No diagnosis - still in hospital on my 34 th day!

[Chinkoflight]

Hi all, I was asked to update after I scattered a few posts earlier in the month seeking information following a collapse (syncope) while running in my local Parkrun. That was back on January 27th.I bigged up my ILR as it later showed I had had a left ventricular tachycardia lasting for 23 seconds. I asked questions about driving, implanted pacing devices, and got great support and feedback. It really helped through those early days.

Well I'm still in. Early rush to diagnosis , perhaps with extreme hospital pressures was for an ischaemic event(90% of similar events) and a decision to implant an ICD ( defibrillator). However,I was symptomless , and the echocardiogram came back heart structures and EF okay. So on to an angiogram with stents ready, but all the pipes were clear too, so pointing to a possible non ischaemic event.

Being a general hospital although it has an MRI and a PET scan it doesn't have the expertise to do cardio investigations. So to Oxford hospital to have the MRI which pointed more conclusively to the need to investigate either the possibility of a rare embolism or a non ischaemic event specifically Sarcoidosis. Requiring then another tier of investigation the PET scan was then organised in Oxford at the other hospital. Booking availability across regions is a challenge with demand so high. Hence all the added days. The turn round for the latest scan report is probably not less than 8 days.

I am of course learning so much, not least the tension between treatment and diagnosis. For almost all outcomes I will have a protective pacer/shocking device fitted. But if the sarcoid is active I will need treatment too. I can't be discharged until these possibilities have been considered. There's a bit of me that says can I come back as a day patient, the EP's would just like to fit a box and send me on my way and the pipes and pump man wants the full diagnosis and stresses the gravity of the risks for me.

Oh and this early panicky questions about driving, and can I use my induction hob, in the scheme of things..........

So tomorrow I enter my third month in hospital with no end date.

I do have a mass of information now about heart function , tachycardia, scarring etc so please feel free to ask questions , I've got all day to answer....

Looking for the #chinkoflight

[jeanjeannie50]

My goodness - you poor thing all that time in hospital!!! Have you become used to life in there now? I really hope that all goes well for you, please let us know when you get your PET scan results.

Will be thinking of you and awaiting news.

Jean

[Chinkoflight in reply to jeanjeannie50]

Thanks Jean, in terms of good daily health I can't think of a worse place to be other than anywhere that is incarceration. It's not designed for long stays, and had I a mobility problem , as some do, it's a disaster. I go for regular short walks off ward and off-line. It took a while for the team to accept ' the risk'. I understand their position but to sit or lay here all day doing nothing, with cardiovascular problems is hardly the right thing to do!

[jeanjeannie50 in reply to Chinkoflight]

I'm sure you're right with what you're doing, but it would be better if someone could walk with you. I'm really surprised that they let you go out alone and although I understand why you need to do this to keep sane, don't think it's safe until you've had the results of all the tests.

Are there other patients you can chat to in the ward?

When I was last in hospital with covid and pneumonia, me and the lady in the next bed laughed so much, I think the staff must have looked at me and thought she sounds well enough to go home, which is what I did after 4 days. the other lady unfortunately was halfway through chemotherapy when she caught covid. I was ill for a couple of months, it's still possible to laugh when you're unwell.

Take care and let us know how you progress.

Jean

[BobD Volunteer]

I do sympathise. I had to sit in hospital waiting for a bed in a different one for an angiogram a few years ago and feeling quite fit. The consultant stated it would be cavalier of them to send me home without finding the reasons for my arrest. On my calculations sitting blocking a bed cost NHS at least £5000 a week ! The problem is that if you leave you go to the back of the queue and start again waiting for any treatment.

[Chinkoflight in reply to BobD]

Thanks Bob. I think you could probably double that for this bed. The nursing/care team are well connected and communicate well across the shifts. The breakdown in processes is primarily at Consultant level with an enormous Locum cover use. I am sure something has gone fundamentally wrong in the contracting process with the use of agencies. I could say more to back this up but not for this forum.

[Popepaul]

It's a long time to be an inpatient for investigations. You sound as though you are in good spirits given the circumstances. Hopefully you will make a good recovery.

