I’m a 51 year old recently diagnosed with severe bicuspid aortic stenosis. My consultant says I need open heart surgery in the next few months but everything is delayed because of Covid. I don’t really have any symptoms other than back pain but I’m terrified of both the surgery and the delay and the healing process of the sternum.
Any wise words from someone who has been through similar would be greatly appreciated 😷
Hello Samgeorge, sorry you are facing open heart surgery, I had mine nearly 4 years ago aortic valve replaced and bypass. It’s a very scary place you have found yourself in but I am here to tell you it will be ok. There are many of us on the forum who have gone through the same thing and all those thoughts you have whirling round your brain we have had.
Firstly you will not be in pain they make sure you are comfortable, when you get home you will not be allowed to pick up anything heavier than a bag of sugar and you can’t put your arms above your head. This is for the first 6 weeks, you will need to build up your stamina so little walks when you first get home, just remember baby steps. Don’t be surprised if you are emotional it’s a major op that you are going to have, but once it’s done it’s onwards and upwards. Your heart will be mended. I am so grateful to all the amazing people who gave me my life back.
If you have any questions just post here, there are so many of us that can answer you.
Best wishes stay safe Pauline
I echo what Pauline has said. I had open heart surgery to replace my aortic valve 6 weeks ago. And I am now nearly back to where I was before the op. Hoping in a couple of months I should be better than ever.
It is a scary time but the surgeons perform these procedures on a very regular basis. Pain is well controlled and it’s surprising how soon you will feel comfortable moving around.
There are many others on this wonderful group who can give reassurance.
So just hang on and take care. Try to stay as fit as possible which will aid post op recovery. And think how good it will be to get rid of the back pain!
Regards Nicole
Please don't worry about the surgery - its not pleasant but is remarkably efficient, quick and you will be home in no time - and feeling great. I had first AVR 6 years ago, and second (first valve was too small, apparently it happens to some people and I'm not a very big person!) last June. First op was fine, in fact much better than I had thought it would be. I was up within 24 hours, home in 5 days and walking around the block two days later - and never looked back. I don't remember any pain, although it was uncomfortable. I cannot tolerate morphine (makes me violently sick) so they experimented with other drugs and found right pain meds quickly - but only needed paracetamol after a while. The surgeons are very good at this type of surgery and the nursing teams so kind, helpful and overall excellent.
The second op was slightly different, longer and also recovery time was slower - but I have to say that the expert voices around me said 'don't expect too much' and I was great after a few months rather than a few weeks. I'm not very patient!
The most tricky part to handle is the waiting and the mounting anxiety. Covid 19 will probably extend your waiting time. You are a bit limited as to choice at the moment - but walking is excellent exercise so grab the day and take your daily exercise outside your home but avoid others. I really got myself fit in the weeks before op number 1 - by walking fast and everywhere I went - I was more limited before op two as I had a long wait and gradually got more symptomatic - but walking was still my exercise of choice. Walking will also help with anxiety.
Its pointless saying don't worry - you will, so try and limit the worrying. The website Every Mind Matters is a useful resource if you are particularly anxious.
I think it might be a good idea to have a word with your GP (and a word is probably all you will have at the moment, they are not doing face to face appointments) and take advice about staying safe and exercise and diet whilst waiting.
Keep in touch with us on the forum, even if only to say hello and let us know how you get on.
Frances
Thanks Frances. Some good tips and advice.
I love walking and that is my exercise of choice as well 😉. I’m fairly healthy vegan and not overweight so keeping up the healthy eating prior to.
Thanks for the kind words.
Stay safe
Sam
Hi Samgeorge
I can only echo what the others have said to you. Waiting for the op is worrying. Heart repairs are routine now. Pain relief is very effective. As to recovery, once the sternum knits (about 6 weeks) you can do most things that don't involve lifting anything heavy. I found walking every day a great help and relatively easy to do. Expect to be tired and at times emotional. I've found mindfulness a great help.
Good luck
Best Regards
Thank you seven-oh, it’s really good to hear from people who have been through this and come back out the other side. Gives me great comfort. 👍
Take care
Sam
One thing I forget to mention, lots of heart-op recoverers will start to feel better immediately, particularly true of bypass ops. Personally, as I had no symptoms I didn't feel any better which I suppose in the greater scheme of things is not a bad place to be but none of the literature I could see mentions this. As they say, baby steps post-op
Best of luck
Hello Samgeorge,
Yes its a real worry but the reality was it wasn't a bad as I thought.
I had my Aortic Valve replaced at the Royal Brompton London on the 4th March. I'm 55 and this was my first time ever in Hospital. I knew nothing of my condition until the 18th Dec 19 when I collapsed in the street. The next day I saw my GP and she found I had a murmur. Just after Christmas I saw a Cardiologist and after testing inc an Angiogram I was diagnosed as very severe/life threatening. Now, that was something to worry about!
