Any Experiences From Patients Who Have Had!

[Liam47]

Hi,

I'm due to have an aortic root replacement and either a aortic valve repair or replacement hopefully in a couple of weeks time at Papworth Hospital in Cambridge.

I was wondering if there were any members/patients on here that have had what I'm going to have done, that could give me any advice on what to expect post surgery and recovery.

I would also like to hear from anybody on here that is waiting to have the same surgery as I am.

Thank you,

Liam.

[Madgranny2]

I am waiting for an Aortic valve and, artery bypass within next 4 weeks. Had all checks and tests, met my surgeon so ready to go.

I am 70 shortly so have opted for pig valve, my brother who was 57 when he had his has the mechanical valve 5 years ago

[Liam47 in reply to Madgranny2]

Glad your all set to go.

I've met my heart surgeon, but I'm still waiting to have my pre-assessment though.

How do you feel about it all?

Hope all goes well for you by the way!

[Madgranny2 in reply to Liam47]

I'm afraid Liam, I can't wait for the appointment to arrive but, don't want it to come, it that makes sense?

We might be having our ops about the same time by the sound of it.

I'm going into James Cook in Middlesbrough which has a wonderful reputation. It's the waiting that gets to to you and don't know about you but I'm weary now everything is so much effort.

Hope your pre assessment is soon, I'm not sure if I need a pre op clinic to go to yet.

It's a visit which lasts a few hours and done in groups of potential heart op patients you are even supplied with lunch. My hubby had one 2 years ago when he had a triple bypass but it's not always done now. I should have asked

[Liam47 in reply to Madgranny2]

I do understand, It is a bit scary. I can't wait for my pre-assessment and I know this may sound strange but I can't wait for the surgery, I've been waiting since beginning of this year and I had a recent echocardiogram last week and it shows that my aortic root has dilated even further to what it was when I saw my surgeon last year, so I've got worse. I want to get it done and dusted and move on with the long recovery. I sometimes say to myself and to people when they ask me how I feel about it, I say "bring it on". Sometimes I think having this kind of mentality helps you deal with it in your own way. When I was first told I needed heart surgery, I was saying to people "I'm looking forward to it", my mum didn't like me saying it, but I said to my mum "it's my way of dealing with it". But I do get days of sadness/low mood. It's been an emotional rollercoaster so far for me. It's not something that we can leave alone and hope it goes away, because it won't! I know it's got to happen regardless of how I feel. If it doesn't happen I'm a high risk of it rupturing and if they don't catch it in time, I could die.

I'm finding it difficult to walk around as if I work the heart to much it starts to sort of ache in a way. I get short of breath, and walking up stairs is difficult. I get discomfort in my chest and back, between the shoulder blades, my surgeon says the discomfort is where the dilated aortic root is pushing up against the surrounding organs.

Liam.

[getrico in reply to Liam47]

Hi Liam,

Sorry to hear about your circumstances.

I've been experiencing exactly what your going through.

I became worse with severe aortic stenosis

With regurgitation.

Change your diet ASAP. Easy plenty of fruit and vegetables. Less meat chicken and fish or avoid at all costs.

Aim to lose weight for the surgery for a speedy recovery. I was discharged on day 5.

I lost 10 kilos in a month strictly on plant based diet. I was more energised and less tired most days.

Secondly use energy for a purpose otherwise you'll feel burnt out quicker or next day. Use it wisely.

When tired/weak lie down flat in a comfortable area, bed was for me. No matter how long 1-2 hours or more. It's very frustrating and I'd stay in my bedroom all day until I'm recovered with positive energy.

I did breathing exercises to relax body.

This worked for me. Lasting 3-5 days.

Supplement on vitamin k2, vitamin b50 or complex. This'll boost your energy levels. K2 helps move the calcium deposits from organs and arteries to bones where it should. Also felt energised.

Also magnesium for evening before bed to relax the heart and body. Helped me sleep big time.

Remember to gauge each day as you'll have good and bad ones. I soon was able to move more freely but was still house bound. Couldn't walk outside for long distances ie. 100 metres plus. Having a garden helps as I walked within pace and distance each day there. Also try qi cong basics for walking only to strengthen your core. Any exercises should be not too strenuous. I used resistance cables the lightest just to keep upper body in tact.

Re pre assessment. This'll consist of only your bloods, xray and ecg about 4/5 weeks before operation. They can't give or promise a date that day but I after 3 weeks was inpatient and was upset as I had a bad day, totally weak. I contacted the cardiologist and to my surprise via email the Secretary returned my email phoning me. I had a confirmed date and results from Angiogram.

What a Relief and burden carried away.

Do contact your cardiologist/ secretary as you've every right to. Communication is key although your gp or NHS won't inform of this. Keep them aware of any great changes in your health. As if your symptoms become worse, especially with swelling around ankles they need to know for immediate urgent surgery.

[Liam47 in reply to getrico]

Thank you and thank you for valuable advice.

I'm already doing most what you say. But where I have the bulging aortic root and another health problem that prevents me to lye flat, I can't do the bed thing you said. So I rest as much as I can in a chair.

I stopped working and went onto long term sick leave only 2 weeks ago, because I was finding it difficult to walk around without getting the chest tightness and discomfort. My job is a very physically and demanding job, on my feet for over 12 hours. I think I've done extremely well to of carried on. I definitely chose the right time to stop working for the time being as I think I would of eventually collapsed, something I promised my boss I wouldn't do, bless her she did worry about me, so did all my colleagues.

