Aorta stenosis

[Lavender987]

Hi all. I have aortic stenosis mild to medium,is there anyone who has the same diagnosed medical condition that I can discuss this with.

[Drummer20]

I was diagnosed with mild to moderate aortic stenosis and valve regurgitation in 2015.They found it when I went to AandE with chest pain probably caused by a very traumatic event I had experienced.

I was monitored for 7to8 years by having various tests and yearly echo cardio grams.The valve disease became severe in July 2022 and I was prepared and listed for a valve replacement.I had my operation on 24thAugust and I feel like I’m improving every day.A lot of the symptoms I had have resolved and I feel good.

[Lavender987 in reply to Drummer20]

Many thanks for your reply. And good to hear you are doing so well. My main concern at the moment is I feel so fatigued, I was thinking maybe it is the meds I’m taking ramipril1.25 Atorvastatin 40 mg, Aspirin 75mg I’m trying to get a cardiology check and if G.p will bring heart scan forward. Would be nice to keep in touch

[Drummer20 in reply to Lavender987]

I had symptoms for a long time that the GP and cardiologist thought were unrelated.I felt very tired,increasingly finding it harder to walk up hill then I started getting irregular heart beats.I also had to have a few pillows and couldn’t lie flat to sleep.They don’t believe people get these until the condition is severe as seen on an echocardiogram but I had these symptoms when the condition was moderate and they now seem to be resolved.I’m taking bisoprolol and losartan .

[alvida15 in reply to Drummer20]

Glad you're feeling better Did you have tavi or OHS?

[Drummer20 in reply to alvida15]

I had open heart surgery.It wasn’t so painful as I thought it would be more sore than anything.It’s safer to have open heart surgery in a lot of cases.

[Yumz199725]

Hi I have bicuspid aortic valve severe aortic regurgitation and moderate stenosis. So I'm happy to chat x

[Lavender987 in reply to Yumz199725]

Thank you for your reply would be nice to chat.I’m feeling quite overwhelmed at the moment and confused and isolated.with all this medical stuff and so ,so, tired. How do you manage? I feel I need to exercise,for my well being l do not know how safe that would be and also benefit from losing around I stone 7 llbs Medications I feel are contributing to weight gain . Are you affected at all with any of these difficulties. Will be speaking with G.P practice tomorrow.

[Yumz199725 in reply to Lavender987]

Ahh happy to chat about anything x I do go to the gym but I did have to talk to my consultant first and he advised not to lift weights of any kind as it can raise my blood pressure. Are you on any medication that causes fluid retention? Maybe talk to your GP about this as weight gain can be alot to deal with as a side effect from medication I was on some for another issue and I recently had to change it because of it causing weight gain as a side effect! Awful. Yeah feeling tired can affect you alot aswell dosent matter how much sleep I get I'm just tired all the time. Hope your gp can help x

[Lavender987 in reply to Yumz199725]

Many thanks x

[Maxbar]

hi lavenderI have the same mine is in one artery and is around 70% ,then had a balloon stent done as they could not fit a proper stent,this has reduced the stenosis to around 50% they tell me its not bad enough to warrant open heart surgery and I am on a lot of meds to keep me well ,back at consultant on the 30th so hope to find out more then, I have been having lots of tests, but the whole scenario is very stressful ,hope I have given you a bit of useful info.

I am quite well but not quite right if you can understand ,I do keep very active walking loads and gentle swimming twice a week .

Regards max

[Lavender987 in reply to Maxbar]

Thank you for your reply. Hope you do not mind me asking this ? What meds do you take and do you experience side effects. It is good to know that you are able to exercise. This should help with the stress. I’m experiencing extreme fatigue more recently and I’m worrying is it to do with maybe worsening of the valve. Need to try and speak to G.P to get his thoughts on this.

[Maxbar]

hi lavendermy meds dual platlet therapy clopidogrel and aspirin .BP ramiprel .

atorvastatine . balsaslazide for unrelated colitis .

lansoprozle to protect the stomach from aspirin . no real side effects so lucky there but have changed BP meds a few times, could not tolerate amldopine .

do check with gp about exercise .

But it certainly helps with anxiety .I try to eat very sensible mainly base on Mediterraneans diet and also do fasting 12hrs at night.at least 5 days a week .find it helps with weight loss .

I think the worse thing is how it plays with your mind and your sleep pattern .

do try to keep calm and upbeat and laugh about the crap situation you find yourself in .keep talking to people helps a lot,if you need any help just ask people on here are brilliant and do tend to be very positive . keep smiling no matter what and I know that is not possible all the time💔👍👍

[Sooz34 in reply to Maxbar]

Hello I was interested thst you mentioned dual platelet therapy as my husband has just undergone OHS for aortic stenosis and a new aortic valve and pre op was told his platelets were low which came out if the blue. Is low platelet count associated with aortic stenosis? 😊

[Maxbar in reply to Sooz34]

Sooz, sorry I can't help with hat question , but am sure someone on here will.wishing you and your husband all the best 👍

[Rhinos67]

HelloI was diagnosed with severe aortic stenosis in October 21. It absolutely knocked me for 6 as I had a huge hospital phobia. With the support of my amazing medical team I managed to go through with surgery and had the valve replaced in April 22.

