I will shortly be having an ICD fitted (defibrillator) to hopefully control idiopathic VT, I am currently in hospital waiting for a slot after an exercise related syncope event.So signing my consent forms and going through the risks and what not to do
I can't drive for 6 months or until 6 months after àny future VT shocks from the ICD
and
I can't use our induction hob for cooking unless I grow 2 ft (60 cm!) arm extensions.
So my light hearted question, I am searching for humour here, is in a poll which is the greater loss?
Searching for the #chinkoflight
😏😁
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Chinkoflight
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Well if you want to keep this light hearted then better have a chef on call in case needed and a chauffeur but not sure either come on the NHS
If it was me though I cannot drive and I am agoraphobic so never go out anyway so that would not be a problem even though do not become agoraphobic to solve that one it is not a very good life stuck in all the time
Not sure if I would miss cooking or just get someone like my Husband to do it as he does a lot of cooking as it is so I am not much help I seem I would have both events covered
Good luck though with your procedure and let us know how you get on x
Well most of the time on this forum I stay solidly in the headspace, and stick to facts , epidemiology etc. But I know that a huge number of posts on this site are emotionally driven, and if I start to reflect too much on one side of that pendulum it's not comfortable.So feeling sorry for myself here and now, 2 years ago on March 13th I had not a clue HealthUnlocked existed when I had a cryptogenic stroke with no warning or subsequent explanation. The actual experience of the stroke was as deeply emotional as physical.
Moving forward 5 months an echocardiogram of the liver and kidneys following some erroneous bloods showed no issues except taking a sideways look the specialist echo person spotted a whole bunch of gallbladder stones it was pretty chocker full. Never had a symptom in my life. So a simple laparoscopy was planned which went wrong on the table, a lengthy operation apparently followed with complications. So my body really does have visible scars and an permanent discomfort.
Moving forward a follow up letter from a cardiologist asked me to go into hospital to have an ILR fitted in February 23 as the 7 day Holter results from July 22 were useless! In May 23 a call (I have never seen anyone from my local hospital managing my post stroke discharge) from the EP team said I had had an Afib event logged on the ILR. Again completely oblivious to this and subsequent it was described as paroxysmal.
Moving on to 27th January (24) I had a syncope event whilst running and subsequent interrogation of the ILR showed a 23 second VT of the dangerous sort. Again no warning and to date after extensive tests and being in cardiology now for 14 days ( exc 4 days in a dysfunctional A&E too) I'm told it's Idiopathic and it's even more life changing than the stroke that almost but not quite killed me.
So my favourite medical terms are
Cryptogenic
Paroxysmal
Symptomless
Idiopathic
What is the probability of playing Bingo and getting that full house?
Leaving me with a car and a cooker ( it's this that has me laughing with tears) I can't use.
So I was looking for humour.
Please acknowledge you've read this then I'll delete the post.
I do find BHF forum a tricky one to post on. Very often people go off piste in their replies to make a point. Often irrelevant to the post.
And I'm sorry if my humour is a little dark, it's not intended to offend, and I think you have to be seeking offence on this occasion to find it. But the circumstances many people find themselves in, whether stuck in their headspace or disabled by their emotions and anxiety, is very dark and real.
But cryptic finger wagging as I assume I have to accept was actually your intention, was surprisingly oblique. Why not just express what was wrong in your opinion. Be brave.
Well I certainly appreciated a bit of humour to lift the mood a bit. We all have to deal with enough seriousness the rest of the time, so thank you 😊 PS.. I have an ICD too and definitely would choose driving and let someone else cook...but unfortunately I don't have an induction hob, so wasn't able to get out of cooking...sad times 👎🏾😀
Driving wins every time! I had to change my induction hob to an electric one when I had my ICD. As for the person having a go about your post, best to ignore him. He did the same to someone else yesterday. Obviously has nothing better to do. And looking at his posts, they're all about his dog etc!!
