No support

[Shellac]

Morning all 6 weeks ago I ended up having a stent and diagnosed with angina all out of the blue, did have a bit of breathlessness and chest pain. Basically I was in and out of hospital within two days, loads of heart medications and basically left to get on with it, I've had no support, only now coming to terms with it. How have people been dealing with the shock and change of life style. I thought I would be fighting fit by now but I'm so tired

[Hidden]

Hello

I am so sorry what you have been through and now feeling abandoned and left to get on with it , I think a few of us have felt that way and it is not a nice feeling as after the event we need that support

Were you not given the number of a Rehab Nurse while you were in Hospital ?

Usually you are and when the time is right they do Rehab classes that help so many

It is early days and will take time before you feel better in yourself but you should have someone to talk you through all this and support you

You could trey giving the BHF Nurses a ring they will give you some good advice

You can contact them on

0300 330 3311 Mon-Fri 9-5pm or email [e-mail]

You have us to talk to as well of course who have been through stents or in my case Bypasses

You have to take it easy and slowly build your self back up but get some advice either ny phoning the Nurses or speaking with your Doctor

Look forward to hearing how you get on x

[Shellac in reply to Hidden]

Hi thanks for replying I did phone cardiac rehabilitation but the nurse said I was not under there criteria I will ring again

[Hidden in reply to Shellac]

Hello

I am sorry to hear that you have to be under someone , maybe if they say that again ask who you are under then ?

I hope you find out and let us know x

[Heyjude31]

Hello Shellac I am so sorry to hear about your heart event. This is a great forum to be part of and lots of people will have shared your experience and will be able to advise. I had a 4 x bypass 9 months ago and am still in the recovery journey, although I am so much better than I was. I think one thing I would say is be kind to yourself and don’t expect too much. You say you have had no support and again a lot of people have similar experiences. I would get in touch with the hospital and enquire about cardiac rehab. I had to go outside my NHS region to get support and they have been brilliant. This is a great forum with lots of hearties! who will share their stories although naturally we are not medically qualified. Take care and take it steady. Exercise and diet are the focus and being kind to yourself. Judi

[Chappychap]

This is such a common issue on this forum, you're discharged from hospital but there's no one to explain what this shattering diagnosis actually means.

If the system is working properly, and assuming you're in the UK, the hospital that treated you should refer you to a Cardio Rehab Course. This is a series of six weekly meetings where you'll have an opportunity of putting as many questions as you want to some very experienced cardio nurses, plus you'll be taken through your medication and life style changes in great detail, including being given a tailored exercise programme and healthy eating advice.

Unfortunately it's a bit of postcode lottery, but you're normally contacted about six to eight weeks after discharge. So if you don't hear within the next few weeks contact the cardiology department at the hospital that stented you and request Cardio Rehab.

Beyond that you should also be offered an annual cardio check up with your GP or with a specialist practise nurse. The first one will be in a years time, again if you don't hear then ask.

The final bit of help I'd suggest is requesting a copy of your medical records, you have a legal entitlement to these so there won't be a problem.

Let me explain how all these things fit together.

The first thing to recognise is that our heart disease (which is why you needed a stent) is for life, stents (or even bypass surgery) don't actually cure us. The key to a long and active life is two things, medication and life style changes. Cardio Rehab explains all this in great detail. The hard reality though is that for almost all of us there's no more "business as usual", to stay healthy we'll have to make changes to our life styles and some of these changes can be pretty challenging. Avoiding heart attacks and strokes means taking our medication as directed and eliminating our risk factors.

But that's where our medical records and our annual cardio check up comes in. We can measure and monitor how our medication and life style changes are affecting our key heart health measurements. So we need to be conversant with our lipid scores, our HbA1c scores, our blood pressure scores, etc. Again, Cardio Rehab will explain all this.

The truth is that keeping healthy and successfully living with heart disease is probably more about our choices and actions than interventions from the NHS. Our futures really are in our hands.

Good luck!

[Cee-Cee1 in reply to Chappychap]

This is a great post Chappy and very informative. At my six-week assessment with the surgeon after my by-pass this year I thanked him so much for everything he'd done for me and he replied "Not at all, I just did the easy bit - you've got the hard work ahead of you!".😃😃

[Solesofhershoes in reply to Chappychap]

What a great reply 😊

[Hidden]

Dear Shellac

A warm welcome to you, I hope that the forum can give you the support and knowledge that it has me and many others.

Your story is one that is echoed throughout this {and many other} forums as we all become a number passing through the NHS system.

The more the press/government etc recognise the huge back log of waiting patients, the more members like you will be telling the same story.

Please this does not distract from the procedures and the effect that it has had on you but just to say that the story is becoming more common.

Like you I feel that some of my after care has been questionable {this is from someone that hates a fuss} and rushed, sometimes they get away with it and now a lot of times they don’t with me. {although sometimes it’s completely out of your hands}

I ask questions and will not budge until I understand the answer {god have I been fobbed off with some techno garballed rubbish in the past}

You mainly need to know that you are not alone in feeling as you do and we are here to help you over this stage of your journey {and any other if you need it}

Take care { you are doing fantastically }

[AlfredV]

The NHS has good and caring people working in it, but as an organisation they couldn't care less whether you live or die. The day I had this revelation was the day I began my long road to recovery.