Don't Google that's for sure!

If you are on Facebook I would recommend joining UK Aortic and Heart Defects Pre and Post surgery group. Everyone in the group is either on the same journey or has had surgery. I got so much reassurance from them and try and help others now myself too.

Joanne

😊

[Blackcatsooty]

good morning Lavender987

I was diagnosed with mild stenosis and all was ok for a few years. Then moderate stenosis. Six months later I became tired beyond all reason. I noted that I would stumble forward. I kept doing gentle exercises mainly just walking. Outpatients did their annual scan and then the cardiologist moved in to action. She phoned me the next day to say that it was now severe stenosis and I needed to attend the heart hospital.

Medication was the same as I had had for a few years. I was now sleeping or at least snoozing, for 22 hours each day.

I went to a London hospital where they did the pre op tests as an inpatient. The cardiac department was nothing like my previous experience of hospitals. It was wonderful. Such good medics. I was at last at ease.

Waiting to go was by far the worst part of the whole experience.

I had open heart surgery to replace my aortic valve. Then a long (3 months) period of recovery and then I had my life back. The tiredness was gone. Yes I have to take eight tablets but that’s no problem.

You are bound to worry excessively, but once you get in to the cardiac hospital my fear just melted away.

Best wishes

Sooty

[Butcherlife in reply to Blackcatsooty]

Hi Sooty, I too have had the replacement aortic valve, mechanical, I'm interested to know what tablets you are on if you don't mind sharing that info.Regards

Butcherlife

[Blackcatsooty in reply to Butcherlife]

dear butcherlife

My medication is atorvastatin,clopidogrel,colecalciferol,indapamide, lercanidipine, Ramipril, citirizine, revlar.

But I have other medical problems so not all down to OHS.

I love clopidogrel because it has wiped out migraines.

Sooty

[JessicaRed]

Hi LavenderI was diagnosed in Aug with severe aortic stenosis of a bicuspid valve and am having my valve replaced a week today

For 67 yrs most of my increasing symptoms had been put down to a mixture of obesity, type 2 diabetes and increasing age but an event in Aug took me to AE where this stenosis was discovered and I was told, "" well that explains why you've felt so rubbish for years, sorry "."

I've taken a lot of tablets for yrs, 2 for diabetes, 3 for blood pressure, statin, painkillers for arthritic bits lol, just a few extra now for heart

After the op I'm hoping some of the tabs can go but I'll follow whatever they tell me to stay alive and hopefully I'll be more healthy and have more energy

Good luck keep in touch

[alvida15 in reply to JessicaRed]

Oh dear, your AS should have been picked up years ago, so lucky it was found in time 😯

[Lavender987 in reply to JessicaRed]

Thank you. And yes it will be good to keep in touch. Consultants Secretary today said a letter is in the post for me to have a a heart scan which as been brought forward. I’m feeling really Anxious due to the extreme fatigue and not feeling so good in myself. What scan will reveal. X

[goldenbay]

Hi Lavender987,

I had a double bypass in 2001 when i was 45 and a stent in 2005. At that time it was noted that I had a heart murmur which was investigated and I was told it was no problem and wouldn’t cause problems until I was a lot older. I later had a nuclear study and was then advised by the cardiologist that not all murmurs were caused by aortic stenosis and that I actually had a sub aortic membrane and am monitored on a yearly basis. I also have issues with a few septal branches and angina. I also find it more difficult to lose weight and earlier this year was extremely fatigued and have now been diagnosed with hypothyroidism and started on Levothyroxine but because of all my heart medications I don’t think I can be prescribed a therapeutic dose. If your fatigue has become worse get checked out by your GP. It may not be your aortic stenosis.

[Lavender987 in reply to goldenbay]

Thank you for your reply. I have made some calls today. Re- appointments. GP on 28th November and waiting for cardiologist secretary to speak with consultant, and get back to me .Blood tests were good so it’is now finding what is causing the extreme fatigue .x

[Sooz34 in reply to goldenbay]

My husband was also diagnosed with aortic stenosis and thry found a heart murmur he never knew he had despite yearly medicals while in the RAF - came as a real shock.

[Taviterry]

I was diagnosed with severe aortic stenosis in January and apart from a bad few weeks in the Spring continued walks of around 4 to 5 hours without problem. A week before my TAVI in July, I felt so good after four hours I continued for another 90 minutes, then drove a few miles and walked for another 90 minutes. I felt OK afterwards. In March I did discontinue my half-day environmental tasks which often included heavy lifting and lots of bending up and down.

Mind you, before my op I stayed at a nearby boarding-house and the next morning walked the ten minutes to the hospital with my overnight bag, which I found physically stressful. (It didn't help that the directions assumed patients would arrive by car and enter Cardiology reception by a dedicated side door. Arriving on foot, I used the main entrance and got confused by the signs to Cardiology.)

