Hello

[Wolfie1234]

Hello, I am new to this site and I’m not sure if I am in the right place.

In April 2021 I was diagnosed with a severe aortic stenosis. I was also subsequently diagnosed with an aortic aneurysm. After a lot of stress I was operated on in November 2021. I did not do well and ended up with a pacemaker. Whilst in hospital I had 2 serious infections and a reaction to the antibiotics they gave me which resulted in my skin peeling off.

I came out of hospital determined to move forward. I received no cardiac rehab and precious little support from either the hospital I had the procedures in or my home health board.

I am now a year on, scared of my body, disappointed in myself and finding it really hard to cope. I’m told to move on and put it behind me, which I have been trying to do but now I am hitting a wall.

Has this happened to anyone else or am I just wallowing?

[Blackcatsooty]

dear Wolfie

welcome on board

What a catalogue of difficulties. Can I tell you about the bits that I know a little from experience.

Severe aortic stenosis is almost certainly terminal. So a valve replacement is needed. An amazing operation by amazing staff and surgeons. Success rate of new valves is very high, 99% or better.

I had this operation in April/May 2000. Covid was raging. But I was home in a week and I worked on my home rehab. I did my own rehab as no formal sessions available.

After 12 weeks felt marvellous and I was back in my garden. My scar was no problem.

Above all, I am alive whereas without the new valve I would quite certainly be dead. My operation was observed and the observers confirmed I had just weeks to live.

I think the aortic valve was the essential in your case.

I would hope your infection is now banished.

I am sure others on this site will talk to you about pacemakers.

Yes there are often some mental issues after such a big operation, but these will pass.

So perhaps you can congratulate yourself on a new valve, for having survived your stenosis and for joining this group.

Sooty

[Cliff_G]

Hi Wolfie,

Definitely not wallowing! Those who say put it behind you have no concept. Try to understand that they only say that out of ignorance. Aortic surgery is major surgery and there can be difficulties, as you have found out. My thoughts are with you.

The lack of focused aftercare is unfortunately too frequent. You should definitely have been given cardiac rehab, and I would go to my GP and ask specifically for it. There are criteria for who qualifies but a GP I know told me that even if you don't strictly qualify, they can work with these to get you seen. Cardiac rehab definitely helps after aortic surgery as well as "ordinary" cardiac issues, and having a pacemaker should qualify you, anyway.

Another question to ask is which hospital is responsible for your follow-up. You should actually have been told this, and had it explained what the plan for your aftercare was.

I'm sure part of the problem is the extreme pressure the NHS is under at present, but that's not a reason not to ask. Both you and your GP need to know who is responsible, or that you have been formally discharged from hospital care, in which case your GP is responsible. Unfortunately today's reality is that if you don't ask, you don't get, so do ask!

Whilst you've not had a dissection, having aneurysm surgery shares a lot of features with aortic dissection, so you might find some useful information in our patient booklet "Aortic Dissection - the Patient Guide", which you can download from aorticdissectionawareness.o... This covers everything including the psychological challenges we all face after being "let down" by our bodies. The resources listed at the back also point you at the BHF cardiac rehab classes on line. Whilst not giving the personal support you need, they can help.

I hope you can get some help and proper support for the future.

[Cliff_G in reply to Cliff_G]

p.s. you mention "hitting a wall". Are you experiencing a general weakness that you cannot seem to shift even with trying to recover fitness?

[Wolfie1234 in reply to Cliff_G]

Thank you for your reply and very helpful suggestions.

Unfortunately the hospital I had the operation in and the local hospital both said the other was responsible for aftercare. I pushed and, with very poor grace, the local hospital, accepted me but only for the valve replacement, no-one took responsibility for aftercare for the aneurysm.

I have asked my GP why I didn’t get rehab, they have asked me why I didn’t get rehab. I have no idea why it hasn’t happened but at the moment the local hospital are saying that the cardiac physio position is vacant - it’s an excuse. I am going to seek support from a personal trainer when I can find one who has an understanding of cardiac issues.

The wall is more in my head than my body - I am not particularly fatigued and am masses better than I was in the earlier part of the year.

[Shar28]

Hello. It’s all such hard work isn’t it! In my husband’s experience, the hospital that does the surgery does a post-surgery review then it’s back to the cardiologist who referred you for the surgery for ongoing care. If it’s not happening have you tried the PALS service at the cardiologist’s hospital? They’re often very helpful. The BHF nurses may be able to offer some suggestions too.

My husband didn’t “qualify for rehab because he only had an aortic valve replacement via open heart surgery” according to our local hospital. In our area they only offer rehab to AVR patients who need a vein bypass too. 🙄.

[Wolfie1234]

It is very hard work! I know the NHS is under pressure but it really has felt like they dont care. I just feel like a meat sack, not worth compassion or respect.

I have been signed off by both hospitals. I wont see the Cardiologist for another 5 years now which is fine but I think now the absolute lack of aftercare, particularly when I see how others are supported is getting to me a bit.

I cant believe your husband was told that - it does not sound at all right.