Shock Diagnosis

[Paganthegoat]

Good Morning everyone. I am afraid all this is very new to me,my previously healthy husband suddenly experenced edema in his feet then up his legs it went...we were not even registered with a doctor. Amazeingly we were registered and seen within hours.

Diagnosis ,Congestive Heart Failure. He is 64 as am I ,but I have never had anyone I know suffer from heart disease,his relatives all live into their nineties.

Just looking for advice as the prognosis you see on the internet,survival rates ,are very depressing.

He is responding well to medication on low doses.

[IanMK]

Hi Paganthegoat (what a strange alias!)

Most important: don’t believe everything you read on the Internet. I admit that it doesn’t help that they call it Heart Failure. There are many of us here in the same boat and I suspect that it hit most of us out of the blue - it did me (and I’m a young 63🙂). Don’t spend your time worrying but consider whether there are any healthy lifestyle changes you could (both) make; you don’t mention weight, general health and activity levels. Your husband has now started on a path to try to identify the cause of his problem. He will have variou tests and he will be prescribed various medications to protect his heart. Hopefully, if and when a cause is identified he will then be able to get some treatment to improve his condition. In the meantime, the ‘protection’ meds are likely to slow him down a bit and could take a little getting used to. It’s worth persevering, but some people really can’t tolerate some medicines, so if he is really badly affected for more than 2-3 weeks he should let his medical team know.

I hope this helps. Don’t worry and keep positive.

Best wishes.

Ian

[Paganthegoat in reply to IanMK]

Ian,thank you so very much for your reply. My husband is slim eats all home cooked food and no takeaways,I checked his food on a random day and his sodium is in the lower range ,chollesterol is fine but I didnt enquire the reading. He walks several miles a day for his job which is QC .Already tho we are seeing a big improvement on lasix 40mg am and 20mg pm and ramipril 1.25mg.

I have cut the half a bottle of wine a night right out.

Problem is when he was younger before he met me he lived hard and fast.

Thank you again Ian,I was widowed when I was 35 and whilst its not about me I dont want to see another man suffer like my first husband did.

[kel55 in reply to Paganthegoat]

hi, please be very careful that you keep seeing the man not the ilness. My wife stopped seeing me and started seeing the ilness.

Although the odds of me being around for another 20 years are high it could all end 'now!' this is difficult for her and my bet is that your the same.

Im not saying dont cut his wine down or stop the strong coffees, mine are that weak a jar lasts twice as long and the machine is begging to be used. You get used to not eating food without salt! But every now again like this saturday l will leave off my evening meds in favour of our anerversary (39) I used to help keep southern france, top spain and that same band across through italy economically sound, Im fancing a full bodied merlot with some age or a fruity reoka (never had to spell that befor) and we are having a selection of spanish meats, pan, salad, black olives, a veriety of dips including alioli.....better buy two bottles my youngest is coming, my wife and his wife can have a cheap rosay.

What l am trying to say is let him out every now and again it will do both of you some good

[Paganthegoat in reply to kel55]

Thank you,its nice to see it from a mans perspective. We dont drink tea or coffee. He has a very heavy customised motorbike ,its what they call a Chopper ,its not an easy thing to ride,but hes well enough to ride it and I help him to push it back in the garage as it is very very heavy .

I am terrified ,I saw myself loseing him within five years ,If I got twenty it would be like winning the lottery.

I let him off his lead,hes got to have a life .

Its great being able to speak to other people ,already I feel more optermistic . Tho my spelling is beyond any help

[laura_dropstitch Heart Star]

Hello. Sorry to hear about your husband's diagnosis. I was unexpectedly diagnosed with heart failure nearly 7 years ago (aged 31) and did the same - googled (even though I'd been told not to) and ended up absolutely terrified. I thought I'd been told not to google because the truth would scare me, but I know now that this was not the reason, it was because googling wouldn't give me the truth at all! There are lots of reasons why this is the case for heart failure. Firstly, most of the results come from an American population of patients and the American prognosis (for reasons of ethnicity etc) for heart failure is much, much worse than here in Britain/Europe. Secondly, heart failure treatments are advancing and improving really rapidly. Even in the seven years since my diagnosis, I've seen changes to medication etc. There is so much research being done and I'm genuinely very hopeful and optimistic about what the future holds for heart failure patients, but lots of the information google gives you is badly out-of-date, from a time when the outlook was a lot less positive. Thirdly, the term heart failure (I only learned this recently) is used differently in non-English-speaking countries, where it would only ever be used as a cause of death on a death certificate. What we call heart failure, they call something more along the lines of cardiac impairment. So I think some confusion arises from lazy translations somewhere back down the line. Plus, of course, heart failure is a dreadful name for a condition that you can live with for a long, long time because everybody, on hearing their diagnosis, immediately thinks they're going to die. All this is not to say that heart failure is not worth worrying about - it's a very unpredictable condition with different outcomes for different people. But please don't assume that the horrifying statistics online will apply to your husband because they are very unlikely to. Another positive is that he's responding well to medication already, which would suggest that he will fare better than average.

