I don’t know why I’m suddenely panicking. I have been reasonably calm so far. Not sure what has panicked me.
This year has been very stressful with COVID and I guess I should be glad that I don’t have any symptoms other than some breathlessness. I should have had my valve replaced by now and today it’s one year since I became severe,
I think I’ve mostly gone by the size of my valve now 0,7cm and I know a lot of patients have it done at about 0.5cm. But I’m also reading that it’s more serious than some cancers with half of patients not lasting longer than 2 years.
Can anyone on here tell me their experience of dealing with valve disease that might put my mind a bit more at rest now I’m in the second year?
Many thanks
Susan
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Numberone1
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Hi, I have severe aortic stenosis and only became symptomatic in March this year. (Born with a bicuspid valve) Am going through pre AVR tests just now (angiogram on Monday )
Replacement is usually once symptoms are presenting, are so was told?
Prior to March I was training nearly everyday. I would suggest you speak to your consultant about your concerns.
I know how worrying it can be so ask as many questions as you can.
Thank you. What are your symptoms and how long have you been severe for? I’m obviously not training but still pretty mobile
I have no pain whatsoever, I’m not light headed, I don’t feel light headed. I don’t know how I feel so well and yet be ill. I haven’t slept for the last 2 nights, filled with panic.
Yes, I had a consultation with my surgeon at the beginning of August, to do a further echo and discuss results of anguish etc and ct scan that was done before lockdown. I felt quite positive after that. I have to see an endocrinologist and then can go ahead. My surgeon said my heart is very strong hence why no other symptoms. I have a cardio nurse call me every week to check on me. Etc.
I started going through all the pre testing at the end of last year because my valvebwas 0.8 then. I had an angiogram which came back clear and ct scan which showed a few other things which needed sorting. Then lockdown and everything went on hold, I had and still have been told to just call for an ambulance if I need one but thankfully I don’t feel much different. Got my appt on August which is now being followed up. When will you get your angiogram results? The guy doingbit said it was fine.
So sorry you’re feeling like this, I felt the same a few weeks ago then it slowly goes away then I panic again, that horrible feeling in your stomach, cannot eat etc.
I don’t know why I suddenly panic, but know how you must be feeling it’s just awful.
I don’t know anything about your condition but there’s plenty of lovely people who should help you feel better or understand what’s what more.
Hi, I was symptomatic for over two years before I had my op.
The first 18 months I didn't even know what was wrong with me and didn't see a GP, I just put up with the pain an breathlessness when cycling. In the final year I was diagnosed severe in early May and operated on in late October, by then I was struggling to walk up hills.
Hi I've had 2 AVR in last 6 years. Last one over a year ago. I had a long wait for surgery - it should have been in July/August 2018 but was eventually done in June 2019 by which time I was pretty poorly. Tired, breathless, chest pain and so on.
You seem to have had all the pre op checks needed and you are in touch with a cardiac nurse so you are known to the hospital and they know that stenosis severe. Good news the angiogram was clear, so no bypass needed.
If you are worried/feel worse speak to the nurse and also if you are concerned about symptoms getting worse speak to the nurse. She will give you advice about exercise.
And if you do feel worse - do call an ambulance. I wouldn't hesitate. In my case my GP was brilliant and kept badgering the hospital but I appreciate that in these COVID days its not that easy to speak to a GP.
Remember that for the surgeon and his/her team this op is routine - they do literally dozens per year, which is strangely comforting. For us, on the receiving end, its terrifying and the anxiety pre op is pretty dreadful. Keep speaking to the medics and let them know how you feel, and keep us all in the loop.
You don't say which part of the country you are in, services do vary across the whole of the UK.
Let us know what happens to you please, we're always here.
I went ahead and got my aortic valve replaced and stenosis fixed but he only had to cut my sternum halfway down. That was on Tuesday which was election day here. I have fluid retention though and I'm still in the ICU which is not easy because it's impossible to sleep in here. The doctor said I should be moved upstairs tomorrow however so I hope he meant that. My chest is definitely in much less pain than I would have imagined. I just hope I made the right choice and that they weren't just selling me the operation to make money. This is always a big concern with our broken healthcare for profit in the USA.
Hey good to hear from you. So pleased to hear that surgery went well and you are now on the way to recovery. ICU is a noisy place = no matter where in the world you are - so hopefully you are now back in a ward without too many noisy machines. Recovery is a slow process, your body has been battered around a lot, so be gentle with yourself and take baby steps to start with. Pain management is sophisticated these days so hope you continue not to be worried by pain. Don't be a hero though, if it twinges ask for the drugs. Recovering and pain not good bedfellows. Hopefully you will have been asked to walk around a bit now - its a great release to lose the drains and drips and be independent of the machines - and although the first steps feel like running a marathon, they are such an achievement!
Do let us know how you get on - and how your recovery goes.
