17 year old mechanical valve

[Sassy20]

Hi All. I’m a new member and I had a mechanical aortic valve replacement done 17 years ago. A bit over 12 months ago I started getting very short of breath on exertion and I thought my valve was causing it. After numerous tests I have been told that the valve is ok and my lungs are ok but I am still experiencing shortness of breath and am wondering if any other members have had a similar situation. Thanks

 

[pellicle]

no experience with that, but have you perhaps had a COVID infection which may have been mild but still contributed to this?

 

[Sassy20]

no experience with that, but have you perhaps had a COVID infection which may have been mild but still contributed to this?

I don’t think so, I live out in country South Australia and have been tested a few times for covid. The shortness of breath comes and goes which is similar to what happened when I was diagnosed with aortic stenosis. I have had a transthoracic echocardiograph which didn’t show a problem. I have always been careful with checking INR and giving the time I’ve had the valve it would be more likely to be pannus rather than thrombosis affecting the valve.

 

[pellicle]

Hey,

I don’t think so, I live out in country South Australia and have been tested a few times for covid.

well I live in rural Queensland (OzTrayLeeYa) and there's been a quite a few cases. Depending on how the test was done (say, a RAT) it will not report if you've had it and fought it off.

However given you've not been exposed I've got NADA, and can only say glad the valve is checking out ok and its really only something your Dr can inform you about (with some more tests perhaps)

Best wishes

 

[dick0236]

Hi All. I’m a new member and I had a mechanical aortic valve replacement done 17 years ago. A bit over 12 months ago I started getting very short of breath on exertion and I thought my valve was causing it. After numerous tests I have been told that the valve is ok and my lungs are ok but I am still experiencing shortness of breath and am wondering if any other members have had a similar situation. Thanks

A few years ago, when I was in my early 80's, I began to notice that I was often getting short of breath after only mild exertion. Turns out it has little if anything to do with my valve or lungs. After testing a few months ago my Cardiologist diagnosed the problem as "Pulmonary Hypertension"......an inability of the right side of my heart to deliver enough oxygenated blood to the lungs. It is a problem shared by many folks, young or old, heart valve surgery or not. I am now learning to live with an external supply of oxygen. Be advised that my thoughts......and a $ will buy you a cup of coffee. My Internist missed the problem.....but my Cardio picked it up.

Glad you found this forum......lots of good info and support here.

 

[pellicle]

Morning

and giving the time I’ve had the valve it would be more likely to be pannus rather than thrombosis affecting the valve.

Given you wrote:

After numerous tests I have been told that the valve is ok and my lungs are ok

Why would you think pannus?
Especially when you add

have had a transthoracic echocardiograph which didn’t show a problem. I have always been careful with checking INR

You've had some good tests which would clarify any obstruction of the valve, and didn't find any.

So it must be something else... They'll find it.

 

[pellicle]

Morning Dick

I am now learning to live with an external supply of oxygen. Be advised that my thoughts......and a $ will buy you a cup of coffee.

that's not good news (but better than the alternative). If I lived near by I'd take you up on the coffee and perhaps some nice cake too.

My Internist missed the problem.....but my Cardio picked it up.

you raise an interesting point there (about medical people), and as @Sassy20 comes from South Oz (as does another member here Again) I would say to Sassy definitely go get second opinions. @Agian had a number of problems with ****** low standards in Adelaide (so rural will probably be worse than @Warrick 's worst New Zealand stories...)

PS: some humour about Adelaide, South Australia


... and for balance I come from the Goldie

 

[Sassy20]

A few years ago, when I was in my early 80's, I began to notice that I was often getting short of breath after only mild exertion. Turns out it has little if anything to do with my valve or lungs. After testing a few months ago my Cardiologist diagnosed the problem as "Pulmonary Hypertension"......an inability of the right side of my heart to deliver enough oxygenated blood to the lungs. It is a problem shared by many folks, young or old, heart valve surgery or not. I am now learning to live with an external supply of oxygen. Be advised that my thoughts......and a $ will buy you a cup of coffee. My Internist missed the problem.....but my Cardio picked it up.

