Discussion
I'm starting this with a new title, following on from the 'what have I got' which is a bit ambiguous.
BNP of 246 and echocardiagram the left ventricle ejection of 27%.
GP has referred me to the cardiology team, but longish lead times, he was talking several months.
I'm keen to progress this so happy to self fund. Once I've seen a cardiologist and arrived at formal diagnosis/treatment plan will I be able to revert to the NHS for treatment?
BNP of 246 and echocardiagram the left ventricle ejection of 27%.
GP has referred me to the cardiology team, but longish lead times, he was talking several months.
I'm keen to progress this so happy to self fund. Once I've seen a cardiologist and arrived at formal diagnosis/treatment plan will I be able to revert to the NHS for treatment?
First of all, try not to worry, easier said than done.
The quacks will probably start you off on medication and re-asses after a while.
If the drugs are not effective enough, then expect them to offer you a pacemaker.
And then you can join those of us who are part man, part machine. I've got an ICD which is one up from a pacemaker, but still paces if needs be. I've had it since 2013 (implanted at age 42) and it has been a lifesaver. I believe it has got about 18 months battery left on it. I continue to take lots of heart drugs. The best thing I've found is keeping as active as possible, as difficult as that can be. I walk and e-bike to get my fill, no need to go mad. Try not to wallow on the sofa, obviously check with the quacks first!
Has your cardiologist offered any clues on what the next step is? How far along are you in the process, do you have a cardiologist yet?
The quacks will probably start you off on medication and re-asses after a while.
If the drugs are not effective enough, then expect them to offer you a pacemaker.
And then you can join those of us who are part man, part machine. I've got an ICD which is one up from a pacemaker, but still paces if needs be. I've had it since 2013 (implanted at age 42) and it has been a lifesaver. I believe it has got about 18 months battery left on it. I continue to take lots of heart drugs. The best thing I've found is keeping as active as possible, as difficult as that can be. I walk and e-bike to get my fill, no need to go mad. Try not to wallow on the sofa, obviously check with the quacks first!
Has your cardiologist offered any clues on what the next step is? How far along are you in the process, do you have a cardiologist yet?
colin_p said:
First of all, try not to worry, easier said than done.
The quacks will probably start you off on medication and re-asses after a while.
If the drugs are not effective enough, then expect them to offer you a pacemaker.
And then you can join those of us who are part man, part machine. I've got an ICD which is one up from a pacemaker, but still paces if needs be. I've had it since 2013 (implanted at age 42) and it has been a lifesaver. I believe it has got about 18 months battery left on it. I continue to take lots of heart drugs. The best thing I've found is keeping as active as possible, as difficult as that can be. I walk and e-bike to get my fill, no need to go mad. Try not to wallow on the sofa, obviously check with the quacks first!
Has your cardiologist offered any clues on what the next step is? How far along are you in the process, do you have a cardiologist yet?
Thx, no cardiologist yet. GP says NHS has a couple of months wait, thinking of self funding a private consultation, just to get things moving.The quacks will probably start you off on medication and re-asses after a while.
If the drugs are not effective enough, then expect them to offer you a pacemaker.
And then you can join those of us who are part man, part machine. I've got an ICD which is one up from a pacemaker, but still paces if needs be. I've had it since 2013 (implanted at age 42) and it has been a lifesaver. I believe it has got about 18 months battery left on it. I continue to take lots of heart drugs. The best thing I've found is keeping as active as possible, as difficult as that can be. I walk and e-bike to get my fill, no need to go mad. Try not to wallow on the sofa, obviously check with the quacks first!
Has your cardiologist offered any clues on what the next step is? How far along are you in the process, do you have a cardiologist yet?
I won't tell a lie no sleep last night my minds racing.
GP has offered the following advice "if it hurts or you're breathless slow down"
PositronicRay said:
Thx, no cardiologist yet. GP says NHS has a couple of months wait, thinking of self funding a private consultation, just to get things moving.
I won't tell a lie no sleep last night my minds racing.
GP has offered the following advice "if it hurts or you're breathless slow down"
It is bloody scary.I won't tell a lie no sleep last night my minds racing.