Hi thanks, I'm trying to move house so am reluctant to actually change the hob but it's looking like the only option if I can't get the other half to cook! I'm not going on to TV dinners! 😭
Yes I totally agree with you. I was upset and annoyed at having to use an electric hob but we don't have gas here so had no option. You get used to it. Good luck!
I thought someone of your experience on this forum would have known that your post was more suitable to the Social Check-in than the main forum. You will remember the vitriol on this forum from last year and the humour wars that sparked it which resulted in the Social Check-in being created for chit chat and humour.
The one thing of value in your post is the hob information which you could have posted in your usual factual way.
As for your bingo reference, the only thing that has stopped me from having a full house is death!
How's that for dark humour.
Please read below:
I had my first Biological Aortic Valve replacement at the age of 52 in 2014, this was after prolonged observation by Cardiologists over a 25 year period due to a bicuspid valve.
As I was reasonably fit, running 5k and 10k twice a week and playing 5 a side football once week with people half my age, recovery was quick. I was back running after 6 weeks, much to the horror of the rehab nurse. Although after my initial session with her I was allowed to build up my fitness back to where it had been before the operation and life went back to my normal routine.
Unfortunately, things changed in 2017 when I had a tooth removed by a Dentist who didn't prescribe prophylaxis antibiotics and 2 weeks later I became ill. Nothing was showing up on scans or blood tests and after 6 months I had deteriorated to the point where I could barely walk.
Having been poked, prodded and and scanned, both externally and internally until they had run out of ideas I was sent to have yet another upper abdominal scan which finally showed some sort of indication as to what was wrong. My Spleen was enlarged and the Radiologist told me it was most likely caused by a blood infection.
I looked up Dr Google and found that one of the causes of an enlarged Spleen is Bacterial Endocarditis. After speaking to my GP, I was sent to hospital where this was confirmed via blood cultures after 3 days. I was extremely lucky to survive.
Nothing much was left of my Aortic Valve and so a second valve replacement was required. 4 months after being in hospital I was released back into the community, recovery was much slower than previously due to the state of my health but slowly I made it back to work over a year after becoming ill.
3 months later, I became ill once again, this time I was driven directly to the hospital by the GP and Endocarditis was confirmed 3 days later although this time it was Fungal Endocarditis, if BE is rare then FE is off the scale. A further 3 months hospital treatment involving Amphotericin B at cost £1000 per day for over 6 weeks. Finally I had recovered sufficiently to go home and "Enjoy whatever time I had left, however long that may be." Yet again I was extremely lucky to survive but now with lifelong antifungal treatment alongside the normal medication.
A year later I had a NSTEMI where a part of the infection still floating around caused a blockage. As I was lying on the floor whilst my wife was phoning for an ambulance my first thought was about the flowers I had ordered for her birthday in a few days time and if I died, how they would freak her out when delivered. Her response was that she would have used them on my grave, Dark humour indeed.
This was my second such incident, the first being when I was in hospital the first time when a part of the infection caused tissue death in my Spleen.
I have been investigated for a TIA for the same reason. I was driving on the motorway in the outside lane when suddenly without warning I lost all vision in the lower half of my sight. Luckily I had my wife in the passenger seat and she was able to direct me across 3 lanes of traffic to safety. Who knows what carnage could have occurred if she wasn't there. This resulted in me having to stop driving for 4 months until I was cleared by the Consultant.
Recently, I had a PCI procedure to close a gap around the Aortic Valve which had been caused by my episode of Fungal Endocarditis , this was after a wait of over 18 months due to recent global events. After a false start, a month later I was back in hospital had the procedure and was back home after 3 days.
Finally, after nearly 7 years things are getting back on track, although very unfit I am able to do more things every day and I hoped to get back to jogging by the end of the year. A recent diagnosis of Type 2 Diabetes, probably a result of my inability to exercise, has been a bit of a irritation but nothing that is of concern.
Whilst running on a treadmill I blacked out, eventually coming round after about a minute, blood pouring out of my chin and my teeth knocked out of shape requiring a repair to my bridge which resulted in another period of non driving whilst under investigation.
