In the immortal words of Megan Markle... - British Heart Fou...

British Heart Foundation

36,035 members23,203 posts

In the immortal words of Megan Markle....

Khartoum7 profile image

Six weeks today since my op and 'nobody has asked me how I am!' The booklet I was given said that my local Cardiac Rehabilitation team would contact me...but nothing!I don't know if I should be doing any exercises(apart from walking) or have joined a group session for anything(exercise,chat),don't know if the bones are healing properly etc.One very unfortunate ,and very unwelcome, side effect of my op is that it has destroyed the hearing in my left ear(perfect before I went in!) Has anyone else come across this?Over to you my friends....;)

63 Replies

Thanks for the reply..Yes..it does seem that at your most vulnerable the support is not forthcoming!

Yes the NHS is under pressure because of the 'backlog' due in part to the pandemic, but I'm going to deviate a bit and I hope you don't mind but I constantly see posts on job sites for trained staff to do PIP Assessments - the most recent one was for Paramedics. I can see how we may lose NHS trained staff to these positions - no night shift/less stress/weekends off/better wages etc. and the irony of it all is that it's our own Government through 3rd parties that look to fill these positions and thus leaving shortages in all areas or perhaps staff going on to part-time positions plus doing the assessments - and yes I agree aftercare can be non-existent. I was referred to a dietician as I was finding it difficult to lose weight on my own and got a reply stating that they 'cannot offer me this service at the moment.' I have now been diagnosed as being type 2 diabetic but just slightly and with diet can revert this - My first appointment with the Diabetic Nurse was routine but when I asked for advice on diet her reply was that she couldn't advise me as it was down to the dieticians to advise me..........

The NHS is reeling under the pressure it is on from the Pandemic backlog, for sure. However, why this would impact on Cardiac Rehabilitation is a bit unclear to me. My experience is that the actual diagnosis and treatment side of this is excellent but aftercare was always poor and now it seems non existent. If you just sit around waiting to be contacted it will likely never happen, you need to contact the hospital and find out what is happening, the Rehabilitation is something that the NHS are supposed to be providing and I can't see any excuse for them not doing so now. I presume for something as dramatic as hearing loss you have already spoken to them or your GP?

Yes I know they are under pressure...I don't like to make a fuss generally but thought six weeks was a bit long! Yes I contacted my doctor after two weeks ,once realising it wasn't just a blocked ear,and she said she would refer me for a hearing assessment...but nothing since(4 weeks) I have decided to go it alone and have made an appointment next week with a shop in town who offer free hearing assessments.They say that they send the results to your doctor so hopefully that will hurry things along a bit! Thanks for the reply.

Hi you should contact your GP and find out which hospital does the rehabilitation cardio. I was rang immediately after I came home, but then that is down to the pro activity of the hospital locally. I am just over month at home after a route replacement on my aorta and I am walking every day and using the stairs. Exercising can resume after 6 weeks hopefully. I am a keen cyclist.

Wish you well.

Khartoum7 profile image
Khartoum7 in reply to JoN1970

Thanks for the reply..well obviously your area is better than mine! I wish you well too...:)

Hi khartoum. As many people find, the "fixing up" part of heart issues is usually great. The problems tend to arise when you are released into the big wide world with a bag of meds and left to get on with it.Think the lack of follow up was there before the last couple of years. I had my ha in 2019 and I had to beg my Dr to see me post discharge from hospital. He couldn't seem to understand how frightened and alone I felt. However, rehab was put in place within weeks and I continued with it until the pandemic hit.

As has been said many times (sometimes by me!) You have to become your own advocate, also Secretary and personal assistant. Keep chasing up, never assume anyone will get back to you. Arm yourself with reliable information.

As to the hearing loss, I am so sorry to hear that. Please chase (and chase) up with your GP.

With very best wishes for your continued recovery. X

Khartoum7 profile image
Khartoum7 in reply to Nettekin

Well I'm usually not backwards at coming forwards but because I was so weak I have let it go....however I am quite miffed now so shall start to make a nuisance of myself! ;) Thanks.

