Breathlessness

[Hatten28]

I have on occasion remarked about my increasing breathlessness,

Ten days ago I went for an echocardiogram, and on Wednesday this week the doctor rang with the results, it seems I have a calcified aortic valve which is restricting the blood flow around my body.

The doctor is sending me to a clinic which deals in this problem.

Without being melodramatic it appears that there is no cure apart from surgery which I may or may not be suitable for.

I first noticed a breathing difficulty about ten years ago but did not restrict my life , I assumed that sotalol was responsible as was told beta blockers do this to you.

Has anyone else had or has this condition who could give me reassurance.

I feel as if I’ve been handed a death sentence and don’t know how to handle this feeling of doom.

Regards hatten28

[Buffafly]

Hi, I hope you get a suitable reply soon, but suggest you also post on the BHF forum as there will likely be many more people with your condition.

Please don’t let the dementors get you until you have been presented with all the facts, best wishes ❤️‍🩹

[Hatten28 in reply to Buffafly]

Thank you for your advice, I have found the NHS site to be very informative, although scared witless

I am frightened of a painful end.

[Megams in reply to Hatten28]

~I don't have any knowledge of your situation to reassure you Hatten28. I appreciate your level of deep concern very much.

Surgery is always the last resort but if it can be performed, then I would not hesitate if it meant more years added to my life.

Please feel comforted in the knowledge that I am thinking of you & sending abundant virtual hugs in meantime ~

[Hatten28 in reply to Megams]

Thank you Megams, so lovely to have kind words

[kkatz in reply to Buffafly]

Just love "dont let the dementors get you " .It is so apt and can just picture this.

[Hatten28 in reply to kkatz]

Thank youKkatz, I appreciate your input.

[mav7]

Hi Hatten

I have moderate aortic stenosis along with afib. There is mild calcification which has yet to affect my breathing but may progress as I age.

Good news is they have really progressed in successful aortic valve replacement surgery. A minimally invasive procedure is available. (link below)

You may also google for other info. Best to you in managing your health.

hopkinsmedicine.org/health/...

[Hatten28 in reply to mav7]

Thank you so much, I looked at the site and was given a ray of hope that I could be helped, everyone has been so kind , I am so grateful for your support .

I am being referred to a specialist clinic for this disorder, Hope i don’t wait too long, the anxiety is getting to me.

hatten28

[bassets]

Best wishes and good luck - things may not be as dire as they seem x

[Hatten28 in reply to bassets]

Thank you x

[Buffafly]

Hi, you may find this helpful. It implies to me that suitability for surgery is based largely on the severity of your symptoms.

bhf.org.uk/informationsuppo...

[Hatten28 in reply to Buffafly]

I think you are right in your assumption, I am 82 and have type 2 diabetes plus a few age related things, my doctor assured me that age is not a factor but general health is so fingers crossed for me.

Thank you x

[Buffafly in reply to Hatten28]

🫰🏻🍀

[Barlick43]

I, like you, assumed solitol was responsible for my breathless ness (only with movement) after 4 stent inserts after a heart attack 2007. I then had pacemaker 2012 then permanent pacemaker 2017 but still the breathlessness stopped me after abput 1 min walking in order to rest, but quick recovery after few seconds. I tended to aim for walk bus stop to bus stop where I could rest a few seconds… it was a good coping strategy.

My breathless had good and bad days. Eventually my GP sent me to Pulmonary specialist who diagnosed me with COPD and gave me an anora ellipta on which I take a deep suck each morning. I think it improved my breathless abput 30%. She also sent me to a 7 week breathing and exercise class at st Thomas,mLondon (twice a we3k 90min sessions). I have increased my ability to breathe and walk, not as much as I would want, but I can do more. I am in week 4 and I think my breathing “style” has improved so I have more coping techniques.

I have noted that it is not my breathing technique that limits my walk/breathe all the time Quite often if is the tiredness in my lower legs (lack of oxygen supply from weak damaged heart muscle)

I suggest you ask for coping techniques…. Perhaps pulmonary help rather than heart/drug/ surgery intervention is a way to go.

PS. I don’t like the exercise class, I’m physically lazy at 79….but do want to stay mobile enough to accept it

[Hatten28 in reply to Barlick43]

Thank you so much, my doctor advised me that there is no cure only an operation, like you I have a pacemaker since 2004.