The only person who pays the price for a bad decision or lack of advice or care is yourself. So personally, I use the NHS when I need them, but I also do what I can to be as knowledgeable about my own medical conditions, which enables me to make the best decisions I can about my own health and wellbeing.

It is a harsh lesson to learn, and no doubt some will disagree because it is an emotive subject.

[Shellac in reply to AlfredV]

It is such a big shock when something like this happens I have read up on my condition but it would have been nice to have had some support afterwards apparently as I didn't have a heart attack I wasnt entitled to cardiac rehabilitation.

[AlfredV in reply to Shellac]

Don't be too hard on yourself with recovery. I did have a HA and 5 days in hospital, but like you I had no rehab and no follow ups. I was discharged without seeing a GP or cardiologist. Zero outpatient appointments. I was told that I should be able to return to normal activities within two weeks, but actually it took several months for my chest pains to subside. It is different for everyone. Take your time, do what you can, but don't push too hard.

[Chappychap in reply to Shellac]

"apparently as I didn't have a heart attack I wasnt entitled to cardiac rehabilitation"

I didn't have a heart attack either, but I was offered Cardio Rehab following a bypass operation. Plenty of other people on my Cardio Rehab course also hadn't had heart attacks, but were there because they'd simply had a stay in hospital with a heart related issue.

Cardio Rehab is preventative medicine, it's designed to equip us with the skills, motivation, and knowledge to keep ourselves safe and healthy. You should qualify because of your risk factors rather than your specific medical experiences.

If I were you I'd go back to the hospital and ask, it's yet another medical postcode lottery. Cardio Rehab was transformational in terms of taking responsibility for my own future health. I can't recommend it highly enough.

If all else fails the BHF (who sponsor this forum) offer an on line version.

Good luck!

[Shellac in reply to Chappychap]

Hi I rang my local hospital cardiac rehabilitation and explained everything, now they are more than happy to help someone will ring me tuesday thanks

[Chappychap in reply to Shellac]

Excellent result! Let us know how you get on during your Cardio Rehab course.

Good luck!

[Song19]

When I had stents it was a couple of months before I felt anything like normal, felt exhausted after a short walk. But is does get better, you won't be running around as quick as they claim. The hospital provided follow up physiotherapy for patients for 6 weeks, very useful monitoring, and there was a CD of graded exercises from British Heart. Ask....(mine was about 4/5 years ago...!)

[CyclingTime]

I had a quad bypass at the end of January and there was zero support until after 6 weeks but that was cardio rehab so fitness based To this day not a single consultant or doctor has even examined me once since I was discharged one week after the operation!!!

Take it easy initially, get comfortable with how your feeling and if you are concerned about anything get straight on to the doctor or 111/999. For me I have luckily been fine but it's despite of not due to any care received

[Ocset]

I can totally relate to what you are going through and things will get better.

After my HA and stent, I asked my GP for a rehab referral and wanted to know a bit more about this socking change that turned my life upside down but had no adequate response and since then everything seems to be a struggle / argument with my GP's surgery.

Saying that HA support team services offered some help but a monthly 45 minutes meeting was not sufficient as I was seeking re-assurance and explanations.

The best support I got was from the BHF forum and nurse, I can not stress enough the value of this forum where sharing experiences and knowledge is invaluable.

Everything will be ok and life will go on.

[Darragh5]

I hope you get the help and caring support you need as you cope with your health issues, I find my faith a great source of help and also being able to get out in the fresh air for walks is vital, I hope everyone on here gets good sound advice I really feel sorry for those who are struggling! life is tuff if your ill, I have my own trials but with God's help I find he see,s me through, I know not everyone believes we all choose our path I guess but please know I genuinely care.

[Mentdent]

I think there’s a postcode lottery in cardiac rehab. A friend in Bracknell who had a heart attack and stent the same time as me got good access to rehab while I, in Shropshire, got a phone call to say cardiac rehab was closed because of the condition that must not be named. I arranged my own by contacting BHF nurses and finding a gym that catered for people like me.

[Wellington19]

I had aerotic valve replaced and partial myectomy well looked after in hospital , no support at all afterwards

[Gemini1966]

Hi Shellac, I had 2 arteries replaced last April,left hospital with a lot of meds and warfarin a slight conversion in the hospital about the warfarin and that was that.That was in April,no one had got in touch concerning the blood thinner and how you need it checked.I went back to work on n the Aug and felt horrendous so off I pop to the surgery and low and behold I get a drilling from 2 nurses stating my INR was 1.1 meant to be 3-3.5,I just burst into tears as how was I supposed to know that if no one tells me!Im 56 with 8 grandchildren and work full time so you’re life does come back even when you have nt had help groom the NHS. Good luck and keep smiling😊

[Hazel1010]

