Hi folks once again. When I saw the cardiologist earlier this month 9th May when he told me I should have either open heart surgery or TOVI depending on what after testing I was suitable for, I could not decide, therefore he has arranged a telephone consultation with me on 7th June to ascertain my decision.
Here’s the thing I have gone on to read all info from the cardiology department and their own Youtube patient info videos, these were full of information enough to make me think I would rather do nothing as the before, during and post surgery would be very stressful for me, not just because of the possible dangers but if all goes well, the aftermath of me coming back home because I am alone.
I often fall asleep and wonder if this is because of my aortic valve probkem, has this been a symptom with anyone else?
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I was born with congenital heart valve disease and lived with it all my life until I was sixty, when I had aortic valve replacement and I can’t say it ever made me sleepy, infact I lived a pretty normal life, especially as a teenager and young mum and did everything I was told NOT to do!
Hi yorkiesForlifeI was born with congenital heart disease and have aortic stenosis and regurgitation so will be having surgery eventually. I always feel tired but I am a carer so alot involved in that and house work pretty much anything tires me out just what it's always been like for me so I'm used to if this is a new symptom I would mention to your cardiologist on your consultation on 7th June. Hope your able to make a descion. It's hard enough going through this kind of surgery for anyone but even more so well your alone, you will have us on this forum keep us update and take care! ☺️
Thanks, yes it is terrifying, as life turns out my husband died in 2021 he had been ill since 2000, his was a progressive condition, I was his sole carer also looked after my aunty who had dementia since she was 75 just before my uncle died she died in 2014 aged 94, and I had always promised my uncle I would look after her, he trusted me implicity as I have always been a very loyal person. I don’t complain because if these things happened again I wouldn’t do anything different. Just now sods law that I have no-one. I don’t want to seem ungrateful when I speak to the cardiologist, but I don’t want to go through this.
Yes indeed, feeling sleepy was a major factor before I had the op. In fact I was sleeping 22 hrs a day, but I was very much in need of a new valve.
I had two surgeons advising me and they tended towards OHS as that would be a more certain result.
Assuming you have OHS then you will need a few weeks after care. One option is to go and stay with a friend/ telative. Another is to stay in a care home.
Success rates for OHS is very high, somewhere about 99%. A big op but very safe.
The bottom line is that you get your life back. A fabulous thing at our age.
Sooty OHS won’t make a huge difference to my life because I have very painful arthritis in both hips, shoulders and spine, I have no friends or relatives I could stay with and in my neck of the woods there is not one care home etc. I would go to, and I have my two little dogs also. These things considered is why I don’t want valve replacement. I assume my condition will worsen and that perhaps I may even die suddenly. Not a good prospect. I am so stressed out right now, but I find diuretics a huge bonus to how I feel on a daily basis. Thank you for your kind help.
Social services should be able to help you with a carer at least during the initial stages of your recovery. Being alone shoudl never be a reason for refusing surgery. Givethem a ring just t o enquire.
I feel so sad for you and in a very similar situation, if you lived near by me I would invite you to stay with me while you recover and your little dogs, nothing worse than being alone and unwell I wish I could help x
You are spot on. My husband had a progressive condition since 2000, he died in 2021. I coukd write a book about hiw much I loathe the NHS and “carers” I have definately decided not to have surgery.
I managed on my own after OHS AVR. I was offered a week in a local nursing home at my own cost but I prepared everything in advance - freezer meals, shopping, nothing on high shelves etc. You are not allowed out of hosp until you can do certain things like stairs etc. Housework I didn't bother with much, the spiders will make new webs even if I were to dust them down! Cinnamon Trust will care for your dogs whilst you are in hosp, they have carers nationwide specifically for this reason.I can't say it is easy on your own but as long as you let some tasks go and be reasonable and careful about your recovery it is doable.
If you get the option for TAVI it would make things easier for you.
Thank you Cat, I have very painful arthritis which is the only reason I have a stairlift, I bought three years ago long before I had any symptons of valve problems. Surgery for that will do nothing for my mobility so I won’t put myself through it. I also think a lot depends sadly in the UK where you live and hiw you get to the appropriate hispital. Preparing for being back home would never be a problem for me, going to bed a having to lie on my back, however, is a huge problem also if my little dogs were sick or had loose bowels nee£ing cleaned up because they do have accidents woukd be a huge problem.
Don't forget there is always hospital transport to get you to & from any appointment. I had an ambulance car each way to and from hospital which was over 5 hours away. As I previously mentioned Cinnamon Trust would care for your dogs in your own home until you are able to. Best wishes, but please don't feel alone and helpless, the help is out there for the taking .
i will be abke to get patient transport, my biggest fear is what surfery after testing they decide I shoukd have, i.e. either OHS or TAVI I am then going to be very stressed at what I believe happens thereafter. I don’t want the cinnamon trust to look after my dogs the nearest is over 40 miles away, very few in Scotland.
