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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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
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.
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 💐
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.
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
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
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
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. 👍😊
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
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 🌸
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🌹🌹🌹
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.
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.
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
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.
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.
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.
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.
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
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.
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
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