I am on lifelong medication of Fluconazole as well as Atorvastatin, Ramipril, Lansoprazole, Aspirin and now Metformin.
I haven't written anything about the effect all of this has had on my wife and family.
With all due respect to the 4 Yorkshiremen sketch written by Tim Brooke Taylor, John Cleese, Marty Feldman, and Graham Chapman. If you told that to people today, they wouldn't believe you.
After all of this not once have I felt sorry for myself, I have only been extremely grateful for the NHS and all hospital staff whose skill and professionalism kept me alive.
I still feel that there are people on this forum who had a more difficult time than me and I hope this has been brave enough for you!
That's so much for you and your family to have gone through. I hope you all are doing as well as can be in the circumstances. All the best best moving forward to you all 🫶🤞
I really feel sorry for your history which I have scan read. I'm sure it caps mine everyday. It's a dilemma expressing enough personal stuff whilst remaining sensitive, and empathic to others. I clearly was not engaged at the time the chit chat thing happened. But I haven't deleted because you took a while to reply and it got buried by the significant sharing of views by others which really lifted me on what has been a particularly difficult day in CCU. And clearly it struck an ok chord with I think almost all responders who were able to take the humour as a starting point to touch on some significant personal experiences. I hope you take the time to read all the great posts.
I had a warning today from the moderators, the timing of which can only be as a result of my post yesterday and the people who took offense at my perfectly reasonable opinion. It just goes to show the that the moderators do not investigate a report but merely rely on the amount of people who feel outraged over the slightest thing.
Do you think the forum would benefit from my removal or do you think my experiences far out way the objections of a few.
I hope that the forum doesn't return to the hostile state it was in some months ago but posts on the main forum looking for humour will only encourage similar posts. That is why I suggested it was on the wrong thread.
By the way, I had a reply to a message on a different thread today from a member asking what should she do at a particularly stressful time. I spent over an hour typing a reply to them, if I get banned, my experiences will be lost to the forum for ever.
We all have different ways of expresslng stuff. We are entitled to disagree too. I certainly haven't complained and I thought I had explained my position in a reasonable way to you including some back story for context.I asked you to rather than be cryptic, which you used to effect in a way that was ultimately quite sarcastic and personally critical, the reference to 'feeling sorry for myself' was dare I say harsh.
Let me say this to you in the hope you don't see it as patronising or too much gobbledegook. We sort of live in two states, our rational thoughts and thinking ( I paraphrase as headspace) and then there is our emotional state, all our feelings however they manifest themselves. The best way to be balanced when faced with problems is to be a bit in both not exclusively one. To spend all the time being rational is very adult but it can be insensitive and fail to recognise the individual in front of you. To spend all the time in feeling state is to risk becoming an emotional wreck.
When alone with ones thoughts and feelings, without anyone to sound off against, can be very lonely and take you down dark paths, either too rational with real risks of personal injury, or emotional to the point of breakdown.
You could say overthinking doesn't help. Probably right but most of us are probably guilty of this when given stark outcomes and not enough time to adjust our thinking to a new situation.
Too much emotion and a blubbering wreck of what looks superficially like self pity. Almost certainly not true, there is almost certainly some justification for feeling anxious etc. You don't think anxious, you feel it.
Because of upbringing, which I guess is more prevalent in people of a certain age (dangerous assumption) stoicism has been a feature of families with still strong memories of coming through war years and pre war depressions.
I hope not too presumptuous, your comments have the 'feel' of stoicism. I hope you have the understanding support of a partner who knows you so well you get to do the thinking and feeling stuff for each other almost on auto pilot.
When thoughts and feelings are out of sorts with each other, there is anger, frustration, overwhelming sadness what do we do? We give each other a hug - touch transcends thoughts and feelings. The jabbering, over talking , over thinking person melts into tears.
The over emotional tearful person suddenly feels comforted and can start to talk about what's upsetting them.
When there is no one there at the right time to do this for you, humour can bridge the gap. It's what stand up comedians do for us all the time. We see ourselves in their words and we laugh.