Nettekin profile image
Nettekin in reply to Khartoum7

I understand, at the very time we feel least able to fight our corner we have to do so. Good luck!

Digger0 profile image
Digger0 in reply to Khartoum7

This might help as it gives info on Cardiac Rehab bhf.org.uk/informationsuppo... and location of approved rehab centres cardiac-rehabilitation.net/... Good luck

Khartoum7 profile image
Khartoum7 in reply to Digger0

Thank you...kind of you.

Vindicatrix profile image
Vindicatrix in reply to Nettekin

A very good post, with good advice Nettekin,, you are right to talk about 'Pressing them',you really have to be quite assertive at times. I do appreciate the great pressure the NHS have been under, and the way frontline medics have put their lives, literally on the line for us. But the NHS were in huge trouble before the Pandemic, and continues to slide, I'm afraid. All the best Ron.

Hello :-)

I felt so sad when I read your post about nobody asking how you are :-(

Well we are all asking :-)

I have not had the ear problem but I know others will relate they did

I would pick up that phone hopefully you have a contact number and let them know it has been 6 weeks and you have heard from know one as the Rehab Nurses I would have thought would have least been in touch

If you have a number for the Rehab Nurses give them a ring and say you wonder what happens next when you will be contacted

I hope your recovery is going well , try some pottering about , gentle exercises , taking breaths in and holding it for 4 slowly letting it back out for 5 to get those lungs strong again

Let us know how you get on :-) x

Khartoum7 profile image
Khartoum7 in reply to BeKind28

You are well named! ;) Thank you. I have been weak so have let it go but will start being much more forward!

BeKind28 profile image
BeKind28 in reply to Khartoum7

Hello :-)

I understand I get weak and have no fight in me as we say but then all of a sudden I find it and start making those calls that need to be made

The way you feel at the moment tired etc is quite normal at this stage it is still very early days :-) x

Morning Khartoum7

Have you had your post op check by your surgeon? If not give his/her secretary a ring, had mine done at 6 weeks. You are then discharged back to your cardiologist had that appointment 6 months after surgery and then discharged back to my GP.

As already been said seeing as you haven’t been contacted give the rehab team a ring, some places have a waiting list with patients who had their surgery in the middle of the pandemic and now things are opening up they are trying to catch up.

I had my surgery nearly 6 years ago, have a tissue valve and am supposed to have an echocardiogram yearly, last one was 2019, but have now got an appointment for the 1st June an echo and an appointment with my cardiologist for my 5 year review, by the way received this appointment 5th June last year! So everything is backlogged.

Keep up your walking, and you breathing exercises, they really do help. Remember when we are on bypass our lungs collapse so we need to help them fill all those little pockets up again.

I wish you a great recovery,

Pauline

Khartoum7 profile image
Khartoum7 in reply to 080311

Pauline..thanks.When it is personal it is hard to be understanding of the backlog and obviously some areas are better than others(or maybe not quite as busy) at supporting people. I have left a message with my surgeon's secretary asking when my check is due...no reply yet! :)

That is just a ridiculous statement you have made. Maybe the case in your area but I can assure you that in 2019 when I had my bypass I was given all necessary information prior to my procedure. After leaving hospital after nine days the cardiac nurses visited me at home weekly for three weeks again offered more advice and help if I needed then attended rehab and this was even more helpful than I could ever have imagined and without all the support I was given heaven knows how I would have got thru the first three months. Even afterwards I was assured that I could contact the cardio team for any advice I needed. Lucky for me I did not need to. So do not criticise other regions or areas that you have no experience in.

For the record I was treated in the NHS Grampian health care region of Scotland. And sincerely thankful

Khartoum7 profile image
Khartoum7 in reply to gilreid1

Just because you found the system great in your area doesn't mean everyone did! And as evidenced by other replies to my experience in my post people have had different experiences! Unnecessarily aggressive in my view!

gilreid1 profile image
gilreid1 in reply to Khartoum7

My reply was directed at the statement by b2btest. And the wording used was a generalised implying that all areas did not give a proper service. I can only comment on my experience and stand by what I say.