Iam also 74 years old, had open heart surgery at st barts, they will loo after you verry well, but you will probably have some painful ribs for a while, and it takes a few months to recover
Hi, I had a valve replacement by transapical TAVI, where the entry point is by keyhole surgery between the ribs . I was in some pain for about 10 days after, but could still potter about and didn't have to sleep on my back as far as I remember. There is also the option for an even less invasive valve replacement via an artery in the groin. This requires minimal time in hospital 1-2 days. I think it is also called a TAVI. I think it would be best not to make up your mind until you have explored these alternative procedures, preferably with your cardiologist. Good luck whatever your decision.
Hi Yorkies for life I am 5 weeks in after having aortic valve replaced,by TAVI Prior to op I was exhausted all the time so that's really common as my GP said what do expect when you have nowhere ear enough oxygen going round you body and you shouldn't be doing much of anything Pray you are suitable for a TAVI I was in hospital for only two days op done under a local They maykeep you a extra day if you have noone to help Yes you will be tired when you get home but you could manage alone if someone walked dogs for you Walking is 5 mins the first week 10 the second bulding up each week till at 6 weeks 30 mins twice a day no lifting or carrying anything heavy for a few weeks .First three weeks I was really tired but then suddenly realised I had more energy and when I was tired it was a normal tired ness
Full recovery from TAVI is about 3 months as against 6 months plus for open heart I'm staring the 6 week heart rehabilitation course next week if you are offered it take it
As for the option of doing nothing I was told that my chances of being alive in 2 years was 50% and of being alive 5 years 20% so I realised that I really had no choice and I am not regretting it 5 weeks on. I am realising that although I knew I felt u nwell before the op I hadn't realised just how bad I was till I started to the improve at 3 weeks post op and I know I am going to be even better by three months By the way I am 75 so no spring chicken I also have arthritis, fibromyalgia rotator cuff neck problems and acid reflux
thank you cappachina, I completely get what you’re saying. As for the walking I wouldn’t be able to do any, and I have had a dog walker for the past four years only because of my arthritis which I have in my spine, shoulders and both hips,hands too, so even with valve op I still wouldn’t be walking. The surgery Won’t make any difference, therefore, to my day to day existence. I was surprised when the cardiologist told me my aortic valve was now classed as “severe” yet I have very few of the assiciated symptoms which baffles me. Of course that’s not to say I won’t have them in future. In the past two days I have decided to tell the cardiologist on the 7th June that I don’t want surgery if any kind because mainly I cannot deal with all the associated stress I would have pre and post. If I had relatives, or people who cared about me, I’m pretty sure my outlook would be different! When I get up in the morning, come downstairs, let dogs out, make my coffee then sit down to watch the news. Shortly thereafter I fall asleep sometimes for an hour in deep sleep, I can only assume this is either heart or diabetes related, it’s very odd! Sorry this is so long!
The falling asleep sounds like heart to me I feel that if you have the op you will feel better I have had arthritis all my life as I had rheumatic fever every year for 10 years as a child with damaged my mitral valve which healed leaving a scar so I have always had mitral incompetence too so I am well used to pain but the way I was before the op was awful I only realise now I beginning to feel better how ill I was and understand why my Doctor said of course you are tired you don't have enough oxygen going round and you shouldn't be doing much of anything. Talk everything over with a open mind with your Docs tell them how you feel about everything and ask for help to deal with practical things and also with the mental stress you are going through loads of heart patients get upset and anxious over heart problems and need support If you get heart rehabilitation course after you will get a doctor,nurse, physio ,dietitian a heart mental health nurse to work out how to tailor you a programme to get you to the best you can be Don't give up what would your dogs do without you they must be going go for we we love you and want you around for years yet
You also will meet other people at the course you never know you might make some new friends
Good group on Facebook
AORTIC AND HEART DEFECTS PRE AND POST SURGERY
They have people on who have had their ops as well as the new ones so lots of good advice and they have a Zoom meeting every three weeks which is brilliant fun as well as advice giving
Thank you, but I don’t want any of this. I base everything around dealing with the NHS locally throughout my husband’s 21 years of progressive illness until his death in 2021. I’v seen it all and don’t have a good word to say about my local NHS and ancilliary services. None of this changes my mind. Here where I live if you are recovering from surgery of any kind and live alone you are transferred to a small hospital until they decide you are fit to go hone, this if you are over 65 with no family, I don’t even have a next of kin now. This hospital I speak of has no operating theatre, just doctors and awful nursing staff. No one in my area has a good word to say for it, it is one of those places you go to but the vast majority don’t leave alive. Under no circumstances as long as I am able to make my own decisions will I ever be one of its inpatients. It should be closed down and I am not alone in my opinions. I know everyone on here who has responded to me means well, but nothing will change my mind. My life as I knew it is over anyway, so I will just take my chances of living with this until I die. I am going to update my Will with my solicitor next week and make further decisions.