I'm back in my apartment now! I was supposed to be discharged Thursday but on Wednesday night my heart rate dropped into the 30s so they convinced me to stay one more night. I was having some pains last night but fortunately I have some oxicodon on hand from a hemorrhoid operation I got a couple of years ago. It was expired but seemed to work just fine anyhow. I can get my drugs and food delivered, so I guess now I just sit here and hope my recovery goes without complications. I'm supposed to spend 30 minutes a day walking, but that should be easy. I was walking around the apartment complex last night without any difficulty aside from not having any stamina, but everybody says that should come back over the next few weeks. They did finally move me into a more hotel-like room on Monday evening, but I still found it very difficult to sleep there. I slept better here but not much. I've read that insomnia is also fairly common after this procedure.
I can only echo the reply by francesw47. Do not be afraid to keep ‘badgering’ the medical staff. If you are feeling even slightly unwell or out of sorts I would not hesitate to either call an ambulance or present yourself at A & E. I made sure when I went to A & E I attended the hospital known for good heart care and surgery. It may seem daft, but it’s the only way I got anything done.
Totally relate... i move in and out of fear all the time, it just comes over me in trying to process all of this. It all began for me with some shortness of breath and slight chest pain 18 months ago. i didn't take it that seriously because i have had difficulty walking and breathing especially on any kind of gradient for a while due to back problems, otherwise i am quite fit. But i got it checked out and each test led to another one. All the time this was going on i was convinced it would all amount to something minor but it turned out i had, had a heart condition for quite sometime. I am scheduled to have valve replacement and triple bypass on the 7th october. I know now i do have a heart condition and it has to be treated because the out of breath and chest pain is constant. I am glad i have finally an operation date but there is still so much for concern for me. I don't know how i am going to cope because i live alone and there won't be anyone else here when i come home after the operation. I still don't know which valve i am going to have and then there is the all pervading fear of if i don't wake up. My conclusion is fear is a natural response and the more i reach out and talk to professionals and the loving people i have found on this site who have been through what i am going through the more i have some settlement that i cant get when i am just going around and around about it al in my head. i still may not have the opp on this date if a more emergency case needs dealing with before me but talking with the cardio team i trust they understand where i am at and what needs to be done but i still need to be checking in with them to settle my fears and opening up on here on any given day about what is troubling me. Wishing all the best, this waiting period really sucks but it does come to end.. x
All the best mate. Hopefully you can find a friend that will stay with you for a week or two.
I too use this forum as a sounding board for my fears and worries and I have certain found warmth and comfort in doing so. I now also offer the same to others and that helps me and them too.
I was recently diagnosed with a bicuspid valve and "moderate to severe aortic stenosis." I am in Texas, however, where there is some financial incentive for doctors to do as many tests and procedures as they can, and some are less scrupulous people than others. I was given these results after 4 tests and $2,500 out of my own pocket, plus whatever my insurance kicked in. I'm a bit suspicious because it seems to me that all I ever really needed was the first test, which detected too much calcium in my heart, and then the echocardiogram, which showed the disfunction of my bicuspid valve. Probably could have skipped the interceding treadmill test and angiogram, but then of course that would mean a few thousand $ less for the cardiologist! Anyhow, I don't really have any severe symptoms other than bicycling up hills seems quite a bit more challenging than it used to, but I figure that might also be because I am 57 now and haven't been bicycling nearly as much as I did when I was younger. BUT, the doctor told me due to the nature of my bicuspid valve, I would have to undergo open-heart surgery (where they chop thru the rib cage) to get it fixed. Well, my dad had open heart surgery in the 80s and I remember the trauma and that hideous SCAR, and vowed that I would NEVER do that myself. That hasn't changed; the cardiologist says I will be lucky to live to 60 without the surgery. But, in this broken, profit-driven healthcare system that we have in the USA I am hoping there's a good chance he might be exaggerating things somewhat, but I have no way of knowing. Anyhow, I feel oddly calm about it; I identify as "gay" and lived the the height of the AIDS pandemic before anybody had ever heard of this PREP stuff, where every cold, rash, or flu made me wonder if I had contracted AIDS, until eventually I just grew rather numb to fearing imminent death. I plan to exercise more regularly, eat healthier, drink less Svedka, and hope for the best. I mean, what else can I do really if the only cure is something I refuse to undergo?
I am sorry you feel you can’t undergo open heart surgery. I had Aortic valve replaced and bypass done 4 years ago yes it’s major surgery but things have changed since the 80s my scar is very faint and the little I can see just reminds me what I have been through and the very clever medical team that gave me my life back. Life is very precious and you have to grab it with both hands, don’t know what trauma you father went through but who is to say that you would have the same. I was in ICU for 2 days 2 days in HDU and 3 days on the cardiac ward. Then it was home. You have to take your time getting back your stamina but if you follow the what you are told 8-10 weeks later your sternum will be healed and your well on the road to getting your life back.
There are many many of us here on the forum who have had this surgery and come out the other side with a mended heart and a zest for life.