You've had a tough time, a bad deal of the cards, but because you have racked up enough issues for an army, doesn't diminish other people's ailments, problems and dilemma's. That would be to trivialise them.
I think you have a lot to offer and I for one was not hurt or harmed by what you said. You didn't need to be cryptic but if you had explained why it wasn't funny to you or even offensive to you that would be understandable. And not everyone would have agreed but who knows there would probably be some people who might have said we'll done and may still be thinking that view should be expressed.
I'm still in CCU looking to be here another week. And, so you hopefully understand why I am kept in CCU, in spite of looking the possibly healthiest person here including a lot of staff , I have the sudden death version of LVT. I didn't make the risk assessment, this was done by the Consultants. And all the usual explanations for LVT are being ticked off as not applicable. It's very hard to get my head around because I feel okay, look okay, and the vitals are okay! Like so many heart conditions it cannot be cured at the moment, it may be genetic with implications for my grandchildren, it can only be managed. In this case most likely with the belt and braces ICD. This feels like a revolutionary 'treatment' but like frontal lobotomy I'm sure in the not too distant future it will seem a pretty crude device.
As a result of my own experiences, I don't allow emotion to get in the way of my health issues. As for the rest, you see it as sarcastic, I see it as factual and responding to your points such as seeking offence etc. just as you are doing now.
Specifically the implication of feeling sorry for yourself. That's a harsh thing to say to anyone. Cruel to be kind is not rational, it's deeply misplaced part of human behaviour. It's not thoughtful or rational. It's an attitude, and however careful you think you have been with words, the attitude comes through. It's likely to turn people off and not be supportive however much of what you say may be valuable and offering insight. It's just a suggestion, I'm offering my view on why you might have received negative feedback. You haven't received it from me behind your back, I've been upfront as you should have been when you finger wagged me in a far from open and transparent way. Just a bit clever and unthoughtful, or I was just too thick to see it .
I'm sorry, if your cryptic and personal comment meant a cryptic response back but now you are asking me to explain!? That takes the biscuit as they say in Yorkshire and other regions too! We all have to live with how we are. I'm glad that my post resonated with so many users yesterday and this was clearly appreciated by me. I've been even handed in my reflection on your position but you do seem to be on a tramline of thought and your not receptive or understanding of a wider viewpoint. I can only say you are likely to keep brushing up against it. It's a shame because there are valid points in some of your assertions, but they might be dismissed or overlooked. I think this should be an end to this exchange. Stand back and read it all again and take it in.
‘I don’t believe it!’……..’You stupid boy!’ ‘I’m sure it was all done in the best possible taste,’ but…..you ruined a perfectly reasonable post by introducing the h*m**r word. Just like c*v*d it cannot be mentioned in this forum. If it is ‘We’re doomed!’ But, ‘I have a cunning plan!’ ..‘I shall say this only once,’ Why not repost it without the question and see if it gets past the censors? ‘I didn’t get where I am today…’ by stepping out of line. So re-type it now, ‘We really want to see those fingers’
There’s nothing wrong with your post. I never knew you couldn’t use an induction hob. For me I would lose the cooking. After 46 years trying to come up with ideas for dinner I’ve had enough! To me the car is freedom and independence. I know you were being light hearted but it is actually quite thought provoking. Best wishes for your upcoming procedure.
Ok, so I did not know about the induction hob either! Luckily for me ‘I’m cooking on gas’. The not driving is really effecting me, I’m trying not to think about how long it will be until I can get in the drivers seat again!!
I also didn’t know this forum was not allowed humour. St, this is all new to me and a bit of a minefield.
Neither did I. It is a minefield. I think the driving data for accident rates etc is good for people fitted with devices. So much so that the guidance seems to be lagging and based on an unrealistic un evidenced risk assessment. But if my ICD triggers a shock for an arrthymia even if it is symptom less the 6 month ban starts ticking again. For my headspace I am trying to reconcile a forward plan without a car. But not cooking would be really bad, so I will need a solution!I can accept humour that is offensive shouldn't be on this site but behind the humourous I hope question are real practical issues for people and it helps me bring some of those difficulties to the fore. Take care.