[Football-Mum]

Hi Lavender987

I had moderate to severe AVS diagnosed when I was 25 yo and this year at 41 I had a mechanical valve replacement. I totally appreciate what a scary time this is but I also have lots of experience of living with the condition. The best advice I can give you when it comes to exercise is do not compare yourself to others only to yourself. I did Couch to 5K app and never managed to run 5K in less than 30 minutes but I was running 5K. I remember my first park run and when I crossed the finish line I felt as happy as if I'd completed a marathon! Hope this goes someway to reassure you and please feel free to reach out if you have any specific questions.

[Lavender987 in reply to Football-Mum]

Thank you. X

[Mad372]

Hi, I was found to have aortic stenosis 7 years ago whilst in a&e for appendicitis. Played havoc with my mental health for several years, constantly listening to my heartbeat etc had a few visits to hospital thinking I was having a heart attack and lots of panic attacks, a horrible time. Eventually proscribed antidepressants which have helped massively. Latest scan showed its is now severe. But still fairly symptom free, just fatigue been the only noticeable one. Have just been accepted onto a medical study to see if valve replacement is better carried out before or after symptoms develop. Find it a bit annoying that you have to wait until it gets to the severe/symptomatic point to get a replacement. Feel like I’ve had to live the last 7yrs at not 100% of my potential.

Hopefully once I’ve had the valve replaced and recovered I’ll feel 10yrs younger!!🤞

Good luck and don’t get too focused on your problem and live life to the fullest.

[alvida15]

I was diagnosed with mild AS feb this year. Am I alone in feeling you are are sent away with no list of do's or don't's? The BHF have given me more info than the GP. So many things I didn't realise affected it, alcohol, the cold, the heat. I returned home recently and the heating had to be turned back on, and it was really cold for hours - I didn't just feel tired, I felt like my batteries were on 5%. I've had times struggling walking home where I could've laid down on the street. I don't know how old you are or if this is applicable to you, but I'm in menopause and on hrt, it was actually checking my blood pressre so I could have hrt that found the AS and I then had to be on ramipril a few weeks before I could have the hrt, sorry I am going somewhere with this lol - prior to hrt I was really tired, could go to sleep at my desk tired, but the hrt has largely got rid of that. I do still feel like lying down after going up steps and hills are a nightmare, but a lot of the fatigue was menopause. The worst thing is even though I've been told I can exercise I am nonetheless scared of overdoing it and keeling over, I guess a fitness watch to monitor my heart rate would help there. There is certainly a process of coming to terms with potential OHS and it could be 5 years or could be 20. Being told I had irreversible heart damage was my worst case scenario but taking things on the chin is my strong point lol It's hard not knowing what caused it, was it 20+ years passive smoking, an untreated chest infection, too much sugar...no idea. Just wish I could go back in time and wish so much that blood pressure checks were done annually by everyone, at the chemist, wherever. Although my GP surgery knew my bp was exactly as high as it was earlier this year, 5 years ago, didn't follow it up and only told me it was a bit high but not like it mattered.

[Leonardo1]

I was diagnosed with aortic stenosis in august 21 and had ohs in December 21. I hadn’t been to a doctor in 20 years was never ill and was completely shocked !! But By march 22 I was back to work fully recovered and really feeling so great !!

Focus on recovery look to the healthy future that awaits you - the op is scary and it is a bit of a car crash but by the end of a few days you are beginning to get going .

You are in great hands these are incredible individuals who do this as their day job and they are amazing! Respect their expertise and their advice .

Do as you’re told in hospital get up walk as soon as you can it aids recovery and look to your healthy new future .

Today I climbed 6 flights of stairs carrying my big work bag and again I marvelled at how easy it was for me and how just 18 months ago I couldn’t reach the end of my garden !!

Ask questions they have all the answers and plan and look towards your healthy new future feeling so much better . Good luck

[Donna899]

Hi, I was born with bicuspid aortic valve and it took for me to get very ill when I was 7 for it to be diagnosed. I was told it would worsen with age and would need surgery when I get older.

I reached the age of 39, without medication or any assistance until I was rather poorly and had trouble functioning everyday. The fatigue and issues with being out of breath and not being able to climb stairs was a real problem.

I had a mechanical heart valve replacement at 39 but I had complications. I was a very rare case. Where I reacted to the stitches used to attach the valve and went on to have complete heart block and ended up with a pacemaker too. My body also struggled to heal from the from the chest wound and had to have the sternum wires removed and debridement had to be done.

I am a very rare case and this was not a 'normal' reaction to the surgery. I am 50 now and doing perfectly fine!!!

I just had bad luck but had a great team of cardiologists and surgeons who supported me well!

[Bikafella]

I was diagnosed with AS a year ago and fell through the net with regard to seeing a specialist which only occurred in Nov '23. I was told vlave replacement will be done by TAVI. most of the members above have only referred to OHS but TAVI has been going on for years as far as I can tell. Was that suggested in your case or if not why not.