Waiting for surgery

JH51 · Nov 27, 2024

I'm currently on a waiting list for surgery ( valve and bypass). I've been in the 'moderate' range for a few years, but was slightly shocked to be told by the surgeon at my consultation last month that my stenosis was severe, & without intervention, my life expectancy would be 1-2 years. Still reeling from this news to be honest, as my only real symptoms are tiredness and occasional bouts of lightheartedness.

My operation will happen in the next two months, so everything is in place, but my question for the community is this: should I be concerned about increasing symptoms; will they get worse/ more frequent over the next few weeks, & are they caused by the stenosis or the artery disease? I will admit to be a bit worried-l'm 73,& otherwise reasonably well.

I’m also hyper alert to the slightest hint of any pain or twinges in and around my chest,& panic can set in when these happen in those dark hours around 4am when I wake. So far, I can convince myself that these are muscle related, especially when paracetamol and or ibuprofen do help.

I’m not sure what any pain from the stenosis or diseased arteries should feel like , as any I’m feeling comes and goes,& is mild..

I’ll be glad when I get the call: I’ve never thought of myself as anxious, but I guess this is the biggest challenge I’ve had to deal with, so who knows?

Thanks in advance for any and all help or comments

John

dornole · Nov 27, 2024

Hi there, my mitral stenosis got severe this year after 22 years moderate (post repair) and I had mitral valve replacement, tricuspid repair, maze procedure, left atrial appendage ligation on 10/16. Then a pacemaker a few days later.

In many years of stenosis I never had any pain. Even when the stenosis was very severe (pre repair in 2002) I had severe dry cough when lying down and coughing up blood, shortness of breath (had to rest twice to go upstairs) but NO chest pain. This time in the run up to surgery I only had subtle fatigue UNLESS I was having an afib with RVR episode then the fatigue and shortness of breath made it tough to even walk a few feet to go to the mailbox.

It doesn’t seem like it’s common for people to have a rapid crash like you are fearing while waiting a couple months for valve surgery. My team had me start practicing breathing exercises and various relaxation techniques several weeks prior to surgery. This was a good idea because when I needed to do them post surgery in the hospital I already had that toolkit and experience. Maybe that’s an idea that could help you.

Remember they are seeking to operate at the right time so you DON’T get debilitating symptoms. Chances are pretty good that you'll just roll along pretty much how you are till your surgery date. If things get alarming they’ll move you up.

Hang in there

dornole · Nov 27, 2024

Just re read and see you’re waiting for scheduling call - that was tough for me also. But I was told by both my surgeon and a second opinion “if you weren’t having these afib episodes and that TIA we would be fine waiting 6-9 months to schedule with severe stenosis.” So to them the date 6 weeks after the decision to proceed to surgery WAS expedited. Even though I was very much “cut me now!!”

3mm · Nov 27, 2024

JH51 said:
my question for the community is this: should I be concerned about increasing symptoms; will they get worse/ more frequent over the next few weeks, & are they caused by the stenosis or the artery disease?

As dornole said in their reply, you'll be ok until your surgery. I agree the wait is hard. The wait will seem shorter if you keep busy.

Consider how you will perform your normal daily activities after surgery. You may want to move some kitchen tools, food, etc., to more convenient locations for a few months after surgery.

Will you have a sternotomy? Consider weight restrictions after surgery

Chuck C · Nov 27, 2024

JH51 said:
Still reeling from this news to be honest, as my only real symptoms are tiredness and occasional bouts of lightheartedness.

I believe that you mean lightheadedness. Lightheartedness might be a symptom of a glass or two of wine, but not heart or valve disease.

JH51 said:
should I be concerned about increasing symptoms; will they get worse/ more frequent over the next few weeks, & are they caused by the stenosis or the artery disease?

Assuming you meant to say lightheadedness, this is likely due to the aortic stenosis. The tiredness could probably be from either the heart disease or stenosis, but I would expect that it is more likely the stenosis.

It is possible that your symptoms could get worse over the next two months. Progression is usually slow, but it can speed up once things are severe. It is important to let your surgeon's office know if your symptoms become more severe, for example, if things advance from lightheadedness to fainting spells aka syncope. If things do become more severe, they might move your date up, so it is important to communicate with them in such event.

The good news is that your surgeon knows your condition and is taking it seriously and has you on the waiting list, with surgery relatively soon. You should be just fine for the next couple of months of waiting, but do make sure to communicate with your surgeon's office if you believe symptoms are becoming more severe.

Wishing you the very best of luck with your procedure and please keep us posted.

JH51 · Nov 28, 2024

JH51 said:
I'm currently on a waiting list for surgery ( valve and bypass). I've been in the 'moderate' range for a few years, but was slightly shocked to be told by the surgeon at my consultation last month that my stenosis was severe, & without intervention, my life expectancy would be 1-2 years. Still reeling from this news to be honest, as my only real symptoms are tiredness and occasional bouts of lightheartedness.

My operation will happen in the next two months, so everything is in place, but my question for the community is this: should I be concerned about increasing symptoms; will they get worse/ more frequent over the next few weeks, & are they caused by the stenosis or the artery disease? I will admit to be a bit worried-l'm 73,& otherwise reasonably well.

I’m also hyper alert to the slightest hint of any pain or twinges in and around my chest,& panic can set in when these happen in those dark hours around 4am when I wake. So far, I can convince myself that these are muscle related, especially when paracetamol and or ibuprofen do help.

