Hi guys sorry if I ramble I'm new here hope I hit all the main points along the way 😂 OK February 14th 2018 is the exact date I found out my heart wasn't working as it should be. I had my first scan that day and within an hour of leaving the specialists room my Dr's are calling me to see me urgently 😒 they tell me my one valve is leaking (blood flowing backwards before the valve has time to shut) blood pressure was a tad high so I'm put on bisoprolol 1.25mg.. next appt I'm told to take 1.25 ramipril as well as upping dose of bisoprolol to 2.5mg..next scan I'm told the leaking isn't that bad, results from that test tell me they've found a hole in my heart 😑 carrying on with given doses then I see my specialist Dr mystery who goes on to tell me he isn't too worried about the hole either but he's sending me to stoke for further tests as there's some weakness in my heart..previous to me finding out about my heart issues I'd been suffering with pnemonia and pluracy for best part of a year (absolute HELL on earth) it was during this illness my own Dr sent me for chest xrays where they found my heart was slightly enlarged and there was fluid around it 😑 (actually thinking now, maybe I should of told that part first 😂 ) anyway, my last visit to the specialist as well as sending me to stoke he tells me he's upping my med again but I'll wait until Sept to do so when I see the heart nurse..so today I've had the referral from Stoke and the head of the letter says
For: MRI cardiac myocardial viability
I have absolutely NO idea what this means or why I'm having it done? Well, obviously I know why I'm having it 😊 but what I mean is what what is this test looking for? Do all heart disease patients have it? I've tried looking for an answer that Is straight forward that I can understand but I'm at at a loss and worrying myself silly here about it. .I've no definite answer as to what's wrong with me, only that it just isn't working as it should be? Specialist also said it could be that my heart was inflamed due to how poorly I'd been and maybe it's correcting itself as by the second scan the inflammation had reduced a little..so I guess I'm hoping there is someone else who's similar to this situation who can shed some light for me..sorry if I've rambled 😂 and thanks in advance for any replies, advice and help 😊 xx
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Ladyxcee
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I’m not medically trained, but I believe that the MRI is to see how well the heart muscle is working. I had one at Oxford earlier this year. I’m also on Bisoprolol and Ramipril as well as some others. If you can tolerate the Bisoprolol they may increase the dose so don’t let this alarm you. It knocks some people for six but since you haven’t mentioned it it sounds like you’re OK with it. Keep an eye open for swollen ankles and see your GP if it occurs.
At this point there could be a number of causes so you need to let your specialists crack on with their tests and investigations. I found my heart nurse to be very helpful so go armed with your questions. Alternatively, come back here with your questions and hopefully someone will be able to answer. Try not to worry as no good will come of it. If it was more serious then the investigation would me moving at a faster rate.
Hi ian thanks for your reply 😊 oh how easy you made that look explaining all that away 😂 really appreciate it, thank you..I forgot to mention in my mad rush to get it all out that I also take furosemide, I've always had excess fluid in my legs. .not severe but enough to leave a pot hole when I press it hard, also during the pneumonia and pluracy thing there was a coughing up of pink foam a lot for a 2 week period..at the start of foam episode it would literally rise up my throat of it's own accord and start pooling in the back until it fell from my mouth (sorry TMI eek) it seemed to like, fizz 😑 gross sorry..my lower belly also had odemia (swelling) along with my legs..Dr put me on the furosemide 2x a day which along with antibiotics and omreprazole cleared it up and touch wood it hasn't happened since so I'm unsure if that was a heart or lung thing or just the fact I was so damn poorly for so long. .I hate the not knowing or what's to be of it, Id just rather know here and now and crack on with things regardless..if only life worked that simple huh 😂 xx
Yes - I’m on furosemide too. I had fluid on the lungs when all this started and I’d had a persistent niggly cough. I ‘crackled’ when I breathed. It all makes sense now but as a typical male I was slow to do anything about it 😉
I was diagnosed with heart failure (clearly not as fatal as it sounds) due to Left Ventricular Systolic Dysfunction. I have Dilated Cardiomyopathy (a big heart? 😉) and now being treated by an EP (Electrophysiologist). I had a cardiac ablation just over a week ago (an easy procedure under general anaesthetic from my perspective) but I will be needing a further ablation and pacemaker at the end of this month.
