LVH - is it game over?: Hi folks, I've... - British Heart Fou...

British Heart Foundation
19,733 members13,439 posts

LVH - is it game over?

SoNowWhat
SoNowWhat

Hi folks, I've just signed up to BHF as I don't know which way to turn at this second. I've been aware I've got an enlarged heart and high blood pressure, I'm in my late 30s, today I had an appt with a consultant cardiologist, who warmly sat me down and made me aware that I have an apparent death sentence, that I could drop dead in the next five years and might not make it much beyond that, despite a recent appt with a cardiac nurse being positive and with the nurse confirming that I'd gone from 'moderate to severe' to 'moderate' LVH.

I just wasn't aware that it was this big deal, I thought it was something that would improve and I'd just have to be careful moving forward and manage my blood pressure, now I feel like a dead man walking.

Does LVH basically mean I'm going to die at some point in the near future or is it something variable that can be managed to a degree. Any advice from other sufferers (or anyone with knowledge of it) would be gratefully received, I'm just floored right now :(

51 Replies
oldestnewest
MichaelJH
MichaelJHHeart Star

Hello and welcome to the forum! I know very little about your condition but believe you can survive for rather more years than your post suggests. Have you achieved a healthy blood pressure and with which drugs? A healthy lifestyle is particularly important as is a healthy BMI. Smoking is bad for anyone as it is a loaded gun, even more so for you. I am sure someone with more knowledge than I will be along in a while.

SoNowWhat
SoNowWhat in reply to MichaelJH

Hi Michael, thanks for the response, it's appreciated.

Blood pressure is not under control but lower than it originally was, I've just been prescribed some new beta blockers to try - I have real difficulty with leg cramps from BP meds but am currently on quinine, 10mg felodopine and 4mg doxazosin a day.

Smoking - used to smoke but stopped several years ago, vape instead.

Alcohol - I haven't drank for @ 15 years, does nothing for me.

BMI - High, on slimming world and recently got the 2 Stone award, a long way to go but underway.

MichaelJH
MichaelJHHeart Star in reply to SoNowWhat

Do you get the leg cramps when walking, if so it could be a sign of PAD (peripheral arterial disease). Smoking and diabetes are major factors in this.

I am glad SW is working for you. A friend's wife has lost over 10 stone on the program and is homing in on target weight. Weight loss also tends to reduce blood pressure so it is a win win situation.

SoNowWhat
SoNowWhat in reply to MichaelJH

It's more at night during sleep/rest, so hopefully it's not PAD :S Your friend's wife has done fantastically, I'll aim to emulate her success! :)

jobe1968
jobe1968 in reply to SoNowWhat

Vaping may still cause issues. I believe most vape pipes dose nicotine. Nicotine has a negative effect on the arteries. However It is better than smoking

SoNowWhat
SoNowWhat in reply to jobe1968

The vaping has to go as well, I'm going to have to go all-out by the sounds of it.

jobe1968
jobe1968 in reply to SoNowWhat

Depends, if it’s keeping you off cigarettes 🚬 it’s about balancing risk. However if you can give up both that’s the best option. Not just heart patients either everybody.

Nicotine also raises blood pressure.

Welcome, I'm afraid I don't know much about enlarged hearts but my husband does have LVHF due to damaged caused by a major heart attack. Because of scar tissue the walls of his heart are thickening which is also characteristic of an enlarged heart? This makes the pumping of the heart more difficult.

I'm very surprised the consultant gave you 5 years, why does he/she think that? Or is it a case he/she has given you a worse case scenario and you've focused on that as its scary to hear? My husband has had HF since at least 2012, we were told he's high risk of sudden death & that was all we could focus on at the time. Do you still have a heart nurse?

SoNowWhat
SoNowWhat in reply to Lezzers

Thank you :) It sounds similar to what your husband has experienced, in LVH the muscle gets overworked so gets larger and more misshapen and ineffective :( After looking at the responses here and a phone call to my sister, both of which have been a godsend, I think the consultant was trying to say that -if- I remain as I am then I'm going to have a real problem real soon, but no talk of more positive outcomes came from the conversation, it was literally "people with a heart like yours have a 50% chance of surviving the next five years, but sometimes I see them in clinic 10 or 15 years later", zero talk of being able to affect that outcome beyond him trying a new med for my blood pressure. I saw the heart nurse months ago, the consultant has put me down to receive regular contact with one, so hopefully they can offer a bit more hope.

