Ain’t that a kick in the teeth

[aFibber55]

Well, fellow travellers. I haven’t posted for a long while , but I have been lurking. Like many others, I tend to “forget” about the forum while I am too busy enjoying life and return when things are not so rosy.

I am at loss to explain the purpose of this missive as it’s not particular uplifting nor is it a plea for help. It’s just something I needed to do and I hope it will in time be an uplifting tale of knock backs and rising from the ashes. Fingers crossed.

First of all I am truly grateful that my “big end” didn’t start wearing out until in my 60’s and feel so much sympathy for alll those living with any kind of life-limiting condition from their youth or for all their lives.

But, it’s a human condition to always want more and to feel “I did all I could and still this happened. I tend to forget that my body wasn’t exactly a temple for the first 60 years and my family history will repeat however much I protest “ I am not my mother or grandmother and definitely not my father or grandfather!” Tell that to my genes!

Anyway here’s what knocked my off my pedestal of clean living this week.

I had my first “annual” bloodtest since being diagnosed in June 2020. All was ok apparently. Couple of weeks later I had an invitation for an “annual” (yes that too was rather an elastic concept) phone health check with my GP. I told her that I have been well, learned to cope with my Afib and haven’t had an episode since last November. I did also mention that I find it really hard to keep walking briskly for more than 30min or so and that going uphill was not an option. Could this be my 10mg of Bisoprolol slowing me down perhaps? I also seem to have more and more troublesome abdominal bloating which I put down to my usually tricksy digestion.

It was decided to take some more bloods and to start slowly bringing my dosage of Bisoprolol down to see if that helps ( I haven’t started that yet and probably won’t now).

Next thing I know I have a message to contact the surgery and that’s easier said than done just now. The government may well have decided that the pandemic is over, but NHS begs to differ. They are all having their second attacks of the pesky virus, so I was told the doctor needs to talk to me quite urgently, but the first available phone appointment is over a week’s time.

So now, here I suppose is the educational element of this rambling post. Do not, at any circumstance check your test results on line through Patient Access if you don’t have access to your doctor and if you already made that mistake, then at least avoid typing Heart Failure in your search engine. I would now be planning my funeral, if I hadn’t decided a long time ago to have a direct cremation instead.

The blood test results where abnormal in so many different levels, including sodium, potassium, hemoglobin and that magic PN-Pro BNP (I never heard of it either) and in the notes “Indications of heart failure” recommend echocardiogram and specialist consultation within 6 weeks.

Sooo, not the end of the world perhaps, but the returns on the 5 year inflation busting investment made this year might not be enjoyed by me after all.

I was also disappointed by the “promise” that you will not die of Afib, I didn’t think that well managed paroxysmal atrial fibrillation would bring heart failure to the party so soon.

I tried to contact my lovely Arrythmia nurse, but she is on her well deserved annual leave.

In the mean time I will perhaps do a bit of cleaning to calm my nerves and plant some annuals instead of the birch tree glade I had in mind.

If you are still reading, I promise to keep you updated. Perhaps there was a mix up with the tests, perhaps my heart is failing just a little bit, perhaps one day I will actually see a doctor face to face (sorry, that last “perhapsl is probably slightly too over optimistic)

[bantam12]

Just to say my Pro BNP result indicated heart failure and it wasn’t 🤦🏻‍♀️ try not to worry to much about it as other things cause results to be out of whack.

[aFibber55 in reply to bantam12]

Thanks bantam. Music for my ears!

[CDreamer]

Blogging alone can be so cathartic so hope writing it all down has helped clear your mind.

Heart Failure is SUCH a scary and in my view very misleading term - it means is that your heart isn’t as efficient as it was or could be at pumping blood around your body - hence you feel the extra burden when exerting yourself. It needs to be treated but death will not be imminent, I hope - not being God I couldn’t possibly say really!

Your GP should refer you and you will may be asked to have an echocardiogram to determine what’s going on with the structure - that will give a lot more information so the docs can determine a treatment plan.

My husband was in Heart Failure at age 85, medication was adjusted, 3 years later he’s no long in HF.

Best wishes

[BobD Volunteer]

These expressions are annoyng aren't they?

Heart failure doen't mean what you think it does. All it means is that your heart is currently unable to fullfill all the demands made on it by your body. It does NOT mean you are about to pop your clogs so plant those trees. lol 😁

I agree that Dr Google and any other health reports not taken in conjunction with adequate discussion with a health care professional are a nightmare.

