Aortic valve and ascending aorta surgery

[Ns32290]

Hi. Nice to 'meet' you all. I'm Nadine and I found out this week that I need to have open heart surgery to replace my aortic valve and to repair my ascending aorta as it is dilated. I am feeling a bit overwhelmed by it all today and I was hoping that maybe someone had some advice and guidance about what this journey will be like for me. I was not expecting such drama when I am only 50, but it turns out I have hypertension and that has led me on quite the journey to today. I am very lucky that discovering the high blood pressure has led to this incidental finding, so we can take this preventative action to repair my bulging aorta before anything worse happens. My surgeon explained everything very thoroughly, which was great, but it was a lot to take in. I don't have a date for the surgery yet as I need a further CT scan. My original scan doesn't show much of the aorta and they need to check if the dilation extends any further. I will be having a synthetic valve fitted so I will need to take warfarin after, so I am worried about the impact that will have on me long term. I am also very anxious about what after the surgery will be like. My only other hospital stays were when I had my children, so this is going to be a big first for me.

If anyone has any words of wisdom or encouragement at this point, I would gladly welcome them.

Thank you

[PadThaiNoodles]

I have some markers of Marfan Syndrome, so when they diagnosed me with mitral valve prolapse they scanned my aorta all the way down my torso. (Found nothing but a dislocated disc in my back, but that's another story.)

Even though my aorta was fine, my valves continued to deteriorate for the better part of another 20 years at which point open heart surgery was indicated (due to LVH). I had my mitral valve repaired and my aortic valve replaced. That was 7 weeks ago.

I can write more about it later; I've got to take my wife in for a CT angiogram now.

[Happyrosie in reply to PadThaiNoodles]

Oh and I meant to add - a friend of mine had a very similar diagnosis to you. He was sixty at the time. He’s now 82!

[Cliff_G]

Hi Ns,

Sorry to hear this but the key thing is the issue has been found and it sounds like you're under the care of a good surgeon. It's also definitely better to have a planned operation! My aorta let me down unexpectedly and dissected, and I have had a fairly torrid time since (7 years ago) - I profoundly wish I had had the elective option!

It's always a shock when your body lets you down, and it's something you have to get your head around and deal with in whatever way you find best for you. My approach was to find out as much as possible about my condition and the treatments etc.

One thing you'd need to be clear on is why your valve needs replacing. This can be for a number of reasons such as stenosis (narrowing), calcification, bicuspid, a connective tissue disorder such as Marfan/Loeys-Dietz/Ehlers-Danloss/Turners, or just dilation meaning the leaves don't touch each other any more and allow regurgitation.

For some of these causes there's no alternative to replacing the valve, but in some cases the PEARS sleeve can be used. (Personalised External Aortic Root Support - search eXtent (for the avoidance of doubt I have no commercial interest in this)). PEARS is not suitable for everyone, but if it is it can help stabilise the valve and the ascending aorta, avoids valve replacement and the need for warfarin and whilst still an open-chest procedure it is a much shorter and less invasive option. You would need to see a consultant who specialises in it. (I only found out about it after I had a dissection, but also found out it would not have suited me). Your upcoming CT scan should provide the extra information needed whether you consider PEARS or not.

Another discussion is over the valve type. It sounds like it has been decided that you'll have an artificial valve. It could be that this was explained whilst you were still reeling from being told of your condition, but it's worth having that conversation again if you're at all not clear. A metal valve is the most robust solution and lasts for life, but does need warfarin (other anticoagulants such as DOACs are unsuitable). Tissue valves need eventual replacement, about 10-15 years, so at age 50 now you'd need at least one. I think there are some tissue-like artificial valves available, but I think I'm right in saying they also need warfarin.

Getting warfarin checked becomes a lifestyle thing and most people get used to it. Where I am I go to my GPs every week or three to get my INR checked, but as I am retired this isn't a huge issue. For people still working, or who travel, you can test yourself at home or away using the Coagucheck tester, and giving the results to your INR clinic for advice on any dosage change. The main risk of warfarin, which is excess bleeding, is pretty small provided your INR is correctly in range. You and your clinic will soon get an idea of how you respond. Various things affect INR but they are all controllable and all in all, I have not found it an issue.