Glad you found this forum......lots of good info and support here.

A few years ago, when I was in my early 80's, I began to notice that I was often getting short of breath after only mild exertion. Turns out it has little if anything to do with my valve or lungs. After testing a few months ago my Cardiologist diagnosed the problem as "Pulmonary Hypertension"......an inability of the right side of my heart to deliver enough oxygenated blood to the lungs. It is a problem shared by many folks, young or old, heart valve surgery or not. I am now learning to live with an external supply of oxygen. Be advised that my thoughts......and a $ will buy you a cup of coffee. My Internist missed the problem.....but my Cardio picked it up.

Glad you found this forum......lots of good info and support here.

dick0236
Thanks for that info, I’ll see my cardiologist in September and in the meantime have a coffee and try to relax

 

[Sassy20]

Morning

Given you wrote:

Why would you think pannus?
Especially when you add



You've had some good tests which would clarify any obstruction of the valve, and didn't find any.

So it must be something else... They'll find it.

pellicle. Thanks for your thoughts. My cardiologist said he was checking for pannus and after reading up on it seemed a likely cause, but you’re right, I have had some good tests so will try to stay relaxed.

 

[pellicle]

Hi

and after reading up on it seemed a likely cause,

dunno what you read but:

https://pubs.rsna.org/doi/full/10.1148/radiol.2015142400

The incidence of pannus-related prosthetic valve dysfunction is known to be 0.1%–0.6% per patient-year for valves in the aortic position, but pannus is presumed to be higher in frequency than previously reported, as it is found even in asymptomatic patients​

so not likely but possible

this aritcle:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3493295/
discusses recurrence (which is usually trated with a catheter) but reading it would make it clear that it is easy to identify with the sorts of scans you've had.

So I'm inclined towards the view that its not likely to be

1. your valve
2. pannus
3. throbosis obstructions from improper INR management.

2 and 3 are treatable with transvascular catheter procedures.

Speaking for myself when I've had a few weeks of not cycling I feel tightness in the chest on the deep breathing involved when I cycle (I do it to train, not to just tootle thru the park) but this clears up within 2 days. Could it just be that you're not training much?

Do you have a Heart Rate monitor type watch? What happens when you walk up stairs or such. A cheap and worth purchase is such a smart watch to just see. Everything on the spectrum from an eBay Cheapie to a Garmin or (forgive me) an Apple watch (washes my mouth out).

I would also consider a second opinion.

But overall ... don't worry, that'll just increase the symptoms. Lastly some 2000 year old advice from Marcus Aurelius:

Best Wishes

 

[Sassy20]

https://pubs.rsna.org/doi/full/10.1148/radiol.2015142400[/URL]

The incidence of pannus-related prosthetic valve dysfunction is known to be 0.1%–0.6% per patient-year for valves in the aortic position, but pannus is presumed to be higher in frequency than previously reported, as it is found even in asymptomatic patients​

so not likely but possible

this aritcle:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3493295/
discusses recurrence (which is usually trated with a catheter) but reading it would make it clear that it is easy to identify with the sorts of scans you've had.

So I'm inclined towards the view that its not likely to be

1. your valve
2. pannus
3. throbosis obstructions from improper INR management.

2 and 3 are treatable with transvascular catheter procedures.

Speaking for myself when I've had a few weeks of not cycling I feel tightness in the chest on the deep breathing involved when I cycle (I do it to train, not to just tootle thru the park) but this clears up within 2 days. Could it just be that you're not training much?

Do you have a Heart Rate monitor type watch? What happens when you walk up stairs or such. A cheap and worth purchase is such a smart watch to just see. Everything on the spectrum from an eBay Cheapie to a Garmin or (forgive me) an Apple watch (washes my mouth out).

I would also consider a second opinion.

