Looking for Reassurance For My Dad

[Tanglewood1]

Hi

Three weeks ago my dad who is 78 underwent open heart surgery to replace his aortic valve and have a double bypass at Papworth. He went into hospital early in January after having a heart attack and had quite an up and down time while waiting for surgery. He is allergic to lots of drugs and lost a lot of weight. However, he was out of intensive care within 24 hours and despite a difficult time with recovering his mental state from the trauma of the operation, physically he seemed to be doing quite well. Unfortunately after being discharged from Papworth within a week of having the operation, he has returned to hospital twice, once with severe chest pain and yesterday with extreme exhaustion. The first time he was back in hospital about a week ago, they identified an iron deficiency and put him on iron tablets which I understand take a couple of weeks to make a difference so this time they given him iron intravenously.

I've been reading a lot on the internet about post cardiac surgery. Obviously it would be useful to have a proper discussion with a doctor, but there's hardly ever one around and when you see one they barely have any time and it's like they know nothing, don't share any thoughts in case they're wrong or think you can't comprehend the details. So if anyone feels they need to tell me to "talk to a doctor", don't worry I will if there is ever the opportunity.

I read that iron deficiency anaemia is very common in post cardiac surgery patients, and it seems like it's a serious issue that is easily fixed, so why don't they worry about it in hospital?

A second issue we have is regarding his strange behaviour since the operation when it comes to hospitals. At first I was convinced he was suffering from Post Operative Cognitive Dysfunction, a lot of his behaviour was like someone with dementia. I think there was some mild cognitive impairment before the operation and now he generally seems back to that level. But he goes into total panic if he thinks he has to go back into hospital and breaks down begging everybody not to be taken back. I'm now wondering if he's suffering from PTSD. Or maybe a combination of PTSD and POCD!

Are any of these things familiar to anyone else reading this? I'm wondering what I should be telling him and my mum. It's seems like there's no post surgery care plan and they keep saying things like "they never told us it would be like this" my parents have no idea what's going to happen next and I feel like it's up to me to understand what's going on medically because I'm the only one that might understand enough of the medical terms used in the literature I've been reading.

[MichaelJH Heart Star]

Hello and welcome to the forum! I think the possible (usually short term) are not really mentioned to patients enough. Post bypass I suffered from an electrolyte imbalance (retained 9kg of water), anemia and a pinched ulnar nerve that affected my right hand for some months. The mental side is tricker to comment on and hopefully somebody with experience can comment on this. Starting rehab might be useful for him as he will meet others in the same boat (the one I attended allowed a relative to come along to offer support - some even did the exercises). Counselling may be appropriate. For myself CVD was no shock as the male side have a horrendous history. When I came round in ICU I was happy to be free of the angina and breathless I had suffered for over a year. Good luck!

[080311]

Hi, Tanglewood1 I have had aortic valve replaced and bypass I was 69 that was 3 years ago. First let me say so sorry you’re Dad is having a bad time. Having open heart surgery is a major event and we all don’t react the same way. As Michael as said waking up in ICU it was such a relief to not have the feelings of breathlessness anymore. I am sure your Dad will get sorted out, please though make sure he takes up cardio rehab I found it invaluable to get your stamina back but also for my mental state. You sometimes think did that really to me, but being around people who have had similar experiences to yourself really helps. You find every twinge is something going wrong! Other people have the same twinges and you think ok it’s normal. They took my artery from my chest and the left side was numb for over 6 months. Again you think something is wrong! It’s very early days for your Dad, he as just started the journey us hearties are making! But I am here 3 years on living a good life and so very grateful to everyone who had a hand in giving me my life back.

I send you your Mum and especially your Dad my very best wishes Pauline

[Kristin1812 Heart Star]

What a difficult time for you all. Just a comment on how your Dads coping. If he already had some cognitive impairment before all this.....which you suggest, then he will probably find it even harder to absorb and process new things.

A by-pass and the ups and downs of recovery is pretty stressful for most people, but if you are having difficulty processing new information, then it must be extra confusing.

You are observing his distress and his anxiety which could be a result of taking things in more slowly. It’s a big event and there’s lots to get your head round.

[Bagrat]

I am sorry your Dad ( and the rest of the family) are struggling. I feel psychological support could be very helpful at this juncture and would talk to his GP re accessing this.

I also realise that as a gentleman in his 70s ( I'm married to one) talking about how you feel is not top of his list of priorities.

I developed panic attacks after my husband's heart attack and sought help years later with amazing results..

Make sure you look after yourself . Can you get permission from your Dad to accompany him to his next appt, if you don't already and write down your questions. The difficulty there is always that you may have queries that you don't want to discuss in front of him though.

