We are at the beginning of my husbands Heart Condition journey and I suppose I’m reaching out to see if anyone can recommend what we need to do/ expect next.
My husband (34 years old) went to A&E at the beginning of July as very suddenly his HR was 160+ and he was having flutters every 5 mins. He was told he has AF - blood tests show it’s not his thyroid and it’s unlikely it’s anxiety/stress related. The A&E doctor said it could be hypertrophic cardiomyopathy and has booked him an appt in 2 weeks time to have a 72 hour ECG fitted and in 4 weeks for a heart echo. She also prescribed for him to have 7.5ml beta-blockers a day which are wiping him out so he’s reduced this to 5ml just so he can get up! He is a joiner and been told to rest as much as possible but he can work if needed, just take it steady if he feels a flutter. This has managed his flutters and he is now only having 2-3 a day, his heart rate is also within the normal range.
This is such a worrying time, we are a young family and every scenario is going through our heads meanwhile we are trying our best to stay positive. This not knowing is awful - does anyone know if there is anything we can do to get answers quicker? We don’t have health insurance but would happily pay private to have the echo done so we’re not waiting - I’m not sure how that would work as the remainder of our care would need to be through the NHS. Or do we just buckle up and accept we won’t find out until the middle of next month.
Dr Google is the worst and I’ve really scared myself by reading into what this could be and what the prognosis may be.
Thank you for listening to the ramblings of a worried wife, I don’t actually know what I’m asking of anyone. I suppose just to be heard by people who may understand this situation if you’ve been here yourselves.
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Mollymustard
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Hi. I can't offer specific advice about your husbands symptoms or condition as I have no experience of this. However I just wanted to say hi and reassure you that the medical proffessionals can do amazing things and I'm sure he will be fine.My boyfriend is 50 & after some mild angina symptoms was referred to a cardiologist. He is now booked in for a heart bypass in a couple of weeks. It is a scary time, but I have had great comfort from reading peoples stories on here, they are all lovely people and have some great positive information to share.
I haven't googled heart bypass because it's just too much to take in, but I have sought as much information as I can from real people who have been through it and from asking the cardiologist and surgeon questions.
I'm sure other people can offer you more specific info about your husband, but just to say try not to worry (of course you will be worried, I am too about my boyfriend) but there is support out there. Take care
Thank you so much for replying Kelly and for your kind words. Worried wife/girlfriend club is a tough one to be a member of. I hope everything goes well for your boyfriend’s operation, I’m sure it will - especially as he has all your support.
Once we have a diagnosis for my husband I think we will feel better as we are both very logical, it’s the not knowing what we are struggling with. Xx
I can understand that. Take each day at a time. Ask the doctors any questions you have. We have just moved house, so although been stressful it has taken our mind off things a little and been a bit of a distraction.
Hi, I know it’s worrying but don’t jump to any conclusions until all the tests are complete and you have the final diagnosis and prognosis.
I have Afib, which was the root cause of a heart attack 5 years ago. AF is a common arrhythmia and is very treatable. I fully recovered from HA, the AF is very stable, treated with medication and I live my life with no limitations.
My medications were adjusted after a while. Bisoprolol was removed because it was wiping me out, leaving me fatigued and tired. I soon returned to my active self - running, cycling and climbing a few times a week.
If you want to pursue private tests then I’d start with your GP asking for a referral, private providers usually require one but not always. For the past 5 years, I used a combination of NHS and private seeing the same cardiologist. I funded this either by insurance or myself.
Avoid ‘Dr Google’. There is another forum for Atrial Fibrillation Support on this platform, run by the Arrhythmia Association. Look it up, it’s a very supportive group.
Thank you so much for your reply and for sharing your experience, I have found it really reassuring. It helps to know how others have managed with their condition and what avenues they have taken. I am pleased you’re back on your feet and able to do what you enjoy again. Thank you
keep off Google….it causes anxiety and stress …it is out of date… much progress has been made in fairly recent years in treating heart problems..I’m sure you’ll all come through this initial shock and settle down to a normal life..We have to do ..you take care many readers of your post will know exactly how your feeling..not much consolation I know ..but it does help eventually Take care GodBless
I personally would 100% recommend going private to have the echocardiogram. You can have these done for £250. You don’t have to be referred from your GP - just look on line at private hospitals near you that do them and call and book. I had mine done within a week, I would’ve waited quite a long time on the NHS. You can always go back into the NHS after you’ve had the echocardiogram. I did pay for a consultation after my echocardiogram because it showed some problems with my heart. The not knowing is definitely the worst part!
Heck, I paid £420 for an ECG last November, plus £110 for "reporting" (plus £160 for the surgeon to interpret the report and to check my heart), and Googling suggests that this is double the average rate, though I found an on-line quote of £85 in SW London (too good to be true?).
