I'm new here and so pleased I have found this community. My background is that I'm a 41 years old male, my father passed away in October last year from a heart attack and was found to have chronic heart disease, copd and chronic kidney disease that were not detected or treated. I have now found out just after that, from getting chest pains and getting all the tests done, that I heart failure.
The cardiologist has been useless so far, with just giving me my diagnosis by letter in technical jargon, non ischaemic cardiomyopathy, ejection fraction 27% severely dilated left ventricle which i then googled.
I had to wait ages just to get anything explained and wait weeks for the medication to be posted to me to start, meanwhile I didn't know whether I could work still, or exercise,
The gp surgery has not helped or supported me either.
Thanks to this community and information book I downloaded on heart failure I am now getting information that is helping.
I did ask my consultant at my appointment the other day what my life expectancy was, as he said I am stage 2 and he said with the meds im on, or whether i have pacemaker or anything fitted later, he has seen people live up to 20 years which was a bit of a shock as I would only live to be about 60 if this is the case. He then missed out one of my medications on my prescription which I have to chase up.
I'm quite active and do part time cleaning job and part time gardening, and diy.
He said I cant swim, or run, the only thing he said was I could walk but no details how much ect, and do my gardening and cleaning work but stop if I got out of breath or fatigued. I still got loads of questions about whether I can do certain things, cycling, the diy around my house, painting decorating, sanding, ect.
I also don't know whether I can do things on holiday, like snorkelling, canoeing, speed boats, jet skis, swimming, go to hot or cold countries.
I was told to avoid stress, but its not easy when I'm dealing with my dads estate with solicitors and estate agents, and before that getting the funeral organised and all his affairs in order.
I recently got diagnosed with Asperger's autism so I really struggle with not knowing where I stand with things.
Any advice or experiences shared would really help me.
Thanks
Tim
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tdiesel41
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I cannot imagine the pressure and anxiety that you are under with all that you have had to go though.
I am so sorry about your Dad and hope that you have someone to help you with your burdens.
As for your heart, you are so new into your journey { it may not seem so } that it is hard to answer your concerns.
You have to remember that a lot on here { me included } are not medically trained and even to the few that are, answering medical question can open up a can of worms.
But having said all that, most of us in this forum will have gone through very similar procedures as you , so we can support you with open arms.
The main reason for my reply is just remember you are never alone.
So you have had the shock part, followed by the disbelief, followed by the anger at limited information getting to you.
You need answers to your many questions , I would contact once again your Dr or the cardiologists office.
Your newly diagnoses with Asperger’s syndrome needs you to be guided through what it all means , and of course we will try our best to help.
Hello Tim. Welcome to the forum. None of us is qualified to give medical advice, but can relate our own experiences. I'm sorry to read you have had such a difficult time and cannot get answers to your questions. I do have a diagnosis of heart failure but as I am much much older, my experience may not be relevant to you. But generally, heart failure is a very outdated term. In reality your heart is not working as well as it should. I'm sure I don't have to tell you that. But its a shock to hear those words, particularly when you are so young. Two things occur to me. Have you any idea if you have been referred to the community heart failure team? That is certainly a question for your GP - and maybe one you should ask. In my experience the HF nurses are very experienced and can answer some of your questions. They can also talk you through the meds and what they are for and answer the questions about exercise and so on.
The other point is where to go for information. The BHF nurses will always talk to you and are an excellent resource, and the other brilliant resource is the Pumping Marvellous Foundation. a patient led voluntary organisation dedicated to the subject of HF. I have had several long discussions with them about aspects of my treatment. Their website is worth a visit.
Others with the same diagnosis will be along and hopefully can help.
Please let us know how you get on with finding answers - and post them here, they may help someone else.
Thank you for your advice. No I haven't been referred to the community heart failure team. I will contact my GP to see if I can get referred. Sounds like a good plan of action. Thanks also for the info about the pumping marvelous foundation,I will definitely check that out.
