Good news for those suffering from he... - British Heart Fou...

British Heart Foundation

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Good news for those suffering from heart failure, you CAN recover, I DID, thanks God.

First sorry for long post but it could be really helpful to those with heart failure.

Nov 2019 ejection fraction at 15% , Mitral valve regurgitations (means not even pumping the 15% out correctly!), Got steadily worse, movement severely restricted, 80-year-old man fitter than me..and i was very fit previously. I thought the end was near , made my will and started tidying up my affairs at 54 years old.....By April back in A&E. They drain 10 kg of water from me via intravenous diuretics yes you read that right. Lost a further 4+ kg out of hospital- lowest weight 90.7 kg highest weight 110 kg before!!

I counted around 9 doctors, pharmaceutical nurse and other specialists. health care I received was second to none. I also used a private hospital for some things because I wanted to get on with it. Money of lesser importance, your health is your wealth. Private medicine in combination with the public-health service can be very good.

Overjoyed because could walk 1/2 mile. Plenty of anxiety attacks, Felt euphoric on waking as I had improved so much. Health improved day by day. Weight very slowly increased. medicine adjusted - entresto, furosemide(Increased dose) eplerenone and bisoprolol. All medicines slowly increased.

November 2020. Had echocardiogram. Waited quietly for results and didn't contact hospital. Results came back in Feb. ejection fraction up to 46%, ( normal person is 40% - 54%) Mitral valve regurgitation largely resolved. Some long-term impaired heart function, expected because you can't have heart failure without having impaired function!! Couldn't believe it phoned everybody with the good news.

Private echo in March, ejection fraction 47% mitral valve regurgitation almost completely resolved (like normal person) medicine dose adjusted again and poss will be adjusted in near future + additional medicines added later.

No ICD to be fitted in heart, discussion appointment for heart transplant cancelled. Thanks to everyone here for support and advice.

Here is some good strong solid advice for those who have heart failure.

To some extent I believe your possibility of recovery depends upon the condition and function of the other organs in your body and any pre-existing medical conditions. Therefore-

1/ if you are overweight you need to lose that weight, whatever it takes.

2/ if it is safe for you to do so you need to walk between two and 3 miles minimum six days a week.

3/ you need to buy a blood pressure Monitor(20 quid from eBay) and a set of scales.

You need to weigh yourself 4 x per day. Your weight will vary throughout different times of the day. That's why dieting can be confusing for people most of the immediate loss is water which can be put back on quite quickly. Keep a record and see if you have (approx 1.5kg at the SAME TIME OF THE DAY) increased weight without explanation. Blood is over 60% water that means you're hanging onto the water . Your medicine needs to be adjusted -probably.

4/ you will be very lucky if your GP does anything except follow the guidance of the consultant. They are NOT heart specialists they follow the consultants guidance. Therefore if you do not have access to heart nurse/consultant bad things trundle along for months and months and months. This is wrong. They need to be dealt with earlier. Usually medicine doses can be dealt with over the phone these days (One positive thing post covid )so you may actually get consultants appointment for medicines far quicker.If not go private consultation around 225.

5/ Your assigned heart nurse is very important. Build up a good relationship with him/her, they can help you. Talk to them.

6/NO salt on food use ground black pepper or herbs.NO salt substitutes.

7/ I'm afraid alcohol if not completely off the agenda is severley restricted due to the interaction with some medicines /blood pressure. Getting---ed or hammered could be fatal.

8/ Everyone's body is different but avoid excessive caffeine . Lots of cups of tea and coffee all day.

All this may seem rather saddening but if you had seen the people I have seen in hospital you wouldn't complain at all......

8/ my personal advice to myself. I have an extra supply of furosemide I bought privately. Available over the counter in Greece for example and I suspect many other countries. If I start holding onto water in the future. While I'm waiting for the doctor/Consultant/ delays in the health service, I already know the increased dose that I could take over short-term without doing myself any damage.

As I think this post may be of valuable interest to people who are going through what I went through occasionally I may repost this.

