UKC

I decided to start a post about my last 14 months. 

At 2am on the 14th of March 2021 I woke up with a deep ache in moth of my arms, not pain just an ache. I sat for a while, shook them out as though I was pumped on a climb and went back to bed. The following day there was a mild ache and I was back at work on the Monday as normal. 

I thought no more of it but Sara insisted I go to the doctors, I got an appointment the following Thursday and explained my symptoms. My blood pressure was a bit high but not too bad. My doc said I should be okay but as a precaution could they do an ECG. About a week later I'm back for the ECG and 1 spike was abnormal. 

They then sent me for a cardiac ultrasound, this was about 5 or 6 weeks later and apparently my heart wasn't working properly. 

I suddenly have a consultant who books me in for a stress test MRI, this is done in late June. 

1 week later I'm called by the research department of Leeds hospital, would I consent to a research MRI, they have a new advanced scanner and because I had a test the week before it would be a good opportunity to compare results, a week later that's done and the doc there told me I had definitely had a heart attack and part of my heart is damaged. This was the 1st week in July, in November I hear from my consultant for the first time since my MRI to tell me the same thing. 

The consultant confirmed the damage etc but said I was fine and my blood was pumping just fine and the fact I was constantly running out of steam with any exertion was nothing to do with my heart and he was happy to sign me off until I mentioned that my dad and grandad both died of sudden heart at age 60. Suddenly we are going to do an angiogram just in case. 

Today I finally had that 1 day short of 14 months on. 

They found an artery almost totally blocked and the consultant said he would have to do a complete rebuild on it and put 2 stents in it. The stents are now done and I'm back home with a very sore wrist. They told me I should now be sorted and get my energy back in a few days. 

I'm posting this as a cautionary tale, had I rung 999 in the middle of the night all this would have happened within 48 hours but because I didn't it took 14 months, also my arm ache isn't indicated for a heart attack and my doctor has told me she thought giving me the ECG based on my symptoms was very OTT, she has also discussed it with her colleagues and they are of the same opinion.

Be aware folks, don't be a bloke and ignore things, if in doubt get checked out, it might just save your life. 

Interesting. If I was presented with a middle aged male waking in the night with any kind of unexplained shoulder/arm/back/neck pain I would absolutely get my paramedic to do an EKG. Local protocols/culture I suppose.

Glad you are well!

The same doctor that sent you for a precautionary ECG is now saying that to do so was over the top?

Definitely, but what do you do when your doc decides you're not ill?

Thanks for posting. I know I avoid the doctors like the plague and I probably shouldn’t.  I’m glad you’ve had a good progression with them.

Given some of your past posts on piercing, I hope you remembered to remove them all before the MRI.  If not, please feel free to share the humorous anecdotes…

I hope you're doing well. It must have been a worrying few months. No doubt, it took some courage to post.

There is a tendency amongst us blokes to trivialise health issues. When younger, unhealthy life stylers are a badge of honour, almost. Luckily I've proved to be immortal, so far, so I don't need to worry. But asking for help, in may aspects can seem unmanly. Which is why we're likely to die young from preventable illness or by suicide.

I wish you all the best on your recovery.

I wonder if the consultant has learnt something.

I am always staggered at how slow they are to use diagnostic testing & imaging. And to repeat it after treatment. In my field of engineering, we don't guess (educated or otherwise) what is wrong, and try something to fix it without checking we've fixed it. We instrument the problem, find out what is wrong, fix it, and then use the instrumentation to check we have fixed the problem.

Sound wisdom.  Amazing how often people just go to what they intuitively think is the problem, “fix” it and then get confused when nothing much changes.  The most powerful way I’ve found of illustrating intuition vs instrumentation is in asking people why they think a computer program they wrote is slow, then getting them to run it through a profiler.  Blunt and effective.  But as a teaching tool, it only works on people writing programs, not on people running a process lab or doing medical diagnostics etc.