Fynndog profile image
Fynndog in reply to Khartoum7

Yes Khartoum. I had no help at all. My daughter had to ring for cardio rehab she only knew about it because it was mentioned on a phone call.I wasn’t even in the system. Heart attack two years ago . The only cardiologist I’ve seen is Private. Cardio rehab was 5 phone calls , not much at all. Even when the pandemic was over I was not offered that necessary rehabilitation

Khartoum7 profile image
Khartoum7 in reply to Fynndog

It does seem to be a recurring theme with a lot of us!

Vindicatrix profile image
Vindicatrix in reply to gilreid1

Tb be fair to Kartoum7, girlreid1, I think he/she was referring to his/her particular region, and not the NHS as a whole. I see no problem in him/her highlighting this and giving an honest assessment of experience. You appear to resent him/her this right, and in language that perhaps could be a lttle more diplomatic. I'm glad you had a good experience, many don't, and they have a right to express this. All the best. Ron

gilreid1 profile image
gilreid1 in reply to Vindicatrix

Please read my reply. I DID NOT reply to Khartoum my reply was to the comments by

Vindicatrix profile image
Vindicatrix in reply to gilreid1

I don't think its too relevant who you were replying to girlreid1, the points made by you and others were more important, I feel. No offence meant, none taken I hope. I wish you well, Ron

I'm afraid that sitting back and waiting for an appointment letter to arrive or someone to contact you is no longer an option. If you want to find out what is happening to you in terms of post procedure follow-up, you have to be pro-active and have to get on the phone after a reasonable length of time has elapsed and do your best to speak to someone dealing with you to chase things up. There will be phone numbers to contact on your discharge paperwork perhaps, failing that talk to a cardiology department secretary at the hospital where you were treated. But if you specifically want to start a cardio rehab course the BHF run one online (look it up) . I have no idea how good it is, but it is an option I would be pursuing if I were in your situation in the absence of anything else.

But if you need immediate health professional advice talk to your GP, or speak with th BHF Heart Helpline service.

Khartoum7 profile image
Khartoum7 in reply to LowerField

Thanks for that..you are quite right of course...its working out what is a reasonable time that's the tricky bit!....but I have made several phone calls today!My mother always used to say that the people who mither get things done ! :)

LowerField profile image
LowerField in reply to Khartoum7

Your Mum was right 👍

I don't know what operation you had, but I'll assume it was a bypass because of blocked arteries.

Many people seem to misunderstand what a bypass operation can, and cannot do. A bypass operation relives the symptoms of angina, it doesn't cure our heart disease, and it doesn't in itself make much difference to our risk of future heart attacks.

What it really gives us is a second chance, a chance for medication and life style changes to slow down the progress of our atherosclerosis.

It's important to keep this in mind when it comes to our expectation for post operative care. The uncomfortable fact is that there's not actually a huge amount that the doctors can do for us. Either the medication works or it doesn't, and either we radically change our life styles or we don't. That's pretty much the shape of it.

That's why the biggest part of the post op care is Cardio Rehab, which aims to educate us on the lifestyle changes that most of us need to make and how our medication works and why it's so important to take it as prescribed (don't forget, about 30% of prescribed medication in the UK is never actually taken, and a further large percentage is taken wrongly).

Back when Cardio Rehab was delivered face to face it usually started about six or eight weeks after the operation. From what I gather on this forum it's still not really back up and running, so for most people the best that's on offer is an on-line version, such as the one offered by the BHF.

The second major component of post op care is an annual review by either your GP or by a specialist practise nurse. This normally consists of an ECG, blood tests, weight checking for healthy BMI, blood pressure, and a few key life style questions such as smoking and are you achieving the recommended 150 minutes per week of exercise? The real emphasis is again on medication and life style. You should receive the first one about 12 months after discharge and won't hear anything until a few weeks before it's due, but it's been compromised by the epidemic and some GP's seem to be more diligent than others.

You may find this booklet useful, it's the discharge advice given to open heart surgery patients from Liverpool Hospital, I've seen others from different hospitals but they all tend to be similar.

lhch.nhs.uk/media/1099/card...