I wish you all continuing recovery and good health

Nick

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10gingercats3 years ago

My GP ignored my background heart condition when I had leg liquid overload for c 2 years. Then I ran into serious trouble and the local AAU at the John radcliffe Hospital Oxford took drastic action with meds. and I lost a stone in weight OVERNIGHT.Sice then, and with heart failure plus I am pretty lean anyway, I have began to climb back tewards far better health.I have severe tricuspid leak and at 82 not likely i will have surgery but meds. doing the jobs to keep me well. Went into depression over diagnosis but ok now. yes to most of your suggestions re, diet, walking, etc. My weight ,I am female, is now 8 stone four kilos. at 5 feet two inches so all is much better. I had dropped down to about seven stone . many thanks for your excellent e mail.

hf54 in reply to 10gingercats3 years ago

Thank you for your kind reply. I wrote out the post because I thought that it would definitely be of use. My GP was exactly the same about the water gain. This is where I believe private medicine can definitely play a part you can get in there within a couple of days and a specialist can tell you. In Greece this is different- you take 50 or €70 and go straight to specialist.... If it's any help I have cats for many years,my favourite one was ginger (And white) I try not to think about him too much. He's been dead about eight years. I thought about him last night and still miss him to this day. His ashes are up on the mantelpiece and he had a lovely temperament, lovely big old boy....

10gingercats in reply to hf543 years ago

Yes. I am listenening to my GP less and less when it comes to matters of the heart.I have access to a cardio. nurse who works for my cardiologist...nhs. But when she did not return my calls i got pretty 'shirty' as there are 3 of them and a none reply is just not on. That worked and noew she is in touch quite frequently. I also complained to another doc. i see in the same hospital about the non return of calls and it seems to have shaken them all up a bit. I take aboad you comments about using private docs as as well as nhs.I was about to when my nhs appoint. for cardiol. suddenly jumped into life and she is fine.But I question her carefully re. all suggestions and meds. Another doc. I have is even better and she has found my blood quality to be lacking and she has requested an infusion for iron stores .Apparently heart failure can cause some blood elements to be low,ferratin for example but also other minor elements in the blood.I was also low in folic acid. None of this was picked up by my GP .Your post is a very important one and hope it is noticed by 'the powers that be'.

hf54 in reply to 10gingercats3 years ago

i already told the head cardiologist hopefully someone took note!

Altitude73 years ago

Dear hf54,I have left ventricle hear failure with an ejection fraction of 25%. I have has no apetite. I am on Candersartan and 3.125mg Carvedilol. I have been given 40mg furosemide for the water retenion and swelling in the legs and feet. My water retention has gone down but I feel so weak. So breathless climbing stairs.

hf54 in reply to Altitude73 years ago

Very sorry to hear this. My symptoms were the same as yours, the specialist needs to establish if you are retaining water this is a strong cause of the weakness / breathlessness. In my experience 40 mg is a very low dose and I don't think that I'm going to be able to get by on 40 mg even with my dramatic increase in health. I'm thinking of putting it up again. If you are already retain water then the 40 mg is unlikely to shift off the excess water. I am on ENTRESTO this works very well and BISOPROLOL. In my opinion your lack of appetite(I had the same) can be caused by water retention around the stomach. If you have only recently started on these medicines(You don't say) then they have to be slowly increased up as you may have an intolerance to them. they have to be increased slowly. This is why it can take you over a year to understand"where you are at" I couldn't believe this when I first heard it but I know it to be true

Altitude7 in reply to hf543 years ago

Thank you so much hf54. So in your opinion would these have to be titrated higher in the long term to make a difference. Currently 1 tablet carvedilol 3.125mg Candersartan twice a day 1x 2mg 1x 4mg. Furosemide 40mg x1 a day. Someone else mentioned Entresto to me aswell. Visibly i cannot see the water on the stomach as on the legs and feet but you may be certainly correct on the lack of apetite due to the water in the stomach.

hf54 in reply to Altitude73 years ago

it is the water at least in part.whats your height/weight

Altitude7 in reply to hf543 years ago

hf54, I had been 13st but came down to 9 3/4 st.

hf54 in reply to Altitude73 years ago

oh and when did they first prescribe your medicine

Altitude7 in reply to hf543 years ago

i spent 10 days in Queens a couple of weeks back due to a stomach bacterial infection which had to be treated. Since I left there i was prescribed the carvedrilol. Prior to this I took only 1 tablet of 2mg candersartan for 5 months and 20mg of furosemide for 5 months aswell but this table was intermittent.

hf54 in reply to Altitude73 years ago

It definitely sounds like your dose of bisoprolol is too low. Ask them if I have severe water retention how is it possible for me to lose this water retention and regain my mobility tell them you need to go on Iv diuretics for 24 hours and see what your weight is then that's the weight you need to maintain. That's the weight that needs to be maintained with the dose.

