GCA, Afib, heart failure

[Bluey-1]

I was concerned my Afib following a TIA Aug 23 wasn’t controlled. GP requested bloods for BNP plus CRP/ ESR which hadn’t been done since March. I have had bouts of fatigue which have up to now been linked to adrenals following a Syncathen test. The CRP came back as 15, ESR 14. Rheumatology helpline suggested I stay at 3mg for now until I have the endo appointment this week as I have no GCA symptoms.

More worryingly, the BNP test suggests I’m in chronic heart failure >2000 ng/L requires urgent investigation. My number was 5685 ng/L! ECG showed Sinus bradycardia, possible left atrial enlargement. GP really on the ball. Referred me to Cardiology, says I need a 24 hr heart monitor and echocardiogram. The shocker was when I tried to make the online appointments. 12 week wait for echocardiogram; 21 week wait for Cardiology appointment. My doc says he’s going to expedite these appointments but I have no dates yet.

It feels like I’ve been so focused on the GCA that I think this heart stuff has been bumbling away in the background, hence the increasing exhaustion and some breathlessness on exercise.

I feel overwhelmed with these conditions now, particularly in terms of what is causing what. Impending appointments - endo June, endo nursing team July, rheumatologist August…now the heart stuff. I am considering whether to see a private cardiologist but a little fearful of what could be a very large bill. Heart failure sounds like the end and I feel panicked that I should be seen sooner rather than later. Anyone else experienced these complications alongside GCA? Is anyone in a long wait with the NHS for treatment? Seems a bit harsh with cardiac problems. It feels like each year since having GCA a different health condition emerges.

[PMRpro Ambassador]

If you have a/fib it alone will raise the BNP, it isn't necessarily a sign of acute heart failure when there is a pre-existing condition, especially involving the atria.

All "heart failure" means is that your heart isn't pumping as efficiently as it should and it can almost always be managed well with medication - as well as managing the a/f being important to reduce the risk of it progressing. If you were to develop acute heart failure you would know about it, would call 999 and probably end up in the ED and be treated. It isn't always anything like as bad as it sounds!

I have had a/fib since my PMR started, 20 years, the autoimmune part of PMR probably caused it. It was discovered by accident when I was in hospital for something else about 12 years ago and was managed well with medication for 10 years when the drug stopped working. I had to wait a few months to see the electrophysiologist at the regional hospital, the medication was changes and I was put on the waiting list for an ablation - it was finally done in January, and it seems to have sorted it out altogether.

The adrenal insufficiency will probably have made the a/fib worse. Are you on a bisphosphonate for your bones? They don't help either - about 3 weeks after the ablation I had a bisphosphonate infusion and developed atrial tachycardia! That seems to have settled down again though. after a couple of months.

Don't panic - if you were at risk your GP would send you to the hospital as an emergency. The trouble with going private is that you would have to pay for the tests - and they can be expensive. If you are really concerned, spend the money on a Fitbit or smartwatch or cardiac monitor that allows you to record your ECG and download it to your computer. Many cardiologists accept them as screening to identify the problem and if the GP passes them on and they consider it necessary, you will be seen quickly.

[Bluey-1 in reply to PMRpro]

Ah thanks PMRpro. I had upgraded to the latest Apple Watch which gives Afib history. Doc took the data seriously. I was in Afib 54% week 1; 69% week 2. I had the second Zoledronate infusion in December.

I did have an incident last Wednesday night, breathlessness and a heavy chest feeling. Doc sent me to the Acute Medical Receiving unit at the hospital. ECG, chest X-ray, troponin blood test. I was also referred by them to cardiology. The bloods were fine so no heart attack and I was discharged. They have also referred me to cardiology outpatients.

I haven’t seen the discharge document as I was there from 12.00 - 9.10 pm and was exhausted. I was the only one left in the corridor next to the ward by 8.00pm. Several nurses tried to speed up the sign off by the doctor as the bloods were back earlier. Several excuses - shift change, doc seeing other patients, doc preparing discharge paper, doc is in a meeting. I cracked at the last excuse at 9.00 pm and actually starting to cry with frustration and sheer exhaustion. A nurse must have said something as a very young doctor came out and said I could be discharged and did I want to wait for the papers or have them posted! I told her I had to get home and to post them. Unbelievable. Had she spent the few minutes feeding back to me earlier, I could have been home at least three hours earlier. It’s taken a couple of days to recover from the experience. I’m a strong determined person but it’s such hard work managing it all.

