My mvr story so far.

[Pete.C]

Hi, first time here, so here is my MVR story so far.

In June 2021 my Apple Watch warned me of possible atrial fibrillation, which at the time I had no idea was. I contacted my GP who put me on a ecg and found a murmur. Then booked in for 24 hr holter monitor and echocardiogram.

Results of which showed that I had mitral valve regurgitation, possible atrial fibrillation and a small hole in the heart. Then waited for the appointment to see the cardiologist which didn’t materialise for another six months. I was asymptomatic and fairly fit from cycling, some jogging and hiit workouts, when I met my cardiologist he said the valve leak was moderate to severe and I didn’t have afib and no need for any medication, which I thought was good news. I could go on doing what I had been doing and would just need monitoring every six months.

Though he was in fact looking at data that was 6 months old already. Six weeks later I have a fainting episode and admit myself to a&e where they try to bring my heart rate down from 175, after 5 or 6 hours they succeed. Now confirmed a fibrillation and put on warfarin and bisoprolol. After a further echocardiogram I am due to see my cardiologist next week. I have gone from being asymptomatic to out of breath climbing one flight of stairs, so nearly any sporting activity is not possible, I do manage the occasional round of golf. I am assuming it won’t be good news when I see the cardiologist and I will require surgery this time.

I am 65 years young, based in the UK.



Pete.

 

[ValveAdmin]

Welcome, Pete. Good folks will be along soon and you'll get a lot of responses and welcomes. What area of the U.K. you are in?

 

[dornole]

Wow that is sudden. I can relate to the one flight of stairs breathlessness from my mitral valve issues. Was glad to get that fixed. Take it easy until after your echo / consult next week to make sure you are not putting yourself at risk. Your fitness should stand you in good stead if you need to go to surgery.

 

[Pete.C]

Welcome, Pete. Good folks will be along soon and you'll get a lot of responses and welcomes. What area of the U.K. you are in?

Thank you, I am based in North Lincolnshire.

 

[Midpack]

Hi Pete!

Regarding mitral valve regurgitation, surgery to repair the valve (or replace it, if repair is not possible) will not be taken into consideration unless it is moderate/severe. As a matter of fact, slight/trivial mitral valve regurgitation is a common echocardiogram finding in healthy people.

Regards.

 

[Pete.C]

Hi Pete!

Regarding mitral valve regurgitation, surgery to repair the valve (or replace it, if repair is not possible) will not be taken into consideration unless it is moderate/severe. As a matter of fact, slight/trivial mitral valve regurgitation is a common echocardiogram finding in healthy people.

Regards.

Sorry, my mistake, it should read moderate to severe, I’ll edit that part.
I still don’t know the results of my second echocardiogram but the technician said it was worse than the previous test but he needed to check.

 

[DaveLee]

"Results of which showed that I had mitral valve regurgitation, possible atrial fibrillation and a small hole in the heart. Then waited for the appointment to see the cardiologist which didn’t materialise for another six months"

In 6 months you could of been DEAD. That's totally unacceptable. In my case from the time my GP found what could be a problem I was on the table in one week. Get a new GP and cardiologist both, they don't give a crap about you. This is your LIFE not a sore muscle, get a GP and cardiologist that CARE about you as a person not just a source of income.

Dont wait, I now have a pacemaker because the problem was not found soon enough. I had no symptoms, I was in for my 6 month checkup

Best of luck
Dave

 

[Pete.C]

"Results of which showed that I had mitral valve regurgitation, possible atrial fibrillation and a small hole in the heart. Then waited for the appointment to see the cardiologist which didn’t materialise for another six months"

In 6 months you could of been DEAD. That's totally unacceptable. In my case from the time my GP found what could be a problem I was on the table in one week. Get a new GP and cardiologist both, they don't give a crap about you. This is your LIFE not a sore muscle, get a GP and cardiologist that CARE about you as a person not just a source of income.

Best of luck
Dave

Thanks Dave,
Yes I realise this now, but at the time I was relieved not have to have surgery.
Since the last episode I have researched a lot more so am now a little more knowledgeable.
I am seeing the same cardiologist next Monday, i have also booked in to see one of the best cardiologists in the uk in the next couple of weeks.
The trouble is the NHS in the uk is such a slow moving machine and it’s difficult to get anything done quickly.

Pete.

 

[DaveLee]

Very good, I wish only the BEST for you.

When ever I go to a new doc for any reason, the first half of the first visit is an interview, face to face. If they wont agree to that, I find one that will. some times they forget which way the money flows but most of all they don't seem to care its your LIFE.

