highburyted

[highburyted]

hello everyone, I’m new to this site. I’m waiting for an aortic valve to be done and the wait is terrifying, breathing wise. My brother has said I look like a goldfish.

I have COPD but my surgeon has said he’s done people with COPD before and all were successful. He’s doing it via keyhole surgery

However that doesn’t really help my mindset

I’ve been looking for someone who has my conditions to see how they got on.

thanks all and try to keep well

highburyted

[Ageingfast]

welcome on board highburyted

By far the worst bit of a replacement valve is the waiting.

I was in a state and a half, but as soon as I went through the hospital doors the anxiety melted away.

The convalescing can be long, but then we get our lives back.

Best wishes

Sooty

[highburyted]

thanks Bekind28, anything to put my mind at rest would greatly help- I know the surgeon I’ve got is very good but I keep saying “ you know your own body” He has already said he’s done patients with COPD and they are fine.

highburyted

[francesw47]

Hello Highburyted. Do you live in Highbury?? If so, you will most likely get your op in one of the big London Hospitals, which is good news (not implying that others are not good, just London has several specialist heart centres).

But I agree, waiting is by far the worst bit. Once you are in the hospital then you will be well cared for from start to discharge. I've had similar op - the biggest dilemma was the choice between tissue valve or mechanical. Key hole surgery is such a great thing. You won't have the full sternum healing to deal with and your stay in hospital will be shorter.

But the wait.....the mind goes to places you really want to avoid. In order to keep myself from worrying I spent the time getting ready. I made myself really busy - did all the lifestyle things suggested (diet, exercise until I couldn't and so on - cooked for the freezer so I didn't have to when I got home, made a will and sorted out Power of Attorney , which had been on my 'to do' list for ages, asked questions about what I might need afterwards. I remember watching loads of daytime TV when I became les able to rush around and made a vow never to do so again......but distraction did help. But the terror returned when I got the call from the admissions manager to give me a date....and then it was all over. Honestly, hang in there...this really is the worst of times.

Apart from the fear, how are you generally?

[highburyted in reply to francesw47]

thanks for your comments, apparently my MP has asked for details of my case, so we shall see.

I’m not in Highbury, just an ex season ticket holder, my op will be at Basildon in Essex

As I said what would really calm me down would be to speak to someone with COPD to see how they got on, but all of your experiences are helping me

highburyted

[Cat04 in reply to highburyted]

I think there is a COPD/AVR patient in our Facebook group (as below) who would be able to help.

[highburyted in reply to Cat04]

I’m not on Facebook unfortunately but my email is ok for contacts

Thanks

[Pjaze]

Hi, I had heart valve replacement last year due to congenital valve condition. It was full open heart surgery and I was back at work 4 months later.. you just have to really take care of yourself in recovery and keep on moving. I had to wait over 2 years but it was COVID backlogs and second wave that pushed it back more. Sometimes you just get so sick of waiting that the date for the op is such a relief. The surgeons will know but I tried everything I could within my limitations to get match fit. It helped me so much in my recovery. Stretching, squats from a chair, anything to get that bit stronger helped . Let us know when you finally get your date. It's just over 12 months for me and I'm feeling strong and healthy and have a little dog to keep me walking. Xx

[Cat04]

You may like to join the Facebook groupUK Aortic & Heart Defects Pre Surgery & Post Surgery

It's a small, friendly, supportive and informative group of people who all have experience of what you are going through.

You would be most welcome. 😊

[Astronomyrules]

Hi and welcome. I'm afraid I don't have COPD, but I have had the keyhole surgery to replace my aortic valve. I too was very nervous as I have a number of other medical problems. When I was admitted I was visited by the surgeon and the anesthetist who discussed the procedure with me in detail including how the would approach it in view of my other problems. We are lucky in being offered key hole. Whilst still a significant op the recovery is so much quicker. Two days after my release from hospital I was celebrating Christmas with my family, with just paracetamol as a painkiller, although no one was allowed to make me laugh as my ribs hurt . No comparison to how I felt after my OHS some years before . Good luck on your journey. My op got rid of my breathlessness. Hopefully it will ease yours a bit too.

[highburyted in reply to Astronomyrules]

thanks for that Astronomrous

[Elsabounre]

Hi Ted...so we followed until your surgery and going home..you had sone issues...and since then heard nothing..I sincerely hope you are recovering and doing better..if you can...let us know how you are doing..all the best..

[highburyted in reply to Elsabounre]

Hi

I’m still on the planet, recovery has and is tough, but in saying that the hospital discharged me this week because they are extremely happy with what’s going on, so it looks like it’s mainly my mood which has to lift and I’ve got to move more which I’m trying to. I’m hanging in there

highburyted

[Qualipop in reply to highburyted]

Lovely to hear from you. I was wondering how you were getting on. Great news that you've been discharged although I think for my own peace of mind I'd like a check up after maybe 6 or 12 months. Well done- it's not been easy. Have you had rehab?

[highburyted in reply to Qualipop]

Rehab only on the telephone

[Qualipop in reply to highburyted]

Oh for goodness sake.

[Snowdrops_17 in reply to highburyted]

Oh Really, that's ridiculous! 👍 But strikes could have been the problems😑❓

I hope you are recovering well highburyted 👍🥰🙏

[Elsabounre in reply to highburyted]

Good to hear from you..keep up that recovery plan....best of luck and keep in touch...