my world has become a nightmare
diagnosed with bicuspid aortic valve ... - British Heart Fou...
diagnosed with bicuspid aortic valve in august last year and 37mm root dilation. I’m pretty terrified what the future holds. I’m 51.
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Pheasant1234
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Sorry to hear that you are upset by this: who diagnosed you, what did they say? Can you go back to them/a member of their team for further information and advice?
Is there a family history that is making you particularly worried?
Are you experiencing symptoms because of the valve?
Do you have other cardiovascular issues? (If you have high blood pressure, it's definitely time to do something about it, and if you don't know, then it's a good idea to monitor it properly and there are excellent resources available to help you do so.)
Dilation to 3.7 cm is top end of normal range (unless you are particularly short), and unless you have previous reliable measurements that show it has grown rapidly in a short time (less than a year), it shouldn't be any reason to worry. Even with a bicuspid valve, current guidelines wouldn't normally suggest surgery below 5.0cm, some doctors would say 5.5 cm, and even activity restrictions (mainly, avoiding heavy lifting) don't really become important for most people below 4.2 or 4.3 cm.
I was diagnosed at 4.5cm-4.6cm in my ascending aorta four years ago, at 59, though in my case the valve is tricuspid and there's some kind of connective tissue disorder, It's now around 4.8cm, which is a fairly typical rate of growth. However, genetic tests have all been negative. As I had - and have - no symptoms at all, it came as quite a shock, but it's something you really do get used to.
Knowing about it before there's any kind of crisis or emergency is a huge benefit and opens up much safer treatment options than when people suffer aortic dissections. There's still a very good chance you won't need any treatment at all, and if you can wait for 10 to 20 years, there is also a good chance that treatment options will be even better then than they are now. Options for repairing and replacing valves are definitely getting better. Hope this is helpful, and I'm sure there will be others happy to share their experiences of your condition.
Hi hope this helps put your mind at rest, I had the same problem back in 2004 at the age of 48, I was really I’ll I could hardly do anything I ended up having a mechanical aortic valve and a repair to my aorta. It completely transformed my life.I was able to do anything I wanted including mountain biking and skiing . Try not to worry it doesn’t help if anything you will make yourself worse.
thankyou for taking the time to reply. Much appreciated.
Hi pheasant1234
Sorry to hear your going through this your not alone.
I was diagnosed with biscupid aortic valve when I was born I have congenital heart disease, sometimes you need an Operation and sometimes you can just get checkups and monitored to make sure it's not causing you anything issues.
Have you got symptoms with it I'm not really an expert on this cause I was too little going through all my heart issues.
Hope you get some more information on your condition and what there plan is for the future any operations.
Take care ☺️
thankyou I appreciate your reply.
I really understand what you're going through and if you're a fit healthy 51 year old you will be asking yourself so many questions. I know I did when I like you was diagnosed at 55 with this. I won't go into what I did, how I felt and how it all happened but here I am now at 61 fully recovered after my HVR and by the way I opted for a tissue valve . I only had my operation in June last year and I was back at work November . I'm fit and healthy and so you will be too. This is your journey and I am always happy to reach out if you need a fellow bicuspid friend as support.
thankyou. Really appreciate your kind words
how did you cope with the worry and fear?
I did so much research and changed nutrition, not that I was how can I put it, living a life of over indulging. Lockdown came, I was a key worker so kept on going to work but became too busy at times to think about it. I began to prepare for operation probably 2021 as I knew at my next echo cardiogram it would be worse. So as suspected my valve was classed as severe but kept on working full time. It took me two years to adjust to my condition and accept that at some point I would need an operation. I was terrible at walking even up the slightest incline but seemed to be mooching about inside Metro Centre which kept me sane. I was fit and healthy prior to being diagnosed and my advice would be to change exercise levels to other ways and check You Tube as lots in there even for meditation and calming the mind. I channeled all my energy into getting match fit, stretching exercises, squats and seriously was determined to go back to my days of exercise once recovered. I chose a tissue valve by the way as didn't want to live with taking Warfarin for the rest of my life. All I take now is 2.5 mg bisoprol and a small 75 mg aspirin. I might not need aspirin long term but not sure. I am able to do moderate cardio exercise and with tests have a fitness age of 46. If you can channel your fear into learning about your condition, the operation and then recovery you will feel so much better. Are you walking around a lot still or knackered most of time? I had my op on a Monday and was home by Friday. In all honesty I believe if you can change your thinking to what do I need to do to get through this and recover gives you a focus . Learning to walk slowly and slowly is the best way to recover. I hadn't walked for 5 years fully so my hips were aching and I felt so old but I wouldn't give in and did hip stretches, went on You Tube for physiotherapy advice and now I'm like a medical expert.😅😅. Please feel free to ask anything. Take care and start planning. Make yourself a mini project to work out what you can do to prepare. When is your next echocardiogram due,? Sending you positive vibes . P s. You can hardly even see my scar.
