I had my av replaced a month ago - British Heart Fou...

British Heart Foundation

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I had my av replaced a month ago

bee862 profile image
21 Replies

Hello everyone I finally had my op.

I have some concerns. So far everything has gone to plan.

But I still have palpitations and pain in my left arm. I still get some symptoms I had before. I have been told that it will take about 6 weeks to feel better.

I’m terrified I’m not going to feel better and was wondering if anyone else still felt poorly after there op. Is so hard as you don’t know what to expect.

Thank you for reading

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bee862 profile image
bee862
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21 Replies
XlMardyBumlX profile image
XlMardyBumlX

I am 5 weeks post op from aortic valve replacement.

I still get quite breathless from slight tasks, get dizzy spells like I did prior to my op and I am still in quite a lot of pain in my back and chest.

As worrying as it can be, I have been assured that this is just normal parts of the healing process.

Like you I am worried about it but know you aren't alone! :) xx

bee862 profile image
bee862

Thank you so much for replying.

It is so nice to know I’m not alone. I was really thinking I will never feel better. I also get dizzy. Do u get a pain in ur arm. My back is killing me. What do you use for the back pain. I use roll on deep heat.

I had my op 4 weeks ago yesterday. How is your cut healing. Mine opened at the bottom but the top has closed okay.

Thank you so much for getting back to me

Keely

XlMardyBumlX profile image
XlMardyBumlX in reply to bee862

Its not a problem!

I get an odd numbing sensation down my arm from time to time which is quite weird!

For my back I'm using deep heat, taking paracetamol every 4 hours and using a hot water bottle, its helping to some extent but I really struggle pain wise in the morning and at night! So I feel your pain :(

Strangely enough mine also opened at the bottom!! I've had a bit of leaking from the bottom where it opened and a bit of infection. I still have a bit of a hole there but I can see that its healing very slowly. The rest of my wound is all scar now apart from a little bit at the top as well as the bottom. But overall I'm happy with how neat it is!

Did you get any leakage at all when it opened??

If you need anything dont hesitate to message me! Xx

bee862 profile image
bee862 in reply to XlMardyBumlX

That’s strange I also feel worse in the morning and at night the pain when I first get out of bed is horrible.

Oh no. Is your hole big ( that sounds so wrong lol). Yea mine leaked it still is. I’m going doctors every week to change the dressing. She said it will take like two weeks to close up. I can’t see it myself it don’t seem to be closing so far. Makes me feel sick.

Thank you so much. If I can help you in anyway just ask.

Keely x

XlMardyBumlX profile image
XlMardyBumlX in reply to bee862

I'm glad I'm not the only one honestly! Yeah i really struggle getting out of bed because of the pain so i sympathise!

Hahaa very wrong 🙈 it's not huge, i'd say about half a cm wide and the same deep, but mine is also still leaking. Its gross isnt it haha! I dont have a dressing on mine now though thank god (i had an allergic reaction to the sticky part! Xx

bee862 profile image
bee862 in reply to XlMardyBumlX

Mine is about 1 1/2 cm I think it’s not small. I wonder why it opens maybe it’s because it’s sort of where you bend. it is so gross. Makes me feel sick haha. The sticky bit irritates my skin I was a mess when I come out of hospital. Lol.

I’m so glad to be able to talk to someone in the same boat. Makes such a difference. Sounds like you are having most the problems I’m having. You poor thing lol xxx

XlMardyBumlX profile image
XlMardyBumlX in reply to bee862

Oh wow really?! I did wonder myself if bending had something to do with it but wasnt sure!

Yeah! I had a perfectly square rash left where the dressing had been! 😂 so i decided no more of those!

You definitely aren't alone so I'm glad you feel that way! I'm glad i've found someone with the same issues too! I thought i was the only one 😂 xx

bee862 profile image
bee862 in reply to XlMardyBumlX

Yea it’s really horrible. I couldn’t bare to look at my scar so I have only just took the dressing off that about a week ago. I had staples and it looked horrible. Like some thing out a horror film lol.

Aww bless you that’s what I get. But I rather have the redness than look at it haha.

I’m so glad too. It helps so much. I was thinking I was the only one.

I’m here any time. Feels good to talk about the worries xxx

XlMardyBumlX profile image
XlMardyBumlX in reply to bee862

Wow you had staples?? They must be painful :( I managed to get away with dissolvable stitches and surgical glue! And thicker stitches where my drains were.

But i can still feel all the stitches on the inside, its disgusting!!

You too! Im always on my phone or laptop at the minute so never far away if you are worried about anything hahaa xx

bee862 profile image
bee862 in reply to XlMardyBumlX

They really wasn’t painful. I was so scared to have them out but they didn’t hurt at all. I had stitches by the drains.

Aww I know. One of the inside stitches is poking out through my hole. Haha. It’s horrible. It’s a horrible feeling isn’t it.