My biggest concern all along has been how long my journey was taking. Does this make me impatient? I realise that the NHS has to prioritise any more urgent cases but, like you, I needed to know what the outcome was going to be. I was fortunate to be able to call on private health insurance and had a fantastic recommendation from my GP.
Oh my Ian, you were doing so well until we got to the word ablation 😂 but that aside I'd say our stories are pretty similar here as I TOO crackled when I breathed , prolonged cough and what not..one thing I am not feeling which I think is baffling the Dr's and that's breathless of any kind, nor do I feel any extreme fatigue 😑 I really have to make a point of telling Dr's at each apt that my breathing is absolutely fine now..peak illness I couldn't sleep without literally jolting upright suddenly to suck air in, sleeping on my back was an absolute NO NO and I could literally (might sound odd here) hear my heartbeat coming out of my mouth when lying down with my mouth open 😂😂 my husband turned to me one night and was like WHAT THE HELL ARE YOU DOING 😂 odd sound like a little pant or something but now I don't have any of those symptoms at all..feel bit of a fraud if I'm honest but they insist they cover all aspects and I won't argue it..have you had any genetic testing at all? To see if your heart problems are hereditary? I have to have that done soon too, my dad has heart failure, his mum and his dad also his sister and my cousin (dad's sisters daughter) too..we all have issues with our hearts so obviously they want to see how likely my children are to have issues too..of all the things we could pass down, a dodgy ticker is most likely. .shame as I'd of rather passed my amazing wit or something else 😂 xx
Your story is very similar to mine (even down to the strange breathing). I've used the phrase 'feel a fraud' too. Until the fluid on the lungs episode I was asymptomatic. Even on meds, I am OK but can get exhausted quickly. I can walk for several miles, seemingly limited only by time available, although my heart rate is higher at the start. My condition worsens with stress and anxiety so I destress as much as possible. I'm on sick leave (work stress) and limiting my driving. Emotionally, I'm in a good place. I don't fear a pacemaker.
My father had several heart attacks from his mid-50s and suffered a terminal one at 76. Tests have shown that I haven't had a heart attack. My children are aware of a potential need for screening but a possible problem is that their GPS may treat them as hypochondriacs. This is still playing out.....
I recommend you do your research to find a good cardiologist and EP if appropriate. If you find yourself needing an ablation then it's nothing to worry about. It's not surgery, just a small procedure that they do through an artery. Even though I had a general anaesthetic, I was sat up (rather: reclining) having a meal within a couple of hours of coming round.
Would an ablation be where they insert a pipe that kind of seals a hole by any chance? My Dr has told me that's how they'd fix the hole should they feel it nessesary? The thought of having heart surgery absolutely terrifies me 😕 when my appendix almost killed me all I could panic about was if I'd die whilst under the knife or not 😂 last words were literally "please don't let me die" so dramatic honestly..even the term "heart failure" makes me sad..that Stems from learning my dad had the disease and Dr's giving him a prognosis of around 12 years of life left or something awful..I was still young myself and all I could think about was how I'm going to be losing my hero too soon I literally cried myself to sleep for years about it 😂 that in mind just the term "HF" has always meant early death to me. .Dr said he hates using the term heart failure for this reason and to be fair he's been fab in keeping me calm..not an easy task I mustsay 😂 how long have you known about your heart problems? My cousin has the enlarged heart it's also stretchy and "floppy" I don't remember the medical term for it eek xx
This all kicked-off for me almost a year ago. (I’m 63 now.) Although I expect some effect on my life expectancy, I need to get to the end of my treatment before I start the clock 😁. Both my father and grandfather lived to 76 so that’s my benchmark. Many people don’t even make it
to retirement age 😟.