GP has offered the following advice "if it hurts or you're breathless slow down"
What makes it more so is the name, "HEART FAILURE".
Instead, I reckon it should be called something like "Heart is not pumping quite as well as it could, but it is not the end of the world".
This is a good walkthrough of what to expect.
https://www.nice.org.uk/guidance/ng106/chapter/Rec...
and this...
https://pumpingmarvellous.org/heart-failure-guide/
As I've said, try not to worry, you are now on their radar and will be well looked after. An initial private consultation is a good shout.
How were you diagnosed, was it an ECHO (echocardiogram) ?
Thanks for your support, getting panicky last night. Picking up a cold/cough just before Christmas has exacerbated symptoms, making sleep difficult.
I've been feeling ropey, fatigued and breathless since a covid bout in August, various tests and xrays culminating in an Echo. The physiologist warned me it was a low %, but didn't get to see the report untill yesterday.
I've been feeling ropey, fatigued and breathless since a covid bout in August, various tests and xrays culminating in an Echo. The physiologist warned me it was a low %, but didn't get to see the report untill yesterday.
I totally understand the sleepless nights, I was diagnosed 14 years ago and it completely consumed me at the time. I'm still here, I made massive lifestyle changes, exercise, diet and completely stopped alcohol. Now on a "wonder drug - Entresto" which can increase your EF significantly, I'll find out today after an echo. Don't worry too much, heart failure is a slow progression, at least a problem has been identified and being addressed. There are many people out there with worse who have no idea.
Wishing you all the best, Ray.
Different issue but a close family member paid to see a cardiologist recently. I went to the consultation and compared to our NHS experience, it was truly excellent.
No connection other than being very impressed by him, his name is Dr Ali Hammad. We saw him at the Priory Hospital in edgbaston, but he may consult elsewhere or remotely. Just thought I'd flag a name in case of interest as a starting point and he's not too far away from Warks.
Different issue but a close family member paid to see a cardiologist recently. I went to the consultation and compared to our NHS experience, it was truly excellent.
No connection other than being very impressed by him, his name is Dr Ali Hammad. We saw him at the Priory Hospital in edgbaston, but he may consult elsewhere or remotely. Just thought I'd flag a name in case of interest as a starting point and he's not too far away from Warks.
As everyone else has said - try not to let the doom and gloom get to you.
Get the best possible advice you can and make the changes you need to.
Being 42 and fitted with an ICD last year - and the initial thought of HF - it’s bloody terrifying.
My issue turned out to be totally different but I wouldn’t be here now if it hadn’t been dealt with quickly.
Don’t Google too much blindly- everything is worse if it’s not read with a decent understanding.
The PH cardiac ward is here for you when you need us.
Get the best possible advice you can and make the changes you need to.
Being 42 and fitted with an ICD last year - and the initial thought of HF - it’s bloody terrifying.
My issue turned out to be totally different but I wouldn’t be here now if it hadn’t been dealt with quickly.
Don’t Google too much blindly- everything is worse if it’s not read with a decent understanding.
The PH cardiac ward is here for you when you need us.
I’ve been seeing a private cardiologist recently, but for a different reason.
I also started the NHS process at the same time in case it got to a point where I couldn’t justify the cost but he told me to cancel the NHS appointments as he could refer me back into the state system if needed.
Initial consultation was £220 and every one after that was £110 which I thought was reasonable enough. The tests get a bit pricey but for me it was keeping me off work and a months salary pays for a lot of tests! I’ve now had all the tests and a full report from the cardiologist; had I stuck with the NHS I wouldn’t have even had my echocardiogram appointment yet.
I also started the NHS process at the same time in case it got to a point where I couldn’t justify the cost but he told me to cancel the NHS appointments as he could refer me back into the state system if needed.
Initial consultation was £220 and every one after that was £110 which I thought was reasonable enough. The tests get a bit pricey but for me it was keeping me off work and a months salary pays for a lot of tests! I’ve now had all the tests and a full report from the cardiologist; had I stuck with the NHS I wouldn’t have even had my echocardiogram appointment yet.