Try and contact the secretary of the cardiologist. They may have more time available than the cardiologist and will have access to your medical records. I know when I went to a meeting with my surgeon he had very little time for me, contacting his secretary was very different, I have had 2 half hour phone calls with her.
Thanks choochsiesta, yes it felt a bit awkward trying to ask the consultant hundreds of questions, but I might find it better with their secretary, thanks for your input, good idea.
Hello Tim I don’t have any experiences at all of what you have gone through with your own health I do understand what it’s like to lose a parent then have to deal with everything that goes with that- I only wanted to say I do hope you get some answers soon and to send my thoughts and and very best wishes to you that life gets easier for you very soon take care 😊
The doctor forgot one important fact when he said people may live up to 20 years. Twenty years in medical research (and I do have a medical science degree) is a very long time where huge medical advances will be made. So his comment is a bit misleading and quite insensitive I believe.
I understand about insensitive comments, my Heart Failure Nurse recently made a comment when she gave me a new medication (Dapagliflozin), she said "It won't prolong your life but will make you feel a bit better" well it didn't as it gave me other issues to deal with so I stopped taking it. In the two months between appointments with her I kept a list of things I wanted to discuss at my next appointment so that I didn't forget anything as I have found in the past that after my appointment I remember things that I had mean't to ask and had forgotton. I do hope that you can get some answers tdiesel41. Lots on her have given you some very good advice. Best wishes xxx
You might find Pumping Marvellous, a BHF group a help. My HF nurse recommended it to me.Please stay away from Google, so out of date. facebook.com/groups/helpfor...
I found the website Pumping Marvellous really good for information. Specifically for people with heart failure and run by people with it. They have exercise videos etc etc on there. A really excellent resource.
There is also a Facebook group which is useful for asking questions and connecting with others.
Thank you for that link, I was not aware of it. I do try to do some exercises but never really sure if I am doing the right ones, wonder if I am helping myself or making things worse by trying to make the damaged heart do more than it is really capable of doing. xx
A natural question to have! Just take things slowly, pick things that are gentle and take it from there. I try and do a little walk each day….. and I mean a little! Also rehab pilates with a physio. Some days I can do more than others and other days I have to abandon doing something. I am hoping I will get stronger and can add in other things. It can be frustrating and it is easy to not pace yourself on good days so that you are worn out and feeling a bit rough. That is my biggest learning curve and source of much frustration.
Thank you, I had not connected as to why one day I was able to manage a high intensity workout and the next day I could hardly manage anything, you are right I need to pace myself better and perhaps stop the high intensity that I used to do and accept my limitations so that I can do something every day. As you say frustrating and my mind accepting that "just because I used to be able to do it I should be able to do it now" is the wrong line of thought. As you also say "a learning curve".
One thing that seems to work for me to keep on top of fluid, other than diuretics, is low carb/gluten free diet. I can do more when my fluid levels are low. 😊
Hi there Tim Sorry to hear what you are going through, heart failure is a horrible way of describing our situation, our hearts are not working as they should ! As your dad had so much going on they will treat you accordingly, I went to the doctors with breathlessness & wheezing last April was sent for ecg & echocardiogram , But I have only seen a heart consultant in the beginning to give me my results, then referred for mri & to HF nurse , in my case the nurses sort my medication & check my blood pressure, booked my blood tests. They did chase my cardiologist up & have regular emails with his secretary, so find it strange & sad you have not had any support, ( just to give you an idea average EF should be 55-70 ) my EF was 24 and after 8 months with help of medication & healthy lifestyle changes it had gone up to 49 , I was always told listen to your body if you feel tired rest, I have still worked throughout as a support worker, I run my home no change other than resting as I seem to get upper back ache when I do too much,
So it’s not all doom & gloom, I walk ( which is best ) & go out on my bike 1/2 a week, please try not to Google stuff just stay with BHF sites or pumping marvellous, if you have family & friends let them help you too, you have a lot on your plate to deal with, ask questions on here everyone have been so supportive & understanding good luck in your journey take care
Gosh sounds like a lot to deal with, as Blue1958 says most folks are not medically trained, but have varying amounts of experience. Have you taken stock of your lifestyle? Maybe it is as good as possible but if not you can help yourself by making changes. On YouTube there is a 30 day mindfulness/breathing programme by jaybittersweet that I find very helpful, if you are able to move to a plant based diet you will reach a healthy weight and by eating green vegetables every day you will open up your arteries by releasing for NO2 into your system I eat 3 Brussels sprouts 4 times a day-its very easy and after a while I got to look forward to them. The approach of Dr Esselstyn may be very helpful, check it out. It is not an easy path but it will give you much more control over your life. Your point about cardiologists is heartfelt, the less medication you need to take the better. All the very best Ron
Having also had a diagnosis by report which like yours used technical jargon which meaning nothing to me. I eventually persuaded the consultant to call me and after his "explanation" was still completely in the dark. Like you I googled the various medical terms and eventually worked out the nature of my problem.In a further discussion with another consultant (arranged by my GP) I explained my "diagnosis" and in response to that was given information that was in direct contradiction to the report from the previous consultant. This information was not correct. I pointed this out by email to the consultant (via her secretary) and am still waiting for a reply.
