Hi, to all those remember me, It's been a while since I posted.
I was due to have 3 coronary heart bypasses and a mitral valve repair. Unfortunately the surgeon at Papworth decided not to go head with open heart surgery due to the mitral valve being extensively calcified so wouldn't risk it. They decided to do the 3 blocked arteries with stents, which I had done last Tues. via the wrist, and to watch and wait re the mitral valve and cross that bridge another time, which is a bit scary for me, so not out of the woods yet. I'm doing ok but early days yet, ,I'm not liking this heat very much.
I was due to come down on my steroids [ I'm on 7mgs ] with a view of starting me on Hydrocortisone , but my Endo. decided to wait another few months considering what I have done.
Hope you are all keeping reasonably well, best wishes to you all
Regards bowler.
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Wow! I'm so sorry the nightmare isn't over for you yet.... do you know if Pred caused the calcification of the mitral valve? Reason I ask is that I have a Mitral Valve Prolapse and have been on high does of Pred for 8 months now... it will be at least another year before I am off or on a low doses.
I cant really blame Pred for my heart disease, but I will never know. Lot's of people in Papworth having the same symptoms, blocked arteries, dodgy mitral valves etc., and never taken Pred.
I have been on Pred for 18 years which has damaged my adrenal glands so will be on Pred or hydrocortisol for life,
regards bowler
I wonder if it has an autoimmune cause. It's worth looking into. I know someone, who has got this (accidentally found when he had an accident). I'm no stranger to cardiac symptoms. But when I had a test, it was clear. But then someone else commented that when she had tests (imaging) done, it was all clear and she went on to have a heart attack.
Who knows ? My Cardio seems to think that I have had my mitral valve leak for decades, lots of people have it, but it causes no problems till the symptoms appear,
Mine could be in the family, my Brother had the same symptoms, [at 60 ten years ago, I'm 73, ] he had 3 coronary bypasses, and a repair to the mitral valve, he's valve wasn't as bad as mine, My neighbours daughter was born with a leaky mitral valve, she is 21, but she does have special needs.
Bowler, so good to hear from you and that the planned op was shelved in favour of the stents - traumatic enough, I’m sure, but hopefully your complete recovery will be a little easier. I have a prolapsed mitral valve which hasn’t been checked since diagnosis some years ago....perhaps I should remedy that. I understand from my simple research that the mitral valve is more difficult to ‘fix’ than the aortic valve and obviously this is what is on the surgeon’s mind. Get well soon.
Thank you Celtic, nice to hear from you to. It's been a long road for me, I was diagnosed last Aug. and fast tracked within 2 weeks, however that means nothing, [ unless I had a heart attack and would have been stented by now] I waited many weeks in between each test, I had quite a few, the waiting was the worse, They couldn't make out why I wasn't getting symptoms from the mitral valve , which would have been easier if diagnosed earlier and less calcified, I started getting chest discomfort after up hill walks and exercise, and my GP diagnosed a heart murmur and referred me.
Thank you, bowler, I will. I do have problems walking up hills and more than one flight of steps. I do hope your reduced kidney function is remaining stable through all this, too. All the very best.
That’s good that it is remaining stable and long may that continue for you, bowler - you have more than enough to be going on with. Mine is similar, fluctuating between 33 and 40% over the last year or so.
I remember you bowler welcome back! You have certainly been through a great deal since we last spoke. You sound the epitome of bravery to me - needs must I guess. Can I ask why you will be changing from Prednisalone to Hydrocortisone? The heat does make things harder but it’s cheering too. I am stuck at 7 mgs for the moment and will be having a Synacthen Test in the near future. Sleeping my life away, I’ve never looked better but no one sees me much.
As I have had no symptoms of PMR/GCA for over 18 months the Endocronologist who I'm now under, and not Rheumatology, has decided I can gradually come off the Pred.
My adrenal glands are not working 100% due to long term Steroids, and I think hydrocortisone is the treatment for adrenal insufficiency, and I will be on it for life.
My synacthen test, last May, 2017, showed Addison's Disease. I was devastated, as I had NO fatigue and feeling very well. I was put on Hydrocortisone and taken off Pred. Stomach aches immediately, then feeling ghastly daily, until I felt I was losing my mind, and acting weirdly. I demanded to be changed back to Pred, and the Endo agreed. I will be on Pred for life, but that's not a problem. Currently at 7mg. Endo says I cannot go below 5mg.
I will obviously find out how I react to it once I do the changeover, but a bit worrying as I don't really want any more problems especially with my heart problems, Maybe as I've been on Pred for 18 years my body will react badly to the hydrocortisone, I can but try.
Feeling better as the days go on, it's a week today that I had the stents, and allowed to drive, however my husband isn't happy for me to drive just yet, and taking me shopping. Plus it's much cooler today.
Yes of course I remember you and I'm sure many others do too. Good to have the update on where you're at. All the very best for the next stages of your treatment. Keep us informed. Xxx
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I was diagnosed with both PMR&GCA in September 2014 I have finally managed to get down to 2mg of Prednisolone.
GCA, Afib, heart failure
