British Heart Foundation
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More advice please :)

So I recently posted about me needing my aortic valve replacing soon. I was born with stenosis, regurgitation and 2 heart murmurs. Im 22 now so I cant complain managing to go this long with only 2 operations to balloon the valve.

My question today is advice regarding what the pre surgery counselling is for? I have this on the 7th of Feb as well as an appointment at a pre surgery clinic? I'm not fully sure what these will entail.

Also, I'm starting to get quite nervouse at the thought of the removal of the pacing wires and drainage tube post op, is it painful? I'm quite worried about this part. As well as the ventilator, can you feel it in? I have the worst gag reflex ever so I'm nervous about this too!

You were all so great last time so i will greatly appreciate your help again!

Thank you :)

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Hi I had a mitral valve repair in 2007 and I am now on the waiting list for mitral valve replacement.

When the chest drains were taken out I was given gas to air to suck in, I remember some discomfort which was like a tugging sensation but it was over quickly.

As for the ventilation tube, you will be asleep when the tube is in and when they start to wake you up and know you can breath on your own the tube will be removed.

I am sure you will be fine, try not to worry too much you will be in good hands.

Best wishes

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Thank you for sharing that with me! I really appreciate it :)

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You'r welcome, anything else you want to know just ask and I will help if I can.

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Hi I had AVR last August, I to had concerns about being ventilated, I didn’t want to wake up with the tube in, and I didn’t in fact I wouldn’t have known I’d had one in, so don’t worry about that. I had 2 drains in plus pacing wires , the largest was removed not long after I woke up, some gas and airline tug and it was out , didn’t really hurt, the smaller drain and pacing wires where removed 3 days later, along with the central line in my neck, again didn’t hurt all over in seconds. I had no idea about my heart defect and it all happen very quickly, I was kept in hospital for 2 weeks before the op, I had all the required tests and the cardio nurses talk you through he before during and recovery. Because I was transferred to another hospital for the op I only got to speak to the surgeons the night before to discuss what Value , I am 57 and they said a biological value was best for me , as you are much younger they will discuss which is best for you . I was so scared which is natural, but it wasn’t no where near as dreadful as my imagination lead me to believe . Just passed my 6mths , been back to work for 3mths, scar has healed beautifully and top part that shows is almost invisible, so do use bio oil and gently massage this stops scar tissue from sticking and it feeling tight.i hope this has helped and if you want to hear more just ask. Take care Kaz💕💖❤️

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Thank you so much for everything you've told me! I've been so concerned about all the wires and drains so it's really appreciated that you have gone into so much detail! Wow you weren't off work for long then? Thats brilliant! Aside from the pain i have been a bit concerned about how long i will be unable to work for and the scar. I have a scar on my neck and my inner thigh from previous operations but they arent noticable so i was a little concerned how i would adjust to a large one.. i will definitely bare the bio oil in mind!

Thank you so so much xx

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Ahh bless you I had the op on 3rd August 2017, was home on the 8th August, started cardio rehab on the 1st Nov ( that’s for 8weeks) and back to work on the 7th Nov, I’m fortunate that I only work part time and work is quite in the winter so I should be ok by the time Spring is here. Your GP and work will start you off on a phrased return back to work as depending on what type of work will advise on any restrictions.i do feel tired some days more than others, and some of my rota is very early starts . As for the scar you can start to prep your skin now by moisturising and massaging the sternum area morning and evening , drinking plenty of water . As I said before mine has healed beautifully and you have youth on your side so it won’t be too noticeable, when folk ask where my scar is I have to point it out 😂 you’ll be a beautiful heart warrior💖❤️💕Kaz

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Oh wow your recovery has been so good! That's amazing!

I am a carer for work which is quite physical so I am a bit concerned how long I am going to be off!