 

[Martin1962]

Hi Pete, welcome.

I too can relate to your story and am also in the UK (Norfolk). I had a heart murmur for several years which unfortunately was not monitored / followed up properly. My breathlessness in particular got steadily worse and last year an echocardiogram and other tests showed severe mitral valve regurgitation. I have to say that things moved quite swiftly after that and I had ohs to replace the valve in January this year. I am 60 years old. They tried to repair the valve first but this was unsuccessful and I ended up with a replacement (mechanical).

Have you had a blood test to measure BNP level? An elevated level over 400 should show how much strain there is on the heart and how quickly you might need further treatment. Mine was over 1300.

Good luck with your cardiologist. If you do need surgery I can recommend Mr Moorjani at Royal Papworth in Cambridge.

 

[Pete.C]

Hi Pete, welcome.

I too can relate to your story and am also in the UK (Norfolk). I had a heart murmur for several years which unfortunately was not monitored / followed up properly. My breathlessness in particular got steadily worse and last year an echocardiogram and other tests showed severe mitral valve regurgitation. I have to say that things moved quite swiftly after that and I had ohs to replace the valve in January this year. I am 60 years old. They tried to repair the valve first but this was unsuccessful and I ended up with a replacement (mechanical).

Have you had a blood test to measure BNP level? An elevated level over 400 should show how much strain there is on the heart and how quickly you might need further treatment. Mine was over 1300.

Good luck with your cardiologist. If you do need surgery I can recommend Mr Moorjani at Royal Papworth in Cambridge.

Thank you Martin,

No, I can’t find a reference to a BNP test in my records, something else I will have to ask about next week.

Pete.

 

[Chuck C]

Welcome to the forum Pete and sorry to hear that things have progressed so quickly.

Though he was in fact looking at data that was 6 months old already.

That's terrible. A lot can happen in 6 months and what if your imagery warranted immediate surgery? My last 3 echos were followed up with my cardiologist appointment about 90 minutes after the echo was taken. Ideally it should be within a couple of weeks.

The trouble is the NHS in the uk is such a slow moving machine and it’s difficult to get anything done quickly.

Sure seems that way to me.

I am assuming it won’t be good news when I see the cardiologist and I will require surgery this time.

I expect that you are probably correct about this. Fainting (syncope) is a very serious symptom and typically means surgery should not be delayed.

Glad that you are seeing your cardiologist soon this time and that you've booked another for a second opinion. If it is determined that you need surgery, do whatever you can to get in there and get it done soon. Easier said that done, but given the delays we've heard about, you may need to keep pushing. There is a thread out there somewhere about someone who urgently needed valve surgery and was being treated like a number by the NHS with long delays. There were a couple of good suggestions from others familiar with the system as to how one might put pressure to speed things up.

Please keep us updated when you get the results after you meet with your cardiologist.

 

[pellicle]

Hey Pete, welcome aboard

I am 65 years young, based in the UK.
Pete.

sounds like you're in good hands. I hope surgery progresses smoothly when it happens and that you pick up where the plumbing failure left you qickly.

Get a good plumber and you'll be fine ;-)

 

[pellicle]

Oh and @Pete.C

Your fitness should stand you in good stead if you need to go to surgery.

seconded

 

[pellicle]

Sure seems that way to me.

I believe that like all big bureaucratic things it is a bit slow on the uptake, however my observation is that once you are in it the priorities for progression are good and treatment (while perhaps dependent on where you specifically are) are good too. At least you can get treatment for things and don't find poverty excluding you from good treatment for life threatening illness ... or at least that's what I see happening and what I see happen in our system which is loosely based on the UK one.

 

[Pete.C]

I believe that like all big bureaucratic things it is a bit slow on the uptake, however my observation is that once you are in it the priorities for progression are good and treatment (while perhaps dependent on where you specifically are) are good too. At least you can get treatment for things and don't find poverty excluding you from good treatment for life threatening illness ... or at least that's what I see happening and what I see happen in our system which is loosely based on the UK one.

Yes, the nhs is wonderful when it works, but it has been under intense pressure this last few years like all healthcare systems.
I just hope I’m not one of the ones that slip through the gap!
A recent report said that over 100,000 people in the uk are waiting for serious cardiac surgery.
When I’ve seen both cardiologists, one privately, if I require surgery then I think I will have to weigh up my options if I have to wait for the nhs or pay and go private.

