communication

[AH31]

I had OHS over eight months ago. Physically I’m fine, occasionally discomfort in my left rib but that’s after driving and soon settles.

The main issue I am experiencing which I have noticed in the last few months, is delay with my cognitive and communication skills.

For example: When I am in conversation with someone it starts ok but then I either lose train of thought, or blurt out random things, like I can’t control my thoughts.

I then feel embarrassed afterwards, and try and make myself feel better but over playing it in my head. I also feel my personality has changed, I get irritable quickly and say things out of character before the surgery.

[devonian186]

I would say I had much the same thing after my OHS. I noticed it the most when I couldn't concentrate on long books and that I got bored visiting a museum or art gallery after 30 minutes. I think its the medication plus the whole experience of the surgery.

I think I got back to normal after a year or longer

[Traveldreams]

haven’t experienced this yet but I do find that I occasionally have to search for a word that doesn’t appear immediately.

[Ageingfast]

Dear AH31

After eight months your new valve should be well and truly settled in. If your rehab was not completed then it would be good to do some rehab/exercises/walking etc.

My OHS went very well and I was on top of the world. However, about one year on I wasn’t as fit as I had hoped and I kept thinking this was related to OHS.

But now, wise after the act, I realize there was nothing wrong with my valve. In fact I had the very first early stages of Parkinson’s. I wasted months, even years, trying to deal with phantom OHS thoughts when it wasn’t OHS issues at all.

In my case I also had remnants of problems arising after a stroke, ten years earlier.

But nothing related to OHS.

I get an annual pair of scans at my local hospital and this confirms nothing wrong with my new valve.

My memory is failing fast. My mobility is becoming hopeless.

But none of this is related to my new valve. It is all post stroke and pre Parkinsons.

whereas it is unlikely that you are pre Parkinson’s, I would be looking at other causes for your cognitive and/or communication issues.

Sooty

[AH31 in reply to Ageingfast]

Thankyou for your reply.

I didn’t have rehab after OHS, I met all the requirements and was discharged from the hospital within five days.

I remember the first two weeks at home I couldn’t concentrate, nor hold a conversation for more than a few minutes.

I feel that is still the case now, but it has improved. I have returned to work full time, appear to be ok there, even though a few things have been pulled up in the last month.

I’m waiting my follow up appointment, I am thinking I need to tell them all about this because it’s not appearing to be getting any better. I also feel my personality has changed slightly I get agitated a lot more, but other days I am very relaxed and nothing appears to bother me.

[Ageingfast in reply to AH31]

Probably too late now, but your rehab could be done from home. I was given a booklet, showing exercises but the main thing was to walk, whilst talking. I had no chance with rehab as I got the op privately, at the height of covid. When the nhs reopened they could barely cope with rehab from nhs cases so no chance for me.

It will be interesting to hear what your follow up appointment tells you.

Well done for getting back to work. Probably a better benefit than organized rehab.

Best wishes

Sooty

[Taviterry]

The info that I received before last year's TAVI warned that I might lose interest in certain activities, though I continue with my main one (local military research) with the same enthusiasm. I made a brief return to environmental activities before fatigue arrived, and when I look at the teams' activities I don't feel that I'm missing much. I'm approaching the time of year when I dig out 1,000-piece jigsaws, but don't feel much enthusiasm.

I've long had problems with missing the point and poor short-term memory, and the latter has worsened recently. I did have a couple of simple cognitive tests last year (including reciting the months of the year in reverse order), but passed both with flying colours. And two days ago I had more success than usual with the Daily Telegraph puzzles. I suspect that most of my decline is down to old age.

I don't feel that my personality has changed that much: I still get cross about anti-social behaviour (which has increased in recent years) and am courteous to others, especially NHS staff, making a point of thanking them.

But I'm using up a lot of nervous energy and patience with NHS Haematology (and once gave vent to my frustration). Prior to my TAVI I had Cardiology contacts to approach if need be and weekly monitoring, but now I don't even have a nominated Haematology nurse I can talk with about my fatigue. If I had one, I would have been saved some distress and perhaps a visit or two to A & E; the cost to the NHS of the latter and tests far exceeds that of, say, 20 minutes of chat.

[nextadventure]

Hi. If you had open heart surgery with bypass you could have had effects akin to a stroke... look up 'pump head' or 'pump head syndrome'. You may have had a separate stroke due to any associated issue (being on blood thinners/ producing clots (emboli) on the valve/ other arterial blockage, etc.) As others mentioned, you may have unrelated brain disease occurring. There's even a possibility of other illness affecting your brain, and some of the changes you have noted could also be due to depression - a common effect after major heart surgery. In any of these situations it is vital you are investigated for cause, and then given advice on prevention (of further episodes or decline) or treatment, and/or cognitive rehabilitation.In my case, post aortic valve replacement by OHS twice, I had an episode of unilateral arm symptoms and also marked word-finding difficulty. A brain CT showed a small stroke. I had to retire from work due to this - as I was a doctor. Pretty devastating. However, since then I've had plenty to occupy my mind, including learning foreign languages (prior to travel and for interest). My word recall has improved significantly. And I have also, to my relief, found I don't have frontotemporal dementia, unlike my poor younger brother.

So, press on with getting yourself checked properly and I hope you eventually have positive outcomes. Best wishes

[AH31 in reply to nextadventure]

Thankyou for your kind reply.

I will make a note of everything and speak to my consultant. I have improved since the first month after OHS but I know I’m still not 100% as I was prior to the operation.

Physically I feel ok, but my brain doesn’t appear to be. I have to really focus on my screen at work, using spell checker abit more often as I did before, sometimes I can hold a con and other days not as much. With the emotions I think some is done to hormones but I know I wasn’t as agitated but little things, again I am getting better and love listening to music instead of getting dragged into conversations. I feel it’s easier than finding the right words and never known how they will come out or across .

[nextadventure]

Please let us know how you get on. If you can't see your consultant (cardiologist?) soon, possibly get back to your GP to start things rolling. All the best

[AH31 in reply to nextadventure]

Thankyou, I will write an email to the cardiology team. I am worried it may seem like it’s just me being silly but I know something isn’t right.

At work I have been spoken to about my reports, they aren’t as detailed as they were before the surgery. I also get a lot of headaches and try to drink more water.

[nextadventure in reply to AH31]

If you haven't already written the email, be sure to simply and clearly write the changes you have noted, with an approximate time frame, since your surgery. Don't try to explain them or apologise in any way (you are not wasting anyone's time!) At the start of the email list your identifying details, hospital number, contact details, treating doctor(s) and date of your surgery. At the end make a direct statement and request. E.g. 'In view of these significant changes that appear to be a result of damage or disease in my brain (choose what you think is appropriate wording to summarise), I am requesting an urgent review...' or similar.Sorry if I'm teaching you to suck eggs - just that if medical practitioners or their representatives are overworked, they will want to see the nuts and bolts to make a quick decision, and want your ID and contact details easily to hand.

Hope it all goes quickly