Oh really?? I never knew I could prep now! Is there any moisturiser you would reccomend? Or any? :) thank you so much 😘 xx

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I use to be a carer so I understand how physical it can be, but your GP will put on your sick note restrictions on your return to work and you should have a return to work meeting with your employer who should put in place your light duties , I am restricted lifting heavy items until I feel ready. So don’t worry about work they have to follow any return to work guidelines from your GP or cardiologist. As for preparing I also did exercises in getting up without using my arms this came in really handy.as for bras I wore those soft front fastening sports bras, but I was fitted with a posthorax vest which I wore for 6 weeks this supported my sternum while it healed and I’ve never had a problem . Before the op I used any moisturiser that had coconut or coco butter in then bio oil after. I am originally from Birmingham ,like Southampton (were I had mine) they are leaders in heart surgery.so keep us updated, would love to know how your doing. Take care Kaz ❤️💖💕

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Thank you so much, you have honestly helped so so much!

I will start moisturising today and start trying exercises like that, I was a bit unsure how I would manage getting up without my arms! I will have to get some of those bras thank you!

I will definitely keep in touch, thank you 😘 xxx

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Hi the pre-surgery appointments will be for making sure everything is okay, at mine I had a chest X-ray, an ecg and some blood taken, then had a nurse go through a load of questions about my home environment for when I went home etc, and then a chat with my surgeon to go through exactly what was going to happen - I was having an aortic valve replacement.

As far as the op is concerned, I wasn’t aware of the breathing tube at all. They don’t put it in until you go under anaesthetic and had removed it before I was aware of anything afterwards. Having the various drains and pacing wires removed was fine, slight discomfort as they did it but no pain.

I had my operation at the beginning of November last year and am going back to work tomorrow.

I hope everything goes well.

Wendy

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I'm glad the appointment is quite straight forward then! I'm from North wales and due to manchester and liverpool not doing congenital heart surgery i am being sent to birmingham, so i was a bit concerned as to what it entailed, especially with going to a new hospital!

Oh wow back to work already that is brilliant, i hope your first day back goes okay! And i am glad to hear your recovery is going so well!

Thank you so much for all that info xxx

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Birmingham is brilliant. My granddaughter had her open heart surgery there. She has had several. Like you she is congenital heart. Is now 23 having had seven heart ops. Four of them open heart.

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Oh really?? That relaxes me a bit! I've not actually been there before, the consultant who is taking my case came to wrexham to meet me so I was slightly nervous!

I hope she is doing okay! Thank you for sharing xx

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Hi

I had an AVR replaced May 2017 , I would totally agree with the above advice. I do not remember my breathing tube being taken out. To be honest, I have very little memory of the first two days. My operation was on a Wednesday, my husband visited on the evening of my operation and I don't really remember his visit. I did have a chat with him but would fall asleep mid sentence ! I had two visitors on the Thursday again I have little memory of their visit. My had my chest drains removed on the Friday am and still had my morphine pump up and was also given gas and air , the first tube stung as it was pulled out. By the second one the effects of the analgesia made me sleepy again and there was little pain. After the tubes were pulled I was helped into the wheelchair to go for an xray. I remember feeling very fragile and wobbly but the porter and radiologists were very gentle with me.

Best advice is take the analgesia offered as there is no reason to be in pain. If your pain is controlled you will feel better in yourself and move better which helps your recovery.

My surgery was done urgently and although I had had advice and some information from the cardiologist , I did not meet the surgical team until the day before surgery. That day I met the surgeon and then his registrar. I also met two anaesthetic doctors who both talked me through what happened. I also saw the nurse practitioner and the ward staff.I had a lot of information in a short period of time but despite that felt well prepared and remarkably calm. I think it helped that I had no choice but to have the operation...

I hope this is helpful to you and that you are well supported through out your surgery and with the next few months ahead.

Mary

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That's brilliant, of all the things to worry about it has been the breathing tube! So to hear I most probably won't remember it is great!

You're strength is amazing and it sounds like you have done great!

Thank you so so much for all your detailed information it really is a big help xx

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Can't say they hurt coming out. My surgery was urgent and done on my birthday. I am now four weeks post op. I was in hospital for two weeks.

Can't say it was enjoyable but the staff were great.

I seem to have some sort of selective memory and things are coming back in fits and starts.

