Back in June, I had a few weeks of symptoms that didn't seem quite right for me, and in the past I would have put them all down to my ME/CFS diagnosis, but at the age of 72, I felt it best to see the GP about it. I asked for an ECG and he agreed, and that was done quite quickly back in July. By that time, the symptoms had calmed down, apart from fatigue which is kind of ongoing, due to the ME/CFS issues going back now over 15 years.
The ECG was 'abnormal' and showed a Left Anterior Fascicular Block, normal sinus rhythm so the GP then referred me for an Echo and Holter test.
After quite a wait, I finally made it to the Echo, plus Holter test (still awaiting results). I had to wait for a GP phone appointment for the results, which I got last week, where I also asked for a copy of the test, which I now also have. Having since looked at some people's issues on this site, I feel mine must sound quite trivial but it's still my first time, so I am now trying to understand the implications.
I have a mild aortic regurgitation issue - actually it says 'at least' mild - is there some doubt in the mind of the person who did the echo? Everything else looks fairly good at present, though I see that the aortic valve leaflets are mildly thickened. I don't have high BP, or any problem with pumping. I can see from reading up about this, that it could stay like this for a longish time if I am lucky, but I guess that we are all different and there's no way of knowing the progress of it?
I am due for a retest in 2/3 years time so at least someone will keep an eye on things. I have looked at what might happen if things deteriorate, and I guess they will prop you up with drug treatment initially, before going for repair or replacement. I can't help wondering about the reality of being given drugs to prop you up, while your heart valve is gradually deteriorating as you wait for a new valve to be fitted, on a waiting list, assuming you get that far
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Hi there - I would say that you have nothing to worry about. I was first told I had a heart 'murmur' when I was in my early twenties (I'm now 70) and just over seven years ago had an angioplasty, which meant that I also had a full-on list of checks (electro and echo cardiograms included). These also detected signs of regurgitation, this again showing up when I had the test repeated earlier this year. In both cases, it was considered not to be cause for concern. The fact that you have been offered a retest in 2-3 years time should put your mind at rest - not only are they keeping an eye on you but your condition isn't considered serious enough to warrant urgent attention. Relax and enjoy life - but if you do feel any change in rhythm or general wellbeing, don't be afraid to talk to your GP.
Yes, all being well, mine will progress slowly. I have an allotment and feel I did overstrain myself a bit this year in the heat especially, and also carrying stuff, so am going to be a bit more cautious there in the future.
Are you in Cornwall by any chance, with Kernow in your name? I lived there for nearly 18 years, and just moved away 2 years ago, after my husband's death, though I have been back a couple of times to visit old friends there.
Ah, I will wave next time I go past on the train then! I always love your place name anyway. It sounds so romantic. I was in Newlyn from 2003 to 2022, and only left really due to husband's death and moved closer to family, but I try to come back for visits still.
You have been placed on a wait and watch pathway which will monitor any changes that may or may not develop in the future.
It sounds from what you say that you have mild aortic stenosis (stiffening) and mild aortic regurgitation (leakage). It may never progress but if or when it reaches severe you will require a valve replacement or repair. Deterioration is not guaranteed and future echocardiography will give the answers.
Yes, I definitely have the aortic regurgitation (mild) as that clear in the report. I probably don't have the stenosis as yet, but not sure on that. I guess you possibly thought that due to the aortic 'leaflets' are slightly thickened, however at present it seems they are mobile and the forward flow is normal. I asked for a copy of the full report so have the wording on that.
It sounds as if the future is in the lap of the gods.
hi, I can't comment on your heart issue as that is beyond my experience, but I also have ME and was very concerned when I had a heart issue
my concerns were about how ME could affect my recovery (I had a Takotsubo episode) and whether ME was involved in contributing to the heart issue - but also I felt that the lack of understanding around ME meant that the cardiologists and other members of the team had no understanding of the reduced parameters of my life at the time and how a long-term heart condition might affect that
for me any further loss of energy would have been a blow, but the medics had no awareness or comprehension of this and most completely dismissed it - as it turned out I made a good recovery and, so far, no long term consequences - but I wonder if you are experiencing concerns similar to mine, and getting the same response?
Curiously I met another person on a forum who had ME (at least I think it was that, though I am also on Thyroid forums, and it was quite a long time ago!) who had a Takosubo episode. I wouldn't have known what it was apart from writing to her.
I am fortunate that my ME hasn't been severe. I was diagnosed in 2008 and it is better than it was then, though the waters have been muddied for me, by also having an underactive thyroid (diagnosed 10 years before the ME diagnosis), and also low platelets, and now this, the leaky heart valve, all of which can cause fatigue.
Of course ME is more than fatigue, but it's hard sometimes to be sure of what is what, and I am sure there are some in the ME community who might say I don't have ME, that I have CFS, but who knows? I don't have it too badly is all I can say, though I do have PEM, but that is variable. I can do amazing things in the summer that I cannot do in the winter, which is curious. I have an allotment and work on there in the mid summer for up to 5 hours, but the minute autumn arrives, my energy limits begin to decrease. I know sunshine itself is energising, and I am trying out some red light therapy this winter to see how I get on.