A common issue on this forum is that following open heart surgery people feel abandoned or left to get on with it. I can understand that, but I also see the NHS perspective, doctors are focussed on achieving medical outcomes rather than handholding, given that it's our taxes they're spending I tend to endorse these priorities! And as I said, after open heart surgery the ball is basically in our court, we need to take our medication and we need to change our life styles. That's basically all there is to it. If we do those two things there's a fair chance we'll slow our heart disease down and enjoy a decade or more of healthy active life. The NHS has done it's part, the rest is chiefly down to us.

Good luck!

Khartoum7 profile image
Khartoum7 in reply to Chappychap

Thanks for a really long and detailed reply...I appreciate the time you have taken.I suppose I was expecting a bit more than I have had..don't really need my hand holding but just a bit of reassurance after being released back home weak and vulnerable. I am feeling stronger than I did so must be doing alright by my own devices! It does help hearing what others have gone through,are going through and their thoughts and advice. Thanks again.

I would really like to know what excuses the hospitals who are not providing Rehab are putting forward. They must still have the staff available and at this stage of the C word that we can't mention there cannot possibly be a valid excuse. I would go as far as to say providing Rehab could literally make a difference between life and death, mine was absolutely fantastic in so many ways and I really feel for anyone who cannot access it. As far as I am concerned an online option is not good enough by any stretch of the imagination. I believe the offering of CH to cardiac patients is one of the main things each hospital should be doing in order to fulfil it's obligations under the guidelines. As I said earlier I think the OP should make a huge stink about this if it is not provided. Absolutely right regarding the lifestyle changes, which are hammered home during it.

Can I ask what is your own personal experience with heart related procedures in the NHS. And I am calm and glad to be so. Heart rate good BP good thanks to on going care provided by NHS

What was you post procedure? I may have missed that part

Your post does not mention your procedure but I am sure you can enlighten me

Ok. I also had stent procedure following HA. And I met many others having the same and all except myself were out and in same day. They were routinely treated following cardiologist examination. Can’t really say anyone had care issues there after.

Maybe I missed it but have read again. Nowhere do you state your PCI. Where most would say MY then mention what you are referring to. But that’s my logic so let’s leave it there. Good luck with your on going care

My cardio rehab was made a bit complex as it was one hospital referring me for rehab to another hospital far away (near my home town) . So when I had my heart attack they referred me and gave me a little leaflet with details of the referral and a phone number to ring. They also gave me an enormous stack of different BHF booklets to take home and read. After about 3 weeks I phoned the rehab (Hospital had told me to wait 4) the rehab nurse was very nice but said we could not start anything yet due to the fact that the hospital had loads more tests planned for me and possibly more stents. But she was happy to spend time chatting and suggesting some very gentle stuff for me to do. It turned out that I was never able to get there for classes due to the plague restrictions.

I suggest you ring the hospital and ask to chat to the rehab team

Khartoum7 profile image
Khartoum7 in reply to rizal

I will try...thanks.

Hi,I had 3x CABG 21.5 years ago and I can tell you it’s totally different now, the changes in outcomes are totally different but what isn’t is the way the NHS sends people home. After my recent out of hospital cardiac arrest I find myself with no information for a follow up with the cardiologist but what I’ve learned in 21.5 years is check letters you receive for email addresses and contact numbers for consultants secretaries. You WILL have to push to get treatment, I never try to jump the queue but always offer myself as available for very short notice cancellations, cutting corners is the way to get things done. Good luck.

Khartoum7 profile image
Khartoum7 in reply to Neil2566

Good advice..thanks! ;)

I had a similar experience and thought the hospital had forgotten about my cardiac rehab . It took ages to happen but eventually I was contacted and am now involved once a week . My fitness levels and general health were good before my valve replacement but the more exercise you can do the better . Walking is excellent but do try and pick the pace up so that you are nearly out of breath for 10/15 minute bursts . The heart is a muscle that needs exercise as-well as the rest of you . It’s hard coming out of the hospital cocoon into nothing but as the weeks pass I hope you get stronger physically and mentally.

