I got my aortic valve stenosis on March 11 2022, followed by an arterial stenosis diagnosis after an angiogram in May. My heart function is less than 40%.
I have no immediate prospect of surgery, though my cardiologist at the time of diagnosis said the valve needed to be replaced urgently.
I feel now as though I’m living in limbo: I’m exhausted from the moment I wake, can’t walk up a flight of stairs without feeling breathless. I am on 6 heart-related tablets that seem to make me feel even more tired.
I’d like to be doing something useful or at least positive during this waiting time but what? I can’t exercise, mustn’t do anything that makes me breathless, must rest if I feel out of breath or dizzy. My options are very limited.
Has anyone out there found something positive to do while waiting for surgery?
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Pumper
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Hi Pumper. I am sorry you are having to wait for your surgery. I have had mine and I am now in recovery. I suggest you try and get your home as easy to recover in as possible. Get some good books ready and perhaps some soft meals ready in the freezer. Also I would let your doctor know how difficult you are finding things and get them to contact your specialist. The fitter you are before your op the sooner you will recover. The doctors know this and should put you forward ASAP. I wish you all the best, you have age on your side, the surgeons are fantastic and I found the nurses first rate.
Its good to hear that you are recovering well from your operation. Can I ask how long it was before you started to feel you was getting back to yourself Thanks Cath x
Unfortunately my operation was not straight forward and I spent 37 days in ICU. During that time all my muscles became very weak to a point that I could not lift my head off the pillow. I literally had to learn to walk again. I left hospital once I could walk up a flight of stairs. This was on June 4th. At first I was doing about 200 steps a day, slowly increasing and yesterday I managed over 6000.
I would say that after 3 months I felt I was recovering and I could see that the future is going to be good. I do not know how I would have managed without my wife caring for me. My son has also been a god send moving heavy objects about for us. I have been left with a frozen shoulder which I do exercises every other day to improve. I have also been to Heart rehab courses which I can thoroughly recommend. They have given me confidence in my ability and very useful knowledge to move forward. It was good to mix with people who have also had heart incidents.
On a positive note two weeks ago I went to Warners holiday camp not to far away for a week end break. So you can see in a relatively short length of time I am back enjoying myself. Although I did not get up on the dance floor.
Hi. Thank you for you reply. So sorry for the delay. I am very new on here and not that good at finding my replies. So sorry to hear your operation was not straight forward, but you do sound like you are making great progress, and enjoyed you little break away. I am very new on my journey. Only a week ago I was diagnosed with having a severe aorta valve leak and also my valve is not opening fully. I had very little symptoms and this diagnosis has been found on a routine check up. I think I am still in shock as up to a week ago I was living a normal life going to the gym 4 times aweek and running my busy sandwich shop. I can honestly say at the age of 55 I have never had such a shock. I am awaiting a MRI scan but my cardiologist has advised me I will need OH surgery.. I am trying to stay positive as I can. Like you I have a great family around me so staying positive for them. Take cake. Cath xx
Hi Cath, I remember when my specialist told me I needed a heart operation. I was hoping it would be a Tavi operation but unfortunately it turned out to be OP surgery. I am sure you must be quite frightened at the moment. Take it from me that the surgeons are fantastic and the aftercare is first rate. You have a great advantage that you are so fit and this will help your recovery be very short. Your priority now is to work out what sort of valve you want, either mechanical ( taking warfarin ) or an animal valve which does not last as long. Also as you are self employed having something or someone to step in for you at a moment’s notice. This caught me out as I was waiting to see the surgeon for a date when I collapsed and suddenly I was taken to Oxford for the operation leaving my poor wife to sort out all our finances and to try and find someone to take over my responsibilities as our village hall treasurer. Also you probably will not be able to lift anything heavy until your scar has fully healed ( about 12-16 weeks)
My other advice is to tell people because you will be surprised how common this is and it is reassuring to find others who have been through similar operations. It is pointless telling you not to worry because it is a big event in your life. The positive side to this when it is all over you will be back to normal and have a long and full life to look forward to.
Thank You Mike for your lovely message Mike.. I have my MRI on Friday and then an appointment on Tuesday to discus the way forward.. Keep resting and staying positive my friend.. Cath x
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