Diagnosed with heart failure at 31

Hi thanks for reply yes I was born with this they said but never been picked up until now , my auntie has had her valve replaced at age 60 it's just because am only 32 but I feel so tired all the time am dizzy I have fainted a few times in my work place am a dental nurse so had to be sent home . Just so worrying I feel like am a walking time bomb

Two people I have met were born with it. One was a professional dancer in musicals and was not detected until she had a chest infection long after she retired. Another is a hard working Guy in his 30'swith a fishing boat and his also discovered by chance.

Like me both had aortic valve replacements.

I want to get this sorted soon as possible I worry about me getting worse , I feel because they look at me as a young girl who is looking healthy on outside who is a working An has a daughter to run after that am healthy but I feel completely drained An such a different person the past year because of my symptoms , I sometimes go that dizzy I lie down an then I throw up with it it's a horrible feeling x

The 38mm aortic valve should tell them all they need to know.

It usually pays to be pushy and contact consultants secretary or write directly to him.

What medications have you been prescribed?

I was on ramapril but he took me off it as he was worried about something to do with damage or something I can't go on beta blockers due to asthma

No I don't have any disability insurance am I able to get that ??? I am a dental nurse but even now I have fainted a few times in work an had to be sent home .

Symptoms got lot more worse I am dizzy a lot more and get a pain in my chest every day .

Am going for another ultra sound tomorrow I just worry one day I will have heart attack so young

Thank you for writing back to me , I live in the U.K. So I have the NHS the consultant told me I was born with this but it was never picked up it's just a worry as symptoms only started getting worse the past 6 'months I have fainted a few times , I know get a dull aching pain in chest every day. I am so tired I just don't feel the person I use to be , I can't even go to my gym classes any more as I feel so dizzy all the time . I was on ramapril but they took me off that and I can't have beta blockers as am asthmatic.

Laura...would supplemental oxygen help? It would make breathing easier and might give you more energy....special hugs to your wee one

Aww no am not that bad that I need oxygen , I can still use my inhalers it's the dizziness that gets to me more An tiredness I use to do 3 insanity gym classes a week I couldn't even do 1 now.

what is your oxygen level...it may be dropping with activity...hypoxia can make one dizzy...

Awww so sorry to hear that , am glad your husband is doing well he must be so proud of you doing what you did for him.

I hope I am told soon what will happen next , I just feel like am a 32 year old in a 70 year old body just feel exhausted x

Hi Laura,

I'm 46 & was diagnosed with severe heart failure last year. When I found out I was terrified. It felt like my life was over & I wasn't going to be there for my children - who I may add are much older than your little one. In fact I quite envy you as 2-year-olds much easier to deal with than young adults!

What you need to remember is it is ok to be scared. This is a major thing to get your head around, but also remember heart failure does not mean a death sentence. Medication &/or surgery can sometimes completely resolve the problem. The rest of the time, meds &/or surgery will keep people alive for many, many years. I know someone diagnosed at the age of 38 who recently passed away aged 84. A year after my own diagnosis, I'm feeling much much better. I'm still in heart failure & always will be, but I'm looking forward to my future & not stressing that I won't be here tomorrow.

See what your cardiologist has planned for you. If your consultant is half as good as mine, you'll be looked after magnificently. The NHS may be underfunded, but the staff are great so try not to worry. I'm wishing you all the best for your appointment & hope your symptoms & your heart can be improved.

Thank you so much for lifting my spirits this helped me feel better I just worry all the time an feel one day I will just drop dead xxx

I find that cardiology is the best NHS area. As a young doctor said, our job is to keep your heart beating.

 

Yes it is I am at broadgreen hospital in Liverpool who our specialised in so many heart procedures so fingers crossed I go for my ultra sound on heart again tomorrow my last one was August they keep scanning me every 3 months now .

Do you have a date to see the consultant? As you are symtomatic it should not  take very long.

When I go for my INR checks I meet people who have all sorts of heart problems including one man who had one of the quite early heart transplants.

There are some amazing recovery stories on this forum from people much younger than you. 

Aww really , I see consultant again in February I seen him in October then he sent me for A MRI scan An now then he wanted another heart ultra sound so go for that tomorrow maybe he might see me after these tests if it shows anything different just I am worried as when am doing day to day things I feel so dizzy An get chest pain quite a lot now the chest pain wasn't there beginning of the year it's only come about the past 2 months . Do you think I will have surgery soon ? I can't be put on beta blockers because of my asthma x

Have you had a stress echocardiogram as well?

No haven't had one of them is that when I exercise it's because I go dizzy when exercise

Exercise or given a drug that speeds up the heart.