But overall ... don't worry, that'll just increase the symptoms. Lastly some 2000 year old advice from Marcus Aurelius:

View attachment 888526
Best Wishes

Thanks for your thoughts. I am 74 and used to walk a lot but have cut back since the shortness of breath. After I had my valve replacement 17 years ago I felt really fit up until A bit over twelve months ago. My daughter used to tell me I was fitter than her. When I started having all these tests they said my heart rate was too high so they changed my blood pressure medication and heart rate is good now. I do have a smart watch and I keep an eye on my heart rate. Ok that’s enough whinging from me.

 

[Eva]

Check your oxygen level more often. You can buy a finger oximeter from any pharmacy, or preferably O2 ring oxygen monitor that monitors your oxygen all day and transfers results to iPhone. I bought mine from Wellue O2Ring Smart Ring Pulse Oximeter. Overnight Tracking..
I have shortness of breath and I always complained to my doctors that mainly at night I woke up feeling like gasping for air. No one paid attention . Now I know my oxygen level drops during the day and mostly at night.
Luckily, my new sleep doctor believed me especially when I showed him the graph on my iPhone.
so, he ordered a new sleep study and to monitor my oxygen level in addition to monitoring apneas.
here’s a sample of the graph:

 

[dornole]

Is there any chance it could be related to anxiety? That happened to me one time, even went in for a treadmill echo and absolutely no problem -- but to my perception I was really short of breath just from walking down the block and concerned something was wrong. I think it might have been triggered by perimenopause and hormone swings. It can be really powerful. I agree with the O2 monitoring idea. Another thing my sister (a doc) had us do during Covid if concerned is blow up a balloon and watch for decreased ability to do that.

 

[Sassy20]

Check your oxygen level more often. You can buy a finger oximeter from any pharmacy, or preferably O2 ring oxygen monitor that monitors your oxygen all day and transfers results to iPhone. I bought mine from Wellue O2Ring Smart Ring Pulse Oximeter. Overnight Tracking..
I have shortness of breath and I always complained to my doctors that mainly at night I woke up feeling like gasping for air. No one paid attention . Now I know my oxygen level drops during the day and mostly at night.
Luckily, my new sleep doctor believed me especially when I showed him the graph on my iPhone.
so, he ordered a new sleep study and to monitor my oxygen level in addition to monitoring apneas.
here’s a sample of the graph:

Thanks for your ideas, I will get myself an oximeter.

 

[carolinemc]

Is there any chance it could be related to anxiety? That happened to me one time, even went in for a treadmill echo and absolutely no problem -- but to my perception I was really short of breath just from walking down the block and concerned something was wrong. I think it might have been triggered by perimenopause and hormone swings. It can be really powerful. I agree with the O2 monitoring idea. Another thing my sister (a doc) had us do during Covid if concerned is blow up a balloon and watch for decreased ability to do that.

Have you mentioned the shortness of breath with the cardio? You should. Could be nothing or could be something. Get it checked out.

 

[Sassy20]

Have you mentioned the shortness of breath with the cardio? You should. Could be nothing or could be something. Get it checked out.

Re anxiety, I suppose anything is possible, although I’m not aware of feeling anxious at the time. I’ve had a heap of tests done on my lungs and also an echocardiogram and the treadmill one which didn’t show anything. Before I had the replacement done, I only had one episode of extreme shortness of breath and a couple times while exercising I felt a bit more breathless than usual. I started riding my bicycle then one day I felt a funny feeling in my chest, I later vomited and next morning I fainted and cracked my head open. When I had the stitches removed my doctor checked my heart and told me I had a heart murmur so referred me to a cardiologist and within a fortnight I had the aortic replacement valve done. So I am aware that I didn’t have continual shortness of breath back then and for about 16 years I was as fit as a fiddle until I gradually started getting short of breath which slowly worsened over the last 12 months, although I still don’t have it continually.