Thanks for your reply. I didn't mention it in my original post, but I am pretty much alone in the world at this point (I might "only" be 57, but in "gay years" I might as well be 80!) and sort of dreading the prospect of another 20 years in solitude, so that dampens my own "zest for life". I just don't feel like I want to endure any trauma just to experience probably 20 years of loneliness. But I guess I am a little curious as to just how painful it was for you? I had what was supposed to be the milder form of hemorrhoid surgery a couple of years ago and I don't even think I would be willing to go thru THAT again, it was AWFUL!!!
Oh my goodness you really are feeling down firstly having open heart surgery I can honestly say I had very little pain they make sure of that. And when I got home it was managed just with paracetamol so not a lot of pain. In hospital I was given breathing exercises to do I called them huffing and puffing your lungs take a hit as well as your heart so those I carried on when I got home. That really helps, as long as you follow the rules no lifting your arms above your head and no lifting anything heavier than half a kettle of water so you give your sternum a chance to heal. 8-10 weeks. Gentle walking daily I use to count lamp posts and try and get to the next one on the next walk!
Secondly who is to say what adventures you have waiting just round the corner, you will be doing different things and going to different places and meeting different people with your heart issues. Who knows what fate as planned for you😉 I realise what a scary place you are looking into but it’s not as you imagine life can still be good.
If you want any more information about the surgery just ask someone will be along to help.
Hi I was diagnosed with severe aortic stenosis out of the blue about 18 months ago and have been through a roller coaster of emotions since then, as I'd never been ill before that and am still learning to cope with the idea that I'm not invincible and even worse - there's nothing I can do about it. I'm still not sure if I really get many symptoms as I only seem to have them when I worry about it. For me the two go hand in hand - worry and symptoms. I do get out of breath a bit walking up hills, but not enough to stop walking or talking. It's a huge roller coaster - one day I think it'll be 5 years before the op and the next day I feel like I'll need it tomorrow. I've had 2 echo's so far and my valve has been 0.7cm on both. No-one's ever mentioned 0.5 as being a critical point, but then I've had more informative conversations with the technician than anyone else.
I think we must be grateful that we've been diagnosed and are having regular checks and trust that we'll get the op when we need it. The lack of communication due to Covid is not helpful with dealing with the emotional side of a diagnosis like this. It's good to have a place like this to 'vent' and share feelings that must at times seem crazy to other people, even those close to us.
Oh goodness me, it sounds so familiar! I had no real symptoms other than breathlessness, when I passed out on 30 December last. Taken to hospital, given ECG, told I had a heart murmur and should consider an Echocardiogram, which would take weeks to arrange. Told I was OK to fly. Went to Spain in January and flew to Amsterdam in February. Felt unwell and Dr called to hotel. He contacted cardiologist and I was admitted to hospital. Had Echo next morning. Diagnosis was Acute Aortic Stenosis with syncope. I was allowed to travel home, but couldn’t fly! Had to rearrange flight for ferry. Tricky journey home to Hull, but storm Ciara struck and we couldn’t dock - waited 8 hours out at sea.
Finally arrived back in England and went directly to LGI. Was admitted and kept in until they could operate. The consultant said stenosis is graded from severe to acute and then me - I was off the scale. Finally had my new valve in 20 February.
The point of telling you all this is that you have a way to go, it seems, before you get to where I was. Whilst not wanting to shrug it off, I was totally unaware of how ill I was and how close I came. The op was still carried out before my appointment for an EKG in England.
I am now fine and completely indebted to the doctors at LGI. So much so, that I’ve spent lockdown learning software to produce a video of my choir. I am trying to get sponsors for Take Heart charity at LGI. If anyone wants to listen to the results of my project, go to the What’s On page of Fairburnsingers.co.uk for links to the video and the donation site.
I really hope this reassures you and helps you to feel less anxious. My very best wishes for a speedy recovery when your op finally happens. I was only in 6 days after receiving my new valve via OHS.
I went to a second cardiologist who said he could replace my valve and only cut halfway down my sternum so I allowed him to do that on Tuesday. I mean much less pain than I would have expected but my stamina is completely shot. All the nurses and doctors say that that is completely normal though and it will come back over the course of the following weeks. I seem to be having more of a problem with fluid retention though so I am still in the ICU and having a very difficult time getting adequate sleep. Anyhow at least we got rid of that monster Trump which was very uplifting for me! They also fixed my moderate to severe aortic stenosis.
I assume I was severe for a couple of years as I started to feel walking uphill was hard work around 2 years ago but I thought I was just getting old. Last November because of my family history, and as bicuspid becomes problematic around age 60, I thought I would mention to the doctor and was referred. Didn’t get echo/cardiac consult until Feb when I was diagnosed as critical aortic stenosis (<0.5) and told to stop doing yoga but could still carry on walking and working Quickly referred to Harefield for angio and then told i was urgent for surgery in the next month. The advice at the time was listen to your body and if breathless/chest tightness rest so I carried on my usual 8000 steps but avoiding hills, not running for trains, walking a bit slower. Then lockdown and everything cancelled but told if chest pain that doesn’t go away dial 999 but as I was then working from home very little exertion so apart from a few symptoms when out walking all ok. Eventually operated on late August scheduled not emergency.
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