ZERO stamina 3 years after AVR - British Heart Fou...

British Heart Foundation

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ZERO stamina 3 years after AVR

Zindolo profile image
22 Replies

I had a calcified bicuspid aortic valve replaced about 3 years ago. (11/03/2020) The doctors said I would feel much better and have increased stamina after the surgery, but that never happened. In fact, it was just the opposite. And yesterday confirmed my worst fears; I went to the county Fair and could barely do it. I haven't really tried anything like that since the surgery 3 years ago. But, ZERO stamina; I can only walk for a couple of minutes and then have to sit and rest for at least 5. I've tried to explain this to my current GP and cardiologist, but they don't know what might be causing it. The cardiologist said my "heart looks great" after a recent electrocardiogram, and my blood work comes back normal, no diabetes. So, it's a big mystery, basically. I have gained about 30 pounds since the operation, but it doesn't seem like the effect of that would be this severe. (I've gained and lost more than that amount in the past with no noticeable effects on my stamina.) So has anybody else out there experienced anything like this, and did you ever discover the cause? I'm 60, so not THAT old but not young anymore either. Thanks!

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Zindolo profile image
Zindolo
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22 Replies
Rhinos67 profile image
Rhinos67

Hi

Like you I had AVR and also a pacemaker. Mine in April/May 22.

I was relatively fit beforehand but have not returned to anything like the levels I was at before. I check online about fatigue and it seems that I should be back to normal, but I know that I'm not.

Obviously like you I'm getting older which is also a factor, but some days I come home and go straight to bed after work. My GP says that maybe work is too much and she may be right.

I do have an Echocardiogram booked for a months time though and hoping for no nasty surprises.

I'm about to join the Zoom meeting for UK Aortic and Heart Defects Pre and Post surgery Facebook group shortly and will ask those on there how they are. Are you in the group? If not maybe consider it.

Joanne

😊

Zindolo profile image
Zindolo in reply toRhinos67

Sounds like your GP has no idea either. I'm in Dallas TX, so I guess I probably can't be in any sort of UK group. But yes, I was told I had a bicuspid aortic valve instead of the normal tricuspid option. I didn't feel that bad about it, however, because Arnold Schwarzenegger had the same "defect", so I thought that maybe we were just evolving into a superior race of humans - LOL! He had the exact same operation one week before I did, btw. Apparently things went better for him, however. I guess maybe I should send him an email - he's retired now so he just might reply! I was just watching him on the Jimmy Kimmel show a few minutes ago!

Rhinos67 profile image
Rhinos67 in reply toZindolo

Not sure about the Zooms but pretty sure that you could join the group anyway. A really friendly lot with advice and common experiences 😊

devonian186 profile image
devonian186

I have linked to the Richter scale used to measure earthquakes. Turn it on its side

bing.com/images/search?view...

I would make the comment that if you look at those numbers and translate say 5 to 50 and 6 to 60 it can then be likened as to how your energy levels drop off dramatically as we age. What we thought nothing of at 50 becomes a trial at 70.

Add in the weight equation whereby after 30 being substantially overweight puts at least 10 years onto those figures and probably much more . So lose weight, accept your limitations and perhaps look at your medication and you might begin to see an answer

Zindolo profile image
Zindolo in reply todevonian186

Yikes! Okay; I've decided that all I can really do is figure out a way to lose weight. I'm not optimistic that this is the cause of my problem, but that would be the only way to find out, and if it isn't, at least I won't be so heavy. I was swimming laps until I moved to Dallas, where I can't seem to find a suitable lap pool to swim in, so that's a problem.

devonian186 profile image
devonian186 in reply toZindolo

Just relooked at your original post and see that you have put on 30 pounds since the operation. Were you already overweight at the time of the operation? Looking at your other replies it looks as if you were, although your height helps.

Muscle quickly turns to fat. As well as being overweight by putting such a strain on the heart, its worth checking your real waist size. I was shocked to note that although I could get into my 38inch waist trousers my actual waist was much greater than that which is not a good thing at all.

It can get pretty hot in Dallas so I can't really suggest an all year round form of exercise. Personally I use hiking polls and try to walk briskly and tackle some hills on the way but guess that's not practical for much of the year in Dallas. Best wishes.

Sewingpumpkin profile image
Sewingpumpkin

Devonian186 has some good points. You didn’t mention whether you do any exercise like walking as this has a big impact on your stamina. I had 2xCABG about 4 years ago and I am not back to my previous and probably unobtainable strength and fitness levels but I do fitness workouts, weights and walk a lot. One thing I have noticed post surgery is that I loose my muscle tone and stamina in a much shorter period of time.

Zindolo profile image
Zindolo in reply toSewingpumpkin

Okay. I used to swim laps but when I moved to Dallas I couldn't find a pool to swim in. I'll try harder to use the gym; fortunately Dallas offers free memberships for their citizens over 60. I really don't think it's the excess weight, but of course I might be wrong about that. Actually I really hope that I am because that means it's "fixable", albeit not an easy fix since I find losing weight to be nearly impossible!

Letsallhope1 profile image
Letsallhope1

Hello Zondolo,

Just realised you live in the US so I’m not sure if my advise is durable but if it hasn’t been done recently, is definitely push for more tests on my heart: an updated echo, possibly a MRI or CT scan to make sure that nothing sinister is hiding there.

You said you had an electrocardiogram (not an echo?). If so, how can the cardiologist affirm that your heart looks great? 🤔

If you can I’d definitely demand more tests and try maybe to lose some excessive weight, it always helps, especially on a heart which is already struggle.