[meadfoot]

Bless you what a hassle you are having. My thoughts would be to stay put where you are safe in any sudden event occuring. If you sign out of hospital you may well be bottom of the list, out of sight out of mind scenerio.

At least one of your medics isnt being cavalier with your health and wants to get to the bottom of it. Dig in as frustrating as it is, continue to learn all you can, forewarned is forearmed. There will be an end to all of this, nothing goes on forever even though it feels like it will.

You sound in good spirits so please keep your chin up, get to the bottom of all of this with a treatment plan and get back to normal life again. It will happen. The driving aspect will come to fruition with time. Keep us informed please. Very best wishes. We will be thinking of you. Sending good vibes.

[Chinkoflight in reply to meadfoot]

Thank you. Great advice as ever.

[Glenlyon]

After reading I do wish I had a good question to ask, if only to keep you curious and learning. I’m afraid I have none but am so impressed by your commitment and that of the doctor to get to the bottom of things before embarking on a definitive treatment, despite the other opinions at play. It really does sound like you’ve landed in the right place. All the technology in the world is meaningless without a good doctor or two to lend their minds to the data.

So here’s a story to pass some time ( if you feel like it )

It has taken 7 months from beginning to end - and remains a work in progress.

I was in hospital after an undiagnosed SVT - hospital blood test showed something of concern and other tests were necessary, I was feeling fine so went home after a few days against their wishes but with the agreement I would do the tests an outpatient. It took ages annd cost anlot of money doing it all as an outpatient! Like you there were no potential blockages- scans showed a slightly fatty liver and a toxic thyroid with no cancer …. blood tests all normal by then. So no treatment required.

A few days after getting the last of my reassuring results I had a second episode that took me to an ER where I was treated and diagnosed with an SVT possiblely an AVNRT and sent home on medication the same night … the medication was problematic and had to be stopped … that took months …saw an EP privately who said “I can fix that” and explained the procedure … I was and still am wanting to understand better why I experience these and other presyncope episodes before embarking on an abalation.

I’ve since had a blood test (glucose challenge with insulin) and learned I have very normal glucose (both fasting and challenged; and normal fasting insulin) but ….

The further insulin challenge tests (one hour and two hours after the glucose drink) showed levels of insulin became extremely high - and the second three times higher than high normal.

Since then I spoke again to the EP who now agrees that getting insulin down is a sold plan before considering an abalation.

You are far deeper into your enquiry already by virtue of hanging in there! And you’re keeping a clear head which is itself a worthy achievement! I’m wishing you smooth sailing , keep us posted

Wishing you a smooth journey.

[Chinkoflight in reply to Glenlyon]

Thanks. It's certainly a journey. Symptoms or lack of them is a real dilemma. I feel for the many people who post about their debilitating symptoms eg palpitations, racing hearts, pounding etc but sometimes I have to tell myself off for thinking lucky them! I wish I had a pound for every time I have been asked here whether I had chest pains and the look of incredulity when I say never! On March 13th 2022 my journey started with a severe stroke, eventually signed off as Cryptogenic. Since then they have found Afib - paroxysmal; inflamed gallbladder with sever e gallstones - symptomless; and now syncope with dangerous LVT - idiopathic. I think that was the point I could not açcept a fundamental lack of inquiry or curiosity. I had a bit of a meltdown and knew the probabilities of having a non-ischaemic cause was more likely than a symptomless Idiopathic ischaemic event. And the subsequent tests have shown that to be right. The tensions clearly surfaced amongst the consultants. The pressure to treat and move on is very real but must be compromising decisions. And we have just had Martha's Law passed.

[Ppiman]

As Jean says, my goodness. A chink of light indeed. I hope you are in a quiet room able to sleep at night. My experience of hospitals is of a single occasion and it was awful thanks to my being in a holding ward with two crazy noisy people and nurses who didn't seem concerned that no one could sleep.