Altitude7 in reply to hf543 years ago

hf, how will i know the titration amount is optimum as I move up. Will i just feel the improvement over time

hf54 in reply to Altitude73 years ago

Yes you will definitely feel improvement. If you have just started on the furosemide then they need to do the kidney tests to check your kidneys are okay before increasing the dose this may be the reason. The main treatment for heart failure is the medicines themselves. Your condition sounds very similar to mine. I can speak for myself when I say if this happened again and I would want to get all the water off and then try to maintain my weight which can mean the blood should the being pumped around your body as it should. That's assuming there is nothing else that I don't know about the doctors do.

hf54 in reply to Altitude73 years ago

sorry should clarify furosemide.

Prada47 in reply to Altitude73 years ago

Hi Altitude

the Only person who can recommend medication changes is your Consultant/ GP or Heart Nurse. Only a Cardiologist or Heart Nurse Specialist can prescribe Entresto. To much Furosemide can I believe lower BP so follow the Medical Advice and don't follow recommendation from well meaning fellow travellers on the road to recovery.

ps Heart Failure Can Not be Cured, symptoms can be improved with Medication and Interventions CRT etc.

EF is only one indication, an increase in EF is pretty standard after starting Medication for Heart Failure but it does not indicate a recovery.

From A Fellow Traveller on the Route.

Don't forget here in the UK your Private Consultant is also your NHS Consultant in probably 90 % of Cases !!!! Harley Street Heart Clinic is First Class I only know because my Employer sent me there prior to doing a job out in a remote desert location.

Vaccinated Hands Face Space to Stay Safe

hf54 in reply to Prada473 years ago

I'm looking through your post and and can see straight through that it is a thinly veiled sleight at myself so I will respond.1/ No one suggests that heart failure can be cured. Neither me or the responder or anyone else so far. Read the headline slowly one more time.

2/ What difference does it make if the private consultant also splits work between NHS/Private. When you visit an NHS hospital you don't pick your consultant or your appointment.At a private hospital you choose your consultant and you see them far quicker and for longer period with a greater level of personal attention generally. Fact.

If that doesn't work for you fine but it might work for others.

3/ Nobody has ever suggested Entresto is anything other than prescribed medicine. The consultants do change medicines, they did for me and they have done for others on this forum. You should know that.

4/ an improvement in EF is one component of a recovery and so is VERY important in this context. The combination of all factors can indicate whether the recovery is good. It is a matter of fact.

5/ I can tell you also matter-of-fact how a patient describes the symptoms to the consultants can have an impact on how much frusemide you may be prescribed.

6/ you state "do not listen to (well-meaning) advice from fellow travellers on the route" well what on earth is the forum for? You then state"From a fellow traveller on the route" So by your own words we should not listen to you!

Your advice is -

"only a doctor can give a prescribed medicine, don't listen to fellow travellers (Me and anyone else who post on here) private doctors work for the public health service as well, don't forget to get vaccinated and wash your hands and face and keep a distance and I am also a fellow traveller.

These type of replies are really unhelpful when all I was seeking to do was trying to encourage people and advise them from a position of knowledge and genuine experience.

Thanks for that...

Prada47 in reply to hf543 years ago

Hi hf54It wasn't a thinly veiled anything, it was advice to only take instructions from your Medical Professional. If I understand it correctly your not in the UK ?? we have a very good Health Care System and it is Free at Point of Use. You tend to get the same Consultant Privately as you do on the NHS that is a Fact. There would not be enough Consultants to go round if that wasn't the case !!!

The issue of Medication is that Yes the Medic s listen to the Patient BUT also observe ( Breathing Patterns ) ( How the patient Walks into the Room or Rises from a Chair ) and there is no better way to Observe Water Retention than ( Visual Observation ). These are just basic facts and believe me I have been on this journey for a very long time. I am not prone to giving advice I leave that to Professionals.