Hi, Its a shock finding out you've become a member of a club you never wanted to join. But here you, and we, all are. I had BAV diagnosed at 62yrs, mainly because my brother had his aortic valve replaced, followed by my sister - and someone suggested I should get checked out. Bingo. Full house! I was asymptomatic and really had no idea at all. Actually there was some stenosis (calcification of the valve) and it rapidly got worse but I had surgery to replace with a tissue valve and carried on. The only difference was the lifestyle changes I made, which all contributed to the feelings of bonhomie and joy in life. I have had subsequent problems but these are related to my particular physiology and body architecture and nothing to do with the radical improvements in valve surgery in the last 10 years or so. You are on the radar now so will be monitored regularly - which is probably an advantage. I'm 70 , still work a bit, rush around like a teenager and try and get as much as I can out of every day. Life does not stop, but takes different turns. This forum has been a wonderful source of support and information. Learning you have a heart condition is pretty grim, but it does get better as you gradually get used to it. Things may be quite stable for many years - or not - but the medics have you in sight now, so trust in them and keep popping back to us for support.
Good luck and let us know how things go for you.
thank you for your reply. I really appreciate you taking time to send that. It’s all a big shock. I was looking forward to retirement early at 55, it seems to have taken the edge off it a bit even though it’s nearly four years away.
Hi. I'm 47 and have bicuspid aortic valve and there is a family history of his. Valve replacements etc... I'm ust waiting as mine is now severe when the time is right to get it replaced. I think due to seeing family history and my dad's complex heart issues including valve replacement bypass etc I do get days I worry ( I also had a turn.of events this year and a pacemaker.fitted) but seeing how well and fit my dad is at 77 and how all heart surgery transformed his life, it does reassure me. Get more info and happy to chat at any time....
Hi,
Thanks for your reply. Do you currently have symptoms if so what are you getting symptom wise.
Hi
Sorry to hear how your feeling with your diagnosis.
I was diagnosed the same with bicuspid valve and had congenital heart disease. I found out at 40, I offered to do some research and they found out I had a missing gene and then did a heart scan. I started off at 3.8, I'm now 53 and unfortunately mine has grown to 5.3 mm, I am waiting for an operation shortly. There is a new surgery, a sleeve is put around your aorta to stop it expanding. They feel it is less risky operation. Its called Pears Surgery. Personalised External Aortic Root Support It was designed by an engineer called Tals Golesworthy who had the same issue. Marfan syndome. Because of my missing gene, I'm shorter, but if I had my gene, should have been taller.
If your really worried, talk to the nurses at BHF, they very caring and supportive. I have done this myself and spoken to them.
thanks for your reply. Do you have any symptoms?
Hi
My only symptoms is blood pressure, which I have a few tablets to keep it down. I'm a worrier as well so it wont help. But at the moment they want my blood pressure to be 110/70. I think things will help when I get an operation date come through.
thanks for your note, keep in touch.
Hi Pleasant 1234, I was diagnosed with bicuspid aortic heart valve (congenital condition from birth) at age 57 , have a dilated aortic root 0f 4.5 cm and a dilated ascending aorta of 4.3 cm. Usual qualification I have no medical qualification and the information in this post is based on my own personal experience which may differ from yours
It may not seem it now but your diagnosis is a positive as it means that you will now be monitored by the NHS on a regular basis and they will tell you when you eventually (hopefully in many years time - see below) you may need an operation. A bicuspid heart value, dilated aortic root and aorta is fixable and my understanding is that the prognosis is really good as long as the operation is carried out at the right time.
The NHS now concentrate operations in a number of different centres which often deal with 500 or more operations a year. The surgeons and medical teams are really skilled and it is their day job and they do many many similar operations a year.
I was, like you, completely asyptomatic and had been in blissful ignorance of the condition all my life. I was completely poleaxed by the diagnosis, could not take anything in when the cardiologist told me and was really scared and am still a bit scared. My cardiologist told me that usually for bicuspid valve condition in the absence of any similar family history under NICE guidelines they would not consider operating until the dilation of the aortic root reached 50-55cm. (see earlier post from Julian M) Under national NICE guidelines I understand that may also consider operating if you get moderate/severe regurgitation (leaky heart because the valve does not close properly) or moderate to severe aortic stenosis (when the valve narrows so the blood can't get through as easily). There is a balance of risk trade off they don't want to operate too soon but don't want to leave it too long. But everyone's condition is different so talk to your cardiologist when you next get the chance.
If you have just been diagnosed there will be no historical information on how quickly it was developing (but I assume like me that your condition will have developed over your entire life) and when I was 57 my cardiologist thought I would not need an operation for at least 2 years. I am now almost 62 (almost 5 years on) and the dilation of the aortic root and aorta has not developed at all but I now have moderate/severe regurgitation and am now borderline for an operation awaiting some more results on Friday.