Shouldn't be a problem if they're 316 Stainless or Titanium, certainly wasn't for me.

To the OP well done on getting a diagnosis, I've been through several tests for an issue with no conclusion. 

Hope your OK and thanks for posting. Us men shy away from chatting about health stuff, so you’re a part of breaking this mould. 

IIRC, you chatted about similar/ same on here a while back, and folk on here said ‘get it sorted’. Might be wrong, but I know that you know this forum is a great place for nudging in the right direction. 

She thought it was at the time but but apparently she and her colleagues learned a lot from it. 

In my case I played the family history card and I'm damn glad I did. The only other option is a second opinion but can you do that with the NHS? 

That's me 100%,  typically I give things at least a year to clear up before going to the doctors. I only went this time to keep Sara quiet but I'm damn glad I did. 

I hope they get to the bottom of things for you. 

This forum and most of the people who use it are truly excellent. It was after mentioning it months ago that I started to push. 

Thank you all for the help, advise and support on here, once again the UKC Community have been proven to be good eggs. 

One of the issues is that diagnostic testing capacity is often overwhelmed if the NHS did routine scans to make sure something had gone away, it would not be feasible to scan the ones who aren't yet diagnosed/fixed in a reasonable timeframe. 

b

I am surprised that your family history was not picked up early. If you ever  go one of those over  55 well man visits at the drs it’s one of the issues they focus on. Has that type of service been offered to you by your local Dr. ?
 

Your right about us blokes not going to the Drs .it’s something my wife has got me to change as a habit over the last few years.  
 

Hope everything goes smoothly for you. M from now on. Take care of yourself. 

I'm only 49 (50 in July). I am surprised though. I told the doc when I first went in and told the consultant when I first spoke to him in May.

I have never actually seen my consultant though, I have had about 4 phone calls,  the longest being about 5 minutes.

From the Mri in June I didn't hear from him until November about the results and that was a couple of weeks after I started chasing having mentioned it in here.

Maybe he is very busy, maybe he isn't very good, maybe it's a combination of both. 

Glad you are getting this sorted! My own little story if anyone's interested...

About 3 years ago, my right arm reddened and swelled up. At first I thought it was an allergic reaction to an insect bite or something like that. I ignored it for a couple of days. No pain, just pins and needles at times. Eventually, my wife persuaded me to go to the doctor. Luckily for me they saw me a couple of days later. She sent me straight to the hospital - do not pass "Go" do not collect £200. She even phoned me later to check if gone.

Despite the apparent urgency I spent several hours sitting in a waiting room in between diagnostic tests. All clear, bloods good, clot test negative (more on this later), x-ray nothing. Finally a CT was ordered. Now, here's the eye opener for me (not a frequent visitor to hospitals)...I'm the "emergency" so I get to jump the queue. I (who would have looked completely fine) walk past queues going into the corridors of bed after bed of old/infirm people waiting for their scan. It was heartbreaking. They would have been there for hours. It's such a vivid memory and it still makes me sad to think of it.

Anyway, CT scan shows a blood clot in my shoulder. The consultant is amazed and said that whilst they knew it was possible they'd never in 30 years had a case where the clot blood test (d-dimer) was negative but there was a clot. Injection of clot buster, prescription for thinners, take them for 6 months. Got to do more scans for cancer (as the clot is an indicator).

Cue 3 weeks of sleepless nights, waking up sweating (night sweats also a sign of cancer which didn't help! A vicious circle of anxiety) waiting for the results. Finally, all clear. Consultant not interested in my theory of why I had the clot. NHS says goodbye.

6 months later, I'm about to stop taking the thinners but arm is still symptomatic, so I go back to the doc. Shrugging ensues. I have PMI through work so ask to be referred. New private consultant looks through all my research and agrees with my theory and orders the right kinds of scans. Also asks to use my case for his students as it's so interesting and quite rare. Scans show I could be right. Get referred to an expert vascular surgeon. He agrees and also says it's not that rare. They discuss it at his regular meeting of experts in London. I had probably got an exercise-induced thrombosis.