Yasyass
Yasyass in reply to Lezzers

So how is your husband and does he still have hf nurse I have been told have similar diagnosis as ur husband but I worry constantly

I have an enlarged heart, fast heart rate, leakage, blockage, murmur, fluid round it & those are the ones that I can remember! Plus I've had 2 minor strokes this yr & I'm 40, had open heart surgery when I was 25

I've been told that I might not live beyond 70,it would have been not beyond 40 without surgery, so I'm grateful that I had it, there's a good chance that I will have to have more surgery again

I live each day the best I can as have other health problems as well, so should you, yes it's scary, most of mine I was born with & a few found out in the past few yrs, so I dunno if anymore are gonna be found in the future or if I'm gonna have a bigger stroke

You're right, sounds like you've had more than your share of things to overcome and push through, I need to be more positive as well. It's just the change from "be careful and keep going" to "you've got a 50% chance of being dead in 5 years" is a hell of a change, especially as I have a 9 month old son.

I can't pretend to understand what you are feeling with your son on your mind, but take what advice they give you & you may well live longer than what they've said, NO you WILL live longer than than they said as gotta be strong for him

Have they offered any treatment? I haven't as they seem to think I can cope because of my age, but I can't

Yasyass
Yasyass in reply to SoNowWhat

Yes I also have similar problems except have no symptoms and I too read the google and was scared but I am trying the best I can not to worry and enjoy life only god predicts wh happens we just do our best it’s because we have been told otherwise we wouldn’t be thinking about it

I was diagnosed with mild lvh in May following a diagnosis of really high bp in March.I was told by my cardiologist that if my bp is under control so will my lvh be.Also my GP has said it is very common and nothing to worry about.That said, I do worry and I really feel for you having to hear that news at your age.What treatment has been offered?

Sounds as if the cardiologist may have been giving you a worst case scenario if you don't address lifestyle i.e. stop the vaping and continue with diet and exercise in order to get BP in order. You say the nurse was more positive so perhaps you could speak to her again. Good luck.

Any information can be given and interpreted in a variety of ways. There are several things that influence your future so forgive me if I ramble on.

The most important are lifestyle changes which it sounds as if you are addressing and attitude as there is a lot of research showing people positive about their future live longer and feel better.

It is also important to remember the shortcomings of statistics. They help doctors but do not really give an individual a clear view of outcomes. Statistics are based on the bell curve. That is to say a very few pople with a certain condition will die tomorrow a very few will live a full lifespan and the rest will be scattered along the curve. Your consultant can say the most people will die in a certain number of years, your nurse will know that many people live much longer.

In a previous life I was a clinical nurse specialist ( nothing to do with heart disease) and I was often told the news seemed less scary when explained again.

Your situation is scary but there isso much you can do and are already doing to improve things

Hello Your post concerns me-I have an enlarged heart-recently diagnosed following a chest Xray.GP said to have a blood test and echocardiogram but did not seem concerned -no referral made.I heard on a TV programme the problems an enlarged heart can cause and am really worried now about mine,As far as I know my blood pressure is not raised.

emerich
emerich in reply to rainbow58

Have you got your blood test results back Rainbow? They usually only take a couple of days.

Hi , I was also diagnosed with mild LVH after high BP , and put on a cocktail of BP meds and beta blockers. My consultant seemed unconcerned with the LVH and assured me it would probably return to a normal size if I gave my heart a rest. I was an avid cyclist and would regularly cycle > 50 miles a week up hills. My echo came back all clear and was told as long as the BP stayed in check I would be fine . Bare in mind many athletes have LVH due to the strain they put the heart under and they are fine.

Sounds like a bit of scare mongering to get your lifestyle in check. I’d ask your GP for some assurances or another cardiologist in case there is something else there he didn’t explain. But don’t worry about it that will make it worse as any anxiety or stress is not great in any situation.

Physiologic LVH (athletes' heart) has very different implications for health from pathological LVH.

