Well as promised an update and outcome of sorts. Day 46 in my local hospital CCU, up at 5.00am for an early prep for an op. I was first admitted on January 27th following a syncope (collapse) while running at myocal Parkrun. 3 days later a ventricular tachycardia was picked up on my implanted loop recorder (ILR)
My stay demonstrated the extreme pressure in the system so it was challenging to get specialist investigations, cardiac MRI and cardiac Sarcoidosis PET scan in a timely way adding to my time in hospital.
Tensions within the hospital to treat the symptoms and not chase the diagnosis was real.
Whatever the diagnosis there was always going to be an absolute need to manage and protect against the dangerous left ventricular tachycardia associated with an uncertain non-ischaemic scarring on the LV.
The pressure to treat and discharge won the day also wearing me down to, although I find it hard to not have a diagnosis as it leaves uncertainty for the future.
Today I had the latest version of Boston Scientific cardioverter and defibrillator fitted. Pacing has been set at low end HR 60 to control my longstanding benign bradycardia. This is important as bisoprolol is prescribed to knock off high end HR but this was reducing my resting HR to low 30's. At the top end it is set at 185 to enable me to exercise and not be setting off the device. My LVT was 23 seconds at 280bpm!
I have had a lot of time to read and review. I now am of the view that the myocardial infarction was most likely COVID related. The BHF have covered this in recent articles.
There remains a massive amount of adjustments moving forward. Thanks for the support expressed in my post from hospital.
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Chinkoflight
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Hope all goes well, you describe very well the tensions currently within the system but sounds as though at least you have some protection with your new implant. Take care and speedy recovery.
good grief-I do remember you posting in January, I am glad they have treated you even though you don’t have all the answers. All the best moving forward …
Wishing you all the very best for the future. Keep us updated please. How frustrating not to have a full definitive diagnosis leaving you unsure going forward. Hoping for better things for you and trust you cope without being emotionally scarred by your lack of clarity. Best wishes ongoing.
Thanks Meadfoot. Wanting a diagnosis is a sort of modern day expectation. But I suppose it's probably a tad churlish because I have a treatment and mitigation. Whereas some people have a diagnosis but no treatment on offer. There is the uncertainty going forward, that has come a bit sooner in my life plan than I expected, that does for planning! So today I am day 3 and I went for an hour's walk and the destiny was a view of rolling Northamptonshire country side. I'm happy with that.😉
I understand that lack of clear diagnosis brings stressors and hope you find ways to cope. I am a great fan of meditation but absolutely hopeless at it. Great you have what sounds like an all singing all dancing device to moderate your hearts response. Wishing you well
Thanks for the support. The device has done nothing for my singing but it's making me dance all right. Bradycardia eliminated,nothing less than 60bpm 😆
I hope after your long stay in hospital that you can go home and start getting back to normal in your familiar surroundings. Sometimes we have to endure things that we wish weren't the case but hopefully what you have had done will bring positive outcomes for you. Try not to dwell too much on what has happened but look to each day being a new one....out of hospital, being able to do what you choose. Sorry to hear about your experience but hopefully the end result will see you sorted. All the best and take care.
Good advice, there is a lot to potentially dwell on about the hospital experience. It feels like I should be shouting to hopefully improve things. But I also have to get better so I don't go back! To find a way to live with the reality of the new normal. The starting point is to realise I have come out the right side of the odds! A sort of truth and reconciliation. Tomorrow I volunteer at my local Parkrun where this adventure started 7 weeks ago! Hopefully I will be standing so that the finishers can see me rather than run past me in a heap at the 1.4km mark!😁
Sounds like you are a trouper and you are right....getting used to a new and different normal. That's exactly what it is. Long may you continue to improve. Xx
Nice to hear that you are now out of hospital after an incredibly long admission. Your experience reminds us all of the imense pressure upon bed space within the NHS. Hopefully you are on a sound trajectory back to good health despite the lack of diagnostic clarity.Regards
Without wishing to sound too negative I did feel after my stroke there were things I could do to improve my health and actively reduce the risk of future events. And for two years I was hubristicly confident I had achieved this. But now having a LV myocardial scar cannot be reversed and the consequential risk of a fatal LVT remains. I have to hope the IV-ICD does it's job and survival rates are good and better than most cancers. But other than keeping co-morbidities at bay with a reduced exercise potential, I'm not clear I can improve my health. One consultant was particularly negative indicating a decade + of reduced life expectancy compared with both my parents. It wasn't good to hear!
It is certainly no fun getting old. Chin up. Reading your previous posts I detect that you have a fair degree of self agency and resilience. This is of course both a valuable asset and to your credit.Regards.
Lots going on - poor you, eh? But you sound well looked after, medically. Sustained LVT must always be a worrying thing to have happen. We soldier on! Oh to be young again is my mantra!!
Glad to hear you were fitted with a defibrilator. Tomorow I will celebrate my 3 year anniversary of my vtach cardiac arrest. What worked for me might not work for you, but you seem to be the athletic type like myself. I have learned to change my lifestyle 1/ diet rich in magnesium and potassium, no processed food, no alcohol2/ daily walking at least 8000 steps and swimming almost daily (make sure the pool is well grounded to not get shocked)
3/ to keep working on improving my slow nasal breathing
Hi Thierry, while in hospital I read Tim Spector's latest book. I've not been a diet fad, thinking by and large I ate a fairly well balanced diet. However, this book, being completely grounded in the available research, has opened my eyes to the negatives around the the ultra high processed food industries and secondly the importance of our gut biome for our immune system. So there will be some changes. I'm back out walking and have done my 8000+ steps. I'm struggling a bit with even the very low dose bisoprolol especially in the morning which had been my preferred start to the day with exercise. It's busy busy with sorting out lifestyle changes. My driving licence has been surrendered, car insurance cancelled, and car up for sale! Oh and a small matter of acquiring a senior rail pass!🤣 That I'm sure will become a whole new joyful experience.Tomorrow I revisit the scene of the start of this adventure, my local Parkrun, but I hasten to add I'm on the finishing funnel only! But I may venture round to where X marks the spot!
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Bisoprosol landed me in hospital with low heart rate
My AF journey takes a turn for the worse!
Contemplating ablate and pace
IN AFIB FOR MORE THAN 9 HOURS. For 1st time.
