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