We are the lucky ones...: Why did I... - Atrial Fibrillati...

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We are the lucky ones...

wilsond profile image
72 Replies

Why did I write this? Because on Tuesday a friend of mine died from a massive stroke suffered a week before.

Undiagnosed AF and Flutter hence not medicated or monitored.

I seem to recall a campaign for national AF screening,does anyone know how it's going please?

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wilsond profile image
wilsond
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72 Replies
sotolol profile image
sotolol

Ohhhh so sad bless her. Yes we are so lucky. Really lucky. Hope you bearing up.

BobD profile image
BobDVolunteer

I thoroughly agree with you Wilson.There are still countless people dying in this way or even worse being turned into vegatables because of undiagnosed AF or lack of anticoagulation for those already diagnosed.

I actually did some screeening a few years ago at two local surgeries and out of 75 tested found seven people with AF of which two were new cases. GPs do have to have a list of people in their surgery with AF but I don't think the government ever introduced national screening.

Alessa69 profile image
Alessa69 in reply to BobD

That’s so sad Bob, thinking of lives lost . I’m was so grateful when I was diagnosed 2 years ago. My symptoms were so random , I was diagnosed during EP studies for an SVT episode . I’m eternally grateful for that

Maggimunro profile image
Maggimunro in reply to Alessa69

Same here Alessa. Went in for an SVT ablation and came out with a diagnosis of Afib.

Both my brothers were asymptomatic and their Afib was picked at routine health checks.

Both parents died of stroke, so so grateful to have been diagnosed, ablated and anti-coagulated.

Alessa69 profile image
Alessa69 in reply to Maggimunro

Heavens above , aren’t we the lucky 🍀 ones ?! I’m the youngest of 5 siblings , my bro has other Cardiac issues, but I would love for them all to get screened .

bantam12 profile image
bantam12

My brother in law was admitted to hospital with a back problem and they found he was in permanent af, he had zero symptoms so had no idea there was a problem, luckily he's now on Apixaban, Bisoprolol and awaiting cardioversion, close call for him I think !

10gingercats profile image
10gingercats

That is dreadful .Yes, We are the lucky ones to have been diagnosed and treated with meds.

A friend of mine had two massive strokes one after the other that left him in a tragic state.It was undiagnosed Afib.he lived for ten years in a near vegetative state with an active brain that often brought me close to tears as I saw him struggle to speak.

There does need to be some kind of regularAfib. checking for older people in order to avoid this waste of life. It is not good enough that often Afib is only picked up casually during some routine screening

Finvola profile image
Finvola

Sorry about your poor friend - there but for our diagnoses and anticoagulants would we all be risking the same.

Tragic news, and unfortunately, even many who are aware of the risk still resist taking anticoagulants.........

LaceyLady profile image
LaceyLady

So sorry for yours and the family’s loss 💐

LaceyLady profile image
LaceyLady

Well, I’ve seen a few people on a fb group for Arrhythmia and their drs are saying they have anxiety or panic attacks 😳

mrgwair567 profile image
mrgwair567 in reply to LaceyLady

Doctors are all to ready to put things down to anxiety and panic attacks!

Some of them need to look a little further!

john-boy-92 profile image
john-boy-92

It's also lucky to be a stroke survivor if you retain mobility and cognitive function. An EP said my AF didn't need an anticoagulant as I was a cardio gym bunny. Eighteen months later I had a stroke. Now I try to persuade others to learn from my experience. When I had peritonitis (GP thought it was a stomach bug or colic) I wasn't operated on for hours. I had a femoral hernia for days - that requires emergency surgery as it can kill in 45 minutes - but it wasn't diagnosed until I had it done privately because of the pain. I've also had pulmonary toxicity - I was on high pressure oxygen as per COVID-19 and arguing to stay out of ICU - they later told me I had been close to death.

About 4 weeks ago my rapidly rising PSA headed back to a high but not worrying level. This month I'll be off to the hospital for a colonoscopy and hoping that I don't pick up COVID-19.

I reckon that I'm very lucky!