I had my annual bloods and bp tests last month following which I had a call from the cardiac nurse at my GP practice who explained everything in great detail. Ok I had the advantage in knowing things that she didn't which have not yet filtered down to her level but had I not then the call would still have been most reassuring.

[aFibber55]

Thank you for all your comments, it’s so good to hear something positive. And I should have thought about the meaning of the term heart failure a bit more. it’s still working , but not so well. I am just not used to getting F’s in my tests🤣

[jeanjeannie50]

I endorse all that CD and Bob have said. The 'heart failure' diagnosis is certainly not what you thought it was. Just that your heart isn't pumping quite as efficiently as it could. Life will go on for you as it is now.

Let us know how you get on with your tests please.

Jean

[Buffafly]

These expressions which mean one thing to a professional and something else to the layman are very annoying apart from distressing sometimes. To the layman ‘palpitations’ mean the doctor thinks you are neurotic while to the doctor it means you are aware of your heart beating. Heart failure to a patient means your heart has broken down (literally) while a doctor thinks it needs a bit of tuning. To a professional an asthma attack is the equivalent of a heart attack while until recently I thought it was asthma bad enough to cause distress and need some extra doses of meds. We need the equivalent of the mysterious abbreviation list 😂

[Singwell]

In case it's of use, CDreamer did a post within the last couple of weeks about why we pee a lot in AF. Something about as we move towards persistent AF that is linked with fluid retention and can be misdiagnosed as heart failure. I think it's worth you reading it in case it's relevant. CDreamer

[aFibber55 in reply to Singwell]

Very interesting indeed. Here’s hoping it applies to my results. Thanks for the link.

[EngMac in reply to aFibber55]

I have not posted in quite awhile. I have learned a bit about heart failure since I had it in January and still have it. I was lucky and a visit to emergency ended up with 11 days in the hospital and care by ( at last) a competent cardiologist and electrophysiologist. This was really the luck of the draw.

Like you I noticed a slight shortness of breath. I could still carry armloads of hardwood up 18 steps and only be slightly out of breath at the top. But, when I arrived at the hospital, the tests showed serious heart failure. My ntProBNP reading was 6800. It should be 1 to 300. The echocardiogram showed a left ventricle ejection factor of 15 to 20% and it should be closer to 60%. Apparently, I should have been unable to do much of anything but I still could do what I have always done. My blood pressure was very low. So the doctors likely thought cremation should be next. The other noticeable symptom was fluid in the lungs. I had a lot of it. I did not have the usual swelling in my legs.

So sometimes a person's health is crap but they don't know.

An angiogram showed my arteries are fine.

Now with good drugs, and there are new ones that help with heart failure, I seem fine but that may not mean much. My ntProBNP is down to 2400 and they want it below 1800 for me. They tweaked the drugs to the maximum I can tolerate. I still have AF. They are not concerned about it. My heart rate stays below 100, except if I exercise, but apparently this is ok.

I go to a heart function clinic and they monitor and provide advice. I have to weigh myself every morning; and if my weight increases, this likely means fluid is building up somewhere, and for me in my lungs. I have to strictly limit salt intake and the amount of liquids I ingest. Eating at restaurants is not good. I have a fluid pill that I can take to eliminate the fluid. This lowers my blood pressure into the 70's and 50's which is too low but I don't seem to have negative effects but I feel a bit off. My next echocardiogram is in July.

So you should likely monitor your weight, keep your liquid intake reasonable, minimize your salt intake and pay attention to your breathing. If you become more short of breath, I suggest you visit the emergency department. I suspect, if I had not, I would not be here to write this.

[aFibber55 in reply to EngMac]

Thank you EngMac. What a story and so glad you got appropriate care and access to new drugs to keep you going. Let’s hope your angiogram goes well and that you continue to carry your left timber upstairs.

I had been feeling fine before this, just the same since diagnosis of AF two years ago, so I just got used avoiding hills and steps as I thought I was the beta blockers stopping my heart rate going up and hence not making it impossible to scale the heights on my walks.

My BNP 530 pales in comparison to yours though. All I can do now is to wait what happens next. I am aware of avoiding salt and keeping an eye on my fluid intake, that much I remember from my mother’s treatment, but it will be interesting how to balance that as I don’t tolerate heat very well and perspire the minute we hit double figures. I was also told that keeping hydrated is important for AF and migraines (goodness I sound like a medical journal here).

