Heart failure and feeling scared

[Kaz58]

Hi. I'm new here and feeling scared. I was treated for breast cancer 2015 now in remission. But I have been told I have heart failure due to chemotherapy. I had been feeling out of breath really fatigued and light headed and it was put down to the treatment I had. The last few months it had been getting worse so I saw my oncologist and she sent me for bloods which came back ok and a mugs scan which showed I had HF. When I got my results on Monday she said I would have to be admitted . I had more bloods ECG chest x-ray and a CT scan on lungs to check for blood clots. I came home on Wednesday and am waiting for someone from the cardiology team to come and see me to discuss meds. I am on ramapril. Furosemide. Procoralan. And have been told I will be put on more as soon as poss. I suffer from anxiety attacks which is not helping and I feel scared to death. Any advice would be welcome. X

[skid112 Heart Star]

Hello Kaz, welcome to the forum, really sorry to hear of your diagnosis.

there is a thread on similar here, healthunlocked.com/bhf/post...

That said more on heart failure, here healthunlocked.com/bhf/post..., here healthunlocked.com/bhf/post... and here healthunlocked.com/bhf/post....

Information on heart failure from the BHF here bhf.org.uk/heart-health/con..., including a link from macmillan cancer support and heart failure.

Whilst its true there isn't a cure currently many live full and active lives, we have members here who will be along to give their experiences. Hopefully we can be of some help and comfort to you, I know myself how shocking it is to hear news about a heart condition and how it can affect you.

Take care

Mark

[David_Sheppard]

Hi Kaz, sounds like you're suffering with the side effects of the medication to me. Look them up and see and if the symptoms you are suffering from match then it may ease your anxiety issues. I found that once I knew what was causing my lightheadedness, fatigue, nausea etc I was better able to deal with them mentally. I would get a different side effect manifest itself every couple of weeks - it's like they lined the self up to be ticked off! Eventually you're body gets use to them and the effects fade or the meds can be adjusted by your GP.

One of the side effects the meds can cause is anxiety itself - which is the hardest thing I found to deal with. Give your body time, it took mine best part of 3-4 months.

I'm not sure if your religious or not but I found prayer really helped me with my anxiety. I started going to church again and got a lot of comfort from it. I became much more relaxed at night too.

I really hope you find the answers and a solution to your condition Kaz, hang in there and things will get better.

[laura_dropstitch Heart Star]

Hi Kaz. I was diagnosed with heart failure six years ago and can relate to the terror you are feeling. I don't think the panic at diagnosis is helped by the horrendous name they give the condition. Heart failure, I thought at the time of diagnosis, surely means certain death, BUT IT DOESN'T, it really doesn't. The "failure" part of the name refers to the fact that the heart is failing to pump as effectively as you would expect it to (apologies if I'm telling you what you're already aware of, but I think it's a really important fact to get your head around) not that your heart is failing/will fail to keep you alive, and the degrees of heart failure vary massively. Many heart failure patients live very full and active lives, managing their condition with medication and lifestyle changes.

My own heart failure is managed with a variety of medications and a CRT-D device (a bit like a pacemaker with a defibrillator built in). These were problematic at first, but my medications have been tweaked over the years to minimise side-effects and my device just plods along in the background now I'm used to it. I work in the same job I had before my diagnosis, I look after my young daughter, I exercise, I enjoy life... I do get tired quite often and am sometimes breathless, but I've found a balance of rest and activity that reduces the impact of heart failure on my life. It's early days for you, I know, and it is hard, but please know that this is far from being a hopeless situation.

I know there are others on the forum who developed heart failure following cancer treatment, so hopefully they might come across your post too. The psychological impact of that must be so hard to deal with. Make sure you are getting help with the emotional as well as the physical factors - in some ways that is the toughest part of it all. I feel genuinely positive about my health and my future now, but it did take a long time and a lot of work (and support) for me to get to this point.

Treatments have come on so much in recent years and continue to improve all the time, but it's not long since heart failure was considered a death sentence and I think it still carries that air about it, so don't google it. Also, outcomes are so different depending on where you live, your ethnic background, the severity of failure etc, so again, do not google. Heart failure patients in America (for a variety of reasons) tend to have much less positive outcomes than patients in the UK and it's American results you will generally see. They don't apply to us. If you have questions, ask someone who knows about it, preferably your consultant/HF nurse/GP, whoever. Or use this forum. If you don't want to do a public post, feel free to message me with anything you think I could help with. I'm always looking for wonky-hearted friends and am happy to answer any questions, no matter how awkward, or to engage in a bit of reciprocal moaning

All the best to you and keep us all posted with your progress x

[Kaz58 in reply to laura_dropstitch]