Alessa69 profile image
Alessa69 in reply to john-boy-92

Sounds like you you been very lucky 🍀 coming through all that . Good luck for next procedure, stay safe, stay well 🙏❤️🙏

BobD profile image
BobDVolunteer in reply to john-boy-92

It took seven years and four biopsies to find my prostate cancer and then only when they did a transperenial procedure where they found it " hidng round the front." Major surgery. lots of radiotherapy and three years of hormones and nine years later I'm still here.

john-boy-92 profile image
john-boy-92 in reply to BobD

You had the tenacity and grit to stay with it. It's the determination and self-belief that can pull us through a difficult spot. I suspect that you were determined to get back to the world of nitrided crankshafts and titanium conrods too! Did the hormone treatment reduce your muscle mass and ability to build muscle? I find that's the case with Finisteride and old age.

I had a hot (what does that mean?) MRI to guide the transperineal biopsy. That found abnormal but not cancer cells. That could mean the cores glanced the side of a cancer or, that it's slow growing and not a problem: I don't have Gleason numbers to gauge this. The surgeon suggested another biopsy - possibly a grid - but it means not taking anticoagulant for several days either side. As I've had a stroke, that would be quite a risk as ECGs show very brief periods of flutter . We agreed not to have a biopsy so I'm on surveillance. I take Finisteride that has reduced my adjusted PSA from 9.9 to 5.4. However, the combination of an anticoagulant and Finisteride causes mostly invisible traces of blood, hence fast track cystocopies and colonoscopies. The colonoscopy appointment this month means that the clinician team will be in full PPE and, my wife is not allowed in the hospital.

Stay well and keep giving excellent advice.

BobD profile image
BobDVolunteer in reply to john-boy-92

My PSA was up around high 30s before they actually found it. By the time they operated it had already left the prostate and they found cells in various other places hence the Zoladex. That stuff made me loose most body hair but I did not grow boobs like some do! My wife told me I was a much nicer person during those three years!

I did notice loss of creativity and mental function and stuggled with design problems once or twice as a result. Things that had been second nature took far more thinking.

On a different tack re your traces of blood. I almost went into panic mode this week when pink wee appeared but fortunately my wife mentioned the same problem associated with the roast beetroot we had for dinner! lol 😁

john-boy-92 profile image
john-boy-92 in reply to BobD

A PSA in the high 30s, wow that must have been a shock. No wonder that it had escaped the capsule. My MRI confirmed that I don't have that issue. Male boobs, I must admit I was worrying that I was starting to get that way, but the rowing machine has blitzed those. I use the rowing machine outdoors, so the winter has reduced usage, but in 12 months I've clocked 600km. Temperament - I think I'm better except for shouting at the television and radio (no difference there), but I now watch Sewing Bee and I know what cut on the bias means!!

I know what you mean about beetroot. It metabolises to nitric oxide that is a vasodilator (it drops your blood pressure). I took citruline malate this year forgetting that it's a vasodilator and, it's not a wise choice to take with blood pressure medication. Hence an overnight stay in Bristol Heart Institute. That was another learning episode!

GrannyE profile image
GrannyE in reply to BobD

Thank goodness for that bob.

It is amazing how often doctors miss something important or even give you treatment for something you haven’t got!

LaceyLady profile image
LaceyLady in reply to john-boy-92

Oh my, you too suffered at the hands of ‘qualified medics’!!!

mrgwair567 profile image
mrgwair567 in reply to john-boy-92

So glad that you've got through what sounds like an awful,time !

Try not to worry too much about the colonoscopy, it's not as bad as you may think

Good luck ! Keep safe.

john-boy-92 profile image
john-boy-92 in reply to mrgwair567

Thank you for your kind thoughts. This will be my fourth colonosopy / flexible sigmoidoscopy. The preparation is a problem for the microbiome and therefore the immune system. However, the area of concern is picking up COVID-19 in hospital as I'm male, 73, I've had pulmonary toxicity, a stroke, and I have atrial flutter. Apparently being bald is also a risk factor.

mrgwair567 profile image
mrgwair567 in reply to john-boy-92

I'm so sorry that you have all these worries!