Google can be good but also really scary,if they were really worried about your husband they would have done ecg and echo straight away,it's hard but you have to trust they know what they're doing, you can always ring relevant department and ask when appt will be? I had to wait a few months after being told I was in permanent AF,turns out not but have hole in my heart and didn't know,all the best
my sister has the symptoms and can’t get cardiology appointment untill mid august . She’s going out of her mind with worry , but gp said he’s not too concerned
It pains to hear that your hubby has joined the "Hearties" at such a young age, most of us are double that age! He has been given meds, give them time to work! When I was given a Beta blocker I was told it could take 2 months to properly kick in! I found this medication to be very useful, it stopped my chest pains and is designed to slow down HR. (I was started on at 1.25mg). But your case seems more severe, hence the higher dose.
However, let the NHS take its course, as long as he is not getting chest pains. That's what will decide the urgency of the situation. If he were to get chest pains, then you must contact your surgery straight away, unless you have been told to go to hospital already? This will automatically move him up the list of scans etc.
The fact that this has not happened could mean that he is relatively well enough to manage for now. Take it a day at a time, perhaps reduce his work load, or even stop for now, so that his body can adjust, keep monitoring and recording (on paper/diary). I think all is going well for you right now under doctors instructions and into next stages of treatment.
Hi I have gone through similar in the early part of this year (dilated cardiomyopathy) Going private for the echo and first consultation (I did without insurance) is a reasonable idea to establish a diagnosis and start treatment. The private cardiologists can get the ball rolling…treatment and arranging further test’s within the NHS eg. An MRI of the heart. Keep your NHS appointment and attend that as well. The private cardiologist will probably also work in the NHS and will know the system and the other cardiologists within the NHS. It is best to be in the NHS for ongoing treatment as there are many physicians who will discuss your husband’s case to develop a treatment plan. His beta blocker starting dose appears to be very high. It is commonly started at 1.25mg and ‘titrated’ up slowly….2.5mg…..3.75mg…..5mg over a 3 month period, checking tolerance all the way and allowing the body to adapt and develop tolerance.
It might be Atrial Flutter which is a different condition to AFib. Your husband's symptoms sound identical to mine. I was diagnosed 2 and a half years ago. I am on 2.5mg of bisoprolol daily and haven't really noticed any side effects. I feel flutters perhaps once a day, particularly if I forget my medication but also if I am over-tired. Either way, your husband should be able to continue work as normal.
Hi, I had some irregular heartbeats, and was referred to NHS for Echo Cardio thing, was advised by answer phone that I would have to wait up to a year! So I went private (thro' Benenden) The local private hospital had a good website, and a number of Cardiologists, I selected the one I thought best, and was also on the Cardio team at local NHS hospital, which I thought a good idea. I had a 7 day monitor (not available on NHS) and an echocardiogram which was very good. If I had to pay, it would not be a lot of money, the whole lot would have cost less than £1,000. My out come was that I have had a Pacemaker fitted (under NHS), 4 months down the line, and all is great. All the very best.
It's a scary journey and you're suddenly thrown in at the deep end. Yes avoid Google. If you can go private, do so. It's really awful we have to consider it, but there can be such long waits in cardiology. Be aware if you go private, they may recommend more tests and if you go back to the NHS after your test(s) you could be back in the queue. It really does add up, but I understand you can 'shop around'. I had read that there may be availability for procedures etc in areas other than your own if you are prepared to travel. I tried to investigate this, but didn't get anywhere. Perhaps I wasn't persistent enough but I was pretty worn down by angina pain by then, and as I'm quite old I ran out o energy. I got a referral from my GP surgery manager, but seems you might not have to. Good luck.
I know you must be very worried , but you keeping calm will help hubby, just take it easy until after the tests are done ….Try not to alter medication himself , give the body time to get used to the beta blockers which are slowing him down a little , it’s sounds as if he needs to slow down a little , the tests will tell you all you need to know and the wait for results is minimal , so try and relax enjoy a stroll in the park , feed the ducks , just a slow pace for a while .
Treatment can be miraculous so wait calmly til the results are explained to you .
hi, sorry to hear about your anxieties, I know how worrying this must be. I’m in a similar position at the moment except I have no diagnosis. I’m 58 and for the past year I’ve been having erratic heartbeat, exhaustion etc. All blood tests and ECG tests are normal and heart failure test is normal too. I’ve spoken to a cardiologist who doesn’t seem concerned about anything but is sending me for an echocardiogram in a couple of weeks. But he seems very unconcerned and thinks the palpitations I’m having will stop on their own. I don’t know why he seems to think that as it’s not been diagnosed what’s causing the problems I’m having, I’ve had 3 ECGs now and all show nothing. This has been going on for over 12 months so I understand how concerned you must be feeling. It’s hard to find the answers and all I’m doing now is keep telling my GP when I’m having an episode and monitoring my own bp and heart rate. Waiting for cardiology has taken months due to the waiting lists and I’m just hoping now that the echo has some answers. It’s hard not knowing what’s wrong and trying to live normally so I do sympathise with your situation. Stay away from Dr Google as it makes you think all sorts! I think you just need to keep pushing for answers as if you stay quiet you get ignored. Wishing you and your family well xx
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