 

[carolinemc]

Re anxiety, I suppose anything is possible, although I’m not aware of feeling anxious at the time. I’ve had a heap of tests done on my lungs and also an echocardiogram and the treadmill one which didn’t show anything. Before I had the replacement done, I only had one episode of extreme shortness of breath and a couple times while exercising I felt a bit more breathless than usual. I started riding my bicycle then one day I felt a funny feeling in my chest, I later vomited and next morning I fainted and cracked my head open. When I had the stitches removed my doctor checked my heart and told me I had a heart murmur so referred me to a cardiologist and within a fortnight I had the aortic replacement valve done. So I am aware that I didn’t have continual shortness of breath back then and for about 16 years I was as fit as a fiddle until I gradually started getting short of breath which slowly worsened over the last 12 months, although I still don’t have it continually.

You do not have to have shortness of breath all the time. Your heart murmur has a swooshing sound, and the louder it is, the more likely there was a defect. Glad they caught it before you had a crisis. You were a might lucky person, Most ER doc never catch murmurs. glad you ae doing better. I had enlarged heart before surgery, was in bad shape. Doing tons better, just the irregular heartbeat, which many can live with.

 

[Jacque]

Hi there,

I'm 15 years post-op (2007) from my bicuspid aortic valve (BAV). I had my chest opened 3 times in 4 days (first valve clotted, then excessive bleeding). In 2003, I had a procedure to fix a hole in my heart (separate issue). I also have Factor V Leiden (FVL), a clotting disorder.

I have had shortness-of-breath (SOB) for the most part since my 2007 BAV surgery especially when I go up a hill, several flights of stairs, or now when I do a twice weekly Zoom weight lifting class. I also was told it is not related to my valve or heart. I have a mid-ascending aortic aneurysm that was discovered 14 years ago (2008) and the aneurysm was caused by my BAV surgery. My valve does have extra tissue, most likely, rather than clots. They are monitoring both annually. Unfortunately, my wonderful cardiologist just retired and now I'll have to find a new one.

I am going to a physical therapist (PT) and a speech therapist (ST). The PT noted that my rib cage is a little off, especially the right side. Through trial and error (since 2019 when I noticed i could breathe easier after bending sideways in the recliner), I have tried different compression bands wrapped around my upper ribs. First I had a stiff 8" one, then I used a 4" wide and a 6" wide ace bandage. The stiff one didn't work but the soft ones do. I just found this out on 9/19/22 when the PT tried it.

Here is the compression band I am using now that doesn't ride up like the ace bandages (https://www.amazon.com/dp/B094C7WV6G?psc=1&ref=ppx_yo2ov_dt_b_product_details). I wear it directly below my bra line just like the last photo shows you shouldn't wear it . It helps me get through my Zoom class and several flights of stairs without SOB. It's a fairly cheap band so perhaps worth a try?

I just learned in the last couple weeks, that the ST thinks it's my Vagus Nerve. So I am doing deep diaphragmatic breathing; I go back on 10/27 and will report back any more info. I get from the ST. Originally, the ST thought it was Paradoxical Vocal Fold Dysfunction (PVFD) but I had a nasal endoscopy at an ENT and found out that wasn't the case.

An easy way to test for PVFD at home is to take a regular straw and blow out and place the straw in a glass of water and blow bubbles. Then sit back up. Now do the same thing but hum also. If you are not able to blow bubbles while humming, go to an ENT and have them check for PVFD. Also try it with a smaller straw like those used for coffee stirrers.

I hope some of this may help you. Please keep us updated and I will get back on here when I hear anymore info.

 

[Jacque]

I need to add to my previous post. Sassy20, with your shortness-of-breath (SOB), are you on Metoprolol? Once I got off that, it helped very quickly.

Another idea, do you have any problems with any of your ribs? Are you also coughing?

After doing research, I discovered that my SOB/coughing might be caused by Slipped/Slipping Rib Syndrome. I have had rib issue/pain for 27 1/2 years after giving birth to my daughter. The doctor said it was a floating rib and there was nothing I could do about it.