If you cannot have the main drugs it should be a signal for them to operate soon. Beta blockers would certainly not be good for you.

Before my valve replacement I was given Nicorandel for my chest pain that would also not be suitable for you and I now see that it is not prescribed much due to problems it caused.

There is a lot of information on heart failure on this site that you may not yet have found.

https://patient.info/search.asp?searchterm=Heart+failure&searchcoll=All

There is also a booklet  'living with heart failure' that you can download from bhf.org.uk althought hospitals usually have it and others in the outpatient areas.

Good luck with your hospital appointment.

Laura - sounds as though you consultant is onto your case. Don't be afraid to ask questions even if they seem a little silly, I have found that the more interest you take in youself the more interested the Dr's and consultants become, they seem to like someone who will take their advice, get on a diet if required, do the exercises, ask if the hospital has a rehab program, big help for us in understanding what when and where. I attended each and every session my husband went to, big help for him in understanding to pace himself, you have to slooooow down, but not stop execisering, although looking after a little one is probabaly all you need for now.

example - husband so dizzy in hospital he needed help moving from his bed to the toilet, but when I got him home as per the dr's advice, started him moving, from his easy chair to the front door where we had another chair, stopping, and then repeating, built that up to 3 miles over 18 months, dr's amazed, we used one letter box at a time as the goal every 3-4 days, sometimes a week.  His ejection fraction was 23% at his worst, came back to high 40%, and dropped back to 35% when they installed pacemaker, I have learnt to use his ejection fraction as a indication of how well he is doing.

I will do lyn I joined slimming world I am not a big frame am 5ft 6 an I weighed 10st 9 so I have lost 1stone now so now weigh 9st 9 I do walk a lot An as a dental nurse am always on my feet busy An with little one.

I will do what ever they advise me too . Thanks so much your advice , I have got heart scan today so hopefully may know a little more .

Hi Laura , Hope  you're feeling better and not finding the two litle ones too much of a strainl

I have just begun a cardiac rehab program here,  It involves 1 1/2 ours twice a week of discussion and exercise.  I'm told the exercise is very important in heart health. I had a 2 hour assessment today which incuded an electrocariogram, a test to see how far I could walk in six minutes, an interview with a doctor, a stress test, This will be followed later by an interview sith a dietiician.  I have to keep a food diary for 3 weekdays and one weekend before I see her. (this is during the holiday season!)

 Check on what's possibly making you dizzyl  It could be  a medication.  Exercise is terribly important.

Thanks Judith , I have been took off my blood pressure medication am not on any medication at moment I went for a echo scan on heart yesterday I told the senographer I had been getting a pain in my chest for past few weeks which was getting a lot more intense especially when I breathed in , he was mentioning that in report to consultant he said he was sending the report straight over so hopefully I should hear soon , am just so exhausted am in bed by 7pm sometimes which for a 32 year old is silly .

We also went to the library and borrowed many books on heart issues, educated yourselves so we are using the right words, medical words to describe what is going on when he isn't feeling well. Seems to baffle the Dr's that we know so much, have even been asked if I am a nurse, NO, but I'm not telling them that, the consultant does know though, I owned up to him, he thought it was funny.

I have also researched my husbands medication's the Dr's have given him, and even they have been adjusted after my suggestion, why the Dr's didn't adjust I still do not understand as he is doing so much better on his new medication, water based colesterol and blood pressure medication rather than oil based colesterol seems to work better for him. less feeling of pain in joints.

Also found he suffered from tinnitus after they put him on aspirin, nearly drove him nuts with a tree full of cicadas in his left ear, quite by chance three years later had really bad headaches, blocked nose, sore throat, local Dr diagnosed reflux, and gave him Nexium, settles acid in your stomach, three days after starting nexium tinnitus disappeared, he is still on nexium 3 years later, cardio Dr's even say it can do no harm, and if it works for him, well and good.

Thanks derek I hope I have surgery soon I cannot go much longer with is feeling dizzy An sickness all the time An the pain in my chest getting worse.

Did you have chest pain ??it starts to hurt when breathing in when the pain comes on.

I just feel am 32 but feel like I haven't got the energy I use to have , also I would like another child in future but so scared about child birth An pregnancy with my heart condition .

I had some chest pain when walking but it was not too bad and was not angina. I tried to use it to speed up my surgery. Just as well I did as when I went to A&E one day a nurse hinted that I should check on my referral for surgery at another hospital. When I did I found that it was still sitting in the registrars out tray and he had gone on a months holiday.

excellent advice!