Thank you. I’m just the same. I still can’t really do much coz I feel poorly. I get very dizzy. I’m wondering if it’s one of the medicine that I’m taking. Feel like I have a fuzzy head a lot. If u know what I mean lol xxx

XlMardyBumlX profile image
XlMardyBumlX in reply to bee862

Really?? I wouldnt have thought they would have been so easy to get out! I was more paranoid about the drains and the pacing wires 😂

I had a stitch that had popped out as well so they took it out (felt minging!)

I know exactly what you mean hahaa! I dont feel poorly, but i dont feel right if that makes sense? And im sooooo tired all the time! Xx

bee862 profile image
bee862 in reply to XlMardyBumlX

Oh I know. Didn’t it feel strange when they took the drains out. Didn’t like that. I still have my pacing wires. They left them in to long so they had sort of started to take root so they just trimmed them 😂.

Oh bless you. I wonder why they haven’t took mine out. My hole mite heal if they did.

Omg don’t I’m so tired it drives me crazy. I’m sitting there and my eyes are rolling and I have only been up a few hours. I definitely know what you mean I don’t feel right at all. Are you on a lot of meds.

What valve did you have

What hospital did you go to.

Keely xxx

XlMardyBumlX profile image
XlMardyBumlX in reply to bee862

I honestly think the drains were the worst part! Hahaa! Oh god really?! I didnt know they could leave them in, I'd of cried 😂 have they not said anything about them just being there??

I'm mainly on painkillers now; codeine, paracetamol and oromorph when needed, a water tablet and another tablet for the fluid that i had round my heart (not going to even try spell it!!)

Because of my age (i'm 22) I had the ross procedure done. (Just incase you dont know, they put my pulmonary valve in place of my aortic valve and then get donor tissue for the replacement pulmonary valve) The pig valve would have only lasted around 5years because of my age and the mechanical one would have made it quite difficult to have children. So i decided on this one because theres no tablets and it has the potential to last a long time, my surgeon knows someone who has had hers for 35 years!! And i have found a few people on here who have had theres for 10-15 years so thought it was the best option!

What did you have??

I was at the Queen Elizabeth Hospital in Birmingham. I'm from north wales but liverpool and manchester dont do congenital heart surgery any more so that was my closest!! Where did you go?? Xxx

Fredders profile image
Fredders

Hi Keely

It’s early days yet. I had bad shoulder and back pain for about two months and still get the occasional pains there, in my arm, my breastbone etc and I had my AVR last November. I also still get breathless, more so when outside in the cold.

If you are at all worried about the pain and palpitations give your cardiac unit a ring, I found them very helpful, either that or go to your gp.

It does take quite a while for everything to settle down after such invasive surgery - just think what your body has been through. Don’t worry, you will get there - I’ve already been through it once, so I speak from experience 😺

Wendy

bee862 profile image
bee862

Hello Wendy.

Thank you for your response. I’m glad to hear that I’m not the only one that feels this way. I get very scared. The whole thing sill scares me silly 😀. I did talk to the hospital about how I was feeling and they said it’s normal. Think I thought I would feel better after the op.

Thank you again

Keely

MKB38 profile image
MKB38

Me too. My AVR was in November. I thought I was doing great, no pain etc.wound healed perfectly. I've had 8 weeks rehab and back at work part-time. But I didn't feel well yesterday so took my BP and it was 202/90! What's going on? Needless to say I'm seeing my GP this morning. Good luck to everyone, hang on in there, it does get better. X

Numberone1 profile image
Numberone1 in reply to MKB38

I hope you’re ok. I’ve chatted before with you and have found you’re recovery very helpful in my fears. Keep us informed and I’m sure it’s a simple side effect.

MKB38 profile image
MKB38 in reply to Numberone1

Thanks, it seems that is the way it goes sometimes. It's frustrating that I seemed okay one day, and not the next. I'll let you know what he says. I suspect I'll need some meds. All I take at the moment is dispersible aspirin, but I do suffer a bit with high BP. Thanks for your concern, it's always good to share. Xxx

bee862 profile image
bee862 in reply to MKB38

Aww I do hope you feel better. It’s so disappointing when you feel poorly after everything you have been through. I take lots of tablets but they are hoping I will come off most of them. I have my fingers crossed for you. Xx

bee862 profile image
bee862

Haha no they just said they won’t cause me any problems. Don’t even know where they are I just know they r there lol.

Oh I see I have heard of that one. Think it was someone on here had it. I’m on a few tablets but they are hoping I won’t be on any within a year.

I am 31 so I was on a trial for young women. I have a human valve that has been treated so once it was placed in me my cells would completely take it over so it would be like my own.

It’s for the same reasons as you really. No blood thinners and I can have children. It’s also supposed to last longer.

I was in the royal Brompton hospital in London. I was lucky it’s not to far from my home.

Did you wait a long time for your op xxx

Larneybuds profile image
Larneybuds

Good morning....I am 16 months post surgery. I still get an occasional feeling in my left arm...can only describe it as a twisting of the muscle at the bottom of my arm...had it quite frequently just after my op but it has got less and less as time has gone on. I also had infection and opening on my wound and it caused some scar tissue that granulated so I still have a few problems but the doctor said it's nothing to worry about and it will eventually heal over. Apart from that I'm getting on ok but it has been a slow process. Wishing you all the best x

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