All the best

Zindolo profile image
Zindolo in reply toLetsallhope1

I'm pretty sure it was the electrocardiogram. In the USA all those tests can get very expensive so I guess I just need to try harder to lose weight.

Letsallhope1 profile image
Letsallhope1 in reply toZindolo

Yeah, I have a rough idea how it works there. I’m sorry :-(

Wish you all the best

Jessiebrown profile image
Jessiebrown

Hi ,I am exactly the same and my opp was nearly 5 years ago ,I did have a lot more done than you but it's still open heart surgery, like you I've just got worse ,no-one can tell me what's wrong all tests come back normal so I suppose we will just have to put up with it ,my problem mainly is breathing, the trouble is having to wait so long for scans,anyway I hope they get you sorted I do feel for you as I am the same,good luck xxx

Cliff_G profile image
Cliff_G in reply toJessiebrown

Zindolo and Jessie, Same here. A huge OHS op nearly 6 years ago, improved for about 2 years though slowly, but since then a steady decline. All tests (Neuro and Cardio plus MRIs and breathing) found nothing. I can find the energy from somewhere if I absolutely need to, then I will just regfess, probably worse than before. It feels to me like a general lack of muscle energy, low oxygen throughout my body, or at least poor use of energy in my muscles cells. I keep hearing the word mitochondria.

I'm on the point of seeing my GP to ask if perhaps this is no longer an issue of recovery from the surgery but perhaps it brought the onset of something like ME/CFS.

I'm also worried by all the reports of long-term problems from the C bug or the immunisation programme. I never tested positive but am fully jabbed to last Autumn, but we did both get a bad flu-like thing in Nov 2019 which we're sure was brought back by a friend who got very sick while working in China. No-one in my wife's circle escaped it.

So, no answers I'm afraid, but I'm now looking hard at some of the remedies/supplements quoted to help with ME etc. - none of which are supported by mainstream medicine!

Mdea1988 profile image
Mdea1988

Hi, sorry to hear your not feeling th benefits, I also have had this I had a double mech valve op in 2018 and since then have had a lot of trouble feeling any benefit gained weight, can't do what I did before and said it feels worse sometimes, I did suffer a stroke after the surgery which hindered my ability to do the rehab as was even weaker, my ecg shows as valves working well and cardio seemed baffled but have now noticed a silent heart attack that's happened at some point, and that could be causing some issues so now having meds for it but still don't feel much more like in 35 I feel much older to be honest. I'm currently waiting to hear back from them as my bloods have been abnormal recently so unsure as to why that is. I do hope you get some answers, it seems such a shame to go through all that surgery to not feel better for it. 🥰 take care

Mitchum profile image
Mitchum

I know it's un-gentlemanly but, can I ask how tall you are and what weight you are? Also, what was your post op exercise routine and what is it now?

Heartstogether profile image
Heartstogether

Hi

I am just over 1 year post AVR and pacemaker and in the same position, no stamina, gained weight, cannot walk up a slight incline without resting. This feels as bad if not worse than pre-op. Heart and ECG all look good. I am walking and working on my fitness and weight but don’t make much progress despite the effort. Any advice would be appreciated thanks.

Pulsar177 profile image
Pulsar177

Hi. I was a very fit 68. Weighing 12 stone. In February 2022 I went into heart failure whilst waiting for AVR due to Covid delays. . 4 months in hospital CABG X 3 & AVR. BOGOF offer from NHS gave me sepsis & deep wound infections. And bacterial skin infections. 45 Days in ICU (10 in an induced coma) on a ventilator. 18 months later 25 lbs heavier. Could sleep all day. Mental fatigue ? Wonder sometimes if it was all worth it. But it didn’t beat me then and it won’t beat me now. Stay with it. Take one day at a time. Maybe accept that this is the new normal. That helped me. At least I am here to enjoy the simple things that matter most. Best wishes.

Zindolo profile image
Zindolo

I'm 6'0 and 330 pounds, but I lifted weights for years in my youth so I don't think I look quite that heavy. I was just over 300 at the time of the OHS, and dropped to about 290 for a while afterwards. Unfortunately I never got married or had kids, and now in Dallas I don't really even have any local friends! So one of the few enjoyable things in life that I CAN do is go out to eat, and this is making it very difficult to lose weight. But after going to the Fair on Thursday, it would appear at this point that I have to choose between one of my last enjoyable pastimes and being able to walk! Life is cruel...

Sewingpumpkin profile image
Sewingpumpkin in reply toZindolo

I would really advise trying to reduce your weight and do gentle exercise. I don’t know whether you have access to cardio rehab but they would be able to advise the best way to go about it.

Something I personally have a problem with is heat. I don’t know how hot it was when you went to the fair but I personally struggle in the very hot weather and dehydration definitely affects how much stamina you have.

isobelhannah18 profile image
isobelhannah18

Have you had your thyroid and iron levels checked when you had bloods done? Both could be a factor.

Zindolo profile image
Zindolo in reply toisobelhannah18

I think so, but not sure about that. I think I can see all my lab work on the website of my health insurance so I'll double check it later today.

Mitchum profile image
Mitchum

Hello again. We have a saying in the UK, you might have the same. Sometimes you have to be cruel to be kind! You NEED to lose 120 pounds starting today. It is an abrogation of collective responsibility on the part of your medical advisors not to be honest with you, particularly as it is, or could be, life threatening. Being so heavy is putting enormous strain on your heart. Diet AND exercise is vital and will get easier as, the more you do, the more you will be able to do! I see you live in Dallas and another replier has mentioned the heat. This is true as I struggle more (and am more careful) when it is hot but, please, you must lose weight.

I guarantee it will improve you substantially energy and health wise. Do it today!

Good luck sir!!

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