HiddenThis reply has been deleted
MichaelJH
MichaelJHHeart Star in reply to Hidden

So Now What, I would urge extreme caution with these diets as there is potential for deficiencies in vitamins and minerals. If you do consider them I would suggest talking with a medical professional first. The BHF recommended diet is a Mediterranean one which integrates with the SW one well.

MichaelJH
MichaelJHHeart Star in reply to Hidden

Here is something I found about Sinatra on the net:

Sinatra advocates a controversial alternative health practice called "grounding" or "earthing." According to the theory of grounding, the earth's surface is negatively charged and contact with the earth allows electrons to neutralize free radicals in the human body. One study, published in a fringe journal, attempted to show a reduction in blood viscosity and blood pressure, a key factor in cardiovascular disease, but has been highly questioned due to improper methods and questionable results. Advocates say this can be accomplished by lying or walking barefoot on grass, sand or earth, or by lying on a special pad connected to the earth by grounding wires or a rod, or plugged into a wall outlet with a "modern earth ground system". None of these "treatments" have proven to be legitimate.

Obviously doing it his way! Would you take him seriously?

Lezzers
Lezzers in reply to MichaelJH

😂

Milkfairy
MilkfairyHeart Star in reply to Hidden

Interesting ideas and opinions to be found in the books written by Dean Ornish, Caldwell Esselstyn, Michael Greger, John McDougall and Stephen Sinatra,

However without evidence or research studies they are that just opinions.

HiddenThis reply has been deleted
Milkfairy
MilkfairyHeart Star in reply to Hidden

I have looked closely at the evidence.

I do not disagree with the evidence that eating less meat is in our best interests.

I eat a Mediterranean diet, exercise, manage my stress, never smoked and eat virtually no processed food. I enjoy drinking some beer and wine.

This is my choice after looking at the evidence and considering my quality of life which is pretty poor at times because of my particular heart condition.

Parminter
Parminter in reply to Milkfairy

We must still live as best we may. I find that the most problematic issue is stress, and find it very hard to control. Tough world.

Milkfairy
MilkfairyHeart Star in reply to Parminter

Yes it is a tough world sometimes.

There is no one size fits all we each individually have to find the best way to live as well as we can with our particular challenges in life.

This forum is a great place for people sharing their different approaches.

Ok, you've been given a disturbing diagnosis with the added 'bonus' of a consultant coldly telling you the worst case scenario prognosis. If my cardiologist had done that I'd still be in the corner quivering and drooling with complete terror - but then I'm a serial whimperer.

Here's a thing, however - the cardiac nurse has told you the treatment and lifestyle changes you're making have had results! You've gone from 'moderate to severe' to plain old 'moderate' - WOOHOO, well done you! Keep up the good work!

Have you seen this:

bhf.org.uk/search/all?keywo...

Several good British Heart Foundation downloadable publications on the condition, treatment, and how to make a frightening prognosis defy-able.

Also very good information at this link:

mayoclinic.org/diseases-con...

Ok, an enlarged heart is not great. But it's manageable. I'm with the other commenters here suggesting you talk with the cardiac nurse again, and let me add in when/if you do talk to the nurse again that you request referral to a cardiac counsellor. Counselling is incredibly helpful especially for someone as young as you who has been given what sounds on the surface to be a quite dire prognosis.

I know this about counselling as I was diagnosed in childhood with a life-threatening condition (Rheumatic Heart Syndrome and I now have a few more heart conditions). Ahem, I'm now 63, and managed to get to this age without too much interference from what I used to call 'my stoopid little heart thingie' - carried two pregnancies through to live birth (my babies are now older than you:) ), was in the armed military for twelve years, surfed-swam-rode Western Pleasure for work and fun...counselling helped during rough patches, got me back on my game.

I'm not saying you can have the same full life I've had - I'm not a medical professional and don't have access to your chart(s) - what I'm saying is counselling helped me live my life to the fullest possible and it could do the same for you.

Read, learn, and get some counselling.

Also, this is the telephone line to the BHF heart nurses - they're busy folks but very helpful, give them a go on:

0300 330 3311

bhf.org.uk/informationsuppo...