Pete

 

[DaveLee]

Yes, the nhs is wonderful when it works, but it has been under intense pressure this last few years like all healthcare systems.
I just hope I’m not one of the ones that slip through the gap!
A recent report said that over 100,000 people in the uk are waiting for serious cardiac surgery.
When I’ve seen both cardiologists, one privately, if I require surgery then I think I will have to weigh up my options if I have to wait for the nhs or pay and go private.

Pete

Would you stand still and let someone shoot a pistol at you one shot a day at 100meters and how many of that 100,000 do you think are going to DIE while waiting? Do the math on how long you will be waiting at 100,000.

 

[Pete.C]

Would you stand still and let someone shoot a pistol at you one shot a day at 100meters and how many of that 100,000 do you think are going to DIE while waiting? Do the math on how long you will be waiting at 100,000.

Yes its tragic, like I said I’ll probably end up going private if I don’t like what I hear from the cardiologist on Monday.
People are getting dates for surgery then being cancelled multiple times.
Im not a rich man by any means and the cost will put a big dent in savings, but it’s no good being the richest man in the cemetery!

 

[vitdoc]

Results of which showed that I had mitral valve regurgitation, possible atrial fibrillation and a small hole in the heart. Then waited for the appointment to see the cardiologist which didn’t materialise for another six months. I was asymptomatic and fairly fit from cycling, some jogging and hiit workouts, when I met my cardiologist he said the valve leak was moderate to severe and I didn’t have afib and no need for any medication, which I thought was good news. I could go on doing what I had been doing and would just need monitoring every six months.

Though he was in fact looking at data that was 6 months old already. Six weeks later I have a fainting episode and admit myself to a&e where they try to bring my heart rate down from 175, after 5 or 6 hours they succeed. Now confirmed a fibrillation and put on warfarin and bisoprolol. After a further echocardiogram I am due to see my cardiologist next week. I have gone from being asymptomatic to out of breath climbing one flight of stairs, so nearly any sporting activity is not possible, I do manage the occasional round of golf. I am assuming it won’t be good news when I see the cardiologist and I will require surgery this time.

I am a physician in the US with as one can see an extensive cardiac history. I also happened to have spent some time in the UK for some medical training on two different times in my career. So I know a bit about how things work in the UK albeit somewhat dated.

First as far as the mitral regurgitation goes it can be stable for a long time and then suddenly cause the heart to go into failure with a major uptick in symptoms.

The BNP is a hormone associated with heart failure and is used as a marker for heart function. It is useful say in tracking chronic mitral regurg. but with frank heart failure it would be very surprising if it was not very high. So the BNP is just confirmation for what is already obvious.

There are a variety of options for mitral regurgitation. Repair, Replacement (surgical or possibly soon via catheter) or Mitral Clip. I had significant mitral regurg for years without any real issues then within a week I went into major heart failure. I was scheduled for my fourth open heart by one of the busiest mitral surgeons in the US. Nobody was very interested in doing surgery for the 4th time on a 67 year old retinal surgeon. I spoke with people at Cleveland Clinic and other places. A few days before my surgery was scheduled I got a call from the mitral surgeon suggesting I consider the Mitral Clip option. Fortunately for me I had been in touch with the number 1 by volume Mitral Clip cardiologist in the US at the time who was eager for me to have the procedure. I had it done two days later! (Not the NHS). For me it was miraculous. Symptoms completely abated and the procedure from my standpoint was a piece of cake. Out and home the next day.

Now six years later it still is working perfectly with very little regurgitation seen on ultrasound and little mitral stenosis.
A lot depends on the interventional cardiologist who places the clip. I had two clips placed and I found out that my cardiologist sweated through the procedure due to oddities in the anatomy preventing optimal visualization in my case. But now the procedure is being done at my local hospital with several hundred cases under their belts.

I have not been following the literature on this over the last six years but I believe it is still a very viable alternative to surgery. So at least discuss your options.

Finally we have real problems in the US with people without medical coverage. This is clearly not acceptable but we also are fearful of a system that is not very responsive to individual needs. So there is much debate on how to get a better system and avoid some of the issues you went through and are still going through.
Good luck.

 

[Mister_James]

This is the US vs UK model problem. US has its 200k patients awaiting heart surgery but they are not on the radar because they dare not go to the doctor.
They therefore do not exist. There is no wait time. All you have to do is dig cases of diabetes and ask yourself why something very preventable is chronic in the US.

As mentioned above, valve issues are typically monitored but when you do not have monitoring history to track progress, things can be dropped. No one's fault just how things work. Moderate to severe regurgitating is exactly that and if you do not have symptoms doctors tend towards wait and see.
I am huge proponent of annual checkups with a primary care doctor, they tend to find these things before your apple watch lol.
Anyway, all the best going forward.