Another update on 5th heart surgery….

[Clairealou]

Ok, well I’ve now been here for almost 2 weeks and hoping to be discharged today. Thought I’d give a bit more of a comprehensive update (although don’t want to scare anyone!) Quite a few problems with various levels (INR, potassium and hemoglobin) which has lead to several blood transfusions and potassium IVs. Still lots of fluid on my legs as they have had to restrict my diuretics due to the potassium issues but this will come off in time once I’m home. However, probably the main positive here is that none of the above has made me feel unwell and I feel as I would expect to at this point. So, having now tried several sternotomys and an endoscopic, what are my thoughts? I think the bruising is probably more widespread with endoscopic funnily enough but the pain is probably a bit less. The main positive is the freedoms of movement which you have (albeit it rather gingerly at the moment!) with endoscopic. You’ll find that the pain isn’t that bad, it’s the general aching in the back and shoulders from lying in bed which is certainly eased by moving around. Will give another update in a few weeks unless anyone’s fed up with my long rambling posts! However, hope they help with anyone awaiting redo surgery

[080311]

Morning Clairealou,

So glad to read such a positive read this morning. Any of us who have had biological replacement valve always as that little niggle at the back of our minds that at some point we will need another one.

Keep letting us know how you are getting on, hope you get home soon.

Wishing you a great recovery.

Best wishes Pauline

[Clairealou in reply to 080311]

Thanks Pauline. Yes, I still have a biological aortic valve which so far, is OK but it’s over 9 years old now so will need doing in the next few years. However, they are looking to do that TAVR so hopefully, this is the last big surgery I’ll have. Fingers crossed!

[Hidden]

Hello

No one could ever get fed up of reading such positives posts updates and information that you give to all those on here that might be in a similar position

I hope you get home soon and look forward to reading how your progress continues

You are a very strong lady x

[francesw47]

I am still in awe of your bravery! Lying in bed is ghastly isn't it? I had 5 days in bed (had a balloon pump and then IV inotropes) and felt dreadful when I was allowed up. I was shocked at how quickly decompensation happens - but it also did not take too long to get back to walking - well pottering - around. Are you back in the ward or still in high dependency? Hope you get your discharge today - and please keep us up to speed with your recovery. I am so pleased to read about your progress. Frances

[Clairealou in reply to francesw47]

Thanks Frances. I’m on the main ward but my discharge was delayed again due to a low INR so fingers crossed for tomorrow x

[Flowerfanatic]

Hi 👋🏼 Claire - your post is so positive especially after the length of time you’ve been there and all the treatments you’ve gone through (not to mention the actual surgery itself). Do hope that maybe you’re waking up this morning in your own bed at home? Thinking of you and take care. Sarah x

[Clairealou in reply to Flowerfanatic]

Hi Sarah. Unfortunately not. Still in hospital. Waiting for my INR result today and if it’s now in range, I can go home. Fingers crossed!

[Flowerfanatic in reply to Clairealou]

Keeping everything crossed 🤞🏻 for you ! X

[Hidden]

Hi Claire, I've not been on for a couple of weeks so not seen any updates. The INR can be frustrating but hopefully it settles down and you can get out today. Everything else falling into place?

The INR reminds of my last time, I was in for a few days extra whilst they got it up to the right level, finally gets there and they tell me I can go home, great, a couple of hours prior to being released along comes the guy to check my Pacemaker.

Oh he says and goes away....A doctor then comes along to inform me that the leads had come loose during the surgery and not picked up until this last check. Another week spent in hospital, INR had to be lowered again, PM wiring changed, which took longer than fitting the PM in the first place, and then getting the INR back up again. 😂

Best wishes....

[Clairealou in reply to Hidden]

OMG! What a nightmare! It does seem that as they sort one thing, it creates issues with something else. Guess for us, we’re a bit more complex and so they need to get it right. However, have now been told I can probably go home today.

[Hidden in reply to Clairealou]

It's just as well I'm pragmatic and learn to laugh at things.Yes, complex and special, I think that's why they like to keep us in that bit longer.

There was a time before I had any surgeries at all, that junior doctors used to literally line up on my cardiology appointments to listen to my AV as it had such a unique sound to it. One of those doctors eventually became my cardiologist who I've been seeing for 25 years. Now I've just got bog standard mech valves that go clickety-click. No fun in it anymore😃

[Hidden]

Still can't believe you've had 5 of these levels of operation. I think you are my hero - as the saying goes.

I'm glad all is going well and you are seeing some improvements, I wish you all the best in your efforts to get home and start the recovery in ernest - will never get bored of your posts

👍

[Clairealou in reply to Hidden]

Thanks Brand. However, have just read your posts….wow! You have been through it haven’t you. I’ve had various complications along the way but nothing like that. It can be so isolating after you have been through what you have as let’s face it, the people you love around you, don’t actually know how it feels. But, you have everyone on here, as do I and between us all, we can do what we can to encourage each other and pick each other up on a bad day. Maybe at some point, the BHF should organise a few socials around the country so everyone can meet each other and swap stories as no one will ever understand us like we do. Thank you for your kind words and support and stay in contact. Xx

[Hidden in reply to Clairealou]

That would be fun - you'd have to be top of the table with 5 surgeries 😉

I have a vision of people sitting in a circle and taking it in turns standing up and saying

'My name is ... and I survived OHS' - then retelling their experience 😆 to agreeing nods and shakes of heads.

Sorry if that sounds like a warped thought - humour of various types has helped no end post op, it certainly amuses my 'managing Cardio team'.

I can also be sensitive to others who do not take to such humour - but I prefer a glass half full attitude if the optioin is their.

[Clairealou in reply to Hidden]

I quite agree!