Thanks for your reply. It's good to hear from someone going through the same condition. I was getting myself into a bit of a panic when I wrote the post which I know isn't great. I am going to see the cardiologist on the 4th of November and have a heart scan next Thursday and a appointment with cardiology nurse to sort out any more meds I need so hopefully I will feel a bit better about things when I have spoken to her. Thanks again for replying. Kaz. Xx

[laura_dropstitch Heart Star in reply to Kaz58]

I would be amazed if you weren't panicking at this stage, think it's the only realistic response. I know people told me in the beginning that my situation wasn't as bad as I felt it was and I couldn't believe them and actually got really angry with them for saying so. You sound very calm and rational by comparison! Remember to take a list of questions to your appointments, it's so easy to forget questions when the time comes and it's your best opportunity to get reliable answers. Hopefully you will start to feel more positive when you know more. Remember the BHF phoneline (with trained nurses on the other end of the phone) is there if you want to talk more generally about heart failure before your appointments, or contact any of us on this forum for a first-hand perspective. Lots of love x

[aintgotaclue in reply to laura_dropstitch]

Hi I am speaking to a group of Nurses on thursday about Hearft Failure tommrow can i have you permission to read out you reply to them ?

[Kaz58 in reply to aintgotaclue]

Yes that's fine

[aintgotaclue in reply to Kaz58]

Thanks

[SLS254 in reply to laura_dropstitch]

Thanks Laura, Ive just been diagnosed with AF / HF at 48 and your words of experience here have really helped me be more positive on the outlook. Simon

[laura_dropstitch Heart Star in reply to SLS254]

Glad to hear I've been able to help. We really do have every reason to feel positive, I think. Good luck with everything

[Smileyian in reply to laura_dropstitch]

What a wonderful reply you have given Laura. Not only does it comfort Kaz but relays an abundance of information to all of us. Exactly what this forum is all about. Notwithstanding the above many others have also answered Kas with fantastic reassurance.

[laura_dropstitch Heart Star in reply to Smileyian]

Aw, thanks

[Kaz58]

Hi. I'm sat here at the moment feeling terrible my heart is pounding and I just feel so weak and scared. What is the best thing to do when you feel like this . Sorry for being a wimp but I am so scared .

[laura_dropstitch Heart Star in reply to Kaz58]

Hope you are feeling a bit better now? Do you have any strategies you usually use for coping with anxiety? I think everyone deals with these things differently, don't they? In the early days, when I was scared, I found it helpful to distract myself, I would sew or crochet. Now I find it helps to take ownership of my situation, I like making action plans for myself and trying to make something positive out of it all. Hope you find something that works for you x

[Aqua68]

Hi Kaz, hope you're feeling better now and settled down to your new situation. I too have heart failure caused by chemo, but in my case it was diagnosed 2years ago and is related to chemo from 2008 (or so they think!) I was very ill and hospitalised 18 months ago with an ejection fraction of 10-15%,ie.very bad. Since a year ago though, it is back up to 55% or normal-ish. The meds are excellent things and hope yours are working for you.

[Pommel in reply to Aqua68]

Hi aqua68, I am more or less in the same boat as you with hf diagnosed 2years ago due to chemo 2001 & 2006. I too was down to 10-15% shocking them that I was still working and walking the dog (though I was pushing it!) I'm so glad to hear your percentage has come up so well. The drugs seem to be working for me too. Good luck!

[ozchrissy]

Kaz, I have had heart failure for nearly 19 years. I was originally diagnosed with Cardiomyopathy and at that stage the dire predictions were accurate. Since that time, I have experienced some incredible breakthroughs in heart care. I am in Australia. It is a big shock when you are originally diagnosed, it is a serious business, but believe me it is not the end of your life. Your quality of life is not the same as it was before, but it is ok and you do adjust to it. I have also been through Chemo, I had Oesophageal Cancer and it was after my diagnosis of CHF, 6 years ago, but I came through it very well, all clear, but with some heart damage, but it has repaired itself. I have been very lucky, everytime it looked like my heart was deteriorating, a new treatment, drug or device was introduced. I have racked up a few firsts over here both Nationally and Locally. Do what your doctor tells you to, watch what you eat in moderation, you still have to enjoy your life, but the most important thing is to keep a positive attitude. I have never ever felt like my time was up, and still don't I am of the opinion if a problem occurs, then lets fix it. It has worked so far, and proven to be correct. Life is for living, whether it is a bit slower than it was previously, so be it.

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I had suffered from side effects of medications, it was scary as I felt it was taking over my brain, had full CT scan and the medications of Ramipril and furosemide have been removed along with other 2