Hypertrophic cardiomyopathy: Well yesterday i found out... - NRAS

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Hypertrophic cardiomyopathy

sylvi profile image
60 Replies

Well yesterday i found out what was wrong with me and it didn't sound good. I have Hypertrophic Cardiomyopathy what a mouthful that was and i have a job remembering how to pronounce it. Well the consultant was lovely and he was cross that it hadn't been picked up when i had sepsis as it was there when i was in hospital then. I didn't have a follow up from when i had the sepsis. He asked about my family and who i had like siblings and children. He has said what i have wrong with me is inherited. So was told to tell me to get them to see their dr to get a echocardiogram and a ecg to check their heart. I have to have a couple more scans to check to see how severe it is. He has also said i can't have open heart surgery as he said i wouldn't survive it. He did say i could have the valve sorted out i will have it done through a vein in my leg. He has said when i have had the surgery i will have loads more energy and i will be able to breathe a lot better after i have had it done. I am to go back and see him in two months time and hopefully he will have a date for the surgery. I don't know what i expected, but that wasn't it. I had never even heard of it let alone to know i had got it.

I had rang my brother and sister to tell them and both of my children have been told. So now i can tell people what happened yesterday.

Thank you all for your kind wishes from my post earlier in the week. It was so kind of you all. I don't know what will happen if i get worse in the meantime. I will have to go to A&E if i do get worse.

Love me.xxxx

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sylvi
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60 Replies
Madmusiclover profile image
Madmusiclover

Well that’s not good, but what a relief to have an answer to your issues. It’s all a bit luck of the draw consultant wise isn’t it? Yes; go to A and E if you get worse in the meantime. Sending heaps of good wishes. Xx

Mymymy profile image
Mymymy

Hi Sylvi, keep up with your good spirit. Sending good thoughts your way...

ruth_p profile image
ruth_p

So glad you have finally got a diagnosis even if it’s not one you wanted. Hopefully they get you sorted soon. Take care of yourself x

weathervane profile image
weathervane

Keep well and stay positive, hopefully you get an appointment soon and the procedure will go smoothly, best wishes 🤗🤗 xxx

helenlw7 profile image
helenlw7

This isn’t the news you wanted, but at least you know what it is you’ve got. I hope the valve surgery comes quickly. Thinking of you and your family.

Monkeysmum profile image
Monkeysmum

Thanks for the update Sylvi. Sounds like a lot to take in and process over the next few days. Sounds like the good news is the hope of feeling much better after the op, I just wish you didn’t have to wait so long in the meantime.

Peptink profile image
Peptink

Wishing you well. Like you said, at least you know what it is. Keep us updated. I hope you’re feeling better soon. 💕

Fruitandnutcase profile image
Fruitandnutcase

I’m glad you have a definite diagnosis Sylvi but I’m sorry it’s not a very pleasant one. At least you know what’s going on and if you do end up in A&E (hopefully not!) they know what they are going to be dealing with. Look after yourself 💐

Pippy25 profile image
Pippy25

A virtual big but gentle hug for you sylvi xx

Mmrr profile image
Mmrr

Sending best wishes sylvi

Stills profile image
Stills

Thinking of you

Bella59 profile image
Bella59

Thinking of you, sending best wishes your way.

Bessieboo1 profile image
Bessieboo1

it makes things easier sometimes when you have a diagnosis and also when a plan starts coming together. I hope that you get the other scans done quickly and that you won’t have to wait too long for your valve replacement.

