuspid valve with a 5 cm dissected aortic aneurysm when I collapsed in the gym with severe chest pain at the age of 47. I'm just lucky to be alive after open heart surgery - that was in 2017.

I'm sorry you have to wait so long to see a cardiologist for a proper assessment.
In the meantime, you need to slow down and listen to your body and tailor your physical activities to what you can do without passing out or getting chest pain. And be careful about carrying young children in case you faint. Of course, don't hesitate to present yourself to A&E if your symptoms are progressing rapidly - if severe, I'm sure you'll get cardio assessment pronto.
I hope you are not in the position of having to work non-stop to feed the family.

Take care and reach out to us here if you ever need moral support or other types of advice. Some members here know more than your average doctor :)

And you may want to reach out to members here who may be able to recommend you a good hospital depending on where you are.
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
1,294
meanwhile I'm exhausted x sleepy x suffering palpations throughout my body x pains in my arms legs breast back neck x out of breath doing the slightest thing

Hi Leah and welcome to the forum.

Although it may not seem like good news, the fact that your medical provider has diagnosed your aortic stenosis is actually a good thing. Many don't find out about their stenosis until they have an event and there is a solution for your diagnosis- surgery, with excellent outcomes following surgery. Facing valve surgery can seem very scary, but we have all been through it and, while it is not a walk in the park, it is not at all as terrible as it might sound. It is very likely that you will feel much better following your surgery.

Given that you have been diagnosed with aortic stenosis, these symptoms which you describe should be evaluated as soon as possible to determine if they are being caused by your stenosis and whether your symptoms are classified as severe. I would suggest calling the cardiologist's office back and make it very clear that you are having these symptoms. If they are aware of this they may move up your evaluation date. You indicated that you were told that you were being fast tracked to the cardiologist initially, presumably by your physician or the ER unit. You should also contact whomever it was that told you that they were fast tracking you to cardiology and let them know that you were not "fast tracked" but are being made to wait months. Perhaps they can do something to help fast track your cardiology appointment, as that was apparently their intent following their initial evaluation of you.

Sometimes the urgency is not properly communicated in a referral. Ideally, you should be evaluated and considered for surgery soon, not in months. I understand that depending on where you live that they still may not see you for months, but I would push to be evaluated by a cardiologist soon and I would be persistent about it.

From the link provided below:

Symptoms of aortic stenosis may include:

Chest pain

Rapid, fluttering heartbeat

Trouble breathing or feeling short of breath

Feeling dizzy or light-headed, even fainting

Difficulty walking short distances

Swollen ankles or feet

Difficulty sleeping or needing to sleep sitting up

Decline in activity level or reduced ability to do normal activities



Please keep us posted.
 

MdaPA

Well-known member
Joined
Jul 8, 2020
Messages
226
they've said its aortic stenosis x will need a valve replacement x told me I was fast tracked to cardiologist and sent me on my way x phoned cardiologist x was told it will be months before I'm seen
Leah,
It could be worse, they could have fast tracked you to a surgeon instead of a Cardio so it appears you may have some time. Do follow Chuck C's suggestion and call back that Cardiologist's office as well as ask whomever referred you there to have them make a call as well. You should also reach out to family and friends to see if they recommend a Cardio (i.e. don't wait for the other Cardio to call you back). You can also look for a Cardio that is affiliated with a hospital that specializes in heart valve surgery if there is one near you (here is a list in the U.S. Heart Valve Clinics - Cardiac Centers With Valve Surgery Specialties).

long story short theyve said its aortic stenosis x will need a valve replacement
Make sure you have any reports and test results from the ER and bring them with you.
 
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