I do feel for you but am sure things will improve over time

[MargeMiller]

Hi... am pleased to hear that your Dad has recovered relatively well from his op, and it is a huge op, no mistake about that. It is also very stressful for the loved ones who are walking alongside... I am one of those. My husband had a heart attack and double bypass in 2015, at the age of 48. Unfortunately, they sent him home with an infection in the wound, and failed to notify his GP of his release from hospital, so for several days we waited for the GP to call, nurses to come and check his wound/change his dressing... no-one contacted him, so we had to get that sorted. After 6 days, it was in just a state that he was re-admitted through A&E, and they re-operated, and he was in for a further 2 weeks. He had horrific hallucinations whilst coming round from his first op. As a result of the above traumatic experiences, he was eventually diagnosed about a year ago with PTSD and depression. This is extremely common amongst cardiac patients. However, despite the above, the only 'support' he has been offered, and is available to him on the NHS, is anti-depressants! And we have fought very hard to get him some psychological support. But he has to pay for it himself, he is self employed, on a low wage, so that is out of our reach. I am just sharing this story to let you know that PTSD is very likely to be a factor in your Dad's health right now, from what you have described. And the fact that he is terrified of going back into hospital... many many elderly patients refuse to go back into hospital as they fear that they will never return home. Can I suggest that you go onto the BHF website and look for a local heart support group where you and your Dad will find like-minded people with similar experiences, to offer support to each other? Also, if finances are not an issue, EMDR therapy has proven to be a successful approach for those suffering PTSD, apparently it's about £150 a session, several are usually needed. I hope/assume that you can also seek extra support from dementia nurses/agencies. Thinking of you all, best wishes.

[Ads568]

Hi Tanglewood1,

I feel for you and your mum and dad. I just want to say that I was in hospital for a long time and saw a similar mental decline occur in so many older patients coming and going. Of course, I didn’t know the patients before their operations, but their families all gave the impression this was very out of character.

I know you don’t want to hear this, but I think contacting your dad’s medical team (preferably the hospital or if not then at least his GP) is really important as they need to know what’s going on with him in order to treat him. You may need to be a bit assertive (not aggressive!) to get through to them that he is really being adversely affected by this. Perhaps you could try ringing his consultant in the first place, or try going through PALS to get pointed in the right direction. Chatting to the BHF nurses could be a starting point.

Your parents are lucky they have you looking out for them, I’m sure your mum is feeling the strain too, so please look after yourself, and her too!

Best wishes.

[Ianc2]

Hi Tanglewood

I had Valves replaced when I was 69 and had some very impressive hallucinations when recovering from the operation. As one of the nurses said " Is he always like this"? For a variety of reasons it took about ten days to get discharged. A form of brain fog descends for a while and you have to take it very easy while you gather strength .

It takes about 8 weeks for your sternum to knit together so care is required with exercise. Was he very active before his op? Regular gentle walking , slowly extending from lamp post to lamp post will help his recovery and get his blood flowing. I enjoyed the rehab and the follow on course in the local gymn, but the regular daily walking helped a lot before I got there.

One if my neighbours had a triple bypass at the same time and did not recover quite so well and slipped onto dementia. I believe It is a possible side effect of this type of surgery. I am not sure how you guard against it but I think that being as active as possible in familiar surroundings will probably help him to gather strength.

I am 75 now and doing my best to spend all my time getting out and about I can understand his fears about going back into hospital. Did he exercise much before his operation?

[mikealford]

I feel for you, but I understand also. You're dad has had a complete shock to his system, both anaesthetic, and healing all at once. The drugs you get put on can give you all sorts of pains and other things going on, it's a little wonder that his thinking will be clear, and so the fear that he has is real. The good news is that things will get better, but it takes time.

Getting information is always difficult. You could try emailing the consultant for information, and talking to his GP. Good luck...

[Handel]

Hi Tanglewood1. So sorry you're going through all of this.

I can only speak for my husband's experience following his quad bypass at the age of 67. He suffered with deep depressions for several months after the operation which left everyone (including me) tiptoeing around trying not to upset him!

This was very out of character!

He was seriously allergic to codeine/morphine which messed with his head (if only the GP and hospital had taken notice of his medical notes which clearly stated no opiates). However, once off those in the early days, hallucinations disappeared.

Once up and about and walking around, things started to improve mentally. Like your dad, my husband now has a fear of hospitals.

I really hope things start to improve for all of you soon. xxx

[marigoldb]

I really do feel for you, as you are seeing your Mum as well as your Dad suffering. Asking to see the consultant will have to be with your Mum, as I know they will not give out information unless you are next of kin. Do hope you get help to be able to see what’s going on for your Dad, and what help he can receive.

He certainly has had a traumatic time. It’s really early days so keep being hopeful.

I had aortic valve replacement and single coronary bypass, just 6 months ago, have had to fight not being depressed, as I live on my own. Thrilled that breathlessness gone and BP fine, just real exhaustion most of the time. On Bisoprolol, have heard others say it’s a side effect!