Keep strong and sending love and hugs xxx

sylvi profile image
sylvi

Thank you all for your good wishes and being so kind to me. I do believe half the battle has been won with the diagnoses. xxxx

CallMeSunny profile image
CallMeSunny in reply tosylvi

You’re right Sylvi, it really makes a difference to know what you’re up against and also to have a plan going forward, despite not having a date yet. Do let the booking secretary know you would like to know of any last minute cancellations (in case you’re in the fortunate position you can act pretty quickly to get to hospital). Thinking of you. X

Honeybee61 profile image
Honeybee61

Yes, I agree Sylvi. Knowledge is power and all that! Sending "cwtches" from Wales. Take care🌹xx

CagneysMum profile image
CagneysMum

I agree. It’s so much worse not knowing, even if it is a shock to begin with. Now you know what you’re dealing with and can concentrate your focus. Sending best wishes and the determination to help overcome this. Xx

nanny_bee71 profile image
nanny_bee71

At least now I guess you know what you are dealing with - still amazes me that with even with your condition you have to wait 2 months before you get a date for surgery. The good news I can pass on - a friend of mine had the same condition and had the valve sorted via a vein in her leg 5 years ago and still going strong at 86 years old. Upward and onward and good luck going forward

strawclutching profile image
strawclutching in reply tonanny_bee71

I was thinking the same about the two months wait for just a date for surgery, especially with the expectation of all that renewed energy. The sooner the better, then it's onward & upward for Sylvi. 👍😊

sylvi profile image
sylvi in reply tostrawclutching

I need some scans first then I will hopefully know more then. xxxx

sylvi profile image
sylvi in reply tonanny_bee71

That bodes well for me then darling. xxxxx

Feank profile image
Feank

Wishing you well. Keep posting your lovely flowers 💐 take care x

sylvi profile image
sylvi in reply toFeank

Here you for you a dahlia, xxxx

Peach dahlia
Feank profile image
Feank in reply tosylvi

Thank you that's made my day! Look after yourself and stay strong and positive. X

MaryTH profile image
MaryTH

Hi Sylvi well fingers crossed you do no get any more problems before your op. It is terrible that people are not followed up isn’t it. I should have been seen in dermatology for some mild skin cancer back at the end of March but just keep being told they have no appointments. Anyway you take care and rest up xxx

sylvi profile image
sylvi in reply toMaryTH

Keep on at them darling. xxxx

Durrell profile image
Durrell

Oh Sylvi what a time you ve had, like many are saying here it’s a shame you are waiting 2 months for the appointment to be booked. I think it’s great that you can inform family to be checked out, I’d be very grateful for that, I hope that they are all in the clear 🤞. But for you now just take life easy no running marathons, save that for later, take care big hugs 🌸

sylvi profile image
sylvi in reply toDurrell

Marathon i couldn't run a spring even a snail can move quicker than me.lol. xxxxx

Haz58 profile image
Haz58

Dear Sylvi so glad you at least know what it is now. A 2nd cousin of mine had this at 30 years of age a couple of years ago. She is fine now. All her family had to have ECG's etc it was a worrying time for them all but they were all fine. She was the only unlucky one to have it. Sending you hugs and strength. Xxx🌹🌹🌹

sylvi profile image
sylvi in reply toHaz58

Well i hope i am the only unlucky then darling.xxxx

Evaflo10s profile image
Evaflo10s

Thinking of you and wishing you well 💐

ABwn profile image
ABwn

So sorry to hear the outcome Sylvi. Take care. Did the consultant mention that if it got worse you could contact his secretary? Just a thought. Sometimes they do. Thinking of you.

janmary profile image
janmary

better to know than not know - and better for the surgeon to have all the results back so he has the fullest possible picture before surgery.

kennethb profile image
kennethb

Hi, what heart medication are you taking? Do yiu have excessive palpitations or atrial fibrillation?

sylvi profile image
sylvi in reply tokennethb

Nothing all i had was a murmur earlier in the year.. I am now on Beta blockers, not that i think they are making much difference.xxxx

kennethb profile image
kennethb in reply tosylvi

Beta - Blockers help to prevent Arial Fibrillation. Ideally you should have a portable BP device to periodically check on BP which may drop too low. if it goes too low you will feel tired. Check with your Medics if you get any episodes of your heart racing.

At some stage in the future you may need to have an ICD fitted but for now you seem to be OK.