Thanks to the slowness of diagnosis and the pandemic, this all took about 18 months to get to this point. My main artery (or is it vein?) from arm back to heart is completely blocked by a clot which is too large to be surgically dealt with. My other veins have enlarged to cope (the human body is amazing) so my arm is almost the same as the other by this point. Surgeon says my anatomy is such that wide push ups and so on will repeatedly crush the vein so I should avoid that sort of exercise (no more kickboxing!) so it doesn't happen on the other side (can't happen again on the original side). Agrees safe to come off the thinners and I can resume my life as a pretty much normal member of the population. Just avoid wide grip push ups!

Lessons: listen to your partner/people around you, do your own research, be persistent. GP is not usually an expert in anything. Being old sucks massively (not me, the other patients at the hospital I saw).

Luck: I had private medical through work so it was easier to get my GP to refer me.

T bh I think that is poor my dad and grandad have same heart attack history as yours. I am always being quizzed about it at Drs etc. 

If you think this is bad (and it is) wait until you hear how they treat people with autoimmune diseases…

Anyhow good luck to Dax and hope he continues to improve.

I'm sure there's a solution to that...

Sounds like a lucky escape and I certainly agree with your conclusion.

Listen to her and don't be a bloke

I agree, from what I have experienced first hand and third parts through Sara and mates there are good and bad doctors. I think mine is in the middle. 

Lots more radiologists, lots more radiographers, lots more MRI, CT, PET, US scanners, lots more buildings.

Just need to stump up a wee bit of cash

Indeed. But the savings in terms of repeat appointments when the problem doesn't get correctly diagnosed, costs of resulting nugatory treatments, cost of quality of life, and lost years of life of patients ought to compensate.

Consultation appointments could be practically halved, if we didn't have to see a consultant to get approval to use diagnostics that will allow the consultant to diagnose the problem.

I think more complex than that - there will be savings and better patient outcomes, but also times when unnecessary testing leads to unneeded treatments or investigations, and associated patient anxiety. 

Also some tests are not consequence free for patients - CT being an example where significant patient harm can ensue if excessive trips are made through the donut of death.

I think some form of MD gate keeping is essential really. 

Also that most tests aren't completely risk-free for the patient. So is it ethical to continually test to prove something that you are fairly certain is true. As an example, we could screen for lung cancers with a chest Xray but we might cause more cancer than we detect and cure. there is always a fine balance with diagnostic tests

Sounds like a worrying time and I'm glad you were persistent about advocating for your own health. Best of luck for your recovery!

I lost my dad last year to bowel cancer at the age of 63. He had symptoms for ages before he got them checked out because he assumed it was something else and didn't want to be a bother. I wish he'd listened to your advice.

Very sorry to hear that, its possible that he was also a bit embarrassed about going to the doctor. We men folk often get a bit twitchy when it comes to our bum and toilet habits. In fact our privates in general.

I found a lump on one of my nuts when I was 17, I was 19 going on 20 before I got it checked. I left it a year ro clear up, it didn't it just got bigger. I left it another year because I was convinced I had left it too long and they would amputate them and I was enjoying using them.

When I finally went it was just a cyst. 

Yeah, I wouldn't be surprised if that also played a part. No-one wants to be poked in their private places!

I wonder if women are less embarrassed about it because we're accustomed to a speculum up the chuff every 3 years...? I'm certainly less bothered by a simple smear test after having a loop biopsy that involved stirrups, a flexible video camera, 2 elderly asian male gynecologists and 2 nurses all in a very small room in St James's. They did let me watch the screen while they anaethetised, excised a chunk from and cauterised my cervix though, which was absolutely fascinating!!

That's just plain unforgiveable. Don't make excuses for him. You could have died.