Khartoum7 profile image
Khartoum7 in reply to Bobbers950

Thanks..I think I'm getting better..in fact I'm sure I am...:)

Hey there it is still early days for rehab so don't worry . It didn't effect my hearing but definitely effected my memory which i noticed an mentioned straight away. They came up with several reasons but didnt follow it up. 7yrs later i notice and worry its getting worse. 🤷‍♀️

Khartoum7 profile image
Khartoum7 in reply to Skylajean

Well I'm having to try and sort my hearing problem myself...appointment with a retail chain next week...free thank goodness. The memory thing must be a worry for you particularly as you noticed it straight away! Thanks for the post.

I had my bypass 2019 but my husband who was meant to be my carer was admitted to hospital himself. I did not mention this to the hospital but if I had I would have had a great deal of attention from carers provided by the post op nurses . It was a difficult time and the drugs I was taking meant I couldn’t eat without pre sickness medication and had shocking diarrhoea. . At six weeks I was sent for my post op evaluation and was sorted out. It helped me to read up as much as I could about what to expect post op. I think you should have been contacted about now for your evaluation . You therefore should push strongly for this as the pandemic has changed everything .Regarding what Megan Markle said I think she had enormous opportunities to be listened to

Khartoum7 profile image
Khartoum7 in reply to Pollypuss

I was only trying to get a catchy headline when I mentioned Miss Markle...no fan of hers!Thanks for replying. :)

Pollypuss profile image
Pollypuss in reply to Khartoum7

Ok😺

I don't know what your op was Khartoum but I think you have every right to be miffed and to chase this up.I agree with most other responses that aftercare seems to be lacking. I am hearing this a lot lately.

And I couldn't agree more with what you say about needing to push but not having the energy to when you at your most vulnerable. I had a very useful chat with my local MP (actually MS as I am in Wales) recently (about access to primary care mostly) who was more than happy to pick up the baton....but this takes energy too.

Wishing you all the best for your recovery and in getting assessed for your hearing.

Thank you for replying..:)

Hi Khartoum 7, I think it’s a postcode lottery what aftercare you receive and when, it’s now 8 weeks since my HA and stent fitted but not had any rehab as yet, but last Thursday I was contacted by cardio physio and had an appointment last Friday and was told I am being recommended for rehab, I have read a lot about people getting seen a lot sooner than 6 weeks after, but nurse told me there was a backlog and they are trying really hard to catch up. I know from experience what it’s like to watch for that letter in the post and like you was not sure whether to contact the hospital or not. As regards ear problem I too have had ear problem an infection and perforated ear drum which has left me hard of hearing, yours may not be related to infection, but just a thought. Hope you are contacted soon and good luck going forward. Dave

Khartoum7 profile image
Khartoum7 in reply to Mtk1

Hi Dave...maybe you should ask for a hearing assessment like I am....it is debilitating isn't it!

Mtk1 profile image
Mtk1 in reply to Khartoum7

Yes I was prescribed antibiotics which helped with infection, but I’m still suffering from deafness in my ear. Maybe ask for an assessment also.Dave.

Had aerotic valve replaced and partial myectomy in December, never offered any rehab , just told to keep walking

Make sure you stop and turn around otherwise you'll end up at John O' Groats! :)

This is a well known problem. Almost complete lack of aftercare. I resorted to private cardiologists. The issue is not so much the medical need, but the fact that as a discharged patient, you are scared, and there is nobody to help. I have only seen the NHS cardiologist who did the angiography on me once and that was when he did a follow up angiogram to ensure that there were no clots or stenosis. I talked to him on the phone, but it is really not the same as face to face. Currently I have no clear answers. It does seem though that you need to push the NHS. For instance, there should be a contact number for cardio rehab. I had a heart attack in the middle of the pandemic. There was no face to face rehab. Like you I did nothing. I should have phoned the cardio rehab people at the local hospital and enrolled for the video rehab. Being just out of hospital, I just got more and more depressed, and did not phone. I saw a private cardiologist (one of the ones at my local hospital who also did private). He said one of the real problems was the lack of cardio rehab, but did not suggest an answer. I found that when you are low, self motivation is difficult. In the end, I did phone the rehab people and by that time they were just starting face to face rehab.

