Moderate aortic stenosis

[snakeCanary2015]

I have moderate aortic stenosis and know it's worsening as I can feel it. Awaiting appointment with cardiologist and frankly I am terrified. I would love to message with anyone else on this journey. Thankful for reading.

[Ageingfast]

Dear Canary

I too was very scared of having the op. But as the day arrived, I became so unwell that the fear eased a fraction.

I went alone and had no visitors, which worked really well for me.

As I entered the hospital the fear melted away. Nothing like any other hospital stays. Got my own room. Staff were so kind. Not just the nurses, but the cleaners, kitchen staff, maintenance staff etc all made life so much better.

I had open heart surgery with a Edwards non metallic valve.

Obviously I don’t remember the op, just the days recovering. The days in special care were odd but soon over. I got out of bed as soon as I could, which impressed the nurses.

I paid for an ambulance to take me home, which was a big plus point. Essential to have someone at home to care for you.

I had no problem from the big scar. I walked every day. Blessing every day that I now survived. Then, after about 14 weeks, my strength returned and I marvelled at how well I was. Those brilliant surgeons. What a marvellous repair, giving me years of life ahead.

You will become severe aortic stenosis, then off to hospital.

My own tip is that when I started to stumble forwards then things were urgent.

I now have no problems at all from my new valve. Without it I would have died.

Brilliant health service.

Sooty

[carer999 in reply to Ageingfast]

Ageingfast why is it essential to have someone at home after the operation to be with as I have no one I can ask to stay with me.

Looks like I will have a serious problem when my time comes.

[PadThaiNoodles in reply to carer999]

The biggest problem is that you can't lift much of anything with your arms until you sternum knits back together. This includes your body (ie: pushing yourself out of bed).

Do a google for "move within the tube" for a bunch of good advice on how to deal with it.

[Queserasera25 in reply to carer999]

Hi. I had a Double By-Pass in 2020 during 'Lockdown' as I was Classed as URGENT, it was Postponed from March to September but then, the Hospital phoned me and said it couldn't wait any longer! However, they did change the Operating Hospital as well because of the very difficult situation at that time. I couldn't have any help whatsoever when I came Home, other than my Son getting Food and leaving it Outside as no-one could come into our Homes! On top of that, I never had any Cardiac Rehab either, only a few Phonecalls from the Cardiac Nurse! So, when your time comes, you will get through it. I am here and feeling well and you will too. You just have to be determined. and as positive as you can be!

[Ageingfast in reply to carer999]

Dear Carer

First things first. I refer to open heart surgery, not TAVi.

You get a big scar which needs gentle care for the first few weeks. No lifting, no hands above head. When you get nearer the due date for your op then you need to discuss where to discharge you. Care homes are one option.

You will get a booklet on what to do post op and maybe you could be given this leaflet now, to help you plan.

I am so sorry that you have no one to help you at your home.

My hospital checked up to ensure I would get appropriate after care, they would not discharge me if I did not have anyone at home.

A possible option is for you to stay with someone else.

From day one at home, I could dress myself, get to the toilet and go out for a walk. Which is a lot better than many illnesses. I live in a bungalow so no stairs. I dont know how stairs would impact. My big black cat was around which was very nice company.

Best wishes

Sooty

[Hephzibar in reply to Ageingfast]

Good to hear your experience! My husband is waiting an appt with cardiologist to discuss his proposed open heart surgery and is terrified. I will let him read your message.

Interesting point regarding getting a private ambulance home …….we have a small car which will probably be quite an uncomfortable ride home for him. Will look at that when the time comes!

[Ageingfast in reply to Hephzibar]

A 15 minute journey would be OK. Provided I could get in and out of the car. I live 2 hours drive from the hospital, and had no one to drive me. The private ambulance resolved all those issues and also got through traffic a lot quicker than most cars.

I wish I could convey how frightened I was, then how calm I was when the operation approached. It was all a plus plus plus experience. Nothing like most hospital visits!

And on top of that, I would have died within weeks without the op.

Before the op there are three minor tests. I believe these are mostly done as an outpatient. So please dont be alarmed by being called for three tests, probably on different days. I hear of patients getting wound up about these tests. But the surgeons need the info before operating.

If by any chance you can arrange for the tests as an inpatient, then it is well worthwhile. My op was during the worst of covid, so flitting around was a bad prospect.