So as for your question of how ME might affect recovery - well by chance I am having an unrelated operation (ie it's on my arm not heart), on 5th Nov with a GA, so maybe I will soon know. I did state that I have ME but no comment was made on that re the pre op. Previously I have had numerous eye ops, one with GA, and some with sedatives, and I mentioned it to the first surgeon when I had a GA, and he dismissed it, and as it happened, I had a long period of rest after the op, but with an uncomfortable head posturing position for 10 days, with a heavy cold, but I did seem to manage quite well.
I don't think GAs are great for us, re energy depletion, and I had one back in 2003, before I was diagnosed with ME, and it took quite a while to feel OK from it again. I plan to rest as much as I can after this op, as it's my right arm, and I won't be able to do much, and it's Nov so I won't be tempted to rush out to the allotment or anywhere else. I personally take supplements which I won't list here, but they may give me some support re any imbalance in electrolytes which may occur as a result of the op, though it's not a long one, so I guess will be OK unless I am kept waiting all day for the op (I have to get there for 7 a.m. with a likely 90 min journey there).
It has crossed my mind to write actually and ask if I am not left waiting all morning for this reason.
I won't answer at length because I am brainfogged with a cold - but thank you for your response
I get fed up with people who play the "my ME is worse than yours" game and try to dismiss others - any condition which damages your quality of life and takes away choices you once had is threatening and we should support one another
I wish you a good recovery after your coming surgery - at least you know where and when to reach out to for support
Sorry to hear of your cold fishonabike and hope it clears quickly.
Oh dear me, yes, I agree. I think the whole ME versus ME/CFS name thing and who has what got dragged into the political minefield, and then became damaging as people whose symptoms were not as clearcut get mud slung at them by other patients, especially if they improve and dare to write about it. I know that those at the severe end are getting no help and it needs to change, but this attitude does the patient community a disservice.
Degenerative valve disease can progress very slowly. I was diagnosed with mild mitral valve regurgitation when I was 39. It progressed to moderate/severe mitral regurgitation plus mild aortic regurgitation by about 50. At 60 I had severe mitral regurgitation plus moderate aortic regurgitation. I was still asymptomatic, but was starting to show LVH so they said it was time. I had my mitral valve repaired and my aortic valve replaced 5 weeks ago.
It's not a fun operation, so at 72 I'd be hoping I could make it to the finish line without needing to do anything about it....
Thank you for sharing your experience PadThaiNoodles
It is interesting to hear the timings of your own experience, I have been reading that some people are asymptomatic despite suffering from moderate or severe valve issues, and I guess I find this puzzling and surprising. I did have a bit of an episode earlier this year, (but it could have just been an ME relapse as it lasted several weeks), when I feel in retrospect that I pushed myself too hard in the heat. I also have fatigue, but don't know if it's related to the valve issue or the fact that I already have ME/CFS (over 15 years).
Yes, it sure would be great to make it to my end without the heart surgery, but if I do need it, I am also hoping that needing to have open heart surgery won't be on the cards either with the advances in various options for surgery in the future.
Yeah, if it's just the aortic valve then they'll almost definitely do it via catheter. I had to have 2 valves done, so that meant OHS.
FWIW, my cardiologist did say that both my slow progression and lack of symptoms were somewhat unusual. But he said the fact that I just had bad valves was also unusual; most of the people he sees have other compounding heart issues.
Ah I see, yes, that makes sense why with 2 valves they do it by OHS, but more likely to use the catheter approach if just one. Well who knows I guess what might happen over the next few years. The report did mention 'trivial' leakage from 2 other valves, but I guess that is too small to grade it as 'mild'. Re the aorta grading, she actually put 'mild at least' so that left a bit of room for doubt!
It's interesting to know that you are unusual to just have the valve problems. I do know that the Echo doesn't pick up on any blocked arteries, but as my BP is normal, this seems unlikely. On my own BP monitor it is low normal, but at the Dr or hospital it always seems higher, despite buying a replacement recently because the diastolic was so low on the previous one, I thought I had very low BP. Both of them are arm BP machines, and the previous one was checked by the manufacturer after I queried the level of diastolic.
I hope you are making a good recovery - as you say, OHS doesn't sound like a walk in the park when checking it out.
There's different stages of regurgitation, stage 1, 2, 3, 4. Mild, mild to moderate, moderate to severe, severe, critical. At the moment mine is moderate to severe aortic regurgitation and stenosis so I have what they call mixed valve disease. It progresses differently for people mine has taken about 13 years to get to moderate to severe aortic regurgitation and moderate to severe stenosis so will soon need valve replacement surgery I was in hospital last month with palpitations, chest pain and severe shortness of breath and nausea and being sick and my echo showed my valve is significantly narrow and leaky and there's a blockage and the valve is calcified, pumping function is good no signs of heart failure thank goodness because at first that's what my specialist thought. Sorry for rambling. I hope your cardiologist keeps a good eye on you with echos and ecgs x if you wanna talk more feel free to message me.
Thank you Yumz199725 for sharing your experience and also helpful to know all the gradings as I wasn't aware of all of those you have listed.
I wonder what kind of things affect the progression. Do they know? I did a google and found some studies, but I don't know if we are allowed to quote them on here?
Sorry to hear of your recent symptoms. They sound to me like needing urgent surgery but I am not a cardiologist! It's very good to hear that you haven't got heart failure. Are you in the UK? How long are you likely to need to wait for your surgery?
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