I’m not sure what any pain from the stenosis or diseased arteries should feel like , as any I’m feeling comes and goes,& is mild..

I’ll be glad when I get the call: I’ve never thought of myself as anxious, but I guess this is the biggest challenge I’ve had to deal with, so who knows?

Thanks in advance for any and all help or comments

John

Doh. Just re read my post,& can’t believe the autocorrect ‘lightheartedness’

I did of course mean lightheaded….
As a postscript, I went to my GP last week for BP related checks,& she’s 99% convinced that the symptoms ( dizziness,achey arms, headaches) are a side effect of a new BP lowering drug I was put on,& in fact she may be right as I’ve not had these now for a week or more:
Thanks all for the encouragement … really does help .

Chuck C · Nov 28, 2024

JH51 said:
As a postscript, I went to my GP last week for BP related checks,& she’s 99% convinced that the symptoms ( dizziness,achey arms, headaches) are a side effect of a new BP lowering drug

Yes, BP meds can give those symptoms.

Also, in that you have severe aortic stenosis, I'm not sure that her 99% confidence level that it was all due to the BP med is warranted. There could be more than one variable at play here and, importantly, aortic stenosis can be causal for high blood pressure. For example, due to the difficulty of your heart getting sufficient blood to the body's vital organs through such a narrowed aortic opening, there is often a feedback loop within the body to increase the BP in order to get sufficient blood delivered.

It gets a bit tricky when high BP is due to aortic stenosis, and your GP should be in contact with your surgeon regarding any adjustments to your blood pressure meds and whether it is appropriate to be on BP meds. Put another way, if your brain is telling your system to increase BP because it is not getting enough blood, artificially lowering your BP with medication could cause the brain to not get sufficient blood flow. When the brain does not get enough blood and oxygen, lightheadedness, dizziness and fainting can occur.

If you are interested in reading on this, please see link below:

How Is Aortic Stenosis Connected to Your Blood Pressure?

https://www.healthline.com/health/aortic-stenosis-and-low-blood-pressure#heart-and-blood-pressure

ElGato65 · Dec 13, 2024

JH51 said:
I'm currently on a waiting list for surgery ( valve and bypass). I've been in the 'moderate' range for a few years, but was slightly shocked to be told by the surgeon at my consultation last month that my stenosis was severe, & without intervention, my life expectancy would be 1-2 years. Still reeling from this news to be honest, as my only real symptoms are tiredness and occasional bouts of lightheartedness.

My operation will happen in the next two months, so everything is in place, but my question for the community is this: should I be concerned about increasing symptoms; will they get worse/ more frequent over the next few weeks, & are they caused by the stenosis or the artery disease? I will admit to be a bit worried-l'm 73,& otherwise reasonably well.

I’m also hyper alert to the slightest hint of any pain or twinges in and around my chest,& panic can set in when these happen in those dark hours around 4am when I wake. So far, I can convince myself that these are muscle related, especially when paracetamol and or ibuprofen do help.

I’m not sure what any pain from the stenosis or diseased arteries should feel like , as any I’m feeling comes and goes,& is mild..

I’ll be glad when I get the call: I’ve never thought of myself as anxious, but I guess this is the biggest challenge I’ve had to deal with, so who knows?

Thanks in advance for any and all help or comments

John

I understand what you are going through. I had to wait and go through a ton of tests before my surgery. I'm recovering now...it hasn't always been easy. I'm here if you want to talk.

ElGato65 · Dec 13, 2024

I understand what you are going through. I had to wait and go through a ton of tests before my surgery. I'm recovering now...it hasn't always been easy. I'm here if you want to talk. My symptoms did get a little worse before surgery. I'm not sure if that was because I was more mindful of them of if they really did get worse.

ElGato65 · Dec 13, 2024

Anyone who wants to talk feel free to contact me.

LondonAndy · Dec 14, 2024

I do believe the time before surgery is the worst - it is fear of the unknown, and is entirely understandable.

In my case, 10 years ago, the symptoms progressed to shortness of breath on exertion, caused by the heart struggling to pump blood through the almost-blocked valve. Even that period lasted months, as I went through a series of tests to diagnose the condition. So you should be fine given how soon your surgery is scheduled - just try not to get run over by a bus in the meantime!

TOP TIP: take ear plugs with you to hospital! And probably an eye mask as well - I remain amazed at how little respect hospitals have for the benefits of sleep, particularly after surgery, with banging and crashing of one sort or another from early morning.

Waiting for surgery

Help Support Valve Replacement Forums:

JH51

New member

dornole

VR.org Supporter

dornole

VR.org Supporter

3mm

VR.org Supporter

Chuck C

VR.org Supporter

JH51

New member

Chuck C

VR.org Supporter

How Is Aortic Stenosis Connected to Your Blood Pressure?

ElGato65

New member

ElGato65

New member

ElGato65

New member

LondonAndy

VR.org Supporter

Latest posts

Waiting for surgery

Help Support Valve Replacement Forums:

New member

VR.org Supporter

VR.org Supporter

VR.org Supporter

VR.org Supporter

New member

VR.org Supporter

How Is Aortic Stenosis Connected to Your Blood Pressure?​

New member

New member

New member

VR.org Supporter

Join the conversation!

Join today and get all the highlights of this community direct to your inbox. It's FREE!

How Is Aortic Stenosis Connected to Your Blood Pressure?