Sooty

[carer999]

I am on the same journey. Waiting for it to progress to severe when action will be taken.

[Mazzagran in reply to carer999]

I would be interested in following your progress. 6 years ago It was found that I had Bicuspid Aortic Valve with moderate stenosis. I have no symptoms but have a yearly echo. There has been no change in that time and am awaiting the results of this year’s one. When and if it happens I wouldn’t like the metal valve either Why did you pick the valve you did?

[Ifaw in reply to Mazzagran]

So many people seem to have problems with the heart valves. My brother had that which was being followed at the hospital. I hope that it can be controlled well in your case as leaky valves create another problem I think. Could you give me your opinion of getting a echocardiogram. I am referred to get one but I fear the heat to the lungs , the talk about cavitation,or loosening plaque, the possibility of hemorrhages from lungs.It is not my intention to worry you but to acquire extra knowledge. Thank you and bless you.

[PadThaiNoodles in reply to Ifaw]

My valve leakage was first discovered when I was 40. I got an echocardiogram every year for 20 years before needing surgery. An echo is about as non-invasive a test as you'll find.

[Ifaw in reply to PadThaiNoodles]

Everyone says that it is on invasive but if you search on the internet as I did for what echo can cause It lists all that I have stated and then some.....check on Microsoft using Bing and please respond if I do not have a point. You may respond it is your choice.

[PadThaiNoodles in reply to Ifaw]

You can find anything on the internet. It's important to filter out the trusted sources from the more random ones.

[Ifaw in reply to PadThaiNoodles]

To start with, I neglected to point out how lucky you have been with the aortic stenosis situation,since it took 20 years for stepd to be overtaken. As for the echo, I still,l have all my concerns which are there because I a.way s look at the worse that could happen. Still,in norma. Echocardiographic procedures,it is stated by three doctors

The only tissue that need serious considerations are the ribs

I often hear that fo.lowing the echo the patients have sore ribs due to ultrasonic heating of the bone.

[PadThaiNoodles in reply to Ifaw]

My valvular issue was regurgitation (blood leaking back through a poorly closed valve) rather than stenosis (restriction of blood flow due to narrowing of valve). It's due to degenerative valve disease and affected both my aortic valve and my mitral valve.

I have had some soreness over the ribs from the operator pressing the transmitter too hard against my chest. But that was probably only 1 or 2 times out of the 20, and I'm very very skinny which doesn't help on that front.

[Ifaw in reply to PadThaiNoodles]

Thank you for the specification. Medical terms are not my favorite fields. Anyway, the very best to you and there are certainly a bunch of brave and generous people on health unlocked.

[Mazzagran in reply to Ifaw]

An echo is just like getting an ultrasound but lasts a bit longer. You lay on your left side mainly while they scan you. A bit more pressure is applied than an ultrasound but not too uncomfortable. Normally takes 15-20 minutes but has taken a bit longer in the past. This examination is really nothing to worry about.

[Ifaw in reply to Mazzagran]

Thank you for the info for echocardiogram.unfortunately I dwell on the insults that it could cause t oThe lungs,the ribs when it is offered by one specialist who is still getting practice especially in the power to use. My problem is that I always dwell one step ahead. I am happy for those who trust more than I do. Thankful for reading

[Bodypump51]

I have severe stenosis of the mid LAD. Tests also showed damage to the left ventricle so had suffered a silent heart attack at some point. Also have a small aneurysm. I had a stress MRI which showed I have unrestricted blood flow through the blockage. I am suffering with worsening angina at rest so, like yourself, I feel my conditioning is worsening and no idea of what next steps would be as have been told stenting is pointless as heart muscle is “dead” from beyond point of stenosis. Had a severe cardiac spasm last year which resulted in a short hospital stay.

I wish I could offer words of reassurance but can’t as being in limbo is, as you know, unsettling.

Good luck.

[Happydayz17]

Hi, I have had severe aortic stenosis 3 times in my life time plus many other heart related problems. I’ve had open heart surgery twice. Once at age 80 years and I fully recovered. A few months ago, I had my tricuspid valve replaced and walked out of the hospital the day after. I am now 85 years old. At the moment I walk half a mile a day and I am feeling great. Nowadays if you have a good doctor they can do wonders. Medical procedures and care have come a long way. I have been through what you are going through so I understand your worry. However, just make sure you research for the best possible doctor to look after you and you will be fine. Stay positive, you will be fine.