My granddaughter says it is the same for her.

She was my rock and incentive because she had surgery from a day old until her teens.

This site has been a great help.

A bit of female advice, get some pull on type bras or vest tops because underwires really don't work with where the scars are initially.

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Oh gosh what an awful birthday present :( with yours being such a short time ago, how are you finding the healing?

A few people have told me their memory of the days following is quite sparce, I think I'm happy if that is the case!

I am glad that you had someone who understood so well! This site has been amazing for me so far because I am actually the only one in my family who has had to go through this, so they are supportive but can't give me what I need really.

Oh wow thank you! I will keep that in mind!

I hope you continue to recover well and I greatly appreciate the time you have taken to reply xxx

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Hi, I had my Aortic valve replaced in 2006 with a mechanical valve, which is what I presume they will advise you to have at your young age, you don’t want to be going back for future replacements. The ventilator coming out is no problem, nor the drain tubes, the nurses told me to breath in and hold my breath, then gently pulled them out, quite painless! Best of luck with it!

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Thank you so much for your story :)

Up to now they have given me a choice, a tissue valve which will last 5-10 years or a mechanical which could potentially last the rest of my life.

Unfortunately the mechanical valve means blood thinners for the rest of my life, which would mean I could never have a family of my own :( so I think I will go for the tissue so I have the chance at a family!

They are currently trialing valve replacement through key hole! So they hope that by the time I need it again it will be through this method. They hoped it would be the norm by the time I had it replaced this time but it isn't quite there yet :(

Thank you!

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hi ive had a aortic valve replacement 9 weeks ago and things are going well now like eery1 said the tube is taken out b4 you come around and the drainege tube was taken out under gas and air so abit of dicomfort but ok.paceing wires were in 4 a few days and wearnt very painfull comeing out .goodluck and you will be out in notime and wondering why you were panicking.

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Unfortunately in my case I was awake when the breathing tube was taken out and fir me that was the worse part of the whole operation. Don’t know if I was completely conscious but I certainly remember it being taken out.

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Thank you so much for sharing your story! It's been such a big help recieving all of these messages!

Good luck for the rest of your recovery

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Hi,

I'm new to this site but saw your post and had to say hi. I had my mitral valve repaired in 2010 and have just been told I now need my 2nd open heart surgery to have a mechanical valve replacement. Unfortunately at 33 this means blood thinners for life and no babies of my own 😔

However I am pleased to say that you won't remember the breathing tube coming out at all. The chest drain is slightly uncomfortable but honestly nothing that you can't handle. The pacing wires and neck lines don't hurt at all so nothing to worry about there either. My advice would be to take any pain relief that is offered and don't feel like you are being hard work or difficult if you need something extra. Everyone is different and some people will need more pain relief than others. After my first surgery I was home in 6 days and back to my very energetic job of a dance teacher after 3 months. I'm sending lots of love and support to you and hope your anxiety calms down soon xx

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Feel free to say hi any time :) it's been great talking to people who understand! And I am always happy to talk :) Oh my gosh, I am so sorry to hear that, how are you coping? :(

I'm am so amazed to hear how well you did after your first surgery, hopefully this one goes just as well, especially with you being a dance teacher!

Thank you for sharing your story, it has been greatly appreciated although I'm sure it isn't easy for you. Feel free to message any time.

Lots of love and a big hug to you too ❤❤ xxx

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I am always happy to talk as well. So glad I found this site.

Have you been given someone to talk to at the hospital about your worries etc? I think that they are meant to put you in contact with someone who you can discuss things with. Do you have any idea when your surgery is? Xxx

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me too it has honestly been a god send!

I have an appointment on Wednesday for pre-surgery counselling and with the surgucal team etc for my preop assessment. I am being sent to Birmingham for mine (I'm from North Wales) so they are trying to get all the prep done in one day!

Up to now all I have been told is that I'm looking at March time, I'm hoping I get a rough idea when I'm there next week because I am getting symptoms nowadays.

When are you having yours or do they not know yet?? xxxx

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