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(7 Posts)
Jux Tue 13-Jan-15 16:50:26

Had a bit of a shock this morning. Had my annual heart check, and was told I will have to have open heart surgery - but not yet! If I didn't have ms, then he'd be doing it now, (meaning probably in about 6m) but as I do, he'll do it in about 2 years; something to do with having a look at arteries while he's in there rather than opening me up twice, and memory problems sometimes caused by heart/lung machine?

As you can tell, I am now not 100% sure of what he said, and clearly didn't ask enough questions.

I mainly remember thinking something about 5% being good odds, so I may have misunderstood something really badly as that doesn't sound like good odds to me now grin

I am actually quite sanguine about it, so I would be really grateful if any cardio people could explain stuff to me (I know it's a big ask).

Thank you.

foolonthehill Tue 13-Jan-15 21:52:44

Hi Jux,

Not really enough info to go on here.

Is your long term heart condition a problem with a valve? This would explain looking at the arteries at the same time and considering whether they need replacing/stenting etc.

It is true that being on bypass for heart surgery was thought to be linked to memory and cognitive loss however my recent reading suggests that this is more likely to be due to the underlying arterial disease than the by pass machine...however short term problems are more common and clots and bleeds are slightly more likely for a period after being on H/L bypass.

5% might be related to all in op and post op complications......

The good news is that these days when specialists write to your GP to tell them the plan you would usually get a copy...if you don't give it a couple of weeks and phone the secretary who should be able to send you a copy....or request a summary in writing of what is proposed.....

then come back with the next lot of questions!

Jux Wed 14-Jan-15 08:35:44

Thank you, Fool.

I have a leaky valve and am checked annually. There is no actual damage yet but some stretching of the heart.

My younger brother died suddenly 5 years ago as he had a bicuspid valve which gave out, so I got myself checked to see if any of mine were bicuspid too. They aren't, but they did find a leak, so it was worth doing.

The leakage was described last year (saw a different doctor) as mild to moderate, but yesterday I saw the doc I usually see, who said he would describe it as moderate; nevertheless, it is exactly the same as last year - no better no worse.

What you say of the 5% thing does make sense and I think he said that 5% of ops don't have such successful outcomes or words to that effect, but as you can see my memory of it is flawed!

I do have some memory problems - lack of recency effect for instance - which are due to ms, but they are weird and specialised things. It's not like dementia or just old age type stuff. Anyway, it's reassuring that you have read that it is more likely to be arterial disease. There has been no mention of my actually having arterial disease, just that they'll have a look around and act accordingly if they find it. I'm happy with that (I think!).

I have already made an appt with my gp for a couple of weeks' time as I had to anyway due to a recent change in ms medication which I have to report back on (and have my annual thyroid level check). Sometimes I feel like I live in the surgery/hospital grin

Thanks so much for your time. I shall definitely come back when I see the letter.

foolonthehill Wed 14-Jan-15 13:37:51

no problem!

best wishes

Jux Fri 23-Jan-15 09:51:38

Hi again!

A copy of the consultant's letter arrived yesterday and I have an appt with my gp in early Feb, whose receptionist rang this morning to make an appt for bloods. This is a synopsis of the letter.

I have mod to severe aortic regurgitation, my LV diameter systole is 4cm. The examination is "more suggestive of" moderate regurgitation and the trend since 2010 is "subtle".

We are close to intervention. He has asked gp to prescribe an ACE inhibitor (this has been done, should be available at pharmacy tomorrow/Mon, something beginning with 'r'), 2.5mg for a fortnight and then double to 5mg after the bloods to see how I tolerate it. The doses are because my systolic is 105 (I know this is low blood pressure - not too surprising if some of it is leaking out!).

I am a good candidate for aortic valve replacement in spite of ms and mild memory issues. He wants to wait though, but hasn't said why in the letter.

I actually don't even know what questions to ask, though there is one over-riding everything - why can't I have it done now???

I do have some things which I'd just chalked up to more ms crap, but am wondering whether they may be consequences of this. Dizziness, faintness, tiredness and fatigue, always very cold - this winter has been dreadful for me and I've spent an inordinate amount of time in bed trying to keep warm while dh and dd have been saying how mild it was.

I am not overly worried, but do think that my quality of life would rise by leaps if those symptoms are due to my heart, if so then I really really really want it done this year!

Thank you for reading this, I know it's not easy to tell people bad news even on internet, but I don't really want any punches pulled.

noddyholder Fri 23-Jan-15 10:40:26

I have similar and am on irbesartan I have been on ramipril which I think is what you will be having and couldn't tolerate it but its a really good drug and it was just me I think! My condition is stable the left ventricle size has been the same since 2001. I am also on a drug to stabilise rhytmm as my heart can go a bit mad after certain foods or if I get exhausted. I have other health issues so no surgery yet but may have to if the aortic regurg worsens. Maybe the 5% refers to those where it doesn't work? I have a friedn with this who has had the surgery as has her son and they are both doing brilliantly

Jux Fri 23-Jan-15 11:48:55

Thanks noddy. I'm sorry you're suffering from this too! Glad you're stable.

I think the woman probably did say ramipril, it sounds vaguely familiar; I can be quite sensitive to side effects of ms medication (had a lot of fun with 'learning' to tolerate pregabalin over a few months; worth it though!) so I'm used to keeping a close eye on things.

Do you feel the cold badly? That's my most life-limiting thing. DH thinks it's down to my heart, but he knows nothing and grasps straws no matter how far-fetched they are. He wanted me to go to some country or other to be treated with goat serum as it 'cured' ms.

Very good to hear you have friends who've had the op and are doing well.

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