Good news

[Cornishbeach]

Morning all,

Just wanted to share some good news 5 months post mitral valve repair. My latest echo showed an excellent result which is great news. So glad I went for it when I did and I feel very priveledged and lucky that the NHS were able to fix it so well.

I'm now able to stop the bisoprolol and the furosemide which is great and just remain on 75mg aspirin for a year post op.

I would like to say a big thank you to this forum. It helped me no end to get down on paper how I was feeling and asking those questions you feel awkward asking. The support from you all was amazing.

I know some of you have far worse conditions and outcomes than me, and my thoughts are with you all, but hopefully my posts have helped some people over the last 2 years.

Best wishes everyone and thank you again. x

[GardeningFlowers]

Hi cornish beach. Good to hear you are doing well. I am waiting for aortic valve replacement and it seems to be a long wait. Looking forward to being like yourself and feeling more like myself. Sending best wishes for you ❤️. This forum has been a great support for me too. Wonderful people on here.

[Larneybuds in reply to GardeningFlowers]

Hi gardening flowers....I have replied to Cornish beach but hope you don't mind me asking how long you have been waiting for your op now. I am apparently a priority after cancelled surgery before Christmas and am still waiting fir mitral valve replacement. Hope you get your date soon x

[GardeningFlowers in reply to Larneybuds]

Hi larneybuds. I got diagnosed in March and need aortic valve replacement and have severe regurgitation. Really affecting me now. Can't walk upstairs without suffering with severe breathlessness. Hoping not a long waiting list but it seems like a lot of people are just waiting. Hope you are keeping well. Liz❤️

[Larneybuds in reply to GardeningFlowers]

Hi and thank you so much for replying. Oh dear....I hope you get sorted soon. These waiting times are worrying and I don't know about you....even though I try to stay positive I feel like life is just on hold at the moment. I get breathless but the main thing I struggle with is how much my mobility has suffered. I just feel like my legs just arent working properly lol. I walk with a stick now for extra support. Upsetting as I was so fit and my diagnosis came as a complete shock. I thought I had problems with my thyroid!! I walk about as much as I can and do light exercise just to try to keep 'oiled' but I feel like I have muscle wastage. If you want to message at any time please feel free to do so...Always good to talk to someone in a similar situation to compare notes. I hope you are coping with the waiting and getting support. Here if you need a chat. Good luck with everything and please let me know how you get on. Thank you again for you reply xx

[GardeningFlowers in reply to Larneybuds]

Hi hearties friend. I think we are going through the same thing. I even had to buy a walking stick too. My mobility is shot. Have to lay down and rest more than been upright. Slightest thing I try to do wipes me out. Hope we keep in touch. Sending good wishes. Liz😊

[Larneybuds in reply to GardeningFlowers]

I have sent you a private message Liz x

[Laguna23]

Hi Cornishbeach

Really pleased to read your positive feedback as I am waiting for my mitral valve repair and am feeling all sorts of emotions. The medication you were on what specifically was that for post op? Does everyone need to have this? I have so many questions, hope you don’t mind. Currently my biggest stressor is the waiting for news of my OHS date. My cardiologist is apparently discussing my case at their JCC meeting this week, any idea how long after the joint meeting with the surgeon this normally takes for feedback? Thanks in advance and congratulations on you very positive outcome again, it’s so encouraging.❤️

[Cornishbeach in reply to Laguna23]

Hi Laguna23,The waiting is the worst bit. I felt my life was on complete hold. Couldn't book anything just in case - apart from not wanting to catch Covid. I completely empathise with you. Once you get the call your emotions change again - so glad it's happening but on the other hand OHS!

Hopefully by sharing my story you will see there is a good outcome and help you think positive.

I started showing symptoms in June 2020 and they found my regurgitation and prolapsed valve in the July - bit of a shock to say the least! I thought the palpitations were due to stress from work during Covid! They said it had been there for decades. I muddled through until I had my TOE in April 2021 and after that I started Candesarten and Bisoprolol which helped the palpitation symptoms and lowered the pressure on my heart as I was found to have moderate regurgitation at this point. Following an A&E trip for out of the ordinary palpitations in August 2021 I had a Cardiac CT which was all good (some great news that I don't have any coronary artery disease on top of the other issues). A follow up echo in October 21 showed further deterioration to severe so I was referred to surgery at Southampton. There is an amazing specialist mitral valve surgeon there so it was a postcode thing however I could also have gone to Brighton where there is another good one apparently.

