I have my first appointment with my Cardiologist on 30th Apil after my LVD/HF diagnosis from Echo on 28th February and am still wondering what I need to know...
Any suggestions on what I need to ask as a priority?
I am completely on my own as my 80yr old mum is in a care home unconcerned about me. Everyone here seems to have a loved one/someone to support them. I worry if I get really ill I'll have no one.
Current situation is un-medicated due to the side effects of Ramipril. I never felt unwell before diagnosis/medication and couldn't cope with feeling so bad on it. I was dizzy, light headed, off balance and heart pounded in my ears, it was like living in a constant fog.
5 days off and I feel absolutely fine apart from the stress/anxiety I already had. This masked my heart problem in first place but I can cope with the symptoms of that, been doing it for decades.
I am trying to look forward positively but to be honest current stress/anxiety issues mean I don't care as much as I should about my heart's future.
Take care everyone.
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CraftyGirl72
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I would speak to your cardiologist about your concerns re being on your own. They will probably be able to reassure you about that in relation to the short term. Are you worrying about this more in relation to longer term health, though? My own experience has been that cardiologists have been a bit vague about long-term prognosis, I think this is because it's genuinely very difficult to predict. So I'd go in prepared for the fact you may not get a satisfactory answer to that. Maybe have a think about the specifics of your concerns, e.g. is it your long-term independence that you are worried about, or your life expectancy, or immediate/ongoing risks? The more specific you can make your questions regarding future health/life, the more likely you are to get useful information, though probably not definite answers, as I said.
I imagine you want to know what their approach will be with medication? I'd ask what medications they plan to try next, how they intend to monitor you, what doses you'd be aiming for, what they will do if that medication doesn't work for you... Have a think before you go in about what your priorities are, e.g. what sort of side effects you'd be willing to put up with if it meant longer-term improvements.
You sound as though you are fairly well informed regards healthy lifestyle etc, but maybe you have some specific questions around diet and exercise? Would you be interested in cardiac rehab if it was available to you? If so, this appointment might be a good opportunity to ask about it.
If you do have specific questions you want answered, make sure you write them down and take the list with you to your appointment, it's all too easy to forget something once you're in there.
I'm kinda worried about long term. I am fine now but I don't even have an emergency contact at moment so you can imagine how I feel about being incapacitated in future.
I have always been the carer and struggled on regardless of my own health.
Thank you for the advice, started a list already. x
I currently live alone and worry about things all the time
Separate the day to day issues from your health. Write down your concerns and questions but as sone of the others have stated already focus should be on how to get stable not and the future will be there when you need to think about it
Hi sorry to hear about your cardiac issues. I wonder with your tablets that you consider starting on a very low dose. Initially post heart attack I felt and acted like a zombie! The amounts of medication they gave was their ‘standard ‘ dosage. However it was way too high for me. So for example the ramipril I changed to Lisinopril as it was a tablet rather than capsule so I cut it into quarters to build up the dose every few days. Likewise bisoprolol etc. I was monitored by the cardiac rehab nurses who run the medication management clinic. You may have one in your area. I am based in the North East so is part of the rehab programme. As Laura says discuss your situation with either the cardiologist or with your GP. Good luck with your appointment and keep us posted. Take care. Zena x
I was only on 2.5mg... their plan was 5 then 10. Not sure I'd have been able to get up at all at that level. Feel so much better off so they will need try one with less side effects before I agree to take.
Will check out resourses like nurses once I get to clinic.
Ramipril works for me at 5mg, but I know that its not uncommon to be unable to take because of side effects. My husband has Lisiniprol because of Ramipril side effects. So it may be good to ask your doctors or nurse.
I hope you find something to suite you - I can't take statins as they upset my tummy!!! Sue
Enalapril did that to me as it's full of lactose! Swings and roundabouts... felt ok on them bar the tummy pain. Ramipril I just feel awful but no pain.
Will talk to consultant see what he recommends. Avril
I guess the most important question is ‘do I need surgery’. If yes, ordinarily they will not discharge you if you have nobody at home to look after you. If this is genuinely your situation, the hospital will need to work out a care package for you until you can cope on your own.
The advice here is to write down all your questions beforehand because you will not remember them when you meet your cardiologist. Don’t worry about the order in which you ask them or how big they are, the important thing is to get the answers you feel you need. It’s possible the cardiologist will not have all the answers you are seeking but you won’t know until you ask. You might also want to have a chat with your GP too, he/she maybe able to help with more general issues that will arise e.g. insomnia, anxiety,
I am hoping it is not serious enough for surgery especially given the length of time I've lived with this undiagnosed and been fairly healthy. I had no clue I was at risk, I just thought the breathlessness was because of being unfit (or lingering from Chronic Fatigue Syndrome I had 20 years ago).
I have been a carer for decades so thought of needing help scares me but I really don't have anyone. Mum at 80 is in a nursing home, no family in my life. I am a survivor though. If I do need surgery I will figure it out.
Will add this to my lengthening list for the poor cardiologist/GP. Thanks
I had a similar diagnosis to yours four years ago. If you haven't already been told you could ask the Cardiologist what may have caused the heart failure as it is useful to know. Long term hypertension was the cause of my heart failure. You could also ask what your ejection fraction rate is. Blood is pumped out of the left ventricle with each contraction and if the heart is not working properly the ejection fraction can be low but this doesn't apply to all heart failure. It is usually measured during an echocardiogram and over 50% is classed as normal. Mine was 21% but with treatment it went up to 45%.
You could also ask what treatment options there are. My medication was administered by the Heart Clinic nurses who worked in close contact with the cardiologist. I started on a low dose of medication and over weeks and months new ones were introduced and gradually titrated until they reached optimum levels. This took about 9 months in total and once that was achieved I was advised to have a CRT-D implant.
Good luck for Monday. If you have any questions or are unsure about anything please feel free to message me or post on here.
I never had high BP readings till very recently (stress/anxiety blamed) no symptoms other than always been out of breath on exertion but having had Chronic Fatigue Syndrome 20 years ago I just blamed that!
I am sorry to hear you are going through this difficult/confusing time. I would take a list of questions along with you to the appointment. These questions could be based around the main topics of-
-What is my treatment plan?
-How will I be monitored/how often?
-What should I expect following my diagnosis in the long term?
-What symptoms should I be aware of?
We have a booklet called ‘Everyday Guide to Living with Heart Failure’ which you may find helpful- bhf.org.uk/publications/hea...
If you are having concerns around stress/anxiety this is something you could discuss with your GP to see if there are any forms of support/counselling available to you that you may benefit from.
I have all the booklets from BHF already and as for the stress/anxiety it was pre-existing and been in counselling for months but not helping. The heart failure diagnosis just added to the problem. Thank you for the advice on what to ask though. 😊
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