I hope all goes well for you

LaceyLady profile image
LaceyLady

I had a much younger chap who sorted our computers out. I hadn’t been able to get him to do our computers, one day I was in the drs and he came in with a stick, said h’d had a stroke😳 I decided to buy a blood pressure machine for us to use and also so I could check my Reflexology & Healing patients. My A&D machine even then was far better that the surgery’s.

john-boy-92 profile image
john-boy-92 in reply to LaceyLady

Reflexology with essential oils is almost as good as a massage with hot stones. I can get talkative in Reflexology, and when the reflexologist had enough of my babble, she worked on a spot near the ball of my foot. I would promptly shut up, go to sleep (snoring apparently) and dream of saturated areas of green (heart chakra so I'm told). Raki really confuses me. I once had a 15 minute sampler with a Raki Master who didn'the know me. She also didn't know that much earlier in the day, that I did a leg strength session in the gym. Holding her hands about two feet above me, she said you have high energy in your legs and I'll rebalance it. Afterwards there was none of the expected discomfort in my legs. I wanted to go back for a full session, but I just couldn't handle the conflict with my logical thought processes.

LaceyLady profile image
LaceyLady in reply to john-boy-92

Being a qualified Reflexologist for 22years, it’s my opinion NOT to combine aromatherapy oils with Reflexology because they are both very powerful in their own right. I use a specific body wax which is brilliant.

GrannyE profile image
GrannyE in reply to LaceyLady

Which essential oils to you use, what for, and how? I sniff lavender every morning and evening and put a few drops into my various body/face creams every morning together with frankincense and I put a few drops of rosemary into my conditioner. Wary of putting many diluted essential oils on my skin in case they have an adverse reaction in the sunshine.

LaceyLady profile image
LaceyLady in reply to GrannyE

I’ll use lavender on burns or in bath, no more than 4 drops in bath or you’ll be awake all night! Tea Tree oil for antibacterial anti fungal inhaling, rosemary, Geranium, peppermint for my oil burner. Vitamin E to help heal scars. I have my Bible, the Fragrant Pharmacy. I’m not an aromatherapist, but do love oils and herbs. You need to be very careful with essential oils and herbs because they may have side effects or interactions with medication.

GrannyE profile image
GrannyE in reply to LaceyLady

Thank you for your reply. I have just bought the Fragrant Pharmacy and am waiting for it to arrive.

john-boy-92 profile image
john-boy-92 in reply to GrannyE

The relexologist that I went to had a box of essential oils. She would select oils based on the effect she wanted to achieve. She stopped using them as she applied them with her bare hands, and developed a reaction to them. Some of the effect was lost when she stopped using them.

LaceyLady profile image
LaceyLady in reply to john-boy-92

I hope she was also a qualified aromatherapist. Using them neat with her hands!! That is so was silly, because her body will absorb them!

BobD profile image
BobDVolunteer in reply to john-boy-92

Intresting John. I once had a session with and ex pop star called John who had invented a musical bed with lots of different speakers underneath it with different frequencies. You lay flat on your back and he played sounds into it which affected your body. A very relaxing and therapuetic experience. Even without the acid. lol

john-boy-92 profile image
john-boy-92 in reply to BobD

That sounds brilliant (no pun intended). Everything from Samantha James (a great track for Body Balance back in the day) to AC/DC and Blackberry Smoke. I would think tripping at the same time would be really weird. However, a bed like that might persuade me to pick up the PRS Bernie Marsden, plug it into the HeadRush and Fender Champ and, try and remember those power chords and root + 5th :-)

jeanjeannie50 profile image
jeanjeannie50

That's heartbreaking and what a shock for you! I sometimes wonder whether we should check the pulses of all our friends.

pottypete1 profile image
pottypete1

A very sad story.

In many ways we are the lucky ones.

I seem to regularly respond to contributors to our forum who are questioning why and trying to find a good excuse for not taking anticoagulants.

