Living with post perfusion syndrome

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Does anyone else suffer from this? 

My 83 year old Father has waited nearly 3 years for this diagnosis  following heart surgery in 2011. Depression is the main symptom but there are numerous other problems such as extreme fatigue, memory loss, poor concentration, giddiness. No it's not dementia this has been conclusively ruled out.

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  • Posted

    All of those symtoms can be due to side effects of medications. Have they looked at that?
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    • Posted

      Oh Yes to the degree that one of the doctors said well we have tested everything so you'll just have to accept this is as good as it's going to get. I was furious and would not accept that and pushed for further tests and the holistic doctor we saw yesterday was like a breath of fresh air.
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  • Posted

    How was his initial recovery? Did he suffer from any infections whilst in hospital?

    As Sharon77083 says medications could be a cause of some of his problems. Is he taking Amiodarone and statins?

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    • Posted

      He had a remarkable recovery despite going into arythmia(sorry about the spelling) and having to be taken back to theatre. No infections just this awful cloud hanging over him which has meant I can't leave him some days. His medication has been reduced because we have asked for reviews but this diagnosis yesterday was a tremendous relief. My poor father thought he was loosing his marbles just so frustrating that it has taken this long to get a proper definitive diagnosis not palmed off with drugs or just live with it attitude because of his age presumably.
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  • Posted

    Having had heart valve repair in January this year, I can relate to what your Father is experiencing.  I am 65, and still feel my memory isn't what it was. I met a lady who had the same op and she had awful 'wakeful nightmares' where she imagined she was being sold to slave traders! And she often 'saw' soldiers in red uniforms parading through her ward!  She too is 65 - these hallucinations disappeared over time but having spoken to many people on this subject, the cause is often 'post pump' syndrome because we have had our hearts stopped to enable surgery to be performed.  Even just having anaesthetic can make you confused - my Mum had mild vascular dementia when she had a hip op and was far far worse when she came round, picking at her dressings and not realising she had had an operation. So the combination of the pump and also anaesthetic is bound to have an effect.  It is very frightening for you (and your Dad of course) but worse for you as you can see his deterioration. There was an article about this in the newspaper recently and a consultant said that though it does take a long long time, it does usually improve - I send my very best wishes to you and you Dad, try and take each day at a time, don't think 'will it be the same in 6 months time?' - deal with it daily and hopefully he will gradually improve.  
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    • Posted

      Thank you for that Linda hope you are feeling better each day. Regrettably Dad had his op back in 2011 and his depression persists. I have to say that really the best thing so far seems to be the Australian Bush flower remedies so we are sticking with those plus a bit of Floradix to boost his energy levels. As you say we take each day as it comes some being better than others.
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  • Posted

    Rachel,

    Please what did the doctors diagnose with your father? And what treatment did they offer? Who actually diagnosed Post Perfusion Syndrome..Pumphead?

    My husband had an Aortic valve replacement and CABG in January 2016. and although he was fine to start with, despite going into perpetual atrial fibulation where as before he had only occasional A/F, but after about 2 weeks became a different person. He was put on Amiodarone for the A/F, which to be quite honest is a horrible drug and shouldn’t be prescribed for anyone, which is full of Iodine and has given him Hypothyroidism, so now is on Thyroxine.

    He has a very short memory span, gets very depressed and irritable and swears a lot, which he never used to do, probably because he is so depressed.

    My husband also has chronic insomnia’ which one doctor said wouldn’t kill him, which is stupid as it is a known torture regime, and another gave him sleeping tablets which gave him hallucinations. It was a wonder he didn’t break anything as he fell down the stairs and then fell out of bed after I had got him back to bed.

    He also goes through bouts of crying and saying that it isn’t his fault he is like he is, and I tell him I know it isn’t and try to comfort him, but I’m getting so bad tempered with him sometimes because I have got my own medical problems.

    So where did the Australian Bush Flower and Floradix come from, was it prescribed or suggested by the doctors.

    My husband takes Valerian plus, which is a known sleeping remedy and it also contains passion flower, Valerian which also has hops and Camomile, lemon balm, Kalms, which are to help him relax but not to help him sleep. He also takes a small dose of Melatonin sometimes. He also does relaxing techniques to try and get him off to sleep. We have taken to sleeping in separate rooms, as although I used to leave going to bed until after he was asleep, I always inadvertently wake him up, and that would be that for the night, and we would both be awake for the night.

    He also takes Magnesium, Vit D, Calcium and Vit B complex to help him.

    Are you able to give any more information on your father.

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