HUGE thanks to all who respondend - brilliant advice, which our GP agreed with, referred him to the hospital's acute medical unit (not the hospital where he had the op). They were brilliantly thorough and after a long day there we ruled out infective endocarditis and neurological issues, confirmed that the new valves were OK, but identified slightly reduced liver function, folate deficiency (which could explain the confusion) and a UTI, which accounts for most of the other symptoms. No-one seemed sure about the legs not working business, but he passed all the strength and co-ordination tests, so they concluded 'one of those things'. So after IV antibiotics we came home feeling *so* relieved, and it's given dad (and mum) a huge mental boost which is paying dividends. I can't thank you all enough for your input; very best wishes to you all, and keep up the good work!!
12 weeks after aortic and mitral valve replacement and after a period of improvement dad (78) is suddenly getting worse... Back spasms, shivering even though he's not cold, losing the use of his legs, confusion, upset stomach, reduced appetite, lethargy, random pain, needing to pee all the time, very low mood.... He's on bisoprolol, ramipril and warfarin. We took him to out of hours doctor when his legs gave up but they found nothing. No follow up with surgeon due to covid, no rehab support.... Mum is at the end of her tether as she feels she can't help him, and we just can't get a sense of what is 'normal' after surgery like this. Any thoughts or similar experiences would be really appreciated!! Thanks so much
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Hi, this sounds like something that needs to be brought to the attention of the cardiologist, can you phone them? failing that speak to the BHF nurses help line. The random pain is the one that worries me, have you checked his pulse and BP? is he loosing weight? It is not "normal" for him to be like that, although I was - after my valve failed!! persist until it is sorted. HTH
Thanks Smarticus, we've been trying to get through to the cardiologist for the last couple of days - someone told us today that Dad was due a phonecall follow up on 27th Nov but 'everything's way behind so that won't be happening'. When Mum said she was worried they said the cardio's secretary would phone her back, but didn't, so we'll try again tomorrow. When he couldn't use his legs his blood oxygen sat was low, but pulse and BP OK, but when shivery oxygen sat was normal but BP was high and pulse racing.... I think I'll try the BHF helpline tomorrow too, thanks so much for that.
Hi, I have had Aortic valve replaced and bypass done and those symptoms sound not right and really need to be looked at. Reading your post to Smarticus if you can’t get to your Dads cardiologist then try 111 see if that can point you in the right direction. 12 weeks post op he should be making a good recovery.
Thanks so much Pauline - we went the 111 route on Saturday, phoned at 2pm and finally saw the Dr at 7.15pm who was lovely and very thorough but of course by then oxygen sats back up at 99%, all other vital signs normal, so 'just one of those things but see your GP if you're still worried.' But we think he should be doing better than this too, so thanks for confirming that we ought to press on trying to get more help! And thanks so much for your good wishees - really appreciated.
Hi. I had an AVR two years ago and while my recovery was pretty straightforward, I'd agree with everyone else that what your dad is experiencing doesn't sound right. Best I can suggest is simply to keep pestering and saying how worried you are? But good luck, take care and hope you get it sorted.
Thanks so much Nic - It feels so tricky to pester at the moment doesn't it when you know that everyone's so stretched in the NHS but really appreciate your encouragement and shall go into full pester mode tomorrow - in the nicest possible way of course! x
Hi it must be concerning for you and your Dad esp during these crazy times.
I agree with the others he needs seeing ASAP with full set of blood tests repeat ECG and possibly echo. I’m sure it won’t be but there is always a risk after surgery of post op infection.
Given that he has had valves replaced there is always a small chance of infective endocarditis that can mimic flu like symptoms. It’s really important that this is considered with whoever you get to speak to. If I were you I would call cardiology secretary first thing and say that you are concerned in case it is this. If no luck then try cardiac specialist nurses, GP and last resort A&E.
Thanks so much Scooby, hadn't even heard of infective endocarditis and I've read up on it now and he has all the symptons except the temperature - First message of the day has been left on the cardiology answerphone!
Hope you get him seen today Good luck. Infective endocarditis is not that common so hopefully it will be something far less concerning, however it is something to be considered given recent valve surgery and hopefully can be ruled out.