I have taken Warfarin for many years and I am happy to do so.

Stroke is an awful affliction and yet I read that the NHS has had far fewer patients coming to hospital with stroke symptoms since the Covid19 pandemic struck.

Pete

in reply to pottypete1

But a hemmoragic stroke can be much worse than a stroke from a clot.

My mother had a stroke the same day as my father in law. Hers was a brain bleed while his was from a clot.

He got TPA within a couple of hours and by the next morning it was as if nothing happened. He was out of the hospital within 2 days, and back to driving and to work within a week.

My mother was in ICU for a week and then moved to rehab. Her stroke left her permanently paralyzed, unable to swallow, on a catheter, with a feeding tube implanted in her abdomen and her speech was garbled. She lived that way for another 2 years.

Considering my family history and my personal history of micro brain bleeds from Xarelto, and a major bleed from warfarin, I will take my chances and go without the blood thinners.

I do not at all consider myself lucky in any way to have had to deal with A Fib for the past 34 years.

pottypete1 profile image
pottypete1 in reply to

Thank you for the reply. As always there are examples of opposite occurrences.

However it was swift action that most probably saved your father in law.

The NHS website states:

“Ischaemic strokes can often be treated using injections of a medicine called alteplase, which dissolves blood clots and restores blood flow to the brain.

This use of "clot-busting" medicine is known as thrombolysis.

Alteplase is most effective if started as soon as possible after the stroke occurs – and certainly within 4.5 hours.

It's not generally recommended if more than 4.5 hours have passed, as it's not clear how beneficial it is when used after this time”.

For AF sufferers a stroke caused by a clot is the biggest fear as when the heart returns to normal sinus rhythm clots can be dispersed from the atrium if a patient is not on an anticoagulant treatment.

I am so sorry to read your story regarding your mum.

Pete

in reply to pottypete1

In the US it is standard procedure in the ER to send them for scans to determine the cause of the stroke ASAP so that if it is a clot the TPA can be injected. There have been campaigns so people recognize the signs of a stroke and seek help immediately. My father in law's case is the norm, not something unusual.

I have also had business colleagues and friends given the same treatment and they completely recovered from their strokes.

In heart attack cases it is also routine to take them from the ER to the cath lab and they fish out clots, do angioplasty and put in stents. No waiting for a consultation weeks or months later.

The treatment given my father in law is routine.

My mother was screened to determine the cause of her stroke the same day, in another hospital in another state, but sadly hers was a bleed. My wife's grandmother and Uncle also died from a hemmoragic stroke. Both were on Warfarin too!

pottypete1 profile image
pottypete1 in reply to

Yes you are very right that it is routine to use a clot busting drug for anyone who presents with stroke at EP.

The trouble has always been that many do not get to ER quickly enough.

This problem has been severely exacerbated since the beginning of the COVID19 pandemic. In the UK the ER departments and ambulance services have seen a significant drop in patients because of the fear of catching the virus.

Please do not think I am trying to pick an argument with you I am just playing devil’s advocate and pointing out that nothing is black or white on this subject.

Pete

in reply to pottypete1

Thankfully where we live in Texas routine doctor and dental and eye doctor visits are now allowed. There are only 19 people hospitalized in our county with the virus, so fear of getting medical care is definitely going down.

pottypete1 profile image
pottypete1 in reply to

Whereas in our local hospital as of 19th May 170 have died and in our county 553 have sadly died.

I fell off a ladder 4 weeks ago and unfortunately spent all day in hospital it was a sobering experience.

Things seem to be getting a bit better but we must still be very careful.

Pete

john-boy-92 profile image
john-boy-92 in reply to

A haemoragic stroke can be followed by a haemoragic transformation that usually needs an MRI. The GP who attended me was not aware of that. My neurologist was on holiday at the time, and when she returned, called me in for an emergency MRI.