Good evening my fellow breathless chums. Don't let HF get you down. Every day is a bonus as they say.
I had a HA in 2010 that did a fair bit of damage to my ticker and am now diagnosed with ischaemic heart disease and AF.
Had a triple by-pass in 2011
Have severe LV impairment with LVEF of 30%
Had ICD fitted in 2016.
Fast forward to today and I'm still here!
On about 12 tablets per day (incuding Eplerenone)
Get very tired and usually have 40 winks (power nap) mid-afternoon.
I try to take several holidays per year. Just taking it easy sitting in the sunny shade. Am on also on Amiodarone. It makes skin very sensitive to sunlight so a big hat and factor 50 sun protection at all times.
Hospital talking about heart transplant sometime but apparently I'm not ill enough yet!
My advice, keep taking the tablets, gentle exercise (I walk about 5K slow paced steps per day), good food, moderate alcohol.
Hope all is well OP.
I had a HA in 2010 that did a fair bit of damage to my ticker and am now diagnosed with ischaemic heart disease and AF.
Had a triple by-pass in 2011
Have severe LV impairment with LVEF of 30%
Had ICD fitted in 2016.
Fast forward to today and I'm still here!
On about 12 tablets per day (incuding Eplerenone)
Get very tired and usually have 40 winks (power nap) mid-afternoon.
I try to take several holidays per year. Just taking it easy sitting in the sunny shade. Am on also on Amiodarone. It makes skin very sensitive to sunlight so a big hat and factor 50 sun protection at all times.
Hospital talking about heart transplant sometime but apparently I'm not ill enough yet!
My advice, keep taking the tablets, gentle exercise (I walk about 5K slow paced steps per day), good food, moderate alcohol.
Hope all is well OP.
PositronicRay said:
I'm keen to progress this so happy to self fund. Once I've seen a cardiologist and arrived at formal diagnosis/treatment plan will I be able to revert to the NHS for treatment?
Yes and there should be no 'penalty' for doing so, as long as the treatment required is covered by NHS funding: https://www.gov.uk/government/publications/nhs-pat...55palfers said:
I try to take several holidays per year. Just taking it easy sitting in the sunny shade. Am on also on Amiodarone. It makes skin very sensitive to sunlight so a big hat and factor 50 sun protection at all times.
Out of interest how do you go on with travel/medical insurance? My wife is on a plethora of tablets following her stent fitting and some for other age related issues - blood pressure, cholesterol etc. Whilst pre-existing conditions are not normally covered trying to get accurate insurance quotes with cover that prevent the insurance company denying a potential claim is a minefield.PositronicRay said:
BNP of 246 and echocardiagram the left ventricle ejection of 27%.
How old are you and have you ever has chest pains? If you are young and have no ischaemia history than it may well be a cardiomyopathy. It's almost certain you will need additional imaging such as Cadiac MRI before any specfic treatments can be arranged.
You need to see some who knows about heart faliure/cardiomyoprhy, NHS waiting times for urgent appointments shouldn't be long, urgent Echos and MRI scans get done in less than a couple of weeks.
Private will give you faster access but just make sure you see someone who's fully up-to-date on the latest heart failure investigation/management, seeing someone who specialize in EP, devices, or intervention might not be as useful as seeing a heart failure specialist- There has a being a huge amount of developments in heart failure treatment in the last few years, so its a moving piece interms of evidence based practice.
Good luck, heart failure is now more manageable than ever, it's what my wife does daily. I've never seen Cardiologist in general get so excited about non invasive treatments as they are now about heart failure management!!
Edited by gangzoom on Saturday 30th December 08:33
gangzoom said:
PositronicRay said:
BNP of 246 and echocardiagram the left ventricle ejection of 27%.
How old are you and have you ever has chest pains? If you are young and have no ischaemia history than it may well be a cardiomyopathy. It's almost certain you will need additional imaging such as Cadiac MRI before any specfic treatments can be arranged.