Well, one step forward - the surgeon's secretary phoned back, and went into the usual 'phone consultation in due course but everything's delayed' spiel and when mum said she was worried and explained the symptoms the sec. said 'it sounds as if you need to speak to someone medical'!!! So now we have a phone consultation with 'someone medical' next Monday morning, and in the meantime if he has 'another episode' and we're worried she suggests we dial 111...
Glad you have some progress and that you get to speak to surgeons team next week. However in meantime I would contact GP as emergency, he should be put to top of list as recent serious heart surgery with possible complications. At very least GP can get full bloods checked ideally today.
In other times I would be tempted to go straight to A&E but given COVID risks esp in hospital you don’t want to be going if you can avoid it esp as this may well be something simple that GP could manage. However if you are concerned A&E would triage this as significant and get full checks done. Fingers crossed you get GP appointment.
That's a good idea - I have to say our GP's have been a Godsend and after a really traumatic experience in A&E when dad was first taken ill in May both of them are petrified of him going back there, even more so at the moment. Mum did speak to the GP on Monday after the proplems at the weekend but he just suggested taking the bisporolol in the evening rather than the morning and see if that helped with the fatigue (dad currently still in PJs and asleep in his chair so not seeing a great improvement!!) but we'll call again and ask for bloods - would be good to have that in the bag before Monday's call, too. Thanks again!
I didn’t have the same procedure as your dad but had a ha and on the same meds.After a rough month or so started to feel much better.What I would say is be assertive and get the help you all need and are entitled too.If you get no joy today, phone 999 or take him to A& E.Hope he and you feel better soon
There should be cardiothoracic specialist nurses available to access for pre and post operative surgery. I’m surprised that your father wasn’t given telephone numbers to contact them if he or his wife are worried before leaving hospital. Search through paperwork. Good luck certainly doesn’t sound right !
Thanks Clipperkid, 'surprising' is one of the words I'd use to describe the aftercare he's had - or hasn't had..... probably best if I don't get started.... We just feel abandoned, honestly, but your replies have spurred me on to keep pushing and go with my instinct!
Absolutley there is nothng like instinct ! Push hard ! Im sure that there will be a cdiothoracic specialist nurse if the hospitial is doing such invasive surgery. My husband is going to have the same operation..... so would love to know how you get on?
Oh my word, very best of luck, I shall keep everything crossed for you both. And hope by the time he has it you'll be able to go in and visit him because I think a big part of the problem is not having been able to see any of the cardio team on the ground. We only saw the porters wheeling him out at discharge and when I started to ask questions they said 'he'll have had it all explained to him'... He was horribly frail and utterly confused at that point, so what they told him is anyone's guess, and whenever we've asked it's been 'have you read the leaflet'.... At more points along this journey than I would care to remember I've had to remind myself that I'm a competent professional woman - it's just so disempowering to be endlessly fobbed off that you end up feeling you're going mad. I shall keep on pushing! Take care x
All went very well but at about 15 weeks i slid backwards.
Legs wont work properly. Need to pee too often. Short term memory worsening. Getting fatigued.
This does get me down a little bit.
Is it post avr issues. Or just me getting old. Or is it the issues that i had post stroke five years ago. I dont know. I want to live a little rather than live around medical appointments
I know Dad has other symptoms but i had to reply given the parallels.
I am now about 30 weeks and things have eased. But i am very disappointed that i cant get back to the 15 weeks stage.
And of course the health services no longer operate.
I had a consultants phone call at 28 weeks but that was an utter waste of everyones time. How can a medic tell how you are by phone ? They can not.
Thanks so much Colin - your experience certainly sounds all too horribly familiar! Good to hear things have improved at 30 weeks but as you say, it's still not where you want to be, is it. And I have to admit the thought of another 18 weeks of this fills me with dread. Thanks so mcuh for your good wishes to dad - I will pass them on, and am sending mine to you.
This sounds to me like one of those difficult to diagnose problems (obvs!) and a good thing to do would be to keep a detailed log of symptoms. There is unfortunately a tendency these days when you kerp seeing different doctors to only look at what is in front of them. See if you can go back over past symptoms, too, then go on from there. Best of luck.