Vaccinated Hands face Space to Stay safe

hf54 in reply to Prada473 years ago

Im afraid you are incorrect again,1/First of all I don't live in Greece all the time , your assumption is incorrect.

2/nobody is giving"instructions" here, only good solid advice diet most of which is backed by the BHF. You can see by the comments it is useful for people. I am pleased to be able to help people and your attempt to paint my advice as incorrect with your own inaccurate and incorrect advice as the"correct" advice is disappointing.

3/"You tend to get the same consultant privately as you do on the NHS that is fact" Absolutely incorrect. Do you think private hospitals just employ anybody who works for the NHS they can get? Lol. They try to employ the best in their field.

whilst it is true that many times the chief consultant "Public" often works " private " , this does not mean that they personally attend to your case, give extended appointments and other benefits. If you believe all doctors, consultants, lawyers etc are the same then you are welcome to keep believing that.

By your own words you say that the reason you went to a private hospital was because somebody else paid for what seems Basic medicine..... I have combined private medicine with public medicine on many occasions with excellent results and service from both sides.4/I never stated anywhere that the medic does not observe the patient. You have introduced Visual observation into your earlier statement taking the discussion into a different area and arguing on a topic but I never claimed or introduced. Therefore this is a private discussion with yourself.

If I were you I would stop now, it's not getting any better

Prada47 in reply to hf543 years ago

In your opinion that is !!! and after all it is just your opinion, like mine is my opinion.

hf54 wrote "It definitely sounds like your dose of bisoprolol is too low. Ask them if I have severe water retention how is it possible for me to lose this water retention and regain my mobility tell them you need to go on Iv diuretics for 24 hours and see what your weight is then that's the weight you need to maintain. That's the weight that needs to be maintained with the dose"

That is again your opinion and nothing else sorry I don't mean to sound pedantic but !!!!

hf wrote " I'm going to be able to get by on 40 mg even with my dramatic increase in health. I'm thinking of putting it up again".

Your thinking of putting it up again or your Medical Professional is ??

You can see how I made the connection to Greece

hf 54 wrote " In Greece this is different- you take 50 or €70 and go straight to specialist ""

I rest my case and won't respond anymore bye

Vaccinated Hands Face Space to Stay Safe

hf54 in reply to Prada473 years ago

thank goodness youve gone...

3 years ago

Excellent post. Maybe ask admin if they want to add it to the list of pinned posts 3rd section down on the right

Altitude73 years ago

Thank you so much hf54

Lovetheoutdoors3 years ago

Such a well written and informative piece. Stay well. I too am amazed at the improvement in my health, and not for the first time. I'm January 2020 I was taken to hospital with a suspected heart attack. Tests revealed I had myocarditis. Fast forward 15 months and I feel so fortunate. I remember the pain, discomfort and worry clearly. The infection affected the muscles in my heart chest and up into my neck and throat. At one stage it was so painful just to swallow my own saliva.

But with nhs care and meds I gradually recovered. I completely have up alcohol and caffeine in 2020 and luckily don't miss either. I started walking, at first a few yards. Over time I was able to increase my distance. I'm still on meds and due a review in August. Yesterday I did a long walk with my husband. It was a beautiful day, the sun was shining. We walked from our cottage down the road and over the fields taking in nature in all her glory. We walked 6 miles! Like you said, health is more important than wealth.

're my comment, my amazement at the improvement in my health, not for the first time. I too am thankful to have fully recovered from breast cancer. I was diagnosed in 1988. Now 33 years later, aged 73 I have so very much to be thankful for. Take care everyone and look after your health. Please don't ignore what your body is trying to tell you.

hf54 in reply to Lovetheoutdoors3 years ago

Thank you so much for your warm response. I am very pleased to hear that you're making a recovery. I was the same just a short distance walking in the beginning and now I can easily walk 3 miles at a brisk pace. Walking is an excellent thing as long as you don't put too much strain on the heart my father little 93 and all his life the only main exercise he did was walking. I wish you the very best for continued recovery and a long life

Mememe113 years ago

Wow amazing. Thank you so much for sharing.