You're bound to have loads of fears and questions at the moment, but please ask your doctor/heart failure nurse/cardiologist, or phone the BHF Heart Helpline (0300 330 3311). Or ask here. There are loads of us with heart failure using this site, most of us doing a lot better than Google led us to believe. Feel free to message me if you think I could help in any way. Good luck with everything

[Paganthegoat in reply to laura_dropstitch]

Laura ,that was a fantastic post ,but 31 ,omg. Your so brave . I know I should not listen to the internet ,but when I was told I went into headless chicken mode! I worried about the house,the dogs,the chickens and the fish!

I nearly had a meltdown in the surgery because himself panics and up goes his heart rate and down goes his oxygen.

I am so glad that I found this site as already I feel more optimistic .Hes improved so much ,he made it over half a mile up the lane talking and walking before he said he felt he needed to stop a bit . fluid is gone cough gone. Silly thing is his pulse is steady and strong and blood pressure normal ,just bloodshot eyes.

Sorry to go on so much.

Thank you again

[IanMK in reply to Paganthegoat]

Excellent advice from Laura. As I said, don’t worry. Hopefully your husband has now been referred to a cardiology unit where he will be given other medication and the cause of his HF investigated. If he can, I suggest he takes a pragmatic view of his changed situation and take every opportunity to learn more about his condition. The more he understands the less likely he is to panic and become stressed (not good for his heart). I’m sure that you will want to go with him to his appointments, which is a good thing. Two minds are better than one at asking questions and remembering answers.

This time last year I went to my GP with a persistent cough and an ambulance was called to take me to A&E - I had fluid on the lungs. I hadn’t noticed my swollen ankles. With hindsight, I missed a number of signs which could have given me an early warning.

Best wishes to you both.

[Paganthegoat in reply to IanMK]

Thank you Ian,we have had no more than an XRay and a couple of bloodtests with an ecg heart trace thing?

We were told last night to cut out the extra 20 mg of lasix in the pm as the fluid was well under control and his potassium was depleted.

Worse thing was he was told he was not diabetic but close (43) so we must address that too.

Aparently left and right ventricle are affected.

But hes still working ,no longer falling asleep all the time .

[Zena166]

Hi Pagan. Welcome to the forum. Sorry to hear about your husband. Hopefully you have found support on this site. Further support can be found on the BHF website link here bhf.org.uk/informationsupport

They also have a helpline so that you can talk to a nurse. Also there are local community BHF groups that you may find helpful to make contact with. It may be helpful to talk to your GP about referral to the heart failure/ rehab service in your area.

In all of this you must look after yourself as you rightly say it has been a shock for you both. But as Laura says treatments and new research are improving patient outcomes all of the time. Take care stay strong and positive. Best wishes Zena

[Paganthegoat in reply to Zena166]

Thank you Zena I checked for support groups in my area but unfortunatly there are none near. Early days ,but things are looking up. Big thank you to you and those here who have replied and given support it has realy helped.

[purplerain58]

Hi there, My husband had similar, don't go looking on internet you will always get horror stories. We are very early in to diagnosis too, although my husband wasn't in best of health to begin with, having been a life long smoker. He is also responding well so far. I have known many people live well for a long time with a diagnosis of heart failure, obviously everyone is different and your diagnosis may be different too. Make sure you both eat well, exercise sensibly. I've found that doing a weekly menu plan really helps and cuts down on the stress of cooking. Find something good in each day! its tough on you so take the support offered from friends and family, take time out for yourself, get your hair done, go for coffee and cake with friends, whatever floats your boat, and don't feel guilty! You need to take care of the carer!! Good luck.

[Paganthegoat in reply to purplerain58]

Thank you for your kind words ,I am sorry that you and your husband are going thru this too. I am sort of stressed as when I was 35 I was widowed ,the Doctor insidted he had a bad back but it was widespread cancer by the time the Doctor bothered with a blood test or xray .

Hopefully the outcome will be better Again thank you and all the best to you both .

[mariancolyer]

Hi there,

I was diagnosed with dilated cardiomyopathy last year and I'm a very fit, 9 1/2 stone 63 year old - also vegetarian and non smoking!

All I can say is the shock was replaced with hope as I am on all sorts of meds which seem to be working extremely well. I am fit and well - sometimes a bit breathless on stairs - but generally feel great. I actually forget I have it most of the time and have returned to Zumba and Pilates and walk a mile with the dog every day.

Don't despair!

[Paganthegoat]

Crikey! You must have had the shock of your life. You do everything right and that happens

Thank you for shareing.It makes a great difference to me all the kind and encourageing help I have received so far.

My husband is being a good lad,hes not resisted a single piece of advice and is now happy to follow exercise programmes. So half my battle is won,hes not being stubborn at all ,because he is normally lol.

I wish you well and thank you again It makes a big difference to me,if I can keep positive then it must help him .