Steve

[Chinkoflight in reply to Ppiman]

I'm in the CCU, a four bay room geared up for a crash team response by the nurses station. I have seen and heard it all. The best and worst outcomes. I do know why I am here. I don't need to say more. It's a constantly changing experience which I guess has enabled me to keep my faculties engaged.

[Ppiman in reply to Chinkoflight]

I do hope it soon is resolved. How are you feeling in yourself? It must be tough on your family, too.

Steve

[Chinkoflight in reply to Ppiman]

Hi Steve, it's tough for my wife that's for sure. When she was in hospital for 8 days I know what an empty house felt like. I'm quite resilient and the staff help. This is a fast moving environment so my long stay has become a bit of a peg for the nursing team!

[Cat715]

Sorry to hear that you are in hospital and have been there for months. Sounds like you are going through the mill with all the tests. Your Doctors sound like they are always weighing up what the best treatments are. Hope you manage to get sorted and go home soon.

[Chinkoflight]

Thanks, the tests are being done but it's the wait time that is extending the stay. I came in at the end of January and here I am in March. Today is the last day of my fifth week to be accurate although it spans three months- dramatic effect and all that 😁

[Qualipop]

AFraid I can't help except to sympathise. I was in last year for just 4 days with a very odd arrhythmia and it drove me crazy. I'm one of the disabled but got someone to bring in my little mobility scooter ( I can't wheel a wheelchair) and I too, often unhooked myself from the monitor and went down to the shops or out side. I can't imagine being in as long as you. 7 days was m my longest stay about 30 years ago after surgery. At least I could walk then. I wonder if you could get PALS involved to get those consultants all together to make a decision?

[Chinkoflight in reply to Qualipop]

Have done that. A request by them has so far been ignored. They don't seem to nominate a lead consultant. They have a strange shift. Around for 3 days then not seen for two weeks. Most are locums. It is challenging.

[Qualipop in reply to Chinkoflight]

There must surely be a senior consultant in charge of all the locums. PALS should go to hospital management then. Keeping you there so long without anyone taking responsibility is just ridiculous. Is there another hospital with better qualifications and experience they could transfer you to? Local hospitals here can only do so much but we have one a bit further away as the main cardiac hospital.

[Chinkoflight in reply to Qualipop]

The trust has two hospitals, the heart admissions hospital has a critical incident declared, IE no admissions. Specialist scans etc can be carried out there. It's where in normal capacity situations I would have been. I have suggested for a range of reasons I'm not confident with this hospital for the response in the first two weeks. I am getting appropriate response now however they system isn't connected as I said. I suppose this is why some say it's broken. I don't think it's broken but it does lack leadership at the highest skill set level IE consultants. This is political of course and just my reflection, but I think other professionals here think that too. I have to stick it out but take control of my situation, not in the comfort zone of some but not all the doctors. I do see the dilemma for doctors. They are the gatekeepers. There is so much difference between diagnosing a broken bone and a broken heart.

[Qualipop in reply to Chinkoflight]

What an awful situation. I believe you do have a right to be sent out of area although that could be difficult.

[Sustainedvtach270]

So sorry to hear about your wait. As I already mentioned, I had similar syncope episodes, but my heart was beating too fast, rapid afib, sustained vtach, vfib and cardiac arrest. All my tests from the general cardiology or "plumbing" cardiology like a catscan, echo were successful. It is only when I had an MRI of the heart, which is a very new technology here in the US, that they found extensive scartissues or fibrosis on my heart. I hope they sort out rapidly what is going on with you.Thierry

[Chinkoflight in reply to Sustainedvtach270]

Hi Thierry, yes the MRI I have finally seen the report today, revealed no ischaemic causes, other than the remote possibility of an embolism within the heart itself causing the scarring on the left ventricle or a non ischaemic cause suggesting further investigation for Sarcoidosis. The PET scan may support this diagnosis. Obviously detection of a sarcoid is very important because it is treated as well as having an ICD. But the service is a little chaotic here and although the scan is done the report is likely to be delayed by 8 days or more. Obviously time can be critical, not least for the effectiveness of scans to support a diagnosis, but these are things beyond the patients control. It's a weakness of a national health service. Hope you're managing okay.