Thanks Cliff, we were doing this a lot at the start (including mum keeping a log of how many times he peed in the night!!) but we've fallen off a bit recently and you're right, we should get back to that level of detail. This is the thing we're finding; people we speak to are generally sympathetic, and the 111 Dr we saw at the weekend was great, but by the time he saw him things had calmed down again, and there seems to be no cross-referral mechanism at all between the various different services. Thanks for the encouragement - we'll keep on keeping on...
Something has just come to me. Was his valve surgery open heart or transcatheter? Particularly if transcatheter, there is a risk of aortic damage, even what is called a dissection, from the passage of the catheter. The *only* way to confirm or rule this out is a CT scan. I think you should ask about this risk as it will put the possibility in the doctor's minds. Aortic dissection is a classic for transient symptoms and pain that comes and goes or moves. It can cause problems like loss of strength or feeling in the legs. It's a rare complication, but not unheard of. If nothing else, I would insist on a CT scan to rule it out.
Good, symptoms that come and go are classic AD, but then presumably so are other things. Apart from the mitral, did he just have the AV done, or any of the ascending aorta too?
Nope, just the 2 new valves. I've now got him an appointment for tomorrow morning for blood tests and a GPs appoinment too becuase the GP who called me back today agreed with everyone on here that it just doesn't sound right. I can't tell you how relieved I am to have posted on here and got such clear advice and encouragement ! Huge thanks.
Hi again, from what I've seen there is a lot of good advice here. Please search for his discharge notes/form and for the details of the surgeon. You can usually get in contact with the surgeon via their secretary (look on the hospital website)and should have the details whoever booked him in (case manager type person). Bloods/BP/Pulse and ECGs as a rule wont help diagnose the issues he seems to have, you need to push for an echo and TOE. Please keep ringing them every day! and telling them he is seriously not well!! He may have an infection (a carditius type) that needs antibiotics or somethign simple. Please dont worry about bothering them, but in these times you do need to "push" (actually ask them if they can do an echo/TOE/ct/Chest xray and if not why not) I've been in and out of hospital now for the past 6 weeks and they are very covid safe so dont worry about that.(I spent a year chasing and documenting everything until they discovered/admitted the stitches had failed!)HTH
edited to add, I wonder if he has possible thrombosis? what blood thinners is he on??
edited to add I sound like a dr! - im NOT, just a random internet stranger
Hi Smarticus, yes, stacks of good advice and I went into battle mode and have an appt for him tomorrow first thing for full bloods and then a follow-up appointment with the GP because they agreed today that all doesn't sound right. And my mum did finally get through to the surgeon's secretary today who said 'it sounds as if you need to talk to someone medical' (!!!) so we have a call with whoever that might be on Monday, but I want to have seen the GP and got the bloods etc. done before that. Thanks so much for the TOE etc. advice - would've had no idea (had to google TOE!) Will add that to my list of qus for Monday. Understood that you're not a dr, but blimey we have to become experts really don't we just to get anywhere!! He's on warfarin, due to finish those next week, so I guess after that it'll be aspirin? Do hope your hosp visits have been OK. Big thanks again.
Hi, so sorry to hear about your dad, but there has been lots of good advice from others in reply.
This is probably a long shot, but two months ago I sufferred symptoms very similar to your dad's, except for the legs giving out which I didn't have and with the addition of palpitations . It turned out I had a severe urinary infection which was finally treated by 3 weeks of antibiotics. This would be easily elimated by having a sample of pee tested at the GP's surgery if they haven't already done this. Whatever it is, you do need someone to see him asap. even a urinary infection is serious and it might be something worse. You could try 111 out of surgery hours if you can't see your GP. They will probably send an ambulance crew or an out of hours doctor. Hope you get answers and treatment from the medical profession soon.
Thanks so much Astronomy, we took him to out of hours via 111 on Sat and they did a dipstick test then and it was clear, but I;ve now got a drs appointment again for him tomorrow morning with our local GP and they've asked for a sample and said they'll send it off, as the dr I spoke to today mentioned a UTI as a possibility too. It would be fantastic if it were 'just' that, if you know what I mean - not that UTIs aren't horrible, but at this point an antibiotic solution would be welcome. Keeping fingers crossed, and thanks again.
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