Aortic valve replaced

[Chariothunter59]

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I had my aortic valve replaced on October 17th at Morriston Hospital last year and was discharged on the 28th. On the 30th, while sitting watching TV with my wife, I remember her crying on the phone trying to get me an ambulance because I was having a seizure, then another and another. I kept having them but was told they couldn't get to me for 5-6 hours. My brother-in-law took me to Withybush Hospital. I was still having seizures in his car and then in A&E. When I was seen, my heart rate was 20 and dropping, which is why I was having the seizures. They also discovered two leters of blood on my right lung, so I spent another two weeks in the hospital having it drained. I attended A&E yesterday, Thursday, November 28th, 2024, because I wasn't feeling well and was told my heart is only operating at 52% of what it should be for a 59-year-old man. I get really short of breath when doing the slightest thing. Is this a disability?Read more

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[PadThaiNoodles]

Did they tell you what your EF (ejection fraction) was? A normal heart has an EF somewhere between 50% and 70%. But it's hard to know what they mean by "52% of what it should be." Are they saying 52% of the lower number, or 52% of the centre of the normal range?

[Chariothunter59 in reply to PadThaiNoodles]

All she said was my my ef ejection was 52% of what it should be for a 59-year-old man, I get out of breath just bringing the bin bag through the house I walk miles every day but the slightest incline i get out of breath and have to stop. I'm only 170lbs very little fat and was a fitness fanatic until I started struggling.

[PadThaiNoodles in reply to Chariothunter59]

Presumably they did an echo to measure your EF? That will usually also tell them what was causing it to be low. Did she mention anything else?

[Chariothunter59 in reply to PadThaiNoodles]

Yes they did echo 3 time's, X-ray various blood tests and blood pressure which was 111/60, I'm wondering if they took into account that my aortic valve replacement has a 20mm fixed aperture so my heart doesn't have to pump my blood out as hard as it used to?

[PadThaiNoodles in reply to Chariothunter59]

EF is just a measure of the pre-contraction volume vs. the post-contraction volume. So it doesn't give the whole picture (such as how hard the heart had to work during the contraction, or whether or not it was adequately filled before the contraction).

I agree with Shar28 -- they haven't really given you enough info and an appointment to go over your notes would be prudent.

[Shar28]

Hello, it’s scary when things like this happen and when the medics don’t explain things clearly.

I would suggest that you make an appointment with your GP or consultant to go through your medical notes with them explaining everything to you. Take a list of questions and someone with you and get them to write down all the answers.

In the meantime, keep a detailed daily diary, record blood pressure, heart rate and if it’s steady or erratic, any other symptoms, the meds you’ve taken (names, dose, time of day) any questions you’ve thought of. Then take it to all appointments with you so you’ve got all your info to hand.

I’m afraid I can’t help as to whether your condition is a disability. If you have a heart nurse they may be able to guide you or your GP ay be able to help.

Best wishes to you and your loved ones.

[Chariothunter59 in reply to Shar28]

Thank you for your reply. On Wednesday night, while in bed, I had pain in my chest, my back, the inside of my neck, and the right side of my jaw. So, I thought it was either a heart attack or angina, but they said the tests came back negative for both. My blood pressure was only 111/60. I'm wondering if my new aortic valve with a 20 mm fixed aperture could cause this because it does not need to pump blood out as hard as it would have.

[Cat04 in reply to Chariothunter59]

A 20mm aortic valve is very small for someone of your weight. My AVR is 23mm and I weigh 120lbs and 23mm now seems to be too small for me causing shortness of breath, fatigue, chest pain, turbulent flow through the prothesis and moderate obstruction.

Try asking about patient prosthetic mismatch.

[PadThaiNoodles in reply to Cat04]

I think the size normally refers to the size hole it goes into. So a 26mm intra-annular valve with a 3mm thick cuff (a guess) would have a 20mm aperture.

There are also supra-annular valves where the cuff is sewn onto the top of the existing valve, so the aperture is closer to the valve size. I believe my 23mm supra-annular has an aperture near 23mm. (As a data point, I’m 155lbs.)

[Cat04 in reply to PadThaiNoodles]

Thank you for that information, I had assumed the 23mm was the size of the aperture rather than the hole it goes into. My latest echo has confirmed it is too small for me causing the problems I mentioned above, it apparently is not leaking but the aperture is too small to let the required flow of blood to pass through it smoothly.

[Chariothunter59 in reply to Cat04]

My replacement aortic valve is 20mm and I'm struggling with getting out if breath really easy, Wednesday night i had a deep heavy pain in my chest back throat and Jaw, they said I haven't had a heart attack and don't think it's Angina, but I'll ask the doctor for the spray and see if it helps.

[Cat04 in reply to Chariothunter59]

I think I would ask for a full copy of the echo report(s) from the hospital and see what the findings are listed as and it would also clarify your EF (My report mentions patient prosthetic mismatch). My cardiologist has discussed the report with my surgeon, added in another medication and I'm now awaiting a cardiology appt to discuss the results and learn the way forward.

[PadThaiNoodles in reply to Cat04]

Dang, I feel for both of you. I wish you the best in moving forward and getting things sorted.

[Cat04 in reply to PadThaiNoodles]

Thank you 😊

[fishonabike]

You ask if what you have is a disability. Clearly you are unable to live your life as you did before this started so you feel dis-abled, but if you mean "does this count as disability for benefits or insurance purposes?" the answer is less clear

I can't answer for insurance purposes, but for a successful benefits claim you need to be able to show that you are unable to carry out normal activities regularly, reliably, repeatedly and/or safely. The paperwork is lengthy and it is best to get support from an agency with experience in these claims e.g. Benefits and Work (for a small charge), Citizen's Advice and others.

I have used the advice from a local disabled rights agency and Benefits and Work, these helped me through my applications for Incapacity Benefit (an early name for the benefit for people unable to work due to health issues) and Personal Independence Payments (PIP). I would not have got the benefits if I had not followed their guidance).