[Survivor72]

I have severe stenosis and awaiting CP-Tavi which is a minimally invasive procedure. Thankfully, the coronary angiogram revealed no blockage. My condition is also worsening ,particularly breathlessness on minimal exertion and AF flutter nocturnally, with episodes of arrhythmia, tachycardia. The primary medical team and CCU personnel have been excellent though!

[Ticktick]

Dear snakeCanary I have aortic stenosis too

Waiting for surgery

I know how you feel

Sending love and fervent prayers ♥️🙏

[Britoak]

My Aortic Stenosis was diagnosed by chance in October 2021 when I was being transported to hospital following a TIA.

I was told by the doctor I would need a valve transplant within 18 months to 2 years. I had 6 monthly echocardiograms and monitored the progress to critical and severe.

I had a major stroke in Aug 2022 and began the slow recovery.

In November 2024 the surgeon told me he would need to do a TAVR and triple bypass in the New Year.

I had the OHS in Harefield In January. I’ve only just started Cardiac Rehab but the delay in recovering from OHS has had a negative effect on my stroke recovery.

I’m feeling stronger by the day and am looking forward to being able to do daily muscle strengthening exercises and maybe even swimming🤞

[Deerhoundlover]

I had open heart surgery to replace my aortic valve 10 years ago. I realised then if I did not have the surgery I would be dead in a few months, so no point in being worried or frightened, better to be pragmatic. I'm sure my approach aided my mental outlook and recovery.

[CABGX32024]

Hi. I had a stroke in July last year where I was diagnosed as having critical stenosis of the left subclavian artery. I was 48 years old. 6 weeks later I had to be admitted and after further investigation was told I needed a bypass surgery. I ended up having a triple CABG. The wait was hard due to the complexity of my surgery but my surgeons were amazing and the care from the ward and critical care staff was simply first class. These guys are amazing! What I learned to appreciate and understand is these guys do this day in ,day out and plan for everything! Physically I am doing really well with my biggest challenges being from the stroke. I am so grateful for everything. Wishing you all the best! You’ve got this! 👍🏻

[Bluenose10]

I, too, had aortic valve stenosis caused by my having a bicuspid aortic valve. I got breathless and couldn’t walk far without stopping. When I finally gave in to my worsening symptoms and sought the help I should have asked for sooner, I was admitted to hospital and kept in until my OHS which replaced my aortic valve with one made from bovine tissue, I am now part cow. The tests before the op– principally echocardiogram, angiogram and many blood tests – were slightly uncomfortable, but you just have to let the medical staff do their work. The operation itself was scary in prospect but much less in reality. Sure, the first couple of days were very odd, I was festooned with tubes and wires, but the time passed and with the help of excellent staff I made good progress and was discharged a few days after surgery. You report that you will not have any help at home. I wonder if you might be able to go into care for a week as an alternative for there are unavoidable problems at first because of the split sternum legacy of OHS: you can’t lift much or carry or push or raise your arms above your head. Things for me improved quickly and I soon got to be more active, though I had to be careful for weeks about tasks like sweeping or hoovering . If you have a TAVI rather than OHS things are much easier. Now, seven months on, I am alive (not at all a given without the surgery) and much, much better than I was. Thus, I spent today planting broad beans at my allotment; not something I could even have contemplated before surgery. Good luck with your own journey.

[Health20232024]

I had aortic stenosis and was given a bovine valve thru the TAVR procedure almost years ago. All is functioning well and I have o symptoms

[Anonymouscatlover]

Dear Snake,Canary,I have had aortic stenosis diagnosed back in 1988 .Moderate stenosis does not warrant valve replacement unlesd you have severe symptoms,like shortness of breath with moderate activity.

I didnt need open heart op to replsce my valve till 2007 when I was 63 and chose a tissue valve as they are easier to live with.

Believe me,after s few months I began to enjoy a,great quality of lige and never held back on anything including returning yo thr gym.

After 16 years my valve begsn to narrow and I was offered a new valve which are now implanted via the groin in a simple painless procedures without need for an open heary op or need for a long recovery.

Depending on ones age 75 or over you could be offered this option as its simpler and less risky.

I have had this valve since 2022 and I feel fine.

So I can reassure that your condition is easily treatable.