Mark_tourguide3 years ago

Hi - many thanks for your detail, really helpful! I have mitral regurgitation due to valve prolapse - did you have the same? Interesting that it can ‘rectify’ itself if so. Do you know why/how this happened?

hf54 in reply to Mark_tourguide3 years ago

Hi Mark, the regurgitation is combined with or due to heart failure left ventricle. The medicines really worked well in my case and I'm fortunate that I had a healthy body otherwise and good kidneys which must have assisted my recovery in some way. I am told that than my mitral valve is more or less like a normal person back in November 19 it certainly wasn't!

cowparsley3 years ago

Thank you for that post.Most informative and helpful.

hf54 in reply to cowparsley3 years ago

Thank you you very much cow parsley. It's good to be able to help people. I remember how terrified I was when I first had my diagnosis, how devastated I felt and the anxiety attacks I had. I hope that my post will encourage some people that they may be able to recover from this and lead in longer and normal life.

BigheartD3 years ago

Your post is really appreciated HF54 thanks for taking the time. A really positive outcome for you and long may it continue. Really gives me and I’d imagine others on the forum extra motivation to help ourselves more which you have obviously done. Always good to get that extra reminder as well, sometimes the condition can get a little over whelming. and negativity can creep in. Like yourself relatively young at 51 and can find myself panicked at fleeting moments thinking how long left. You’ve really brightened my day. Wishing you all the best going forward. What plans do you have to continue your new found good health?All the very best.

hf54 in reply to BigheartD3 years ago

It's a terrifying diagnosis big heart D it, And thank you for your kind words. If it's any help the other day I started chatting to a stranger in the street (Suddenly for no particular reason) he is a gentleman of 79 years old, suitably rotund(!) Walked with a stick and told me he had been living with heart failure for years. It may sound crazy to some people but I felt like God had sent him to give me the message. It certainly made my day and maybe realise what logically sound and kind words can do for people.

Photography123 years ago

Thank you for your post very helpful 👍

hf54 in reply to Photography123 years ago

thank you for your warm reply. Hope the information can help others

BigheartD3 years ago

Hi HF54, Another lovely little story regards the gentleman you chatted with today. These interactions are really important and help us along, especially when coming to terms with these sudden changes which can leave us vulnerable. Thanks again for sharing the positivity and all the very best.

Prada47 in reply to BigheartD3 years ago

Hello All the Correct Information you need on Heart Failure is available from either the BHF, or the Pumping Marvellous Foundation. Oh and don't forget from your Cardiologist or Heart Failure Nurse.

I would love to hear the Specialist advice when you tell them you need an IV drip of diuretics !!!

Vaccinated Hands Face Space

hf54 in reply to Prada473 years ago

First of all Troll you shouldn't be posting inappropriately on the above thread because the comments above have got nothing to do with you or your grievance. They are a personal discussion between myself and the gentleman . Your post clearly implies that as information is available on the BHF website(Great) then we shouldn't be offering each other advice, the very thing the website is partially designed to do! Everything you post on this thread is troll like , unconstructive, incorrect and offers nothing .

irrelevant nonsense, Micro arguments, incorrect facts. You need to get out and exercise rather than wasting your time trolling other threads.

In your last post you told us as your "final words" you you didn't want to argue -Bye. Now without provocation you are back again! lol!

you have nothing to offer here please form your own posts that people can read about and make up their own mind. You can discuss your own advice with people who respond to your OWN posts. That seems fair and reasonable to most people....

BigheartD in reply to Prada473 years ago

Hi Prada, I didn’t understand the reply of yours regarding an IV drip initially. It was only after seeing Nicks reply (HF54) that I realised it was aimed at him and in a negative way. The forum is here to inform and also a place where we can all support one another dealing with our heart conditions. From experience we can have our challenges dealing with this, both good and not so good days physically and emotionally. Nick has posted some really positive information on this forum which has been appreciated by many of us. I believe he writes with the right intentions, from a place of kindness. I’m not defending Nick just replying to the message you left for me.

I am wishing you all the best on your journey Prada47.

BHFNurse_ReginaBHF Nurse3 years ago

Thank you for sharing your experience and your health story with everyone, I am sure it is very helpful for others with similar health conditions to read. Just a quick note to emphasize that any patients who have heart failure, it would be advisable to discuss any medication changes or changes in symptoms with their health care professional who is looking after them, such as a GP, heart failure nurse specialist or cardiologist.

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