Was your father in law aware that if he is in the UK, that he should not have driven for a month? Thereafter it would have been wise to check that he has at least 120 degrees horizontal field of view for Group 1 (car or motorcycles), or 160 degrees for Group 2; these EU requirements were transposed into UK law in March 2015. Failure means a revoked or refused licence as I know too well.

in reply to john-boy-92

My Father in law lived in Florida at the time of his stroke. He returned for a check up a week after he got out of the hospital and they ran all the checks required to see if he was capable of driving. He passed with flying colors.

Unless the doctor reports to the DMV that you cannot drive, it is easy to do so until the next renewal.

john-boy-92 profile image
john-boy-92 in reply to

That's interesting. In the UK it's difficult to regain a Group 1 licence revoked due to a reduction in the visual field. The assessment will be at least 12 months after the revocation, and is a three hour test of cognitive ability and driving. Pre or post-assessment tuition is unlikely as the DVLA Medical Group claim that drivers in training will act illegally. In recent years, around 25 drivers a year out of an annual figure of about 8,500 regain their licence.

wilsond profile image
wilsond in reply to

Well neither do I consider myself lucky to have AF and Flutter ,with a strong family history of AF ,heart disease and stroke.

My point,that you seem to have missed ,is that we are lucky to be receiving care and appropriate medications as well as the chance for us to reassess our lifestyles,because we have had the condition(s) identified .

My consultant Proff Osman ,who spoke at this year's conference,said to me there are thousands of people who die of undiagnosed AF issues per year.

So yes I DO count myself lucky to be aware and not to suddenly die like my friend did,and whose family are now berating themselves for not insisting on investigations . Her GP has a very laissez faire attitude to arrthymias.

Kaz747 profile image
Kaz747

Sorry to hear about your friend. So sad. My friend’s father had a bad stroke at 64 from undiagnosed AF. It put him in a wheelchair and left him severely disabled. I remember at the time her saying that he could be like this for the next 10 years. He actually lives 20 more years but without any quality of life.

GrannyE profile image
GrannyE in reply to Kaz747

That is really sad. QoL is all

wilsond profile image
wilsond in reply to Kaz747

That's my fear too,not even so much for me but for my poor family who would be suffering seeing me like that ...xx

Kaz747 profile image
Kaz747 in reply to wilsond

I agree totally. Let’s hope it doesn’t ever happen.

CDreamer profile image
CDreamer

So sad and yes we are lucky, even though we don’t always appreciate it.

Singwell profile image
Singwell

That's a good way to think about it as the AF itself can be uncomfortable to say the least. I suspect I had it off and on for up to 5 years undiagnosed. I used to say to my friends that I felt like someone had flicked a switch when I hit 58... As a matter of fact, with the right meds, self care and realising I'm not required as superwoman anymore and I feel better than I have for years. My vitality. Sorry you lost your friend this way. Strokes are cruel.

wilsond profile image
wilsond in reply to Singwell

Thank you xx

Alessa69 profile image
Alessa69

So sad about the loss of your friend . We are the very lucky ones , as we’ve been diagnosed and are being treated. I’m thankful for every day

wilsond profile image
wilsond in reply to Alessa69

Thank you xx

Silvasava profile image
Silvasava

Sorry to read of your friend. I had an ischaemic stroke 3 days before last Christmas ( thrombolised- no after effects) which diagnosed aFib. Now on the usual tablet regime. Like many of you I know how lucky I am as my grandfather spent 4 years in a geriatric ward unable to talk or move properly and my aunt spent 2 years in a wheelchair. Neither of them had any quality of life, it's heartbreaking and has an enormous impact on the immediate family too.

john-boy-92 profile image
john-boy-92 in reply to Silvasava

A stroke affects us in many ways. For several days I didn't know where the bathroom was in our small bungalow, although we had lived there for 25 years. I had driven for 50 years, sometimes a 1,000 miles a week, but after the stroke I couldn't remember how to get to places that I knew well. That took about two years to re-map my brain. Despite full mobility and a good cognitive assessment, I'm still trying to regain my driving licence.

wilsond profile image
wilsond in reply to Silvasava

Thank you and glad you're recovered and medicated xx

Bravemouth profile image
Bravemouth

So sorry for your loss. My deepest condolences

irene75359 profile image
irene75359

Your post brought a lump to my throat, you may remember I lost my sister a couple of years ago in the same way. Not a day goes by when I don't think of her and long for her. I walk and daydream about testing her with my Kardia (I didn't).