I therefore have every sympathy with you and these experiences raise serious questions about the standard of care demonstrated by certain cardiologists who hopefully do not represent their profession.
One question I have is are you able to share details of the meds you have been prescribed. This seems to be another source of potential contention.
I can relate to what you mean by "standard of care by some Cardiologists" I have only had phone appointments with mine since my GP sent a referral so thankfully I do get to see Heart Failure Nurse face to face.
Hi, I had my first HA at 39 and had a young family at the time, so not working wasn't really an option. I am now 58 and enjoying life. Yes I take a boat load of meds but I am still here now enjoying 1 granddaughter with another due in June.
A lot of it is mental attitude. It doesn't help that you are getting nowhere with explanations. Give the team on this site a rung they are fantastic and will help in explaining or pointing you in the right direction.
I have now had 6 H A's and still going. I am currently pulling the engine out of my nieces car for a rebuild.
Do not let your condition define you as everyone is different.
It is amazing the variations in the consultants' skill levels in explaining things to their patients. I remember nearly 20 years back, my wife was in hospital, very poorly. After a few days of all sorts of tests the doctor, not the actual consultant but one of the more senior ones who follow the consultant around, came and explained what was wrong with her. He talked on and on carefully choosing his words to ensure we understood nothing and so that he could avoid saying what we really needed to hear. A couple of days later the actual consultant came and took us both into a small side room. He settled us down with a coffee then asked what we thought the problem was. Then he said in an extremely kind and understanding way that she had an inoperable tumour on the brain and so on.
When I got my heart failure diagnosis last year, I got it from the type of doctor who wants his patients to understand. I had been blue lighted into A&E and was in the diagnostic ward, or whatever they call it. The doc came in after I had been through umpteen tests etc and a day, I think, of all the hullaballoo. He very calmly explained that my ticker was having a bit of a problem doing its job and that's why it could manage to clear all the fluids from my lungs. He said that it has a terrible name, this condition, congestive heart failure, but what was going to happen was that I was getting drugs to drain this excess fluid off and meds to help strengthen my heart for the job it's supposed to do. Now that is an excellent explanation. I was lucky.
I still found it scary, I still had a million questions. So I can only imagine how much more so it is for you. We are here though, we can't give specific medical advice, but sometimes that is not what we need, we just need to know that there is an ear that is listening and that cares
Thanks for all the lovely comments from everyone and your own stories which have helped me feel much more positive. I might give the bhf line a call also as suggested.It's an amazing group and feels such a positive energy of support by everyone.
My medications someone asked me to post are Bisoprolol, spironolactone, ramipril and dapagliflozin. So far no major side effects but only started the dapagliflozin the other day. Also on high dose of antidepressants, so glad all working ok together so far
I hope dapagliflozin works for you even though it didn't for me, we are all different as to what our bodies will or won't tolerate. Do let me know how you get on with it.
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