Good morning , sorry to hear your journey so far has been a bit lumpy Bekind 28 is right you can speak to a nurse from the British heart foundation on03003303311 , I’m sure they will have sound advice and help for you , other than that there loads of people on here that will help you with support x

All the best x

[Raffles77]

Morning, I had my heart attack on the 30th August 2020. It was a surprise to me too, as I thought I was fit. Am 67. 3days in hospital and home. Since then I have had all sorts of support. (I live in East Yorkshire). Have had phone calls from rehab, a video sent from them to help exercise for an hour 3 times a week and have not long completed 8 weeks of 1 to 1 at the gym, twice a week. I am also tired but played 3 games of tennis on Tuesday. I was concerned at first and didn't run about too much, well so my playing partner said, but by the third match I felt good. May I suggest you contact your local surgery and tell them your situation and tell them the help I have had. Good fortune.

[Raffles77]

I will add, the NHS have been brilliant from the event in August and continue to support me. One thing I have done is cut out tasty cheese, very high in cholesterol, which was one of the reasons which may have helped me block the artery.

[Solesofhershoes]

Hi Shellac

I totally get how you feel and feel exactly the same

I feel useless, I’m so tired all of the time, my body aches and I could cry at just about everything and everything is getting on my nerves. It’s so bloody hard but this site is great and there are some really lovely supportive kind people on here! I may be of no use but I’m here if anyone needs to talk or scream or just generally feel bloody sorry for themselves for a while after what has been a very traumatic experience I’m sure for us all. #itshardbutwecanlisten

[AlexFlorida in reply to Solesofhershoes]

Hello Solesofhershoes. You are not useless! You’re a human being and you matter! It definitely is hard specially with everything your going through….. but you’re here and I’m routing for you to get better! I’m also here to listen and help others

[Qualipop]

That's par for the course. Follow up support for hear t patients is nil. You would think it would be their priority given the shock we get. Do try to have a talk with your GP. Mine was superb at explaining things after my heart attack and stents. The tiredness could be from your tablets, especially if you've been given a beta blocker. Your GP may alter the dose, change the time of day you take it or even change it completely.

[Diy66]

Hi ShellacSo sorry to read your news, I’m in month 9 after having a heart attack and cardiac arrest in October , I had two stents fitted and basically been left to my own devices, did have a stress MRI scan in March, saw my Consultant last week who asked if I’d have a scan yet 🤦🏻‍♂️ Also what medication I was on, I was admitted in hospital 3 days before I saw him as I had a bad angina attack, he told me I didn’t have angina, totally confused.

To be honest if it wasn’t for this forum I’m sure I would have lost the plot, reading peoples trials and tribulations makes you realise your not the only one,

[madfox]

Hi Shellac, Like others on here I also had no support after my HA in January 2021. My GP can't even get the date of my HA correctly written in my medical records, they have it as March 2021. I quickly discovered that having a major heart event and stents fitted during a global pandemic was a nightmare. I had to push and push for some kind of care. I now have support on zoom from a psychologist because I could not come to terms with the shocking changes to my life and how only after 4 days in hospital following the fight for my life I was sent home and left to get on with it. I did eventually have a call from a cardiac nurse because the medical student GP at my surgery wrote to the Cardiac Rehab to find out why no-one had contacted me after eight weeks post HA. I have to say that she was very good and supported me loads with phone calls (no cardiac rehab here in Wales due to Covid 19) . Anything else has been very hit and miss and I am still having to chase people for care.

I recently had covid and had to cancel my physio and OT phone sessions, that had only just begun and now I am back to phoning every week to try and get them to phone me back. So now 16 months after the HA I still have had no proper cardiac rehab.

So you are not alone as so many have said on here and I would add that you need to keep pushing for support, I hope they ring you on Tuesday.

Take care of yourself and listen to your body and don't try to do too much, I have found that slowly slowly is the way to go. I am now a lot better than I was 6 months ago but every so often if I over tire myself then I end up back at the A&E department being checked out. Any time you want a chat or just to let off steam then I am here. Also I would say try to find a local Cardiac support group, they are great. I recently started going to monthly meetings with a local group all of whom have had heart events.

Best of luck for Tuesday

Jo

[Hidden]

Assuming he has received the paperwork it would be a good idea to discuss the implications with your GP. In other words, the first step is to get a clear definition of the problem. Next step would be to find out what's the best you can do in the situation in terms of, eating, exercise etc. Also how they are going to treat the condition in terms of medicines etc. My GP surgery had a poster up for counselling for heart conditions - unfortunately I don't know what the number organisation is, but you could investigate. I missed my angiogram yesterday because I forgot to pause an anticoagulant, but I will be having it soon, so I may have to take my own advice before long!

[nilmonisikdar40]

Hi Shellac, You should have been feeling better by now because it is 6 weeks since the procedure. Yes, I agree your cardiac rehab is the first port of call. Alternately contact your G.P ( I know how difficult to get an appointment). You may require blood test- perhaps your blood count is low or underactive thyroid. I understand constant feeling of fatigue is a bad thing because it affects your mind. Wish you well.