Heart Valve Replacement - severe dizziness and breathing difficulties 1 year+ post op

[S1462]

Hi! My dad had his 3rd open heart surgery last July (2021) and he's been poorly ever since. He had a heart infection which went undiagnosed for months (despite lots of GP phonecalls) resulting in an emergency valve replacement (he was born with a hole in the heart and was due another soon anyway but the heart infection caused lots of complications).

Since coming home, he's deteriorated more and more and no-one seems to be wanting to help! He's waiting on the results of a CT scan and echo (which we pushed and pushed for). He is dizzy all the time and has terrible problems breathing. His quality of life is poor as a result and he's getting very depressed. The GP surgery are absolutely useless and not at all interested. His surgery didn't even have a doctor for 6 months! He had a chest xray which was clear.

He has some mental health issues/brain damage from previous surgeries and has issues/phobias about A&E so he won't go there unfortunately and that's all they tell him to do. Has anyone else experienced these symptoms post-op? Any advice would be much appreciated 🙏

[Beater]

I wish that I could help. Had my surgery in June 2021 AVR and bypass. Is he on other meds? Particularly anxiety meds? I went into immediate withdrawal after 11 months of beta blockers of beta blockers and anxiety meds at the same time. I'm 64 and bedridden ever since. I've lost myself and have no quality of life. Went to hospital and after 6 days they sent me home with no help at all. You are right, they really don't seem to care or want to help Is he also have food and environmental sensitivities? My central nervous is is now damaged. I'm in pain all day every day.

[S1462 in reply to Beater]

Hi Beater, thank you so much for replying. I'm so sorry to hear that you're having similar issues 😞 I cant believe how little support there is post-op. My Dad is only just 59 so young like you with plenty of life left to live yet! He is on warfarin, beta blockers and I think an antidepressant too. He doesnt have any other sensitivities as far as I know. He did have a pacemaker put in but that seems to be working OK when they checked. I'm writing to Royal Brompton, our local hospital and the GP this week to see if anyone will offer some support to him. It could even be something simple like his medication needing adjusting (the dizziness anyway). The breathing I'm at a loss with as his echo when he had the surgery was fine and his chest xray was clear. He feels the same as you, that he has lost himself and has no quality of life. He spends most of his day in bed or sleeping on the sofa (as it's easier to breathe). He coughs up huge amounts of blood, like tissues full of clots and we had to beg them to give him an xray. I was shocked as to me that should have been a huge red flag in itself. So we still don't know where the blood is coming from, he coughs all the time. I really am so sorry you're having the same difficulties after going through all the surgery!

[Hidden]

Hi, Sorry to read about your Dad's ongoing problems. It's very similar to my experiences, I had two infections from my 2nd OHS, one of them Endocarditis resulted in a 3rd operation four months later.

That was in 2013/14, and although not fully successful, I was relatively ok for the best part, until I was diagnosed with Heart Failure in 2021. Breathlessness amongst other issues which eventually caught up with me. This was shown up in a CT Scan and Echo. HF sounds worse than it is, and in my case medication has helped hugely.

Hopefully, your Dad's CT Scan and Echo will determine what's going on.

I don't tend to bother with my GP, I've always found going direct to hospital the best way, even if it means parking myelf in A&E. I realise he doesn't like it, but, sometimes it's the only way.

Best wishes

[devonian186]

I don't know your financial circumstances, but it sounds as if you and your dad need to start down a completely different path in order to kick start his recovery. He is still very young and the danger is that he will just subside into accepting permanent ill health.

So why not immediately investigate the costs of getting him checked out privately? It maybe he needs meds adjusting, some help with his mental health or have surgery but until you ask someone motivated enough to help him you won't know how to proceed in the future.

[Harrysgran]

Hi there. Im so sorry to hear about your dad. You didnt say if he is on warfarin as im very concerned about him coughing up blood.That is definitely indicating a serious problem somewhere. Have you thought of phoning the British Heart Foundation nurses for advice? Their number is on the site. Otherwise as someone suggested, seeking a private consultation if finances allow . Another way is to call an ambulance when hes coughing up blood . They will do an assesment and take him to hospital if they think its nessesary. Its not right that his gp isnt interested and youre having to fight all the way , unfortunately this is the reality of the healthcare system now.

[Harrysgran in reply to Harrysgran]

sorry! Ive just seen he is on Warfarin. Its most likley his bleeding is from his INR being too high. Does anyone check it? He really needs to see a dr urgently!!!

[ParrotLover22 in reply to Harrysgran]

That's just what I am thinking!!

[ParrotLover22]

Hello. I have just read this Post and feel very sad indeed. The only thing I can say is that if your Dad is experiencing severe dizziness it might be that his HB is far too slow. I used to get this regularly but now have a Pacemaker. Also, is there anyone at all checking his INR as he is on Warfarin. It could be a case of his level is far too high. This can cause coughing up blood. Can't you ask if a Community Nurse could come and see him? If not, as someone else has said, call an Ambulance! He needs to be thoroughly checked over. I am not Medically Trained but am talking from personal experiences. Good Luck 🤞

[Shar28]

Hello, sorry to hear of the challenges facing your dad and you. It sounds tough for all concerned. My husband had dizziness and thought it was all due to the meds, but actually it was mostly due to a problem in his neck. Our regular chiropractor sorted it out a treat. Has he been checked for any mechanical issues like stiffness in his neck/spine and any other conditions that can cause dizziness? If not, I’m guessing it will be hard for him to trust anyone enough to give him a check up.

Best wishes. Xx

[S1462]

Hi everyone! Thank you all for taking the time to reply and sorry for the delay in responding. Dad finally got taken into hospital before Xmas and he's now at Royal Brompton. He has two valves that are leaking and need replacing. Unfortunately they have to do another open heart surgery 😭😭😭 His lungs were full of fluid when they took him in so that explains why he was having so much trouble breathing. I'll do a new post to ask about anyones experiences having a 4th OHS