Hi, I was diagnosed with heart failure a couple of months ago when I woke up one morning struggling for breath with fluid in my lungs, having had virtually no previous symptoms. Looking back, maybe I was a bit short of breath over the last few months but did a sprint-distance triathlon 6 months ago so have a decent basic level of fitness.
I was in hospital 3 days while they did tests and they think my HF has been caused by a cardio-toxic chemo drug I was given 20 years ago, as there are no signs of blocked arteries or fibrosis etc. I've seen a cardiologist now and he says it could also be caused by high BP (I had a surgical menopause when I was 40 due to the cancer and I've been told the lack of oestrogen can cause raised BP). I'm 57 now.
I was really hoping the cardiologist could offer me some reassurance that my life won't be too severely impacted (or shortened) by this, as my dad had HF for at least 20 years and died of something else at the age of 91. However, I came away feeling quite worried as he wasn't able to offer me the reassurance I had hoped for but said it is unpredictable.
For the next 3 months they're going to monitor me on the drug treatment which they started in hospital and then do another heart scan to see how well it's working. If it's not working as well as they hope, they will probably fit a pacemaker, but he told me they only work in about 50% of cases, which worried me a lot because the next option after that is to assess me for a heart transplant.
Basically, I'm now pretty scared and worried that I've potentially only got a few years of gradually deteriorating life left in me. I still don't have any particularly noticeable symptoms, just a bit of shortness of breath every now and then, but I'm going to the gym and swimming again.
I don't know what to think but I don't think I can cope with hearing bad news right now. Any genuine reassurance people can offer would be gratefully received, but please nothing scary.
Written by
izzibear
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I’m sorry to read about your recent diagnosis of heart failure. There are quite a few of us on here who have HF so you should get some useful responses.
I was diagnosed two years ago following a heart attack. I was 51 at the time and thought my life was over, but the medications have strengthened my heart function and it is pumping at “low normal” levels. The only problem I really have is climbing stairs or hills, especially if I am carrying something. Occasionally I will have a day where I feel very fatigued but I’ve learnt to pace my activity so that these happen less often.
The best thing I found is the Pumping Marvellous Foundation. They have a useful website with lots of easy to understand information, plus a great supportive Facebook group. I’d highly recommend taking a look. Initially I was really scared about my prognosis, but armed with the right information, I feel more confident about my future and I’m sure you will too, given time and the right support.
Hello Izzibear, nearly three years in with HF to start with, came out of nowhere but still awaiting genetic testing results, I spent 2 weeks in hospital and came out not knowing what my life would be like, my first walk was 50 yards.
Now its 2 miles plus on the treadmill in 30 minutes preceded by 8km on a bike in 20 minutes.
I can understand the reluctance of the cardiologist to answer that question, we are all different. All I would say is do the right things re diet, fluids, medication and exercise and see where you go.
Make sure you get offered and accept cardio rehab, it is worth it.
I'm 4 years in with HF, due they think to radiotherapy after BC. All I can say is my HF has improved due to the current drug regime. Hang in there. I also second the recommendations for Pumping Marvelous, they are a very good source of information and support.
my story is very similar to yours with it just seeming to be appearing out of of nowhere , had always loved walking swimming etc. I also had an early radical hysterectomy (but not cancer)
let’s get to the positives , the term heart failure scared the life out of me but as I’ve read on this forum it really is badly worded and just means our heart isn’t performing as well as it could and it can be improved on 😊
I’ve also learnt a lot of medical people are quite tactless with what they say and someone else like the dr I saw last week was hey we will get you sorted there’s another 20 plus years you have left - a bit of positivity goes a long way.
After I picked myself up and dusted myself down I personally took the route that I was going to focus on the positive and what I could do for myself and wake up every morning trying to focus on raising my vibration and having a good day - a bit woo woo I know but it did distract me and make me feel that I had some control with the situation going forward.
I researched , listened to online podcasts stopped drinking ( doesn’t work for me now) changed my diet to more heart healthy drank more water ,reduced the stress in my life and did what I could to improve my sleep . Contacted talking therapies started journaling meditating and made my daily walk non negotiable continued swimming and doing yoga and Qigong as normal but listening to my body and pacing myself.