Wafflefan profile image
Wafflefan

Sending you hugs. Like you said half the battle is the diagnosis and what a mouthful it is! Wishing you and your family all well. 🫂

HappykindaGal profile image
HappykindaGal

Sending you lots of love Sylvi ❤. Hope the op won't be too far away xx

Warms hugs xxPositive news they can do something to help x

Evie3 profile image
Evie3

Scarey but sounds like you have a great consultant and a plan in place to help you. I was diagnosed with Left Ventricular Hypertrophy couple of years ago but it is just monitored. Must admit I didnt ask questions but when you have so many things wrong 🤷‍♀️. All the best

stbernhard profile image
stbernhard

Hello sweetheart, a good friend of mine had this done recently and he's a lot better now. Like you he can't have open heart surgery, si they did it through a vein. He recovered very quickly. I hope it'll go as well for you.

sylvi profile image
sylvi in reply tostbernhard

Thank you darling. Thankfully i have seen on tv the sort of surgery i am to have so it doesn't bother about it darlung. xxxx

barbieg profile image
barbieg

I’m so surprised you have to wait 2 months to even get a date for your treatment but at least you know what the problem is now , even though it’s a shock. Wishing you all the best and hope it’s not too long before you get a date.

Intheend profile image
Intheend

Joining everyone else in sending best wishes at this difficult time . Hope you get an op date very soon

jojoishere profile image
jojoishere

Sending you lots of love, and hugs sylvi, 🫂 like others have said I'm so glad you have a diagnosis, and they can sort you out. Best wishes xx

Gnarli profile image
Gnarli

Thank goodness they've finally found out what is causing your troubles even if it does sound scarey. The doctors will be keeping a very close eye on you now and, fingers crossed, you'll get your treatment very soon.

Green230461 profile image
Green230461

Wishing you well Sylvi take care🌈❤️🙋🏻‍♀️

WilfDog profile image
WilfDog

I hope your treatment improves your quality of life. It sounds like you have a good consultant. Imperative for a positive outcome. Sending you lots of love.

sylvi profile image
sylvi

Wow what a lot of replies from you lovely people. Thank you all very much for your support and useful comments. xxxx

JFlay profile image
JFlay

Sending you best wishes x

Chrissycl profile image
Chrissycl

Swings and roundabouts, some relief to get a diagnosis but now worry over the diagnosis, complicated now by also worrying about others in your family. I hope things go as well as can be for all of you. Hugs and wishes for you

Pastels profile image
Pastels

sending you all the very best. Xx

Blackwitch profile image
Blackwitch

Oh Sylvi! I don’t know what to say apart from what everyone else has said. At least you now have some answers. Take care and lots of love. Nic xx

Madewrong profile image
Madewrong

Wishing you all the very best with your health Sylvi xx

Bizzie profile image
Bizzie

Sorry it wasn’t the diagnosis you would have hoped for and isn’t it awful when they say they can’t do something because you might not survive?! At least they have an alternative to offer and oh! how wonderful is the thought of having loads of energy!! I can’t remember the last time I had any energy to do more than the basic personal tasks.

Wishing you good times ahead Sylvi xx

nanapat61 profile image
nanapat61

Sending best wishes to you, Sylvi - hope you get sorted soon and manage to stay on an even keel while you're waiting.

ExAcc profile image
ExAcc

Take care of yourself and I hope the Op goes well. X

sylvi profile image
sylvi

Thank you all very much, I spoke to my gp this afternoon and it seems i am a bit worse than i thought as the gp says the scans i am to have have been marked urgent. xxxx

Bright pink Dahlia.
Wafflefan profile image
Wafflefan in reply tosylvi

Sorry to hear that Sylvi. 🫂Hopefully that means things might move quicker for you, and then you'll be on the up. Keeping 🤞for you.

Elephant100 profile image
Elephant100

Saying a wee prayer for you and sending hugs 🫂

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