I think it's been a great post and discussion, both amusing, informative and serious topics. You've been through a lot. I'm ok I don't have a cooker and I can't drive and if I could drive I'd have trouble going certain places as I'm agoraphobic too. So taxi(someone else does shopping) and microwave (someone else does cooking and I collect it) all the way 🙃👌.In all seriousness though I hope everything goes really well and I wish a speedy recovery back to good health 🤞🫶.
Thank you, all today's posts have been a real lift and helped me move from being a bit too much in the emotional. I know a lot of people can't or don't drive, I think it's quite fashionable even so I'm sure as a pensioner I can find a way of adjusting. Cheers
Good morning Chinkoflight. I think after a couple of months of not having your car to get about you will have your answer. I know I would miss my car and driving. Hope everything goes as smoothly as my pacemaker procedure went. It was easier than going to the dentist and I was awake. Brian
I am sort of reconciled to the driving although the experience will be another matter. I love cooking and will miss that but I might get a worktop unit as a temporary solution!
Well it was in the house from new and it's very good. Going back to conventional electric hob would be a solution but a backward step so to speak. I'm in hospital now and the solution to my LVT is an ICD implant.
I'd definitely give up cooking as I love driving and it would literally make me so upset if i had to give up. Plus I could do with losing a few pounds so it's a win win . Great question though!
Hi Jeremiah, are we treading a similar path? That's a great answer and had crossed my mind as a solution for now not least because my house is up for sale and I'm not sure whether there is the option of gas below the unit. It was that or get the BBQ out! I hope you're keeping well. I was running in a Parkrun when this happened. I was and am so grateful for all the support we received and I hopefully supported to in the Couch to 5k forum. If I'm allowed to run after this, still in doubt, I might have to re do C25K. My range at the moment is officially 2m from my monitor and 5m to the loo! I have been off for the occasional wander and managed to complete in stages two not parkrun totals in the three weeks I've been here so far. Hanging in to my humour, but only just, hence my post. Just hope it doesn't offend. Good luck to you sir.
You may find there is an appropriate rehab type course locally that you could do to get yourself fit again but for now concentrate on getting yourself well and on keeping looking on the bright side of life🎶….
For me not driving would be a real disadvantage and make getting around very difficult - eventhough I live in a major town there is only one bus unless I walk up very steep and long hill.Good luck.
I would like to give both up but as I have to choose it would be driving as my shoulder damage don’t allow me to anymore anyway. Cooking is difficult but I can sit when I need to and rest.
I’d rather not cook but I have an ICD and still use my induction hob 😆
Top tip re driving - make sure you surrender your driving license to DVLA rather than informing them and having it revoked. The latter takes FOREVER to process. Am I right in thinking bc you haven’t had the need for a defib yet, that your driving limit will be shorter? I had to see to see my 6 months through because mine came AFTER a cardiac arrest.
Good luck with ICD - I couldn’t be without mine for peace of mind….
Oh for me driving definitely. I can always get food delivered but I absolutely hate being dependent on anyone else for getting abut; can't afford taxis and I get sick on buses. I've never in my life eaten a takeaway so it could be interesting trying different things. Does anyone deliver fish and chips?
BY the way you can but quite cheaply little normal hobs that sit on your worktop. Try Lakeland.
I don't think my heart would let me have fish and chips LOL. I was joking sadly. I'm awful on buses; can't even go half a mile; not brilliant in cars either unless I'm driving and heaven help me if I try to read on a train. Worst vehicle ever was when a colleague turned up at work in a Roll's Royce and offered everyone a ride in it. I didn't even get to the end of the street before I had to get out. Yet I've been literally last person at the bar on North Sea Ferries in a force 10.
yes I’ve got a CRT-D device fitted last August we changed our induction hob straight away as I prefer my cooking to the alternative lol and I drive a bit when I have to but trying to walk everywhere when possible so I’m getting plenty of exercise. X
We are currently marketing our house in response to a need to reorganise so reluctant to change the hob. But the suggestions elsewhere for the studio type worktop hob may be a workaround. I'm looking forward to the walking.
not cooking. I’ve got a DVLA sight test tomorrow and stand a very real chance of losing my driving licence. I’m disabled and can’t use public transport so if I lose my license it’s going to be a nightmare. My 19 year old son is also disabled and is reliant on my driving too.