Does he get Nexium or the generic version ?  Doctors are not encouraged to prescribe Nexium now. In fact when I present a prescription for it to the local pharmacy they don't have it nor does their local depot who have to order it for them.

It can do harm if you read the patient information leaflet. It is not intended for long time use although I have been taking for many years. 

He takes Nexium, we have not problems getting it here in Australia, and Dr has never mentioned it doing long term damage.

I have read the information leaflet and it even mentions that it can give you tinnitus as a side effect.

Chemists and Dr and even his cardio amazed that it put a stop to the tinnitus.

Cardio specailist even mentioned they were trying it in the public heart hospital for their patients with a chronic cough, and also patients reporting tinnitus, he said to me it was working very well, but have not had follow up from him, not that he will tell me, other than a comment in general when I mention what his tablets are.

They check each and every time we visit to make sure the GP hasn't changed anything the heart hospital dosn't know about, this time we have had to add keflex for blood thinning, morphine for pain.

My ditz of a husband has broken his heel and lower tibia in a ladder climbing accident, he thinks he is going to get away with the cardio consultant not seeing him in a cast, as his ortheopedic appt is four days before, he is living in foolish hope which I try to shoot down not get tooooo hopeful, his cardio is going to be horrified, because  he has told him NO CLIMBING LADDERS

Derek - my husbands condition is on the serious end of heart failure, his left venticle is all stretched out, EF 23%, and slowly slipping, left and right bundle blockage, 3 lead pacemaker and defibulator installed earlier this year at Easter, saved his life, has been better but long term it is unlikely he will live to see his 90's, although the heart hospital prediction nearly six years ago was he would not live 3 months and instructions to our GP were not to sign death cert, but in all his investigations they discovered he has no colesterol cloggin up his veins and arteries. I am only too aware of his condition my father died of the same condition 30 years ago before the miricle drugs of today were avialable, but at the same time it was found he had lived his entire life with dialated cardiomyopathy, never recognised until he had a heart attack, and then they were amazed he had been as well as he was, he was 70, and as fit as a buck rat, so much for Dr's preaching doom and gloom about heart conditions, not so.

I feel not good today woke up this morning with a bad headache and dizziness is worse than ever today

Can you explain the difference between " water based colesterol and blood pressure medication rather than oil based colesterol seems to work better for him"

The reluctance in prescribing Nexium in the UK is the cost.It is several times higher than the generic versions.

atorvastatin and perindopril work though the oil or fat in your body, they are what the heart hospital started my husband on, and he took for about 3 years.

I then found out about pravastatin and irbesartan, these work through the water in your body, husband has been on them for about 2 years now.

I presented this information to his consultant at the heart hospital, as my husband was having alot of joint pain, and more subtle issues, they agreed and changed him over, but why should I have to be person being pro-active with this issue.

pain is a known side effect of colesterol medication, but on the water based tablets no where near as much joint pain.

How did I find out about this, a very senior cardiologist not our consultant, did not want to stand on our consultants toes, knew him very well, and said you are in really good hands, put onto him by a family contact, and he said get your husband changed over immediatly to the water tablets, and he said he is changing all his patients over, and the results have been very good.

Atorvastatin and perindopril were prescribed for me by a Professor at Imperial College in London. My GP and his partners were so impressed with the professors comments on perindopril that he said they were switching most of their hypertension patients to it. I switched back to losartan in less than two months due to side effects from perindopril.

Atorvastatin gave me muscle pain and I stopped for a while and things went back to normal. I tried it again later for a short while with the muscle pain back again.   

Like you I impress medical people with my knowledge. A neurologist had not been given my referral letter from my GP or my previous hospital notes. I gave him my version and he asked what my medical background was.

My wife jokes that in my case " White coat syndrome " means that I think that I am a doctor:-) I got a really terrible assistant cardiology registrar one day. When we left my wife said that was probably the best lecture she has been to.  I reported the consultation to my GP and he sent a letter of complaint. She wrote to me regarding his letter and said we can discuss it at your next appointment, By then she had moved on to her next training appointment. 

 

Have you heard anything yet?  And your going to bed is not at all silly, if, as I suspect, you've had a heart attack.  Another possibility is pleurisy, an inflammation of the lungs which can cause severe pain with breathingl

Sorry, not a clue, I'm taking atorvastatin once a day which is supposed to be less damaging to the liver than the older statins.  that's all I know.

Go to your nearest Emerg. now.

 

I spoke to hospital yesterday regarding my MRI and echo scan results and consultants secretary is very helpful she said he has dictated a lot of notes to be typed into letter so I will get a letter in the next week , just hope it's to put me on medication or to do some kind of surgery or something as symptoms got worse and pain in chest is every day now .