Yasyass
Yasyass in reply to Sunnie2day

What a wonderful story you give others encouragement and myself thank you

It is clear that the cardiologist is giving you a strong wake-up call that 'being careful' is not enough, and you really need to normalise your blood pressure and get down to a healthy BMI asap. LVH is something you want to reverse, not 'manage'.

I would take his advice.

LVH, high BP and high BMI is definitely not a good position to be in your 30s. LVH shows your heart is struggling and is a strong cardiac risk. However, it is something you can turn round yourself, primarily with a healthy diet and exercise and being adherent to your medication. The first 2 stone is real achievement, but your goal needs to be a healthy BMI .

Vaping raises your blood pressure and you should stop.

You don't say whether or not you are obese, but obesity is a cause of both high blood pressure and LVH. Both are reversible with a healthy BMI.

Don't panic, but do take it seriously and act. You have to make your health a priority, but if you do the rewards are great. Rather than counselling to accept your situation, act and change your situation!

Your GP should be able to advise on weight loss.

Milkfairy
MilkfairyHeart Star in reply to Fortepiano

Counselling can be a very useful resource to be able to develop the resilience and motivation to carry out the also equally important life style changes.

It is not just rolling over and just accepting your situation.

There is a parity of esteem between physical and mental health.

Fortepiano
Fortepiano in reply to Milkfairy

I wouldn't call coming to terms with a cardiac situation which cannot be changed "just rolling over"!

My point was that in contrast the OP's is lucky enough that his cardiac situation can be changed and he can and should make those changes.

If counselling helps him do this then by all means.

It's most definitely NOT game over.......I have severe LVH and though it's been a rough year and a half since finding out I'm positive about my future.im 54 and like you i was at risk of having a cardiac arrest.my heart began racing daily for 2 months,I just thought they were panic attacks until I wore a holter monitor which picked up a problem. I had to have an ICD fitted which is a defib/pacemaker just incase anything goes wrong.and I'm on meds to keep it all functioning as best as it can. Each person with it will be unique so you may just be on meds but you'll be regularly monitored by the cardiologist team. Please try not to worry the doctor you saw was trying to be honest with you as it is a serious condition. I hope this reassures you somewhat.its a scary experience you're going through for someone your age but not uncommon I'm afraid.. listen to your body,rest when you need to,do less if necessary and eat well,also cut down alcohol as this will help you greatly.good luck with everything 👍😊

Hi Heartofsoul, just wondered as a fellow lvh sufferer what your back story is like.Do you have high bp and if so, how long and how bad? I tried to connect with others in the same boat when I joined the forum but not many were on here.Mine is mild at present but I'm obviously interested in how it progresses.Hopefully it will regress or at least stabilize...have lost 4 and a half stone so normal weight now but terrible white coat bp.Also get palpitations so on propanolol for that which seems to work mostly at the moment.

Hi lettingoffsteam

I've never suffered with high BP ever and it's still ok I'm happy to say. I suffer from another condition called fabry disease which is inherited and can effect my organs (heart, kidneys and brain) I had mild LVH for many years which was stable every year t my checkup until june 2018 when they discovered the Thickening was very severe. Then the cardiologists had me genetically tested to see if I'd inherited a faulty gene but it was negative so they think it the baby's that caused it....what about you?

Well I had normal bp and good health.Suddenly in March I felt run down and had constant rapid heart.Went to A&E and my bp was 244/133 so took me to resus and dripped nitroglycerin in to lower it ASAP.Then started on pills and admitted me for five days.I'm on two meds for bp which is great at home but not at the doctors.Had an echo which diagnosed mild lvh and a bit of mild thickening of the aortic and mitral valves but otherwise normal.My ecg shows lvh though as st depressions.Got a lot of burning pain at first on meds but checked out OK at A&E.Eventually got to see a cardiologist about that on 5/12 plus arrhythmias.He has called for a ct angiogram, a five day ecg event monitor and a 24 hour bp measurement.He says he's not worried but knows I am so have the tests and then we'll address your anxiety.Gave me propanolol for the palpitations and anxiety as well.Really came as a shock so lost a lot of weight by becoming plant based with some fish plus low fat dairy.Now normal weight, also having CBT for anxiety.So you've had mild LVH for years.I'd never heard of Fabrys before, how else does it affect you?