As for eating out, that went overboard sometime ago as certain foods cause havoc with my digestion which then kicks off AF and those seem to be the base ingredient for most restaurant meals (onion, garlic, high fat content, additives, colourings, gluten, lactose, caffeine, chocolate, alcohol) what a cheap date I have become and an absolute nightmare to buy presents for as forgot to mention allergy to pollen, so no flowers either 🤣🤣🤣. The only downside is that I mostly end up catering for family gatherings and as we got some vegans, dairy is added to the endless list of restrictions too.

But I am alive and kicking and will just have to learn to direct others to do the fetching and carrying and I can now stay at the base camp enjoying a good book while the others conquer the world. What I have learned about the world, looking at it from higher up, doesn’t make it much better anyway. Better stay in the woods.

I can also now tell everyone that my belly is all fluid as well as me being big boned, nothing to do with those low-sugar, lactose, gluten and taste free biscuits I occasionally fall upon.

[EngMac in reply to aFibber55]

I just saw this article. Makes one wonder what is the truth. The comments at the end of the article are worth reading, especially the last one.

peoplespharmacy.com/article...?

[aFibber55 in reply to EngMac]

Interesting 🤔 but like you said, it’s hard to know what to believe. Perhaps the old “little of what you want does you no harm” approach works best unless you are told otherwise by the health professionals.

[mav7]

Hi aFib

Note that my cardiologist does not put much stock in the PN-Pro BNP. My GP included the test as part of my semiannual blood tests and the reading was quite high. Cardiologist said not to be concerned that other tests are more important.

Did not question him further, may should have. My cardiologist is kinda' arrogant guy, says very little, but very well educated and experienced.

[Lilypocket]

HiPN-pro BNP is an interesting reading that cardiologists react to differently from what I have seen and read. Mine was just over 300 and my Dr got very twitchy about it but no action was taken. I read an interesting article ( if I can find it again I'll post it) about BNP results. According to this paper people who experience Afib episodes ( lone episodes) have higher PN-pro BNP readings for about a week after the event that have no negative effect on the heart i e. are not a symptom of heart failure. In my case it made sense as I had just experienced 3 lone AF episodes before my blood test. The follow-up test result 3 months later was in the 100's (after a couple of Afib free months) Obviously I'm not medically trained but it seems to be an interesting research result giving a different reason for higher results - but not fully supported by some (including my cardiologist lol)

I'm sitting out my 4th long episode this week so far - getting immune to the meds so am considering an ablation too!

Take care x

[aFibber55]

Very interesting Lilypocket and good luck with exploring the ablation route, and I hope your AF settles down a bit while you ponder. Although I am very very grateful for all the advances in the medical world, it also brings with it that difficult element of choice. (Well, it’s more like an illusion of choice at the moment with the long waiting lists).

The flip side of choice is anxiety and complexity. For example, my mother’s generation lack of choice in food stuffs, made it easy. No catering for cranky eaters and no agonising what to cook as each day of the week had it’s signature “menu”. Sunday roast, Monday cold cuts, Tuesday Shepherd’s pie, Wednesday omelette, Thursday pan fried “pizza”, Friday Fish n Chips and Saturday “hi-tea”.

Well actually, that’s my mother-in-laws routine as I was brought up in Finland, my mother worked full-time and we all had hot lunch at work or at school, so she only (very reluctantly) cooked at weekends, but I digress again. Since losing my absolute best friend a few years ago, I miss our meandering conversations which left the rest of the world behind in a swirling mist of confusion, whereas we never got lost and always managed to find the thread again.

It sounds totally possible that BNP levels remain high after AF episodes, but I usually know when I am having one and I have had a lot of bloating (fluid perhaps) and spend a lot of time going for a pee at night instead of during the sensible daylight hours. All this suggest that there is some struggling in the heart department, but I will have to wait until someone actually tells me what’s going on.

In the meantime I am enjoying some lovely chats with my fellow Afibbers and wondering if it’s worth to organise an Easter Egg Hunt as I am bound to forget where I put them by the time I turn around,🤣🤣

[Lilypocket in reply to aFibber55]

I agree about the frequent visits to the loo. But I had an echocardiogram a couple of months ago and all good. But I too get breathless on exertion ( going up a hill for example) but not always. Strange. I think it's the Bisoprolol. As per advised above I took some salt in water then had toast and a cup of decaf and flipped back into NSR at 10h30 frog time. Yes it really helps having this site! I feel isolated sometimes and wish I knew someone ( not virtually) who has the same thing for a good chat in person. I'll have to find the eggs first before I hide them 😅😃

[confused71]

I am going through same thing although heart failure has been confirmed waiting to see cardiogist 6 week path way I am now in week 15