I assume your high BP is being attended to. Don't think that high blood pressure is the cause of this and that you should have done something before. High BP does not cause aortic enlargement on its own - it is only one of a number of "risk factors" which can lead to enlargement. At its most basic, many aortic issues are genetic (such as Marfan etc.), and even those which cannot be pinned down to any of the 30 or so gene mutations known to cause aortic enlargement are, most experts believe, probably also genetic in nature, just we haven't found the gene yet. I was blank on my post-dissection genetic tests, but I had AF as well as my father, and he died in slightly unknown circumstances, put down to a heart attack, but my dissection casts that in a different light 30 years later.

It's worth also seeing what your cholesterol levels are like, as atherosclerosis can contribute to aortic issues, in particular something called a PAU, Penetrating Atherosclerotic Ulcer. I had one of these unknown which contributed to my dissection. As well as the usual LDL/HDL, you should have at least once in your lifetime a check on Lp(a), lipoprotein a, which can exacerbate atherosclerosis.

Regarding genetics, a key thing is to find out whether any of your family have had any aortic issues before now - parents, siblings etc. This could influence the timing of your operation, and your surgeon would need to know. Getting genetic tests yourself has implications such as on insurance, so would need careful consideration beforehand, but it is a good idea to get these.

Hope this is useful to you. You're actually in a very good place having found out about your condition and being under good care, so I hope these facts reasssure you. If you need any more info, get in touch again on this group, or PM me.

[Happyrosie]

while you wait for tests and decisions, it might be a good idea to look at the website of Blood Pressure UK, the specialist charity. There’s advice on diet and exercise (which you probably are well aware of). They have a helpline.

[Hanibil]

Hi had same operation at age 48 in 2005, I went for a mechanical valve on the recommendation of cardiologist and surgeon as a tissue valves only last around ten years and there was no way I wanted to go through all the trauma again 20 years on valve is working fine. As for being on warfarin it has presented no problem.

[Ns32290]

Thank you to everyone who has replied and shared your stories and your advice. This means a lot and has actually calmed my anxiety quite a bit. It is really helpful to not feel alone with my news. So thank you. I will certainly check out all the things you have suggested while I wait for my scans and next assessment. Wishing you all well and have a lovely weekend.

[Summerlavender]

Hi, sorry to hear about your diagnosis, i thought I’d message with my experience. I had undiagnosed bicuspid valves until I was 49 (this year) and barely any symptoms, palpitations were put down to menopause by myself and only a big holiday coming up pushed me to get a monitor and scan, turns out I had severe aortic valve stenosis. I was fortunate to go privately but was told it would still have been fast through the nhs.

The worry is the worst bit, I couldn’t eat or sleep. My husband says something that did really help though and that was that I only had to get myself through to the time I went into hospital, after that all of the worry was somebody else’s responsibility. It’s true, you are handing yourself over to others to make all the decisions. So I focused on what I could control, trying to eat and sleep beforehand. I started listening to “the sleepy bookshelf” a podcast that reads books in a soothing voice, a great distraction from those middle of the night awake and panicking moments.

The operation itself went really well, it was not as painful as I expected, getting put under which was a big fear was fine, it was done in seconds, I don’t remember much of the next few days, but I was up and about a few days after leaving intensive care.

Afterwards I expected to fairly back to normal within a few weeks, to a certain extent that’s true but really it takes a lot longer to be fully recovered so don’t over do it 😊 rehab was the best thing I did , it gives you the reassurance you need that you can push yourself when it feel a bit scary!

I’m six months on, the warfarin clinic are brilliant and it’s not too much of a problem. I recently bought a machine to check my own inr levels in between appointments for peace of mind. Although the hospital didn’t like me using it really but its not replacing any appointments and it’s all very accommodating so if u want to be seen you will be, it’s not like normal hospital appointments, I’m in and out with a few minutes.

I was a person that was terrified of anything medical to be honest and thought I’d never get through it, I’m lucky enough to have friends and family who were supportive but the hospital I was in (barts) and my local hospital have been fantastic both private and nhs as it’s been a mix , I’ve only come across kind people who at times literally held my hand when I was scared. To us it’s terrifying, to the surgeons it’s just another job that’s no problem 😆 their confidence I think puts you at ease.

I hope I haven’t waffled on too much about my own experiences here, I wish you all the best and theres so much support here if you have any questions 😊

[PadThaiNoodles in reply to Summerlavender]

Summerlavender makes a good point: whenever I go into the phlebotomy dept of my local hospital for a blood test scheduled by the warfarin clinic it's always in-and-out -- even when there are others in the waiting room. (You do feel a bit sheepish walking back out, but I suppose they're not in there 10 or 20 times a year like I am.)