I can't take any supplements because of a rare medical condition and I've also been told to make sure I eat meat, veg and fruit on a daily basis which I'm doing.

Thank you again for your valuable advice.!

Liam.

[getrico in reply to Madgranny2]

Hi.

I've just had my op 10 days ago now.

Opt for Bovine instead of pig which lasts longer than pig. Cardiologist informed newer prosthetics better now lasting longer 15-20 years. Best was 25 years - 70% patients. You've also the mechanical which has to have warfarin for life. This'll avoid another heart surgery.

Ask your cardiologist if your eligible for TAVR procedure which inserts from groin? Understanding your age is far less evasive, less pain and much quicker for recovery.

Good luck

[Madgranny2 in reply to getrico]

Hi

I hope you are doing well after your op, it might be a bovine valve just depends but whatever it is you are right they last so much longer these days.

I can't have the TAVR procedure unfortunately,

Joan

[Liam47 in reply to getrico]

Hi,

I hope your doing well with the recovery.!

My surgeon has already said that, if he can't repair the aortic valve, he'll replace it with a metal mechanical valve and said I'd be on anticoagulant tablets for the rest of my life, which I said I didn't mind taking them. Small price to pay really to get a new heart valve!

I can't have the TAVR procedure because they can't remove and replace my aortic root this way, he's definitely opening up my chest.

Liam.

[Madgranny2]

Exactly the same symptoms as mr Liam, and yes everything is an effort. My EcoCardiograph showed that my Aorta was severely blocked which is where the shortness of breath and crushing feeling comes from, the pain I get I've been told is from the blocked arteries. I hope they have told you as they did me to ring 999 if the pain doesn't go away on resting.

How old are you, I get the impression you are a fairly young man to have this

Joan

[Liam47 in reply to Madgranny2]

Hi June,

Sorry was your reply to Getrico or me?

Sorry I had to ask, as I couldn't tell which one of us you replied to.

Thank you,

Liam.

[Madgranny2]

You Liam

[Liam47 in reply to Madgranny2]

Oh sorry!

I'm 47 June.

I have been told that if I experience any sharp tearing pains in my chest and/or between the shoulder blades, to not take myself or get anyone else to take me to my local a&e, but to immediately dial 999 for an ambulance and tell them that I'm waiting to have open heart surgery and tell them what your having done and what's wrong with me and tell them I'm experiencing a sharp tearing pain. I hope there's an ambulance available at that time.! God knows what I'll do if there isn't, may take a chance and get my dad to take me or may involve the Police and just explain everything to them, sometimes their obliging. I've got a plastic folder with all my cardiac stuff in it already just in case. I live on my own so it makes it more worrying in a way.

Apart from the pre-assessment side of things June, are you already just in case you have to do the same as me?

Liam.

[Madgranny2]

Good morning Liam

I have a son 45 and I'd rather go through this myself than have him need it. Your parents must be so concerned, no matter the age of our offspring you are always our children.

Yes I'm ready with my case packed etc but would rather go in under normal admission than emergency, unfortunately we have no control over that one.

Will you have someone to look after you when you come out, I'm sure you have been told that is important?

Let me know when your appointment comes, and I wish you the very best

Joan

[Liam47 in reply to Madgranny2]

Good afternoon Joan,

My parents are concerned about it all, but heart problems run in the family.

Yes they have told me I need to stay with someone for a while, so I shall be staying with my parents for as long as I need to. Personally I think I'd rather go through this than my parents, but I'm sure they'd think differently, like you.

Your better prepared than me, I haven't packed a thing. I should really, as you say, you never know what will happen and of it did, there's nothing we can do about it.

I will of course let you know when I get a date and thank you for your best wishes Joan.

All the best to you too, keep me informed.

Liam.

[Fredders]

Hi Liam, have you got a date yet? I got told yesterday that I've got to have my aortic valve replaced again as the tissue one I had in 2011 is now leaking badly enough that it needs replacing. In 2011 I was also told my aortic root was dilated and they might have to replace it, but as it was they wrapped it in some webbed no stuff to pull it back into the correct size. The best advice is to do what they tell you to do and don't do what they tell you not to do!!!!!! I had mine done at Glenfields and the staff there were first class. The hardest thing I found when I got home was accepting my limitations whilst I healed - I'm not very patient. Your ribs and muscles go through hell so give them time and treat yourself gently - and take the painkillers 😸

[Sina-6491]

Joan & Liam,

I hope you two don't have to wait too long for your opps.

Liam, same name as my son. Listen have you thought of talking to your neighbours? Even if you don't really know them that well, or even know them at all.

You could have a chat & explain your situation. Then if you did have any concerns while at home yourself. You could call them & they could act on any prearranged plans you planed together.

You know, like sit with you until they can hand over to whoever. They could talk to the emergency services on your behalf to explain the situation. They could call your parents, grab any documents & clothes you may have prepared.

Finally, they could check everything is switched off & lockup for you.

If you could arrange some kind of help for the what ifs. I am sure it would give you piece of mind. Therefore relaxing your mind & body, so you don't have to attend hospital until your actual date.

Good luck with everything, Jo