New person alert.....niggling issues since AVR ....should I be worried?

[Delilahh74]

Hello folks,

Just dropping in to say hi, and to get a little bit of feedback if that's ok.

A little bit of background and I'll try to keep it brief (apologies if it becomes long though). I was born with a hole in the heart and at the age of 11, I had OHS and had a VSD repair done. Fast forward 28 years and I started feeling like my heartbeat was going a bit weird - diagnosed in 2014 with Paroxysmal Atrial Fibrillation. I was kept an eye on, but due to several stresses in my life (moving away, toxic relationship etc), I lost tough with the cardiologist. Eventually moved and got settled and after a little while I got referred to a new Cardiologist who again decided to keep an eye on me. Last year after having a chat, he told me that they would be looking to do an Aortic Valve replacement as mine had a severe regurgitation (approx 3-5 years I was told), after the MRI and a TOE I was then contacted again to say that I would need to have this done sooner rather than later and on 4th July (9 weeks today), I went under the surgeons knife for further OHS at the age of 46.

I had the Inspiris Resilia Aortic Valve put in, and they did a graft on the aortic root, and did a repair on the mitral valve. I also had a chest drain whilst I was in as there was a litre of fluid retained in the lung.

I had an online appt with Cardiac Rehab a couple of weeks ago and she asked me to send some readings to her, which I duly did, but noticed that out of 5 readings, only 1 had my heart rate at below 100bpm. It's something I'd noticed, but I had hoped would settle down. It's not freaking me out (otherwise it'll go up even further), but it's a bit of a niggling worry I do have.

The other thing that's worrying me a bit too is when I take a deep breath in, I get a little shooting pain going across the left hand side of my chest, just above the boob area. And the last thing is the very top of my scar- just one area is raised a little bit and feels sore first thing in the morning.

Are these three things normal? I don't want to waste the cardiologists time. I've got a face to face with the Cardiac Rehab nurse on Thursday, and a video call with Harefield Hospital at the end of the month. I'm finding all this quite difficult at the moment too with online/telephone as I also have a hearing impairment.

If you've read this far, thank you and I'm so sorry for waffling on!

xx

[woodlandwonders]

Hello,

None of that was waffle x

I'm still in the watch and wait group but there are lots on here who have had the operation and will be much better placed to answer you.

It's great that you are seeing a nurse on Thurday and I would definately tell them exactly what's been going on. You are not wasting their time.

You can contact the BHF nurses for an online chat before that though. They are amazing.

Take care

[Delilahh74 in reply to woodlandwonders]

Thank you Woodlandwonders - I'm going to write it all down and talk to her. My next appointment with Harefield is yet to be fully arranged, they wanted to do a telephone appointment, but I don't get on with telephones very well due to my hearing (was awful in hospital with everyone wearing masks etc), so I'm hoping for an online - at least no ones face is covered.

[woodlandwonders in reply to Delilahh74]

It's awful for people with hearing impairments at the moment. There are a few members on here who have really, really struggled to get treatment as they are just being offered phone consults. I have no hearing in my right ear and down to half In my left, so I do understand.

Hopefully from the other peeps posts you are feeling a little more reassured.

Take care

[andy110519]

I've read longer posts than yours, don't worry about that. I had an AVR & ascending aorta graft last May at the age of 49 after suffering an SCA, didn't know I had a dodgy valve!

I remember afterwards when still in hospital my HR was about 90, whilst doing nothing & the staff weren't concerned. I was put on Bisoprolol, or whatever it is, 1.25mg I think till January to give everything time to heal & settle down.

My issue when lying down was involuntary muscle spasms in my chest for 5 to 10 mins, nothing major but nothing I had experienced before.

They gave me the impression in hospital that 6 months should see me pretty much back to normal, but everyone who has gone through similar says 1 to 2 years for a full recovery, I still have niggles now.

Write down a list of the things that you have concerns about or just want to know more about and take it with you to your appointment so that you don't forget to ask something, that's what I did & good luck with your recovery.

Andy

[Delilahh74 in reply to andy110519]

Thanks Andy, that's very re-assuring. My HR was around 95-100 when resting in hospital, if I got up to walk to the loo or something, it shot up to over 120 causing the alarm on the monitor to go off, but as with you, they didn't seem worried.