Shurely a good clap once a week is enough?

b

I wasn't suggesting patients walk in to MRI/CT scanning off their own bat.

We have a system of primary care triage via GP surgeries. GPs are the gatekeepers to specialist/consultant treatment. I assume that would remain, and not simply be 'buck passing'. currently, we have GP to consultant, consultant to diagnostics, back to consultant, to treatment. In many cases, we ought to be able to eliminate the first consultant appointment, so they are provided with diagnostics at first consultation. Provided the GP has done a good job with triage, the diagnostics ought not to be nugatory. Of course, some will be.

To some extent, it seems the NHS process is geared up to actively discourage patients seeking or following up treatment, and to limit access to diagnostics. If this is because diagnostic facilities are limited, then we need to address that problem, not set up a system that actively discourages or delays treatment. In many cases, time is of the essence, and delays in diagnostics, due to this discouragement policy is detrimental to patient outcomes.

Could have but didn't. I find it better for my mental health to leave negative things in the past. 

Good system - requires the GP to know what diagnostic tests to run for a specific symptom set, and likely they won’t be able to identify the  ideal test for any given patient so a wide range of tests must be ordered to give the specialist/consultant the required dataset. 
 

so a really big increase in required testing capacity, and many unnecessary tests run - which are not consequence free. I’m sure it would be better for some patients, but not for all.

In terms of barriers to testing - the ex NHS radiographers I work with all say the first thing they are taught is to say ‘no’ - they are obviously joking a bit, but there is a real drive to test for a clear reason rather than just going fishing.

Seems to have worked a treat

Risks from testing can be direct (in the case of angiograms, complications include stroke, heart attack, arterial damage with aneurysm formation, kidney damage from contrast, allergic reactions, heart rhythm disturbance etc) or indirect (false reassurance, false positive tests for things that aren't biologically dangerous, etc). Complication rates aren't high thankfully (about 1 in 1000 will die from the angiogram). The non invasive tests like cardiac MRI aren't as risky but also aren't as good at identifying biologically significant disease (and certainly can't replace therapeutic interventions like angioplasty/stent). A lot of the time these are complex decisions for a cardiologist to make, and realistically it's improbable that GP access to high complexity specialist testing will get well targeted testing.  I absolutely agree that some low risk tests like echo should be open access with certain qualifiers (particularly around frequency of testing and addressing outliers who test everyone passing, or absolutely no-one). 

The trouble is most healthcare systems are just firefighting and lurching from one crisis to the next. All the stuff that's financially viable goes to the private sector. Everything difficult/dangerous/complex/expensive goes to the underfunded public sector. As medicine becomes more defensive (see comments about "unforgiveable: and "you could have died" which then inexorably lead to "I would sue...") we end up testing more and more and finding less and less, but with a few more deaths or strokes that would not have otherwise have occurred....

We are a bit more honest about these things in NZ. Rationing of healthcare is discussed. I have a triage category which essentially says "yes, this patient should be investigated but we don't have the capacity so we won't". That's for the Ministry to shoulder the burden. We are trying to open up access to routine low-risk testing but the process is byzantine and not cheap in the short term with uncertainty about long term savings. But yes most systems would buckle if everyone was tested for what they need and/or bothered turning up to all their appointments. As ever, no substitute for funding and staffing the service properly. 

b

Buggers told me I was at far more risk of being run over by a bus than having complications. 

This is a problem, a few years ago visiting a friend in a Nuffield hospital I was talking to a nurse, they take NHS overspill but don't have any facilities if things go wrong, in her words we wheel the person over the road to the NHS hospital. They get to cherry pick the easy and profitable stuff. If your going to run a private hospital it should by law have all the facilities. 

As medicine becomes more defensive (see comments about "unforgiveable: and "you could have died" which then inexorably lead to "I would sue...")

Unfortunately the world we live in, its certainly not my thing to try sue someone who is just trying to do their best with limited resources. 

