Travelled off island for the second echo (rescheduled after covid delays) having only been diagnosed with moderate valve disease (novel) last year. I had pics and videos of my first echo and managed to video the entire thing this time.. The cardio physiologist doing the exam gave nothing away except his nonverbal communcation looked concerned. His only feedback was he "has to discuss it with the consultant" but when he left the room I read his notes "aortic and mitral replacement."
Now I have to play the waiting game til the report comes through and then my consultant, with all the bedside manner of a dead rat, to no doubt send a letter and not discuss the results on the phone. What concerned me is the physiologist saying" but you don't get breathless, right?" I corrected him saying, but I do, and I tried to tell the consultant this on telephone consult a month ago, but poohpoohed as" yeah I don't think you being breathless is to do with your heart."
Now I'm no cardiologist but even comparing the colour contrast scans the regurge is noticeably worse this time,and I am now once again, playing a very unsettling waiting game π
My next thoughts are thrust into my future and the fact I wana have a family... Do u try do it before I need surgery, or after? I the read up that post valve surgery pregnancies have 44% chance failure (for various reasons).... Why oh why did I Google scholarly articles on it??
π€¦π»ββοΈππ
33 and new to this π nothing romantic about this novel condition. π€·π»ββοΈ
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Laow
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I see quite a few consultants, for various things, the hardest to work with, by far, is the cardiologist. I've not seen mine for 22 months now because I challenged him about why the content our conversations are very different from the letters he sends my GP. I also asked if he would put his hand on the knee of a Male rugby player and say "I dont want to over test you"
A consultant in a different field explained the echo quite well. He said if two people were looking at the same cloud, but from different places, they wouldn't see the same thing. It subjective. All my scans have shown the same, apart from one where I was miraculously cured. I wish! It's the cardiologist who has the final say on the scan.
That doesn't make it any easier for you of course. But you are not alone, if that helps
I only look at gov.uk sites when I google for medical info. But then again, I didnt want to know the details of what went on within my heart.
To balance things a little, my consultant was caring and even rang me at home to let me know what was going on.
Because the NHS couldnt do my op I paid for private treatment. The consultant was keen to explain everything and even brought in a second consultant to give an opinion on which op I should have.
Baby or op. What a dilemma.
As a mere Male I would go baby first, then op when I have to. I also think your partner and/or whoever might help with baby care, should have a very big input to your discussion.
I am 3 months post op and feel quite good. But I reckon it will be 9 to12 months in all before I can really get back into gear. My physical strength is hopeless at this 3 month stage.
I had an AVR, open heart. TAVI was an option, but the consultants veered towards the open heart. And they could pick and chose which valve to use. I am told that the valve cost is Β£23,000 but they only charged me Β£9,000. Not sure the NHS would give that choice. TAVI costs more than open heart, which really surprises me.
I needed the op immediately, I was at deaths door. The NHS were not doing any cardiac surgery at that time (April).
I would have been the 35th person on the urgent list at Basildon NHS.
Would I have survived ? Highly questionable.
Cromwell hospital took me as an inpatient, did the tests and operated pretty much imediately.
Never the best moment when the echo technician says they need to go and discuss things with the consultant. I had that happen as well. It would have been better if the consultant had come to see you at that point. Otherwise I guess you feel everybody knows something and you're being kept in the dark. The waiting game is no fun. I wish you well.
Totally how it feels. Stupid me decided to save kids from drowning yday and had suspected nstemi in the water on way bk to shore π think the cardiologist might pay attention now... In MAU overnight n waiting cardiologist now x
Oh no! Really bad outcome for you, but amazing what you did for the kids. You should be very proud. How are you feeling? You are in the right place at least. Take care
Well knackered and drained. Initial ecg showed elongated St and atrial transduction delay. Xray showed csrdiomegaly. And troponin was elevated. Gotta have another echo on island to see if there is any damage to my heart from it all. Jus hadn't realised how much my AR/AS/MR/MS would have affected my fitness levels as I guess I've not exerted myself under such stressful situations before; a daily slow sea swim isn't quite the same as sea rescue 40mtrs out and mid rip tides... Lol xxx
Please update us after you've been seen this morning (WOW good on you for the sea rescue!).
As for planning a pregnancy before the valve replacement - don't. Yes, there is a chance of a failed pregnancy post-replacement but the strain of pregnancy pre-op is worse, much much worse.
Too long a story to post here, in short I've had Rheumatic Heart Syndrome since the early 1960s with a small amount of scarring on my aortic valve. I was told early on pregnancy was not advised - I got pregnant without consulting my cardiologist and consequently had a very difficult time of it. Yes, the wee lass survived (she's now 42yo with children of her own) and I did as well - but it was a very close thing! The next time I fell pregnant I did so under strict medical supervision, lost that one but later fell pregnant again under supervision and had a very trouble-free pregnancy and delivery - he's 38 and the father of two of his own lads.
