Severe aortic stenosis

[brenpop]

Severe aortic stenosis. How sick have some of you been prior to getting valve repacement op. Consultant that did angiogram got into his head I was symptom less. I feel as though I have been abandoned. Very scary when chest pain really ramps up.

[Blackcatsooty]

dear brenpop

I had gentle chest pains but massive exhaustion. Exhausted for 22 hours a day. I was fading away. My op was observed and the students (doctors and nurses ) said I had weeks to live.

Very very very grateful to the fabulous staff working through covid.

Sooty

[Wellington19]

Could hardly walk a hundred yards, surprisingly no chest pain, but breathing problems, you will be much better when valve replaced, but it takes a few months to recover

[brenpop in reply to Wellington19]

Hello. Thank you for replying. So glad that you have been sorted and wish you continuing good health. Good luck.

[Adhtz21]

I only found my condition after a collapse abroad. My signs were shortness of breath going upstairs. No pain touchwood. I have congenital bicuspid valve from childbirth leading to severe aortic stenosis and an aneurism of 5.5cm when found. When messed around festering on a waiting list and doing my own research (Welsh study into deaths whilst on waiting list - I’m not Welsh by the way), I became proactive in obtaining early surgery. If you sit back you will be allowed to. If you have pain or aneurism get onto the hospital via letter. Explain your concern in writing. I obviously had a genuine concern 6 months post collapse and not even a date. I wrote in and got a pre-op the next week and an operation the following week. Do not be afraid to shout up in writing. Quite often there is undisclosed chaos behind the scenes. In my case, initially I was allocated a locum Consultant Surgeon. She left the trust for a full time post leaving a huge list to be shared between colleagues. My new surgeon muttered something about April under his breath. At that time it meant another 3 months. That’s when I wrote to the CEO and quoted research stats, their published waiting times (which were well below actual) etc. Then Bingo..,Operation. As my old granny often said…”The pen is mightier than the sword.” God bless her. I’m happy to discuss further if needed. Andy

[brenpop in reply to Adhtz21]

Hello. Thank you for replying. So you have had a lifetime of valve problems and the added worry of an aneurism. Puts it in perspective. I trust that you recovered well and are leading a good life. I presume that I am on watchful waiting, so have decided to leave it a few weeks until I get to the anniversary of the last appoitment with 'my' consultant and if nothing happens, as you say start shouting. The not knowing, the wondering if anyone is even going to tell you what is going on, let alone getting treatment, is nearly as bad as the symptoms. Goodluck.

[Adhtz21 in reply to brenpop]

I was 55yrs old and completed 30 years of Police Service nearly two years earlier. I’m under 6/12 month monitoring as despite the aortic root replacement in 2020, over the past year, I have developed a small dilation again. Be careful to push for your own care. I would not have had last years CT scan had I not pushed for am echocardiogram and changed hospitals. Likewise my bioprosthetic aortic valve will require future intervention. On that note, dependant on your age and circumstances, please research the valve options i.e. mechanical or bioprosthetic. Even with that look at the Edwards Resilia bioprosthetic valve which is bovine rather than porcine. Please do not sit back as you will just wait and wait with todays NHS demands.

[brenpop in reply to Adhtz21]

So sorry that you have had such a setback. Most worrying. I hope that further treatment is forthcoming very soon. Will try consultant's secretary on Tuesday to see if there is even a consultation scheduled soon. Please take care and I wish you all the best.

[Drummer20]

Hi,I have severe valve disease,I’m on the waiting list.For a long time I had symptoms and was told that they weren’t cardiac.I’m now being told they probably are.I get very tired,funny heart rhythms and sometimes an angina type pain.It’s gradually got worse over the years I’ve been monitored.I feel breathless during the night and have to have more pillows or sleep on my left side.I had tests on my lungs because of the symptoms.My coronary arteries are clear.

[Dunandjam in reply to Drummer20]

I agree with you that writing a letter gets results! My son was diagnosed with congenital valve disease in his late 40s. He lives i Spain and has been trying to get a review but finding it very difficult.

Hope you get your appointment for surgery soon.

Regards,

Linda

[brenpop in reply to Drummer20]

Hello. I am sorry that you seem to be in the same situation as myself. Do the hospital keep you up-to-date with what is happening. When they don't I think that it is as scary as the symptoms. When I last saw 'my' consultant last July (his last words were I'll see you in 4 months) I was under the impression that the procedure wouldn't be too long as he arranged for an angiogram to see if my arteries were clear as they do artery by-pass while they have you open doing the valve replacement (my arteries were clear). This was followed by CT scan, calcium scoring a few days later. The consultant that did the angiogram was very aggressive and decided that I was symptom free, god know why. So I do not know whether he has put the boot in or my calcium score was low and they think I have plenty of time, no-one is communicating with me so I do not know what is going on. Other people have replied and are advising to be pro-active and write a letter to the hospital explaining your current symptoms etc. I do not know whether you have tried this. I am going to leave it a little longer before I contact them, the NHS is in such a mess and I presume I have been put on watchful waiting. I hope that you do not have to wait much longer and you get sorted soon. Good luck.

[Drummer20 in reply to brenpop]

I phoned the consultant’s secretary,sometimes the referral gets lost in the post.Hope you get sorted soon xx

[brenpop in reply to Drummer20]

Hi. That sounds like a plan will try on Tuesday. Thanks. Take care xx

[Devaprinters]

good morning

In my case it came suddenly one evening and I couldn’t breathe. GP was treating me chest infection and wasted two weeks in sending me to the hospital.

After tests I was transferred to Royal Brompton for the procedure.

Hope all goes well for you.

[brenpop in reply to Devaprinters]

Hello. Thank you for getting back to me. So glad you have been sorted and hope that recovery is going well. Good luck.

[10gingercats]

I do not have this condition but have had some experience of having had to fight my corner. Do not sit back and wait for the hospital to contact you 'eventually'. Be poroactive in bringing your date for your operation forward.Write a letter to the dept. or surgeon,go to the hospital if possible and speak to them about your concerns etc,etc. Do not sit back and wait.

[Devaprinters in reply to 10gingercats]

absolutely please don’t waste time you have to keep chasing them.

[brenpop in reply to 10gingercats]

Hello. Thank you for replying. I presume that I am on watchful waiting and hope that I will at least get a 12 month consultation with 'my' consultant so that i get the chance to make my case face to face. I will give it a few more weeks and if we get to the anniversary of my last appointment ie July and nothing happens as you say a letter will be well overdue.

GHood luck.

[Leonardo1]

I couldn’t put my pjs on with out gasping for breath - walking was reduced to staggering to the bathroom ! It accelerated rapidly from being out of puff walking up hill to being unable to do anything without being out of breath .

On the positive once I had my valve within 3 weeks I felt soooo much better !! 18 months on I’m tip top !!!

Try and Focus on post surgery because your life will be so much better .

Good luck on your valve journey .

[Rhinos67]

I had an undiagnosed congenital heart defect and it was only discovered when I got out of breath really quickly when running or exercising.No other symptoms but I was in the severe to critical range and had my surgery 6 months after being diagnosed

If you feel that your symptoms are worsening then contact your Cardiologist.

If you aren't already a member of our group then you may find it helps... UK Aortic and Heart Defects Pre and Post surgery

Joanne ☺️

[brenpop in reply to Rhinos67]

Thank you for replying. So glad that you have been sorted and hope that recovery went well. Will probably try consultant's secretary after the bank holiday and try and find out where we're at. Will certainly look up your group. All the best, thank you.