Hi everyone. I was diagnosed with a large hole in my heart last December, at which point my right heart was stretched out of shape. It was a massive shock as I had no symptoms. The doctor who gave me the diagnosis said that once I had the hole closed, hopefully the heart would return to normal.
Fast forward to today. I had the hole closed through OHS in June and the post-operative echo was very positive. Yesterday I had an echo at Papworth before a different consultant broke the news that my right ventricle isn't pumping normally. It's estimated to be moderately impaired. There's the hope that as my heart continues to remodel (and get over the 2 months of atrial flutter during the healing) it will see some improvement, possibly to being only mildly impaired, and they've added Spironolactone to my huge drug list to help this. I'll have an MRI in Spring of next year to look more closely at how it's getting on.
I'm absolutely gutted that the surgery has not spared me the heart failure that it was supposed to - though I accept HF may have been more severe and brought with it symptoms had I gone another decade with the hole. At the moment I have no symptoms at all - I've been back in the gym, cycling to work, and am on couch to 5k. I have no idea what to expect with all this, but needless to say I've gone from feeling optimistic about the surgical recovery to a very Black Friday indeed.
There must be other people on here with RV impairment. How are you getting on? How long have you lived with it, and how does it affect your life?
Thank you x
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LadyZ13
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Sorry to hear your news especially after all you've been through. Looking at the positives there's every chance that your heart will continue to remodel in a positive way and the impairment will not be noticeable down the line.
Thanks Nick. I hope you're right. I think after all the assurances before surgery, they're now being careful not to plant any seeds that would lead me to assume all will be well. I don't know what the chances are of improvement and am being careful not to hope - more optimistic that the impairment can be managed than assuming it'll improve.
I’m very sorry to hear this update, it must feel like one thing after another.
I can only echo Nick’s reply - you’ve taken so many things in your stride already, I’ve no doubt that you’ll pick yourself back up and will be doing everything in your power to beat this prognosis.
Thanks RC - it certainly blows all the daft fretting about rhythm issues out of the water! I've barely checked my Fitbit today, if that can be considered an upside??
All I can do is what I'm already doing - keeping that muscle moving and in good condition and take all the helpful pills, and keep everything crossed. And if that doesn't change anything, just keep going. Worrying about the future is just ensuring you suffer twice! Now all I have to do is put that wisdom into practice.
Hi Zoe, saw this on Facebook still can't belive this how did your echo change so quickly? Is it possible something was missed?? Hope your tablets help xx
Thanks M. It's been a while since I had an echo - my last was the day after the surgery almost 6 months ago and according to my consultant this can sometimes be falsely positive because it's before the heart has really started to remodel. And there as been no imaging since - I guess as it's been changing a lot in that time! I start the extra tablets tomorrow and am researching how to make my heart beat more strongly! xx
As you know I have a right heart impairment. My ejection fraction of the left side is 52% the right side is 21%. These figures came from the mri, as an echo can be a bit different due to the operator and the detail. But an mri is the gold standard. I think you are doing everything right going to the gym and if you feel OK then it sounds good. The trouble with these heart issues is that it is a complexed piece of kit inside you and the operation you had did need to be done but up till the point that you passed out, the body had kind of compensated and it functioned. Now it has been repaired the body has got get use to the new changed heart. But it is frustrating but that is the sad thing with congenital issues we did not cause it or asked for it. I hope that the new tablets of entresto will help my right ventrical, but at 9 dollars a pill, lucky I live in the UK. So you are now on spironolactone, that will help remove the water retention that can build up around the heart and lungs. Are you on any other meds like an ace inhibitor or an arb. ? But it is a journey of one step forward and I feel about 10 steps back. But that's the nature of the beast. Take care keep smiling.
Hey Mark, yes, I've been on an ACE inhibitor since my heart attack - Ramiprill. Having read the Spironolactone leaflet I can see it's a dietetic but my consultant said it was a good one for heart remodelling as it prevents fibroids from forming?? I can only trust them, I am not an expert. My EF was 56% on the LV but 24% estimated on the RV. She also said this figure was much harder to get to in women because our ribs are too close together.
I'm giving myself a couple of days to be terrified but I do need to get my head together for work and a new job in Jan, so I'm going to take some time tomorrow to come up with a management strategy. I am a trained coach (like business coaching, life coaching kind of thing - not football!) and I'm hoping I can use some of those techniques to decide how I'm going to handle this, because freaking out is a) a waste of time/life and b) probably bad for my recovery!
It is such a slog and I'm still occasionally struck by feelings of 'why me', but, equally, why not me, why anyone?? There's no reason to it, it just is.
Hope you're doing OK, speak soon.
You could always coach norwich. Any way enough of that. The mri will be more accurate. Yes you are right. Worrying is a waste of your life. The only thing I get baffled about is that you are on ramapril and I was on lisinopril? They are from the same family of medication but what Is the difference. The ironic thing is that originally I was on losartan and then changed to lisinopril. Now back on valsartan another type of arb which is in the entresto. That's life. I think the why me feeling is the hardest part to get your head around. One thing which is a positive is that you and me are now being cared for and alot of people will be wandering around not knowing they could have a ticking time bomb inside. Plus in my case and in your case you can email or phone the cardiac nurses. I always tell mine that I have her on speed dial. We have a laugh. Any way you stay strong. And your life coaching skills will definitely help as long as your mind listens to you.
I also have Heart Failure after a Triple Bypass and Mitral Valve Repair. I had side effects from Spironolactone and have since been prescribed Eplerenone. I’m doing ok on these.
Hi David, good to hear from you, thanks for stopping by to share your experience. I'm sorry you have some heart failure. Can I ask how severe yours is? I'm assume it is affecting your whole heart i.e. not just the right side? Are you able to remain fairly active. The thought of reigning it in, activity wise is unwelcome to me as I've always been very active and I'm not yet 40.
What aspect of Spironolactone disagreed with you ( you don't have to say!) - I'm not totally sure what to look out for as I'm only one day in, but I think I'm having bloods in a couple of weeks to check on my liver & kidneys.
My heart problems restrict me somewhat but I also suffer from Severe Spinal Stenosis. I had a Laminectomy Spine operation before my heart surgery but unfortunately that has since failed.
Due to my heart problems the Consultant is reluctant to carry out anymore back surgery and I also can’t take pain relief like Ibuprofen or similar due to the Heart Failure.
I spent the weekend before last in hospital when they thought I might have to undergo emergency surgery on my spine but as previously mentioned they are very reluctant to do anything.
I’m now, unfortunately, having to rely on Oramorph which is liquid morphine for pain relief.
The Spironolactone dropped my blood pressure too much so that was the reason for changing to Eplerenone.
All the best, you have my full sympathy facing your problems at your age.
Blimey Dave, my heart goes out to you. I hope you can keep your pain managable, back and spine issues are brutal. It's good of you to share your experience, and it has given me a prompt to keep tabs on my blood pressure as the Spironolactone establishes itself. Take care x
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