Your cardiologist should be able to give you a prognosis if you ask him or her. In the meantime my recommendations would be as follows.
First keep fit and healthy. You need to talk to your cardiologist about what you can and cannot do but my one told me that I can do any exercise other than lifting weights and High Intensity Training. I run 5/10 k once a week (don't do half marathons), go to the gym, cycle use the treadmills, swim do yoga and pilates. Second watch your blood pressure - maybe buy an omron arm blood pressure monitor. Third try and improve your diet if possible, less booze if you drink, less coffee, cut down on salt (See British Heart Foundation website). Fourth live life to the full and focus on what is important to you.
In terms of information about your condition the British Heart Foundation and NHS websites are the best places to look. Try and steer away from other websites if possible as they are not always very constructive. I looked at everything I could find and that was not positive. If you can't talk to your cardiologist for a while (it is often hard to see the cardiologist) the British Heart Foundation nurses (helpline) can give you a lot of information. Their contact details are on the BHF website and you can arrange a call back. I called them after my diagnosis and it was the most helpful thing I did.
You should still be able to get travel insurance still if you have a settled prognosis and are just being monitored. It just costs a bit more. The main problem with obtaining travel insurance is the lack of a settled diagnosis so if you are still having further tests this may be a problem until you have the results. I was told I could fly but should avoid high altitudes or really strenuous holidays but you need to check.
I have had generally extremely good experiences with the NHS over the last five years - all the staff I have dealt with are caring and supportive and have provided a high level of care. What can go wrong however is the administration and you can fall out the system when waiting for test results. You need to be on top of this and follow up if the results do not come through and understand the timing, Always ask when the results will be sent to you or you have a follow up appointment. If you are not told follow up.
If your condition is like mine I suspect that from now on unless there are complications you will just be regularly monitored to see how your condition develops. I was initially monitored at 6 month intervals with a regular echo and then at 12 months intervals until about a year ago when the regurgitation developed and I had to have loads more tests. You may also depending on your condition have to have other tests like MRIs, CT scans and other forms of echos and stress tests. These are not as bad as they sound
Eventually if you have to have an operation it is quite a big operation (usually I understand that the bicuspid aortic valve has to be replaced and the aortic root and arch repaired) but the prognosis is really good if they catch it at the right time If you look through past posts on this group chat you will see how everyone coped. My understanding (I have not had the operation yet) is that it can take 3-6 months to recover but other members of the group now do hillwalking, running half marathons and it does not seem to have had a major impact on many of their lives. The other members of the chat group are really impressive
So to sum up although it may not seem it now there are a lot of positives that you have been diagnosed so early. This means you can be monitored and this means that the surgeons can operate at the right time if your condition develops. However I hope, in your case, that this may be many many years from now. In the meantime my advice is to live life to the full and try (however hard this is) not to let the diagnosis stress you out too much.
Best wishes
thank you. Really appreciate you reply.
Hi sorry you have been diagnosed with what i think is a heart valve replacement. please try to be calm about this the good news is they have found your problem...easy for me to say that my heart problems are i hope minor.
I will try to reassure you with my brothers heart history. He was born in 1963 and had a hole in the heart this was operated on as a baby then had open heart at the age of eleven. At the age of 28 he had his first heart valve replaced 20 years later he had a second replacement...he's now 62 had other health problems but that is irrelevant to your problem.
So have confidence in the doctors they know what they are doing and i'm sure you will be ok.
all the best Keith
than you.
Good Afternoon, i know how traumatic this is and what you are going through. I had a diagnosis in 2019 after passing out. I was at 5.4 and 5.5cm at the time of my elective surgery in February 2020. You will get through this. I had the aortic valve and ascending aorta replaced. Currently, I’m nearly three years after. I now have slight dilation of the graft (2mm dilation over past year) and now the aortic arch (1mm dilation over the last year). Keep your blood pressure well managed as everyone tells me this is the key to reducing the risk of dilation.
You are at a low level of dilation as surgery is often at around 5.5cm dilation. Happy to answer any questions and all the best.
thank you for your reply and kind words.
Hi I was diagnosed the same as you this time last year at the age 51 with a bicuspid valve. The hospital told me I needed surgery within the next few months. It was a complete shock to my family and myself. I found it hard to deal with at first and speaking to people who have been through the same operation helped me with the decisions I had to make - the valve choice and preparing for the operation. I had my operation on the 12th of August last year and I am now feeling the benefit of the operation and back at work traveling the world with my job. The operation is hard but it’s not as bad as I thought it would be. If you do lots of research not Google research you will be fine. I have since made 2 amazing friends on this journey who both had the same operation last year at the same age. Keep positive, surgeons do this day in and day out, it’s routine for them with a very high success rate. If you ever want to ask me any questions feel free to private message me. All the best and it will be fine.
thankyou. I may take you up in the offer in terms of PM.