If you have a problem related to your op. etc. your cardiologist/surgeon has a secretary. It's a good idea to phone them.

Another useful contact is the BHF. They have cardio nurses who are very helpful. You can ring them up and they are usually very knowledgeable.

Hearing though, is more of an issue. I believe that CABG operations carry a risk of neurosensorial hearing loss. This happens when the hair cells in the cochlea in the inner ear die. Their function is to convert the physical energy of sounds to electrical impulses and send them into the brain via the audio nerve.

This has happened to me on 2 separate occasions, not as a result of any operation, and its not clear why it happens either as a result of an operation or idiopathically as in my case. I, recovered some of the hearing in one ear. Unfortunately the hair cells in the cochlea don't regrow, so in my case, the hearing in my left ear is gone for good. I have a cochlear implant. Your hearing loss may be different, I'm not a doctor, so you need to talk to one.

Hope this is useful

Khartoum7 profile image
Khartoum7 in reply to richard_jw

Very useful Richard...thanks a lot.I am hoping that a hearing aid will solve the problem..it is debilitating only having the use of one ear isn't it! I've finally got an appointment for my hearing to be checked next week! ;)

richard_jw profile image
richard_jw in reply to Khartoum7

All the hearing went in one ear. What this meant for me is that I could not locate where sounds were coming from. If you have some hearing in the ear, modern hearing aids are pretty goodGood luck

Im from the Philippines, some hospitals here may have the same problem, im lucky i picked the best there is and they were very supportive. Prior operation, imagine most of the 11 doctors dropped by my room, introduced themselves and their participation including how he/she will do his/her part. Post op was no exception, the hospital actually kept bugging me with emails, messages of my appointments with my post op medical team of cardios, surgeons and therapists. What i did, and still does now is to communicate with them on scheduled basis thru viber and we all got used to it. They appreciate reminders and feel committed with my perseverance. I appreciate it more since im getting their best.

My main cardio told me prior operation that should i not feel comfortable with any on his team he will replace with somebody im more comfortable with. Such assurance made me feel better.

More than 6 months since i met them, i still have them all intact. But i mean, find a medical team who you will be comfortable with. You are entrusting your health to them, select the most trustworthy ones. This will take some anxiety off your mind which we dont need at this time.

Stay safe and healthy! Cheers!!!

Thanks so much for your reply...you sound as if you had a wonderful team! The team that did my surgery were very nice too...all introduced themselves before...your aftercare is of course what the rest of us dream about but hey..that's life! Thanks again...;)

Hi. I’m also 6 weeks post CABG. Well done us. One of the reasons I joined this forum was to get some support that I wasn’t able to access from aftercare. Sorry you’re not getting what you need. I’ve called a few times this week to get rehab sorted. I’m on a list apparently so will keep calling until something happens. Thankfully I know a couple of cardiac nurses who check in with me now and then. This forum is good to discuss any concerns you have. In Australia - where my family is, after the same op you get nurses visiting you at home. Anyway… I’m grateful for the care I got in hospital but my cardiac nurse friends agree that aftercare is lacking. Something to do with a decade or 2 of underfunding perhaps. Good luck with it all!

Khartoum7 profile image
Khartoum7 in reply to Peas23

Morning...thanks for that....I am ,of course,grateful to the NHS for my recent op but do feel that areas like visits and follow ups would be perfectly feasible if someone tackled the eye-watering waste in it ! 🙂

I’ve just found out the waiting list for rehab means I can’t get a rehab appointment until start of July at the earliest. Apart from referring me to my gp (good luck with that) or the BHI website there is nothing I can do. Now considering private physio/rehab - I’ll post here to see if anyone else has done this.

Khartoum7 profile image
Khartoum7 in reply to Peas23

I do sympathise with you...from what others have said the BHF website is worth a try...

You may also like...