In October 21 I had to start on furosimide due to increased breathlessness. This worked well. I went on the waiting list in November 21 and said I would do short notice! No point in waiting if there was an opportunity and I didn't want my life to continue on hold which it had been for the past 6 months as things got worse.

I had one phone call in late January to say yes but 10 minutes later no. Had an MRI to get everything checked out and ensure the palpitations weren't being caused by anything else (all OK). Given a date early Feb, got as far as waiting area for bed but then sent home - a bit traumatic but I understand there were people needing the bed more than me. Then got a date for end of Feb and finally got it done!

I count myself very lucky to get through the system quickly but things were deteriorating - apparently I was classed as fast tracked - meeting with the multi disciplinary team to decide where I fitted in the system (your JCC?) and a phone call 2 days later from the Cardiac nurses at the hospital with the decision. I think it depends on your local services. Do you have a Cardiac nurse contact at the hospital where surgery is to be done? They were very helpful and I was given their details when I went for the surgery referral. My cardiologist is based in one hospital and the surgeon in another.

I hope you get yours as quick. I have no other health conditions and I was technically a straightforward case to them. In and out in 5 days. I felt better every day and just took one day at a time.

So I continue now on Aspirin and Lanzoprazole (because of the aspirin). The Candesarten stopped after surgery but I continued on a reducing dose of furosemide as my left atrium was severely dilated with all the years of regurgitation stretching it and we needed to see how my heart functioned again following surgery. I started on 80mg post op and reduced it over the last few months. A reduced dose of bisoprolol - only 2.5mgs from 5mgs (to keep some pressure off my heart while it healed) oh and the all important Multivitamin with Iron Post op - I was anaemic for several months.

Hope that helps. Feel free to ask any other questions.

Best wishes x

[Larneybuds in reply to Laguna23]

Hi laguna23....really hope you get your repair soon. I am waiting for mitral replacement....if you want to chat or discuss anything....please feel free to message. Am in a similar situation with the concerns and waiting. Always good to hear from people with similar diagnosis xx

[Laguna23 in reply to Larneybuds]

Thank you so much for reaching out Larneybuds. I really do appreciate it, it’s so reassuring to know we are not alone in this situation and that we have people who completely understand our situations 😘

[Laguna23 in reply to Larneybuds]

Hope you get your date really soon too x

[Larneybuds]

Good morning. So pleased you are doing well and long may you continue to do so. I am waiting for mitral valve replacement due to severe regurgitation. Op cancelled night before surgery before Christmas...was put as a priority on the waitlist and am still waiting for date!!....this is for apparent urgent surgery!!. I am so pleased you don't have the horrible wait anymore wondering when it will happen. I am remaining as positive and I phone on a weekly basis but so far just lots of excuses. Your post makes me feel hopeful. Good luck and I hope you just continue to feel the benefits of your op x

[Cornishbeach in reply to Larneybuds]

Hope you get your date soon. I would ring your cardiac nurses x

[Larneybuds in reply to Cornishbeach]

Thank you and for taking time to reply. My cardiac nurse is based at the hospital where I was diagnosed and it comes under a group of teaching hospitals so the operation is at a different place. She told me she does not get any notification of when operations will be and didn't even know my allocated consultant!!. I am in touch with the waitlist team and with the patient liaison service and will be calling again this week being a lot firmer in my approach I think. The excuse has constantly been staff shortages so I will see what I am told this week. Thanks again for your kind reply x

[Adhtz21]

Great result all round. Best wishes for the future.

[SuperFluff]

That's excellent news! So pleased for you. Good to know that you can give up the tablets too. As someone with a defective mitral valve, which will need surgery in the future, it is reassuring to read stories of people successfully coming through this. I wish you all the very best for the future.