not sure where in Scotland you are I am in the north East of England at Whitley Bay I will be very surprised if you are not tranferred to a hospital that specialises in heart ops as most of us going through heart ops are and Iknow from people on these forums there are some really good ones in Scotland
Good idea to update your will though anyway I think most of us do that It is of course your decision as to what you do so I can only wish you all the best
I am in the south west of Scotland my op would either be done at The Golden Jubilee in Glasgow which is a centre of excellence for Heart and Lung. I already know this as none of the hospitals down here, even the university hospitals can carry out this type of surgery. The Jubilee has an excellent reputation. My worry as I have already said is where I’m transferred to afterwards.
what I am thinking is when the cardiologist has his telephone consultation with me on June 7th I will ask him if it would be ok to give me perhaps another echocardiogram next year instead of doing anything this year. I feel it was a bit of a bombshell I didn’t expect so need more time. I am speaking to my GP next Tuesday I’ll see what she thinks.
Speaking to GP sounds good as she will know if leaving it too long is a good idea I can tell you that when I was diagnosed I thought I had no symptoms but it was only 3 months later I really began to be really unwell and once it started I got worse week by week so waiting is a option talking to her you can ask all these questions and get her opinion on everything including how much benefit she thinks you will get from a lot It is a awful shock when you are told about it and I knew from being young that one day asI got older I would need treatment and I was still shocked when it happened I have been blest that I got to 75 before it happened and that I could have the TAVI I have my 6 week echocardiogram next week so hopefully everything will be looking fine I certainly feel I gave a new life I think that although I had no symptomit had probably be creeping up on me for a year ad I had been putting tiredness down to getting older Let me know how it goes with your GP I hope she can give you all the info you need before you speak to the cardiologist
yes I’ll let you know, it could well be that I will get more symptoms and feel worse, it’s a hard one, but my GP is pretty down to earth so I’m sure she’ll guide me.
Hi there! Surgery is always a big step, and a heart op., no more said!I'm just giving you food for thought (very likely your own considerations shared.) You're anxious about the op itself: approach an Age Concern group or other if you really can't get short term assistance from family or friends. The point being, once you've had the surgery and recuperated, you'll be better able to self-cope. You are right, it's hard to cope alone. Having TAVI solves a lot of problems, but you'd still need care to be taken.
If you don't have either, really you'll need all the support you can get: - without - improved condition.
Now e.g. you should be getting: dieticians support, doctors, physiotherapists and especially emotional and psychological buoying up. A lot of people gradually decline in health but you can claw some of it back - with the right help. P S. you might consider asking the consultant in June for support suggestions, after all they understand.
I've just taken a look at other comments you've had and I think you're overlooking the difference either valve replacement or TAVI procedure will make to you overall!
A GP should be able to encourage and support arthritic improvement, with your cooperation of course. It's not static, it improves and declines though it is a slow and difficult process. This is the time to get best advice with summer here. Consider your animals, they get your support to keep well. Now you need support to regain a little mobility.
I do hope you ask the consultant about your possibilities for mobility for you or if not, good maintenance suggestions. All the best ✨
Thank you Zebra, all of what you said has been already considered by me, plus I had a physiotherapist come to my home eighteen months ago, she came twice and gave me a sheet of exerercises to do. I have not seen her since my GP made the referral, and none of the exercises benefited me. I also paid privately for another physio but this too made no difference despit being loyal to the exercises given over months. I wonder too if anyone who has replied to me lives in Scotland?
There is such a lot of strength in your attitude; and as arthritis is a difficult condition to manage, your mental strength looks wonderful. I'm not happy about physiotherapy in the UK, but maybe 🤔 you can't let them get away with this half hearted response, push hard for the right person/people from physio until you get therapists who are effective; fortunately everyone isn't the same.
Not being operated on would be worth it, only if you are generally well enough to pursue other means, but I daresay this isn't so. Listen to the surgeon very carefully. They don't like losing patients; if the risk is too great, don't take it. You current resolve is good. If he/she 's optimistic then I notice that the Red Cross might offer some 'support ' (see online) following surgery:First try this no: 0141 891 4000 (Scotland). There is an email:ilcrscotland@redcross.org.uk (explain your dilemma). When the surgeon is happy with the support arrangements, you can be! You've got the right idea, so keep going. It's not much, but I wish you well ( in both meanings of the phrase💚). Intuition might well be the guide of the moment!!
Hi Zebra thank you for your information and support, I will also take on board the link you provided and the Red Cross. I have always supported tge Red Cross because tgey go everywhere, a wonderful organisation. I have a 10am telephone consultation tomorrow morning with my GP to discuss my concerns before speaking next Tuesday to the cardiologist, I am just not sure how I want to explain my decisions to him. I have it in my head that I will be one of those patients who will have complications thus scared. Thank you for advice
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Aortic Stenosis
Aortic Valve Stenosis
aortic stenosis 
Aortic Stenosis
aortic stenosis 