[PMRpro Ambassador in reply to Bluey-1]

Oh yes, I know! And I had to manage my husband's medical mess too - but not in the UK NHS at least though in some respects here was harder. The ED here isn't as crowded as most in the UK but the staff here are a very different type - nothing comforting about most of them!

The trouble is by that time of night, they are on to night staff which means fewer of them and you have the handovers to be done. Inevitably, staff arriving, staff leaving, it is far too easy for continuity to break down - and the patient is the one in the middle. It isn't right but the lack of investment in the NHS means they are working flat out on a permanent basis because of lack of staff and by that time of night are exhausted.

It will all work out OK - they are obviously happy you are not acutely ill and you will be seen soon I'm sure. Let us know how you get on.

[Bluey-1 in reply to PMRpro]

Will do. I understand the pressures and you’re right, I was lost in the middle. It was the increasing exhaustion and rules which didn’t seem to make sense. I had to stay in a corridor off the ward and BP, phlebotomy, discussion with medical staff took place in the corridor. They’re on their knees I know but I guess my exhaustion with the Afib and adrenals playing up did me in. I’m usually very sympathetic and certainly appreciative of the care but it was weird that the nursing staff kept coming by and asking if I was still waiting and followed up for me. On the plus, side sandwiches and drinks were brought round at tea time.

[Suet3942 in reply to Bluey-1]

Hi Bluey. I know exactly where you’re coming from. I developed Afib in December last year. Long story short, I went to A and E 3 times in 2 weeks. First 2 visits were 15 hours long, sitting on a hard chair and the 3rd time they admitted me to HDU after 18 hours. My husband had also been admitted as he fainted whilst I was talking to someone after phoning 111. The a & e doctor was lovely and kept coming to check up on me. She said she was trying hard to get me admitted to the cardio unit but they wouldn’t have it. So I attended in outpatients. Since then I’ve had an echocardiogram which shows a leaking mitral valve. The cardiologist said it’s not bad enough to worry about at the moment but I get very breathless when walking and as for walking and talking - forget it. My next appt is a telephone appointment in October!! I’m on a beta blocker and an anti coagulant. I feel as if I’ve been left to get on with it. When I was discharged from hdu with low BP and an extremely high heart rate that’s what I was told. ‘ learn to live with it’. I dread going to A & E. It’s traumatising. Like a war zone. I hope you get some answers soon

[Bluey-1 in reply to Suet3942]

What an awful experience Suet3942. The hard chairs! At several points in the corridor it felt like dark humour. It was like being in a medical version of that mockumentary sitcom about BBC management, W1A. Porters always in twos, the dialogue of us patients in the corridor, staff passing by with bits of paper, staff with BP machines trundling in the corridor to patients. On the plus side most people meant well. I’ve rung the unit to chase up the discharge papers which will be posted today. The admin person I spoke to said she’d personally send out a copy to me today so I may get two copies by Wednesday. Take care and thanks for your comment.

[Bluey-1 in reply to PMRpro]

It’s really heartening that your Afib is sorted and thank you for your reassuring comments. I hope I can follow in your footsteps in getting it sorted and feeling better. You’re a saint on this website.

[SheffieldJane]

Even though this is not my story Bluey-1, I find PMRPro a great comfort. Wishing you all good things.x

[yogabonnie]

Thank Heavens we Have PMR PRO. And Bluey my husband has "heart failure" (bypass at 37 years old and again at 75) and pacemaker and going strong!!!!!!! at 86 doing fine!!! stronger than I am these days. It does all see so scary but sounds perhaps much worse than it is. Sorry you are going through this.

[Bluey-1 in reply to yogabonnie]

Ah thanks Yogabonnie and thank heavens for this site. I pondered whether to post but the detailed reply from PMRpro settled my fears and your comments too are really helpful. It all sometimes seems a bit much to cope with and as you say ‘heart failure’ seems like the end.

[Flivoless]

Don't be overly concerned with the term heart failure, it certainly isn't the "end". I had AF (heart at a permanent 130 bpm) that lead to heart failure - left ventricle down to 8% but had a cardioversion (switch-off and back on gain) and put on bisoprolol, Entresto and Spironolactone and within 2 months left ventricle was back up to 98%.