It’s very simple. You need to hire a chauffeur who can cook for you! Seriously, I had an ICD fitted four years ago following a massive heart attack. Thanks to this amazing little device and the cocktail of pills I take every day, I am able to lead a near normal life. Hopefully, you will also benefit greatly from the wonders of modern medicine. Good luck!
hi, I do look for the positives which is why I posed the question in that way. I knew it would generate lots of uplifting experiences, just like yours, at a point for a variety of reasons was feeling a bit shitty! I'm not one for using sharp elbows I know the pressures in the health system right now, but I draw the line at dodgy decision making... I'm sure I'll get through this and reading the responses this morning has been on point as they say!
Well I will go for humour every time. Whats to be gained by misery all day every day, its just not sustainable and not healthy either. A bit of humour takes us humans to another level and I thrive on it.
Good for you for trying to see the fun in our tough medical situations, it stands us all in good stead. So to answer your question I would choose to give up cooking thats easy as I leave that to my husband anway and to have an excuse not to go near the hob would take away any sense of guilt, if I had any lol.
Giving up driving now thats not something I would relish at all. I love the freedom driving brings. Clearly if health issues dictate the necessity to give it up temporarily or permanently then so be it. The prospect of causing an accident and harming self and or others is a price too high to contemplate.
Hope you get sorted very soon and life takes a turn for the better and keep that vital sense of humour please. Best wishes.
Sure will, thanks for the reply. As patients we have to trust the medics and take responsible decisions. I don't want it to happen, it's a major switch in lifestyle, in rural environments travel is a big part of planning. So not driving is what it is. I think humour enables us to access some serious stuff and this thread has been a fantastic uplift for me today, I am so grateful for the response.
Good Evening, I am new to this forum and haven’t seen a post generate so much response ! I for one appreciate your humour in times of not so brilliant health and investigation. Am recovering from having a pacemaker fitted and because I am still also under supervision of neurology I can’t drive and so am sooooo looking forward to driving when I get the all clear. So I’d say I would give up cooking !
Collaborative cooking wow. You know the slightly manic TV chefs on the verge of something tragic and insecure, my cooking is a bit like that. I haven't shared the space very well. I'll suggest it but I think I'll be turned down and not very politely!!!!
Haha, it's how I have attempted to tame my husband's, as you say manic tragedy when he cooks all by himself.Every pot, pan and cooking implement is used. The kitchen looks like someone has had a food fight 😳
It's a shame that the manufacturers haven't been able to develop an induction hob compatible ICD.
Thanks for introducing the humour, Chinkoflight - please ignore those offended who are few. I had a stroke following my open heart surgery, which damaged my sight, so I no longer am able to drive. So many of us need a touch of humour to get through our difficulties and yours is welcome. There was another poster (Transporter?) who brought light relief, too, but was drummed out for the heinous crime. We come here for sharing what we have and are going through which includes some pretty rough stuff. I say thank goodness for those such as yourself who have the generosity to add a a little humour to help.
Thank you. I'm not for drumming any one out, except maybe some people who have hidden agendas that might include promoting stuff. I think there is real danger in that, because BigMel has expressed a point of view (now) that others may think or believe is a valid point of view, it would not have been expressed for fear of being criticised. I was just piqued because I tried to respond and allow for better expression, instead there was some doubling down, which then made the sentiment pretty clear! I think the position is very clear on BigMels part now and that's okay as far as I'm concerned. He should maybe have just s aid that from the outset.
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surgery question for anyone who has had mini-sternotomy/ open heart surgery. 
how would you explain a heart attack?
Risk of ICDs and living with an ICD
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2 weeks post icd op - new symptoms?! 
