Mitral Valve Replacement

[LAF22]

In June 2024 I had a body MOT, bloods, BP, ECG, weight etc. I'm quite fit and rarely have any illnesses, except March 2024 I caught whooping cough, I was ill

2 days after body MOT I had my results, suspect atrial fibrillation, see GP

A second ECG with GP confirmed findings

Luckly I have private medical insurance and managed to see a cardiologist the following week. An ECHO was then scheduled which identified severe mitral regurgitation. I have no symptoms and was absolutely stunned at the findings.

To cut a long story short and many tests later my mitral valve was replaced with a bioprosthetic bovine valve 2 Nov 2024.

Operation went well, I was up and walking around on day 2

Day 5 Doctor identified heart block, needed a pacemaker so I could go home. Pacemaker fitter day 11 and I was released on day 14. Doc explained that the heart block should correct itself in the coming weeks and the pacemaker would become redundant, I have an appointment on 11 Feb to confirm this.

Totally unrelated episode took me back to hospital on 20 Jan, another ECHO confirmed I had gone into heart failure. EF prior to valve replacement was 57, two ECHOs after procedure confirmed EF as 50. ECHO on 21 Jan confirmed EF had dropped to 35

I'm now panicking, has this happened with anyone else please?

[bikebabe]

no - but there are similarities in our experience. There will be an explanation and likely it is a temporary albeit, very anxiety provoking, phase. Curious about the role of whooping cough as I had that too on top of pre- existing mitral valve issues and ended up with worsening symptoms for which I had successful open heart surgery and a shiny new bioprosthetic valve. However it also resulted in 4 in 1 heart block, LBBB, atrial flutter and scheduled cardioversion next week. I’ve been on digoxin for almost a year and none too happy about it. It’s just hard to get apptmts and answers with cardiology/nhs being under so much pressure.

[LAF22 in reply to bikebabe]

Hello bikebabe

Thanks for responding. Do you still have heart block ? I think mine may have recovered but I won't know for sure until I have pacemaker appointment in Feb, I do know from my apple watch that during the day my heart rate kicks in at a higher rate than my pacemaker is set at which I believe means it should have recovered.

Cardiologist has put me on a number of heart meds for heart failure which is tanking my blood pressure, it was 66/54 yesterday, take meds at 6.30 am, blood pressure doesn't recover until lunchtime. Waiting to see heart failure nurse.

Whooping cough, all I remember is I have never felt so ill, at this point I didn't even realise I had a heart valve issue. I had no energy, felt tired all the time, chest severely congested, I had a job to walk the dogs, had to push myself, if fact I found walking really fast cleared my lungs but it was a struggle. Doc asked about symptoms after AFib and mitral valve issues diagnosed, I thought it was all down to the whooping cough but maybe not, doc told me to slow my walking down.

I'm in the middle of cardio rehab now, but with heart failure chest is still congested and breathing not good still, pain when I breath in deeply. I'm wondering if I'm ever going to get back to normal.

I know what you mean about NHS under pressure, I am lucky enough to have private medical insurance, without this I would still be witing for my valve replacement, I was advised 11 month waiting list on NHS even though I had severe regurgitation and AFib, it's shocking. If feel sorry for people who are still waiting.

[bikebabe in reply to LAF22]

My GP practice misdiagnosed my whooping cough back in 2016 as asthma exacerbation so I went camping with family to a really remote part of France - no towns or medical assistance for 40 miles. Thought I was going to die. The only way I knew it was whooping cough was that I gave it to boyfriend who gave it to his brother who was diagnosed via private healthcare in Germany.

I haven’t yet had cardioversion and am hoping I won’t be in the population who need a pacemaker. I do have 4in 1 block which has changed from 2in 1 a few months back but am wondering if that’s medication related. Guess I could phone BHF for advice. Keep up with the rehab as you will start improving - small steps- and may take longer than you want. Celebrate every small improvement and learn to forget about when it’s not so good. I do tai chi daily and walk about 2-3 miles most days even when I feel least like doing it as I know it will perk me up again.

[DodgyTickerMum]

Hi, sorry to read all this but it sounds similar to my recovery post O.H.S for mitral valve replacement. 8 wks post op, my E.F was 35%. Prior to my surgery it had been 49%! To try and correct this, my Cardiologist then prescribed Dapagliflozin - which she described as a ‘miracle drug’ and indeed, it did increase my E.F to 45% by the time I was 6 months post op. After that, I seemed to be stuck at 45%, until I was prescribed Perindopril - which has finally helped increase my E.F to 48% - 20 months post op. I am now on 3 of the 4 pillars of heart failure meds and my most recent B.N.P blood results, are sadly worse now than before my surgery. This is something I am hugely disappointed about - having been through a long and difficult recovery. I (naively) just assumed my valve would be replaced and the rest would all fall into place. Clearly this isn’t necessarily the case! Having a H.F diagnosis hadn’t even entered my head!

I suppose, looking at the bigger picture, if my valve hadn’t been replaced when it was (as a bolt out of the blue - aged 49), I probably wouldn’t still be here now, worrying about numbers. We are lucky to have had our surgery when we did and to have been given a second chance. That’s the way I now view it. (It did take me about 8 months to get my head around having had the surgery and to come to terms with the enormity of all that myself & my family had been through).

I wish you well for your next appointment. Hopefully you can discuss suitable medications which may help your E.F improve. Keep going with the Cardiac Rehab classes, as exercise can also help increase your E.F.

Re your low B.P (I’m exactly the same - I’ve had an 65/39 reading earlier this week. Today’s was 69/37). I take the 2 worst offending tablets at bedtime (so then I’m laying down anyway. I then take the Dapa at lunchtime but with Fludrocortisone to help raise my B.P up again). Hopefully, you’ll find a combination that works better for you too. All the best going forward with your ongoing recovery. ❤️‍🩹