You need to see some who knows about heart faliure/cardiomyoprhy, NHS waiting times for urgent appointments shouldn't be long, urgent Echos and MRI scans get done in less than a couple of weeks.
Private will give you faster access but just make sure you see someone who's fully up-to-date on the latest heart failure investigation/management, seeing someone who specialize in EP, devices, or intervention might not be as useful as seeing a heart failure specialist- There has a being a huge amount of developments in heart failure treatment in the last few years, so its a moving piece interms of evidence based practice.
Good luck, heart failure is now more manageable than ever, it's what my wife does daily. I've never seen Cardiologist in general get so excited about non invasive treatments as they are now about heart failure management!!
Edited by gangzoom on Saturday 30th December 08:33
No chest pains or swollen ankles. 65 y/o T1 diabetic for the last 45 yrs. i'm considered fit for my age, plenty of walking and a voluntary forestry role. Albeit not so much over the last few months.
Both my brothers have had ECHOs, ones okay, the other 22% with a BNP over 1000 and recent heart attack.
Armitage.Shanks said:
55palfers said:
I try to take several holidays per year. Just taking it easy sitting in the sunny shade. Am on also on Amiodarone. It makes skin very sensitive to sunlight so a big hat and factor 50 sun protection at all times.
Out of interest how do you go on with travel/medical insurance? My wife is on a plethora of tablets following her stent fitting and some for other age related issues - blood pressure, cholesterol etc. Whilst pre-existing conditions are not normally covered trying to get accurate insurance quotes with cover that prevent the insurance company denying a potential claim is a minefield.Travel insurance for me trebled. I then looked at annual insurance and was pleasantly surprised with £89 last Aug with Admiral.
Hope this helps.
markymarkthree said:
Armitage.Shanks said:
55palfers said:
I try to take several holidays per year. Just taking it easy sitting in the sunny shade. Am on also on Amiodarone. It makes skin very sensitive to sunlight so a big hat and factor 50 sun protection at all times.
Out of interest how do you go on with travel/medical insurance? My wife is on a plethora of tablets following her stent fitting and some for other age related issues - blood pressure, cholesterol etc. Whilst pre-existing conditions are not normally covered trying to get accurate insurance quotes with cover that prevent the insurance company denying a potential claim is a minefield.Travel insurance for me trebled. I then looked at annual insurance and was pleasantly surprised with £89 last Aug with Admiral.
Hope this helps.
I have cardiomyopathy and an ICD - covered for all of Europe, Africa and Asia for £200 this year.
I used all clear travel insurance- they seem to know their stuff but I know there’s another one popular on here too.
OP - how u feeling? A bit more settled mentally?
Armitage.Shanks said:
55palfers said:
I try to take several holidays per year. Just taking it easy sitting in the sunny shade. Am on also on Amiodarone. It makes skin very sensitive to sunlight so a big hat and factor 50 sun protection at all times.
Out of interest how do you go on with travel/medical insurance? My wife is on a plethora of tablets following her stent fitting and some for other age related issues - blood pressure, cholesterol etc. Whilst pre-existing conditions are not normally covered trying to get accurate insurance quotes with cover that prevent the insurance company denying a potential claim is a minefield.Fancy a cruise but insurance is villainous.
PositronicRay said:
Both my brothers have had ECHOs, ones okay, the other 22% with a BNP over 1000 and recent heart attack.
Hope you both get sorted, make sure this information is mentioned in referrals, most heart failure is caused by ischaemia disease (needing stents etc), familial (inherited) much less common. Genetic testing, MRI imaging are almost certainly needed for accurate diagnosis.The UK is world leading for research into cardiomyopathies, if you are lucky you might be eligible for taking part in a clinical trial, which gives access to medications/investigations money literally cannot buy, regardless of private healthcare.
As someone mentioned earlier what you need is to get formally put under the care of a cardiologist. Going down the private route may or may not be helpful when you are looking a potentially familial disease. Private healthcare makes money from doing simple routine things well/efficiency, I'm not sure I would trust the likes of BUPA to have over sight for more complex chronic disease, especially when there isn't even a formal diagnosis.
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