I can’t help with details on fixing a hole in the heart. An ablation is where they destroy those pesky cells creating rogue electrical signals that trigger a heartbeat. They use either heat (RF ablation) or intense cold (cryogenic ablation) to do this. It’s not (open) surgery as they thread catheters through an artery at the top of your leg to do this. It’s a routine procedure these days although I think it’s still worth seeking-out a centre of excellence if you need this. Perhaps your Dr was describing a similar method to fix a hole in the heart via an artery too.
I’m sure you’ll be fine. Don’t worry. You’ll only increase your anxiety. Although the NHS has its problems, medical advances have come in leaps and bounds in recent decades.
Oh bless you Ian love reading your replies, you have definitely made my mind at ease about the up coming apts, I'm a "slightly" younger version of you at the age of 37 😂 the hole fixing thing is exactly what you described only it goes in through the neck 😑 I definitely feel a lot more optimistic about everything now thank you , if also like to keep you for the duration of my journey please? 😂
Hello and Welcome as Ian says they would move faster if they were more concerned. In the meantime what about discussing everything with your GP just to go through things. Also it maybe helpful to ask at your appointments to receive all copies of your consultant letters I always check what they write about me and monitor all of my tests! Start a list of questions as well that will help get the best from your appointments. Hope everything gets sorted soon. Take care. Zena
Hi zena thanks for replying , some good advice here as I amentioned absolutely terrible for leaving the office then realising all the stuff I didn't ask but should of 😂 my own Dr has been an absolute god send and he humours me with all my worries and daft questions bless him, just thought with this one I'll give him a break, poor thing has earned it 😂 xx
Thank you so much for asking your question, it is exactly what I was looking for. 2 weeks ago, I went for a routine echo scan-following bilateral submassive pulmonary embolisms, the back end of June last year-and immediately taken to the CCU ward, where I was informed, I had another clot in the left atrium-even thought I had been on blood thinners since June-they have allowed me home yesterday, with very little information-but arriving home I have appointment’s, firstly an MRI Cardiac Myocardial Viability scan on Monday morning, Tuesday morning back for bloods, then a CT Cardiac Angiogram, on Saturday morning. Rather scary at the pace it’s now going. Being home and reflecting where has this all come from-my beautiful father died instantly at 77, we never knew he was ill, he never went to the Drs, and never, ever complained of feeling ill, mum just woke up one morning and found him, absolutely heartbreaking for us all, but certainly the way dad would have wanted to go out of this world, but certainly not as early has he did. I have spoken with my Uncle-Dads only surviving releative-he has been diagnosed 3 days ago!!!!, with an hereditary heart disease-he is a very active 82-so hopefully now that they possibly have found something, I am in the early stages of whatever it is, and will be fine. One thing that has come out of all this, is to do as advised-we were all told after losing Dad, to go to our Gp and request testing, but like dad-who has paid with his life-we thought we all knew best!!
Hope you all get a clear diagnosis and stay healthy ❤️
Hi poppysnana, I'm so sorry to hear of the tough stuff your dealing with right now, absolutely terrifying isn't it? Like me it sounds like your first experience with heart problems are from watching your dad leave too soon, it leaves a massive stigma about the phrase "heart failure" doesn't it? Since seeing a heart nurse every month though has really helped me see it differently, she told me 80% of heart patients are treated with just medicine alone, which I found very comforting..good luck with your journey, I wish you the very best outcome 😊 xx
Gosh, Ladyxcee, reading your reply has eased the worry somewhat. Thank you for that. I suppose it is definitely the fear of the unknown, but hearing from someone who is going through the similar pathway, makes it that much easier. Good luck to you too, I hope you keep tip-top, and continue to enjoy a long fruitful life. 😊
Oh I'm so sorry again I've only just seen this reply, I'm absolutely useless arnt I 😂 I hope you are doing well? Have you got yourself a heart nurse? They're a god send honestly but if you haven't got that far yet and need a little help or a chat in the meantime feel free to directly message me xx
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