There is a similarity between your symptoms and mine regarding walking a minute then stopping for a rest before going on.

I have difficulty walking now due to a broken hip and arthritis, i don’t want to run a marathon but be able to do a bit more housework and take a walk down our country lane.

Plus I fall asleep a lot which is unusual for me.

Your input was very helpful to me, lots of useful information.

Best wishes hatten28

[Barlick43 in reply to Hatten28]

I suggest you ask for a lung breath test and see if that is a way to go

[Hatten28 in reply to Barlick43]

Thank you I had a lung function test 2 years ago and it was fine and last week while I was breathless the nurse checked and the reading was between 97and 98, so lungs are fine it’s just the rest of me that’s falling apart.

[Barlick43 in reply to Hatten28]

ok…. Good luck with it

[-Tony-]

I hhave recently had a new metal mitral valve 18th April also a maze proceedure.

Before the operation i could do a lot of walking and only slightly breathless.

No i have a problem with diverticulitis and this makes me bloated and have difficulty breathing.

Out of breath dressing in mornings. Had echo and ecg all clear. Seen cardiologhist and he said heart does not increase bpm when exerting myself.

He has taken me off omiodarone and reduced bisoprolol from 5 to 2.5.

Getting very depressed over this as thought i would be fit after operation.

I had a ct scan wich shows an enlarged heart and fluid on lungs my ankles swell within minutes of getting up.

[Hatten28]

sorry your operation was not the success you wanted, hope for the future and me.

[Hatten28]

Thank you I don’t know what Ca supplements are.

The doctor advised me that there is no cure apart from an operation and only if I am well enough.

Still coming to terms with my diagnosis.

Hatten28

[Cat04]

Yes, this is exactly me! I have a bicuspid aortic valve which has been under surveillance for 15 years. This year since Easter I have been in afib/aflutter since getting covid together with increasing breathlessness & chest pain on exertion. I am very sleepy too.

I had my usual echo in August and last Friday my cardiologist rang to say that the stenosis has suddenly deteriorated to severe requiring the valve to be replaced. Also dilation of my aorta and a dilated left atrum.

I am now with a cardiothoracic surgeon for aortic valve replacement, repair of the aorta and an endocardial/epicardial ablation. This will all be open heart surgery.

If you have no other heart issues you could well get a new valve by cathetar - TAVR/TAVI

I am to have an appt with surgeon in approx 6 weeks so shall find out more then. It's the waiting that is the difficult part of this journey so I hope you get your appt soon & find out what your journey is to be.

Best wishes x

[Hatten28 in reply to Cat04]

Thank you for your explanation of your heart problems, I still have no further news, was advised I would be contacted by rapid cardiology, it’s a long wait so far.

I have AF diabetes type 2 , arthritis , high blood pressure, a pacemaker, and in between these I have the normal things to contend with, so I am not very sure that I can be helped.

It would be advantageous for me to improve my mobility as cannot walk far do many exercises without stopping for a rest.

Always tired and with the constant pain of arthritis beginning to wonder if it’s worth hoping for a better outcome for me aged 82.

Because of the pandemic we seem to be further back in priority, however I would admit that young people should come before me, am I being unfair in hoping for some respite in my last years

PS plus a broken hip that does not want to support me. Osteoporosis, I think that’s enough!

I keep smiling hope you can to, looking forward to some good responses.

Hatten28

[Cat04]

I'm sure you will be looked after well. The difficult part is the waiting for appointments. I like to know how long I am supposed to wait so I ring the cardiology appointments office and ask them. Next clinic appointments for me are December so not too long to wait now. If you get an appointment letter sent out next day it can be alarming but at least you are being attended to. I believe all cases are prioritised on urgency & need.

Best wishes

[Hatten28 in reply to Cat04]

Thank you cat04, I thought that rapid response meant a quick appointment but I’m wrong, they said they would ring me when necessary, but today I am really struggling trying to do some housework, think I sit down longer than actually work. Don’t expect miracles but if I can have some viable treatment I certainly would go ahead, better than hanging around getting worse and waiting for the inevitable.

Sorry having a gripe today suppose must think myself lucky to have lived this long, as many don’t.

Thanks again for your response much appreciated.

[NLGA]

would that be a normal calcium over the counter supplement?