The above lifestyle does help me and so I’m hoping there’s something amongst that, that will help you feel better too. Take care and do let us know how you get on 😊x
A lot of that really resonates with me, Bluedilphin123. I am actually qualified as a yoga teacher but have been letting my practice slip and not prioritising my wellbeing. In fact, since my diagnosis I have found myself wanting to indulge in unhealthy behaviours more than before, perhaps as a misguided coping mechanism. My cardiac nurse has said heart patients really shouldn't drink alcohol but I'm struggling to accept that at the moment! I know I need to get my head round that though, and to stop the comfort eating. I have a fair bit of weight to lose and assume that it would help my heart if I could do that. I'm waiting for rehab assessment at the moment but it will probably be a few more weeks, then I will hopefully feel confident in starting to exercise more. They have told me not to do more than gentle walks for now but I have been swimming a few times and do enjoy exercise. Thank you for your very welcome support
Believe me I have days and days of comfort eating too and as for having no wine I still miss it can’t believe that I don’t have any but it’s just not a option with my conditions and the medication- maybe in the future a glass here and there maybe 😊
I could do with losing a little weight too ( don’t like the diet word) but some healthy eating will help that along and that’s a good thing plus I only enjoy ‘good cake’ these days 😊
I only do the yoga that I can and was told not to put my head lower than my heart - I find it uncomfortable laying on my front so I do the gentle moves that I can .
Just being in water is so relaxing so I still swim and do what I can - all of these things really help with my mental health which I’ve got to keep high otherwise it would be a mighty crash 😂
I set my self a few non negotiable for the morning which are water meditation, Qigong yoga ( even 10- 15 mins) a healthy breakfast and a walk if I tick those off it makes me feel so much better mentally so much better and motivates me 😊
Hi I’m 20 yrs in with heart failure caused by dilated cardiomyopathy which is progressive. Around 5 yrs ago my EF went to 10% and they talked about transplant. Last year my EF was 23% so it’s climbed after starting a cocktail of heart failure medication.
Just continue with your swimming, eating well and take the medications offered.
Cardiologists never make promises they can’t keep, but they also never give up trying to keep you alive. You have to just keep fighting.
Hello my dear, same as you last July I woke up short of breath with a tight chest. I thought at first that it may have been a chest infection. Called 111 ten minutes later there was an ambulance outside. Immediately they diagnosis fast AF I was rushed into hospital and treated, blood tests and echocardiogram showed that I have heart failure, leaky mitral valve and ejection fraction of sixteen. But over the months I have improved a lot. I have ICD fitted now as a precaution. I know this is not about me, it is about you my dear. I have explained my situation in order for you to understand the similarities. But I can promise you that you have nothing to be frightened of my dear. The only way forward I found was to own it, and not let it take me. You are already keeping a healthy lifestyle, that is a brilliant start, you are already looking after your heart. With optimal medication therapy and ICD if you need it, your chances are good. Who ever said they only work in 50 percent of cases should not have said that to you. I was told as with everything in life nothing is one hundred percent. That sounds better. I am on a new drug called entresto please make sure you are put on this if you are able to have it. My heart is now stable and I now look forward to every day. I also feel safer with my ICD Insitu because that also gives me more of a chance. Eventually we may need heart transplant, but for now we are both still here. Just need to make some minor adjustments to our daily lives, that's it. Please can you stay in touch,😊
Wow, your story is amazing, A246. Also very inspiring. Could I ask how old you are? I am on Entresto, so that's good. I was also told I probably would not be a good candidate for a heart transplant because I had breast cancer but I don't understand that... I hope it never comes to that anyway!
Awww buddy, my heart truly goes out to you my dear. I was 57 nearly 58 when diagnosed mate. How much entresto are you on. What was your ejection fraction. Also is your heart failure left or right sided. Mine is left. Xx
That is better than mine was in the beginning buddy. Entresto is an game changer, it works by blocking the bad chemical in our hearts and only lets good chemical in, it can also in some cases help the left ventricle muscle to reverse remodel thus shrinking. I pray that this happens for you. It hasn't happened for me yet, however I am grateful that it has stabilised my heart for now, hopefully it may shrink my ventricle in the future. I am also on same dose, I couldn't tolerate the highest dose as my BP went too low. There is still a lot of hope for us buddy. Please focus on that, you gotta new way of life to get your head around, but you are getting there. You have already been through too much in past. You are stronger than you know. You got this. Please stay in touch xx
Above all my dear the only way to I found to deal with my diagnosis was to be positive and brave. I found that easier than being afraid. Also on this site there is so much support out there. So many people with heart failure too. Many as above who have had it for years, these are the people that really inspire me they know so much more about the condition too. X
Just had some blood results and my BNP is 338 which she said was normal! A few other things were raised including cholesterol and blood sugar which doesn't surprise me the way I've been eating and drinking over the last few months.... Time for that diet....
Wowww see good news with your BNP. Yes please get yourself on healthy regime asap. You got long life ahead if we look after ourselves. I don't know my BNP I don't think they focus on that on NHS where I am. But I can tell you, I felt so much better on entresto definitely working xx
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