Glad you are going to be OK. Its often easy when going to the Doctors to accept it if they say what you want to hear, its good to hear there is nothing wrong, but my advice would be to listen to your body, if it feels wrong it very likely is, you have been in there for 48 years.

I had a funny feeling in my chest, felt odd, was checked with ECGs, told I was fine and good to go, and promptly had a Cardiac Arrest.

Obviously you do not want to be a Hypochondriac or sublimate mental issues for physical issues, but listen to your body.

Good luck and get fit.

That's good to hear alas that's not what many of the great British public feel - as opposed to a nice earner that's tax free, which is the case for some. I'm not against compensation for suffering (and our family have lost a baby to the Shropshire maternity disaster so we have insight into the enormous effect that medical misadventure has on families), but I am against frivolous complaints both financial and legal - and I could give you some pretty eyewatering examples...

Typo - risk of angio is less than 1:1000 (usual risk is quoted as 0.08%), sorry about that.

Really good to hear you are on the mend 

b

That is a fascinating comment about triage in NZ and about an open culture. How do patients / politicians/ voters react?

I employed a guy who made no bones about if he was in a car crash he would be putting in a whiplash claim. Apparently everyone does it so why shouldn't he. Its the insurance that pays anyway so it doesn't matter.

He was very surprised when I told him if he did on the company insurance I would pay for a private detective even though it would cost far more than the insurance might go up by. If he was injured then fair enough but if not its fraud and I hate fraud.

In the case of medical things, mistakes happen. I'm sure I would try claim if a mistake ruined my standard of living but only if it would help my standard of living.

Apparently I'm eligible for PIP due to my long covid but an extra bit of cash isn't going to make any difference at all to how I cope with the ongoing symptoms so I won't be claiming. 

You might want to reconsider this - I find having long covid surprisingly expensive. Both in terms of things I can’t do and stuff that helps. Plus, not being able to work is costly. If the money helps you rest more or better then take it! Hope you are seeing some recovery, it’s very gruelling.

my neighbour recently died from heart failure. seems he left it too late and heart was too damaged when he seeked help (he was unvaccinated so catching covid may have been a concern)

The things I can't do money won't help. Giving me extra money isn't going to get me walking up a hill again (or more than a single flight of stairs). A bit of extra cash won't help work either. I run a small business and resting up for an indeterminate length of time is not an option. Obviously if I am incapable of working then it will have to be but I am capable it's just very hard at the moment (hoping to see an improvement after the stents in energy levels)

I have been at home since Tuesday and can't go back or drive until next Saturday and it's really stretching us, normally it wouldn't be a problem but out of 6 service engineers 1 is down with broken fingers, 1 had a hand operation, 1 is struggling with mental health issues and I'm out of the game for 2 weeks so there is only 2 lads capable to do 6 people's work. Normally I pick up the slack if people are off but that's not an option for next week. Pip won't help that and before anyone says it, I can't bring temps in. They don't exist in our game. There is a big shortage of skilled people. Fortunately our latest trainee is at the point where he can go to site on his own with phone support otherwise I would only have 1 guy in.

Next week is going to be a long week. 

That sounds very difficult and stressful- hope you manage to get through it okay. Rest seems to be the only thing that helps long covid so I sincerely hope you manage to conserve your energy as best you can. 

All the parties point out that there's not an infinite supply of money and some things won't be covered. The public, almost entirely, agree and the fighting is only over where you draw the line, not if a line should be drawn. 

This contrasts to the UK where a key NHS shibboleth is everything is covered from cradle to grave and free, which is patently (a) nonsense and (b) impossible. However there's less entitlement culture in NZ in general, and we have essentially no compensation injury - especially in medicine, where defensive medicine is not really a thing here, as there's universal no fault compensation via the ACC system. You get treatment irrespective of cause but no compo.

b 

The refreshing honesty of the Kiwis about stuff that’s screwed must be great to work with - kiwi vets in the uk occasionally need some coaching…,