I've not had an AVR - yet, my cardiologist says I may need one 'someday'. And clearly I'm past childbearing. But the advice hasn't changed from the '70s and '80s - heart valve issues and pregnancy require strict medical supervision as pregnancy puts an enormous strain on a compromised heart valve. Don't risk it. The waiting is horrific but losing a pregnancy (or dying) is worse.
Well I was discharged after second ecg normal and troponin dropped a bit. Going for another echo soon - post event if u will - to check for any physical damage.
Discharge report states it was probably stress and strain induced cardiac event and to have second echo. Does not even state I was given aspirin, gtn and summat else (can't remember the name) but guess that'd be on a and e discharge to ward notes? Went to bed last night at home with some pain in Central back, left arm /arm pit, and up neck. Not agony tho, so I really don't know what to distinguish between say heart related pain and perhaps muscle strain from the swim? This morning, got central upper a do discomfort, speshly when I lean forwards so sat at 135 degree angle to be comfortable lol still no idea what to look out for regarding pain and at what level to be concerned tbh, I have chronic lower back pain but my tolerance is pretty high - I dint take my pain meds til I'm unable to walk tbh so am stubborn too.... Guess I will see when they arrange an echo and talk to the physiologist then, hoping they have better bedside manner and can explain to me what to look out for. π€·π»ββοΈ Still debate mentally whether unfit or heart condition causing breathlessness and light-headedness yano, but definitely not doing an 80metre swim against current again! Waiting game again for results echo from Portsmouth and now waiting for another to be performed on the Island... π€·π»ββοΈ
As for the pregnancy stuff... Kinda cried a little. Only this past year or so have I been contemplating it, and I know my body clock is ticking. But would they do AVR "prematurely" perhaps in the eyes clinically so that I can get pregnant? Or do u just do what I wana do? I just wish I could have a face to face with a consultant or professional with some bedside manner in order to have that discussion... Perhaps a cardiac nurse would be better as, unfortunately, even from professional experience as well as personal, it seems nurses have that degree of compassion that most medical professionals and doctors don't. It's something I get quite emotional about atm as I don't want to "miss the boat" where my age and pregnancy is concerned and never anticipated that when I did wana try, that I'd have something significant as a potentially deadly condition to consider πx
I'm so sorry for the pregnancy fears you have. It must be consuming. It is definately a conversation the cardiologist should instigate when they send you off to "wait it out". It's not exactly hard to say "are you planning children" I'm not sure why they dont as it's so serious. Embarrassment? Or maybe it doesn't even cross their minds? It should, especially someone of your age. Mine never mentioned it. But my ID consultant, who sent me for the initial scan did. I have 10 years on you so i chuckled. He was deadly serious and said there is plenty older than you who have babies, I see them all the time. You still have time x
Well my luck gets better. Decided to have a night out at a friend's last night and came home to day to a broken into flat, back door smashed and glass everywhere. Waiting on the post event echo but stress levels are through the roof atm πππ
Not really had a long face to face with my consultant ever and feel like the rapport is completely gone so no idea if I'd wana talk to him personally anyway. Is something very important to discuss though so will have to do so xxx
Jeez, you really must feel the universe is having a serious go at you, what a horrible thing to have happen on top of everything else. Were the police interested in coming out and making a report for your insurance?
(((HUGS))) I hope you're feeling a little less shaky (I'd still be shaking, part fear and a lot more part completely furious) and nothing irreplaceable was stolen or destroyed.
Still waiting on scene of crime officers to come and so still have glass all over my lounge. Sleep is awful, waking gasping for breath and plagued with nightmares, not jus from drowning but being broken into. Rented accommodation so yet to deal with letting agent/landlord as bank holiday noone returned my emails or calls π nothing stolen but jus feels so unsafe and personal x
People say they feel violated when their home is broken into and I think that a perfect description. Your home is supposed to be the one place you're safe and when it's broken into and vandalised, it is a terrible violation that steals any sense of safe and secure right the heck out from under you.
I was broken into a few years after my husband died and I felt sick for months after. My son and his wife moved back in with me for a time but in the end I sold that house, I just never felt safe there again.
If you find it difficult to communicate with your cardiologist ask your GP to refer you to another centre. I did as felt being dismissed by first cardiologist, so did some research then asked GP to refer me to another hospital for second opinion.
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Heart echo
Newbie and scared
Annoying !!!
Leaky valve question.
Stent in November now diagnosed with Leaky Aortic Valve