My rib ‘popping out’ (lower right by the sternum) can happen at anytime for me, when I bend down to tie my shoes or twisting. It ‘catches’ on my muscle and it’s a 9/10 pain. It will eventually ‘release’ and usually go away within 5 minutes, but sometimes it takes longer. Sometimes that area will be sore for the next day. It’s been consistently happening but not constantly happening.

Slipped Rib does not show up on X-ray, MRI, or CAT, it's diagnosed with a Dynamic Ultrasound with a radiologist experienced with Slipped Rib Syndrome. I’m trying to get a referral to get a Dynamic Ultrasound done at the Mayo.

Maybe someone else is going through something similar with SOB with no cardio cause so I thought I would post this info. None of the physical therapists at my clinic had ever heard of it.

Slipped/Slipping Rib Syndrome:
Slipped rib syndrome is an underdiagnosed and often poorly understand condition of the costal arch or margin. It's caused by excessive movement of the anterior cartilaginous part of the lower ribs as they ‘join’ the costal arch. The excessive movement or hypermobility of the anterior part of the ribs, typically the 8th, 9th or 10th rib is probably caused by either congenital or acquired (following a minor injury or repetitive strain) disruption of the fibrous junctions of these 'false' ribs at the costal arch, allowing the tips of the ribs to move or slip under the rib above. The movement causes lower rib or upper abdominal pain. It causes difficulty breathing and coughing.

CAUSES AND SYMPTOMS:
National Library of Medicine: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7901126/Rib Injury Clinic: https://www.ribinjuryclinic.com/con...a radiologist,of the rib tip affectedNATIONAL

 

[carolinemc]

I need to add to my previous post. Sassy20, with your shortness-of-breath (SOB), are you on Metoprolol? Once I got off that, it helped very quickly.

Another idea, do you have any problems with any of your ribs? Are you also coughing?

After doing research, I discovered that my SOB/coughing might be caused by Slipped/Slipping Rib Syndrome. I have had rib issue/pain for 27 1/2 years after giving birth to my daughter. The doctor said it was a floating rib and there was nothing I could do about it.

My rib ‘popping out’ (lower right by the sternum) can happen at anytime for me, when I bend down to tie my shoes or twisting. It ‘catches’ on my muscle and it’s a 9/10 pain. It will eventually ‘release’ and usually go away within 5 minutes, but sometimes it takes longer. Sometimes that area will be sore for the next day. It’s been consistently happening but not constantly happening.

Slipped Rib does not show up on X-ray, MRI, or CAT, it's diagnosed with a Dynamic Ultrasound with a radiologist experienced with Slipped Rib Syndrome. I’m trying to get a referral to get a Dynamic Ultrasound done at the Mayo.

Maybe someone else is going through something similar with SOB with no cardio cause so I thought I would post this info. None of the physical therapists at my clinic had ever heard of it.

Slipped/Slipping Rib Syndrome:
Slipped rib syndrome is an underdiagnosed and often poorly understand condition of the costal arch or margin. It's caused by excessive movement of the anterior cartilaginous part of the lower ribs as they ‘join’ the costal arch. The excessive movement or hypermobility of the anterior part of the ribs, typically the 8th, 9th or 10th rib is probably caused by either congenital or acquired (following a minor injury or repetitive strain) disruption of the fibrous junctions of these 'false' ribs at the costal arch, allowing the tips of the ribs to move or slip under the rib above. The movement causes lower rib or upper abdominal pain. It causes difficulty breathing and coughing.

CAUSES AND SYMPTOMS:
National Library of Medicine: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7901126/Rib Injury Clinic: https://www.ribinjuryclinic.com/con...a radiologist,of the rib tip affectedNATIONAL

And you may want to consult your PC about this. Show the articles to the PC and have a nice talk about the possibilities of this syndrome. For coughing has many causes, not just the common cold.