I'm also on 1.25mg of Bisoprolol. I'm still feeling so drained and exhausted though. I told my Dad that I wanted to be the 11 year old again who had surgery, 2 days after the operation it was like someone switched a light on in me - I need to remember I'm 46 now, so mine is more of a dimmer switch

[andy110519 in reply to Delilahh74]

It's a slow recovery but you do feel the improvements, I still had to have a lie down in the afternoons 3 months after my surgery. I can now do a 5 k faster than just before my surgery so things do get better, just slowly and listen to your body.

Andy

[Delilahh74 in reply to andy110519]

According to friends, I've got a lot more colour in my face now than I had before the surgery, so I guess that's one thing. I was never that active before, and that's something i'm hoping the Cardiac Rehab will help with.

[080311]

Hello

9 weeks isn’t very long since your op, I had Aortic valve replaced and bypass 4 years ago, scar could be you have been laying at a funny angle through the night, remember your sternum is like any broken bone and needs time to heal. 4 years on and one side of my sternum is higher than the other can’t see it to look at but can feel it when you touch it.

The shooting pains, I had pain like someone had pulled an Elastoplast off for a little while, though I put that down to where they had harvested my artery from my mammary one. Left side of my chest was numb for about 6 months.

Write everything down that you want to ask about, when you get to speak to someone.

I wish you a continued great recovery,

Best wishes Pauline

[Delilahh74 in reply to 080311]

Thanks Pauline. Sorry for the late reply. I've got my online appointment with Harefield on Monday morning, so I'll make sure I've got a list of the things worrying me. xx

[tapfoot]

Hi Delilah,

Welcome to the group and hope this helps. I'm just a couple of weeks behind you after my AVR. I'm older than you (60) but have experienced some of the same problems. The breathing -in stabbing pain is awful and for me became so severe that it caused my oxygen levels to drop and an a+e visit. The pain was more widespread across my chest and into my neck and shoulders too. Sorted with some liquid Oxycontin which I'm still taking a reducing dose of as I couldn't function with the level of pain. They said at the hospital that pain relief is vital so you can breathe deeply to help repair and recover. My GP had just suggested I take an extra codeine. Don't be afraid to ask for something stronger if you need it.

I also have the tenderness and raised area at the top of the breastbone. From what I have read it is normal for this stage in recovery but really irritating and painful some days. Also I feel my scar has 'tightened' recently. Have you noticed this?

Sorry I can't help with the heart rate. I'm not monitoring mine and haven't been asked to. I did start the cardio exercises by following an online video a week ago, and it has really helped. I was honestly scared at first but pleasantly surprised that I could do the full 20 minutes ( I don't even run for a bus normally) I've done some short walks too which gave me confidence.

With best wishes for your continuing recovery.

[Delilahh74 in reply to tapfoot]

Thanks Tapfoot!

Ref the scar tightening - yes, but only right at the very top. There's about 2 inches of it which feels very tight. I've started putting bio oil on it now to try and help, but it feels sore and tight first thing.

Hope you start to feel better soon xx

[Mikedabike]

Hello and thank you for your post. Your body has undergone a major upheaval with the OHS. After the operation everyone heals at different rates, and have a myriad of different issues to deal with. Although the current lockdown is making face to face GP appointments a lot harder, you should find that your GP will have flagged up your recent surgery and ‘should’ be very receptive to any calls that you make to them. I would not shy away from contacting either your GP, the consultants team or the very helpful cardiac rehab team with any concerns. Many things do settle down over time, but do not be afraid to air any of your concerns to them. Good luck in your progress and healing.

[Delilahh74 in reply to Mikedabike]

Thank you Mikedabike - I'm writing a list down of things to discuss.

[Pix_Morris]

I am 52 and 4.5 months out surgery at Harefield and I am still very conscious of every change in my chest and any unusual pain around my scar. I would recommend discussing your issues with the Rehab guys, it’s what they’re there for but be reassured by this and every other comment. It’s early days and there will be good days and bad days. Good luck

[Delilahh74 in reply to Pix_Morris]

Thank you Pix_Morris