I was recommended a Surgeon who specialises in Minimally Evasive Procedures. My Scar is only 3 inches long as its a partial Sternum cut.
The Op went without a hitch. You spend a day or two in HDU after the Op before going to the Cardiac Ward. Pain is managed well and your chest will look like a construction site with all the stuff they stick in you. Its all gradually removed and when they think you are ready, you'll be discharged. You will be encouraged to walk around and Exercise. Without exception the Nurses and Doctors that look after you were totally lovely. If you're nice to them they will do anything for you. I saw a couple of grumpy gits and you could see the Nurses despised them.
You walk out with a letter and a bunch of drugs. I joined a few mates the evening of my discharge at the Pub.
I'm not going to lie, you will feel pain for a few weeks after the Op. I didn't take any painkillers which was prob a bit stupid. Hard I know but try and avoid sneezing. Even now 5 weeks on it hurts like %4£@.
All in all, it was a massive worry but now I'm fixed I look back and think, it wasn't really that bad.
@btw, you will be asked to choose your valve type. Do your homework on this as there are Pros and Cons for each type.
I went for a Tissue Valve as I didn't want to tick or manage drugs for the rest of my life.
The Inspiris Resilia was my chosen Valve. The beauty of this valve is when It needs a service they can do it via TAVI. Its new ish to the market so its a bit of a risk.
rbhh-specialistcare.co.uk/n...
With this Pandemic my Consultant is working on more important stuff and I've been left high and dry without any follow up Consultations. I'm not worried as day by day I feel much better. I went back to work after 3 weeks after discharge, working from home with a laptop on my Lap.
You'll be fine.
Hi swing your pants,
Thanks for your response, so glad to hear you are getting on ok. Fingers crossed for a full and speedy recovery.
I’ve been told I will have a metal valve via open heart surgery given my age (51). Not sure if I have an option of the TAVI at all!!! But would obviously prefer not to have open heart surgery if I can avoid it. I’m going private and luckily I have this cover through work.
Any thoughts on whether I have a choice in the matter greatly received.
Take care
Sam
Hello Sam,
I went Private as well via Vitality. This means YOU choose the Surgeon. Also YOU choose the Valve type. As I said do your homework on the Valve type.
Okay the metal or composite Valves should last a lifetime but you could Tick. Also a life of Warfarin will have its drawbacks.
My valve "could" last 25-30 years. I'll be well old then so TAVI will be the only option. My Surgeon told me the IR Valve is easy to replace via TAVI. Not all Hospitals will offer the IR Valve as its new and more expensive.
TAVI is only offered to high risk patients i.e. prob wouldn't survive open heart surgery. At 51, TAVI isn't an option.
A few Surgeons at the Royal Brompton & Harefield Trust specialise in Minimum Invasive Valve Replacement. Find one that is approved by your Insurance co.
Trust me, I did my homework and I believe I went for the best solution.
Thanks for the advice swingyourpants, I’ll make sure I check everything out as you suggest.
Take care
Sam
Any updates Sam. I keen to know how you got on?
Hi swingyourpants, still waiting to hear from the consultant. He said he’d call me end of may when Covid calms down. Using the time to investigate as you said 😉. Will keep you posted.
Take care
Hey welcome. I understand your concerns. I have a leaking Aortic & Mitral valve and I’m supposed to have open heart for them to be replaced. I also have a pacemaker and I’m a type 1 diabetic of 44yrs and I’m 59. The only symptoms I get are breathlessness brought on by exertion. I am somewhat concerned too about the healing process of the Sternum and other complications that will arisen having diabetes as well as things take upto three times as long to heal. So a reasonably healthy person may be okay after three months, whereas underlying health issues like diabetes would prob be 6-8 months healing depending how well the diabetes is controlled.
I live on my own as well, which complicates post operation care. So in all honesty, I may even stick it out if it’s just breathlessness I get rather than go through the whole process with all the risks attached and not have the operation. I next see the Cardiologist in a couple of weeks to see what’s the next move.
Good Luck with private. I know the NHS are currently overwhelmed with it, but I’d rather be in the safe hands of NHS experts than insurance inspired healthcare. Good Luck Sam!
Interventional Cardiologist Dr Karl Poon outlines the classic triad of symptoms<a href="hopeforhearts.com.au/aortic... severe aortic stenosis</a> patients may present with. He also describes the signs doctors should look out for in their patients, including heart sounds, blood pressure and pulse.
Hi Samgeorge. I am 11 weeks post an AVR and have been surprised at how quickly i have recovered. Ok, yes, the first week is not pleasant, but not painful either. I have also managed it alone, with just a weekly cleaner to help. Of course it is a scary prospect but the best advice I had was to go with the hospital flow, doo as you are asked and save all your energy for recovery. Just be prepared for the surgery to be cancelled and rearranged at short notice. Happy to answer any questions.
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