4.5st loss? YOU ARE MY HERO!

I need to lose another two stone - I'm at a 'plateau' point just now but hope floats I can soon push a little harder (just about over an acute flare of my recurrent pericarditis).

Ha ha...two stone is really good though.Glad you're on the mend.

Thank-you:) I'm itching to get back to more vigorous exercise - even at my age (63) I can lose weight 'easily' if I can be very active. Also sitting with my feet up and doing only minimal housework is

driving.

me.

mad!

Recovery from an acute flare always feels like an endless wait, it takes months to get back to feeling well again.

And you're still my hero - my piddly loss (one stone so far that thankfully does stay off. So far) is nothing to yours, I am so awed and inspired to keep at it!

Not baby's I meant fabry's lol

Hi SoWhatNow

I think your cardiologist has either a weird sense of humour or he was trying to frighten you into action! In my experience the more normal approach is to suggest that you don't worry, but you've got xxxxx wrong with you, we can give you a range of medicines that will manage the problem and it would help if you modified your lifestyle - certainly worked for me once I'd got my head around it all - I think if he'd have said you've got 12 months I'd have had another cardiac arrest.

As others have said, the medicines will certainly help to contain your high blood pressure, a good diet - Mediterranean one is the best way to go, weight loss and maintaining a healthy BMI and keeping as active as you can will all help.

I'd definitely give up the vaping as nicotine pushes blood pressure up.

Have a chat with your GP, there are a lot of resources available to hep with all these things.

My husband has a long history of heart problems and and has been living with HF since 2012 he has had a number of HA's since then and two in the last year, He has LVH, After the one in April this year he was discharged with the consultants words ringing in our ears "Nothing more we can do for you other than treat you with meds" We were shocked weeks later while at a GP app i told him what had been said and he said "You are all ready maxed out on meds sorry sometimes there is nothing more they can do" So then like you say i'm thinking my husband is a dead man walking, I start to kick up a fuss about being left to care for my husband when he should be under someones wing, it took 6 mths to see another consultant who said he would fit him with a defib and put him on a new heart drug, He did that and things have started to look up again,

One bit of advice i will offer you is if you land up in hospital ask "can i have a follow up please"? Then if you are ref for scans or treatment ask "How long should i leave it before i should have a app through? "Who should i contact if i don't hear anything?" Chase every little app up, Get on the phone and be a pain so they don't forget you, It's something i have to do for hubby tomorrow too,

New drugs are coming onto the market all the time, The drug my husband has been on for about 6 weeks he wasn't allowed it in 2016, So if the heart clinic sign you off get your GP to try and ref you back, Keep all the app, Ask lots of things, Write list to take with you, Point out all the things you are doing to help yourself,

My hubby was egged on to improve his health himself, which he did, His heart improved too so much so that he was too fit for the then new drug, His heart went downhill but he is now too old [61] for a heart transplant, So you keep at it, good luck

Lezzers
Lezzers in reply to mitchell48

Has your husband been told he's too old for a transplant as the age limit is 64

mitchell48
mitchell48 in reply to Lezzers

Yes, They told us 60 was the limit

Lezzers
Lezzers in reply to mitchell48

Are you in the UK? Both my husband and a friend were told by their medical team that 65 was the age limit. The reason being at that age your other organs are starting to age also. This link may help with the age issue, maybe discuss it with your husbands consultant it may be his age is not an issue but you do have to be medically suitable.

nhs.uk/conditions/heart-tra...

Many, many thanks to you who took the time to post, you've been a real shot in the arm and helped me get through a very dark experience, I'm very sorry for not replying to you individually (yet) after you've made the effort to help me, I will do so soon! It's been hectic this close to Christmas and I haven't had the chance to be online let alone do much else.

I've started a new medication for BP, 1.25 mg of nebivolol a day, had 2 doses and suffered no crippling leg cramps yet (fingers crossed), I've also cut out caffeine permenantly (I was mainlining the stuff through drinking diet coke constantly), still a lot more to do (will take on board everything said here) but making some immediate steps and moving in the right direction.

Merry Christmas to you all and a happy new year, thank you again for helping me and helping others when it's sorely needed.

Merry Christmas

You may also like...