I am so sorry for your loss.

Finvola profile image
Finvola in reply to irene75359

Awfully sad Irene - I’m sorry for your loss too. xx

irene75359 profile image
irene75359 in reply to Finvola

Thank you Finvola.

wilsond profile image
wilsond in reply to irene75359

Thank you Irene,yes I do remember your post about your sister. Very sad.

I hope you are keeping well xx

irene75359 profile image
irene75359 in reply to wilsond

I'm fine thank you - just missing the contact with four little grandsons! x

Belle11 profile image
Belle11

So sad and unnecessary. We are always being bombarded about cholesterol and CVD, but there are no no public awareness campaigns on AF even for people with conditions that make it more likely.

tunybgur profile image
tunybgur

I think that screening for lots of common ailments, especially those that are known to occur as we age needs to be improved.

I know it puts huge pressure on the health services but it must be cost effective in the long run....and it is all about money...sadly.

Also we should be much more proactive about trying to protect people from themselves, ie obesity, sedentary lifestyles and general bad habits which eventually require very expensive treatments....like we did with smoking, only 15% of the population now smoke, down from 40% 40 years ago, all due to legislation, taxation and publicity.

Barb1 profile image
Barb1

When my husband keeps bemoaning my health, I say that I feel I am one of the lucky ones, for instance my grandmother died of a stroke at age 62. He doesn't agree.

Desanthony profile image
Desanthony in reply to Barb1

Barb1, I had a friend die just a few weeks ago. She had suffered from AF for many years and was in her early 70's however, her Father died at 52 undiagnosed so I think you are right we are lucky. My friend was having the time of her life in her fifties when I first met her so glad she was diagnosed and could make the best of her life. My nieces step childrens' Mother also died at 42 undiagnosed leaving two small children. Thankfully the two boys are getting checked annually for any problems.

Desanthony profile image
Desanthony

Sorry to hear that. I know there is no national screening for AF which may be a good idea but a good start would be if GP's checked blood pressure etc every time anyone went to the surgery. I was impressed once many years ago in the US - I was working there for a short while and before anyone actually went to see the Doc a nurse took blood pressure etc. Hopefully that would show up some AF sufferers.

john-boy-92 profile image
john-boy-92

On a serious note, I'm a member of the local Health Centre's Patrient Participation Group, and I raised the issue of monitoring for undiagnosed AF. A GP replied that an article in the BMJ discounted it. I can't believe that undiagnosed AF would be ignored. My cynical side says that NOACs are the preferred medication, but the commercial annual cost is around £10 for Warfarin and £600 for Pradaxa; a big hit for the Practice medication bill. With the number of people doing extended cardio exercise, there are going to be people like me who have developed AF, but GPs will tell them that the high heart rate means that their arteries are those of a twenty year old, and clean as a whistle (that what I was told). A little while ago I did an infomercial for the makers of Pradaxa (Dabigatran) anticoagulant about how I had ended up with a stroke because I hadn't taken an anticoagulant. The video (password protected) was (is?) only available to clinicians in the UK and USA. I gave the details to Trudie Loban, but I don't know if she has persuaded the makers and the promotion team to release it. I've signed a release form for my appearance in it.

mrgwair567 profile image
mrgwair567

So sorry!

doodle68 profile image
doodle68

So sorry to learn about your friend Wilson , a reminder of the many people with undiagnosed AF who are susceptible to strokes and just arn't aware of it .

I mentioned to my GP some time ago that the information screen in the surgery waiting room that carries details of available services would be the ideal place to show the message ''Learn to check your pulse and do so regularly for any irregularities, it could save your life ' she agreed but it hasn't happened yet.

wilsond profile image
wilsond in reply to doodle68

Thank you doodle,yes it's such a simple and good idea ! Xx

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