The last few weeks have been a whirlwind, I was getting out of breath and swollen feet and calves, as I have asthma I spent a long time getting tests and everything was coming back asthma not active. I also had sarcoid in the past (in the lung) but that hasn't been active in years, I did a load of new tests and they couldn't explain it. Lucky someone referred me to Cardio, just over a month ago, I turned up for a routine echo and was told I was being admitted there and then with heart failure.
There's been so much to take in, but the consultants seem to think a CRT-D was best and I had fitted last week.
I came out less than a week ago, and my breathing is normal, better than normal in fact, and my swelling has gone right down. Compared to how I felt a month ago, I feel great. I'm a cocktail of drugs and still feel sore and very uncomfortable when I sleep, but I'm only a week post op.
They think at some point I must have had cardio sarcoid in the past which kicked off the heart failure. The consultants seem to think the sarcoid has cleared up. I'm booked for a Pet scan to confirm the heart failure cause. I took an MRI before the Op and this is their conclusion.
One thing I'm confused, and I will discuss this in my follow up, how long can I expect to live now?
I've just turned 50, and the doctor said in two thirds of cases the device and drugs s the condition doesn't deteriorate and I can live a 'normal life'.
But this seems contradictory to me, the NHS website, 'Heart failure usually gets worse over time...It may eventually reach a point where it becomes very severe it's unlikely the person will live much longer' I have kids, and much rather had a realistic idea of best cases as I know worst case is I'm in the third who don't respond to the device and drugs and I go downhill quickly, but what is best case with these things, 3 years, 5 years? 10 years? 20??
I tried to google and realized that was a bad idea.
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Billywhizz10
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Thanks Wodney! I am very grateful, I think its because 4 weeks ago, I didn't know I had heart issues, but you're right , deal with the here and now, I'm alive and feel good.
Hello & Welcome
You certainly have been through it with one thing or another but I am glad they found what was wrong in time and you have had your op and now on the road to recovery
I had a triple Bypass and I asked my Surgeon the same question and she said back how long do I have to live ?
I looked at her gone out and said well you don't have heart failure and she said yes but I could have a heart attack tomorrow none of us know
I thought ok fair enough
But I was also talking to a Rehab nurse who had just seen someone who had come to visit and they had heart failure I am not sure what op they had but it was 40 years ago !
My Dad had heart failure at 52 and he was here till he was 77 and it was not heart failure that took him but something else
You have had your op , you can lead a healthy life and you could out live most because you are aware of your condition now and we are the lucky ones that get caught in time to get the ops we need
So follow what they say to do and it is early days but when you are back on your feet enjoy your life and your family and stop reading the website it always tells us the worst scenario
I am glad you are feeling so much better already x
What a great response, and you're completely right, how can anyone know how long they have. It must have been all the swelling, endless hospital food and no take-aways , coffee and snacks, but I've thrown off loads of weight and have a gizmo in his breast reminding me to try and lead a healthy lifestyle going forward. Without this diagnosis, I would have continued enjoying booze, the friday night takeaway etc, since my release I've been eating very healthy ( my wife is ensuring I do) but I have no desire for crips or boozing and junk food.
Thanks again, joining this group today I can see will have a great positive on my life.
Hi, it does sound like you have been through the mill lately. Hope you can take things steady give yourself quality time to recover not only physically but emotionally as well. It’s a tough one regarding length of life after a heart failure diagnosis and as others have said a positive mindset can be really helpful.
However heart failure is a serious diagnosis and as with any heart condition can be really unpredictable.
The huge positive is that crazy as this sounds you have a diagnosis and you are been optimised with medical and device therapy which is the mainstay of treatment for heart failure. Keeping yourself as healthy as possible will also help hugely.
None of us know what is round the corner and it is useful to make sure all your affairs are in as much order as possible. That is not to say that anything will occur, but it’s a huge weight lifted to know that should the worse happen your family will be supported.
We made a Will and sorted out all paperwork etc when I hit 40, just before I had my pacemaker implanted. I’m now 50 and a lot more stable than I was back then. It’s great that we know it’s all sorted and don’t give it a second thought now, although it did feel a bit grim at the time.
I’ve since had sepsis and a TIA both out of the blue. I’m ok but it really has taught me that life is so precious and to really try and live each day as best I can.
Don’t sweat the small stuff, make sure the ones you love know how much they are loved and be kind to yourself on both the good days and the bad days.
I'm forming an opinion with replies like yours that my answer is how long is a piece of string?
Prior to my diagnosis I did lead a unhealthy lifestyle, I've got a massive incentive now to change my ways.
Its great advice you've given here, get your affairs in order, but hope for the best, its the only way I think one can live in good mental health.
The hardest thing (for me) is thinking about my daughter, thinking I may miss out on her getting married, having kids of her own, but even here the answer to that is to do all you can do, work with the Cardio department , what else is there for us to do.
In 1999, at the age of 46,my husband had a heart attack, out of the blue, that caused a lot of damage. In 2001, he had a cardiac arrest and then an ICD fitted. About a year later, a nurse knocked on the door and introduced herself as the heart failure nurse. He had never been told he had this. Last night he was having water pistol fights with three of our young grand children in the garden. He didn't think he would see 50 let alone nearly 70.
Great reply Dixy! So happy for your husband. I feel so much better reading everyone's replies, that length of life, isn't a set number, so many factors, but being positive is the most important!!
Hi Billy whizz. Nobody knows how long we have left. I had a ICD implanted after an out of hospital cardiac arrest. I thank every day I'm still here. Live every day for today. Enjoy every moment. Enjoy your children and make awesome memories. You will get there hun 😃 x
Like you, whenever I feel myself getting glum, I remind myself of the day I got diagnosed, and remind myself how lucky I am. A loving family, employment (with a supportive boss) and I love your words, make awesome memories!!
What you have to remember is that the majority of people they've got heir statistics from are much older to start with so the death r ate will inevitably by higher and earlier.
True. I saw one site that was giving numbers for life expectancy and getting horrified until I saw they were discussing life expectancy of batteries in devices before they had to be replaced!!!
A family member was diagnosed with heart failure in her mid seventies after suffering multiple heart attacks. She never changed her very bad junk food diet, or exercised and didn't take her medication as prescribed, she also had T2 diabetes. She succumbed to heart failure at 91. So a long time really, I imagine if you do all the right lifestyle changes I see no reason you could not live a normal life span. The quality of your life with heart failure is up to you in many ways, her life choices meant for her a poor quality of life but she was content with it..
Thanks Jack, they sound like a real character, may she rest in peace. One of the Cardio nurses got back to me today, and has said much of what everyone has written, so many factors and if the person fully engages with the treatment, etc.
I feel a lot more positive, its coming to terms to with a new normal.
Hi BillyOut of the blue in Oct 2019 I had a cardiac arrest have previously been very fit (or so I thought). When I came out of the coma I was informed I had severe heart failure with an ejection fraction of 10%, two years later with a CRT-D and the right meds it reached 35%. Last week the consultant told me it looked like there would be further improvement when I next get checked.
I was lucky enough to attend cardio rehab before it all shutdown due to Covid, one of the first things we were told was to ignore all the data appearing on Google as most of this was years out of date and didn’t take into account people ages when diagnosed.
I feel better now than I have done for years and plan on having a very long and happy life.
Take care
Only take notice of the cardio team, listen to your body and look forward to seeing your children grow up and given time grandchildren as well.
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Should I have a CRT-D
MRI scan with compatible pacemaker, CRT-D or ICD
