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Dawnmarie78 profile image
45 Replies

Hi all,

So my heart attack was on the 21st Dec last year , is it normal that im still waiting to be contacted by the rehab team and that I dont have any follow up appointments as of yet ?

Kind of feel like I had the heart attack, had the stent fitted and was sent on my way to work it all out myself , I thought I would have a bit more support from the hospital/ specialist but im having to find support elsewhere, like here for instance.

Thanku for reading 😊

Dawn .

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Dawnmarie78 profile image
Dawnmarie78
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45 Replies

Hi, on my discharge letter it was noted that I had to contact my GP for blood tests three months after my discharge.These have been repeated every three months by my GP, all the results have been good.

It was about 14 weeks after my discharge that rehabilitation classes commenced, that was last year.

Four months after my angioplasty I had follow up appointment with the cardiologist and I was "signed off" and given the all clear.

Dawnmarie78 profile image
Dawnmarie78 in reply to

Hi, thankyou for the reply .I was referred to rehab that's on my discharge papers, I guess I will just a wait a while then and see if they make contact 😊

Nettekin profile image
Nettekin

Hi Dawnmarie. Before the dreaded "C" it was usually a maximum of six weeks before being contacted about rehab. Now, it is likely to be different, but it does seem a long time so worth chasing. As you are finding, the "fixing" part of heart issues is great, the follow up not so much. I think we all need to be proactive and become our own health advocates. Best wishes x

Qualipop profile image
Qualipop

I think a lot of us feel like that. Fixed your plumbing now go away. I was contacted by rehab though after about 3 weeks. YOu should phone them to find out what's happening. MY rehab nurse actually refused to let me join because I'm in a wheelchair so I was simply signed off back to my GP with just a blood test after 3 months. Your gP surgery should have the phone number for rehab and should have contacted you about blood tests.

Kristin1812 profile image
Kristin1812Heart Star

Your GP is first call, if anything worries you. I suspect rehab wait is different in different places. Here, I was told they waited 12 weeks before contacting you for assessment of suitability for rehab.

Hello :-)

When I was in Hospital a Rehab Nurse came round introduced herself and gave me a leaflet with her number on and said any problems give me a ring

I am surprised that not all Hospitals have the same and I can totally understand how you must feel you have been sent on your way as you say to work it out yourself

I would phone up the ward I was on and ask them could they tell you or give you a number for their Rehab Nurses as every Hospital I would imagine will have them

You should get a letter with a follow up appointment it could be a little early as yet and you could ask your Doctor

But I would certainly find out who your Rehab Nurses are they can look on the system and even be able to tell you when your follow up appointment is

Let us know how you get on and in the meantime you have us and where we can help we will or you can just vent how you are feeling and we will listen :-) x

Alison_L profile image
Alison_L in reply to

Hi BeKind. That's what happened with me in 2018, but I'm now volunteering for that rehab team and they no longer do ward visits since "C". No idea what the waiting time is now, but I do know they're backed up, so 2 months probably isn't a long time for Dawn to have waited so far! xx

in reply to Alison_L

Hello :-)

Every Hospital must work differently because this was the height of covid and Rehab Nurses were still doing ward rounds , taking telephone calls and meeting with patients that had been discharged for follow ups

The only thing the Rehab Nurses during the height of Covid stopped was the Rehab classes which they have now resumed again :-) x

Knit4fun profile image
Knit4fun

I had a heart attack and stent fitted almost a year ago. I had one phone call from a cardiac nurse re rehab and then about 5 phone calls from the rehab fitness person who just repeatedly just told me to go for walks despite my telling him I had a bad leg and couldn’t walk far.I have never spoken to anyone from the hospital, no cardiologist etc. I have had my meds checked but that’s been by telephone. I have trouble with breathlessness and tiredness but was told it’s the tricagrelor and to put up with it as it’s only for a year.

I have since changed my GP so will see what happens when I stop the tricagrelor.

Just my luck to have a heart attack in the middle of a pandemic.

Fynndog profile image
Fynndog in reply to Knit4fun

Hi knit4 fun . I had the same experience as you. Plumbing fixed the rest us down to you. Felt very isolated during that period. Phone calls from rehab counted for very little. The only really constructive help I received was from BHF nurse when I phoned. We have a very limited health service now unfortunately.

in reply to Knit4fun

Jesus I could have wrote this , I had a ha n April last year , seen the guy to sort my meds out , met some nurse n a field for five mins for a couple of week . Haven’t had Cardic rehab haven’t heard or seen a cardiologist, haven’t even seen my gp since . It’s terrible .

Knit4fun profile image
Knit4fun in reply to

We had our HA about the same time.I have not had one day since then that I have felt well for a whole day.

Prior to HA I was very healthy and fit and cycled, swam etc now I’m knackered just doing my she laces up.

As soon as I’m off this one med at the one year point I’m going to start rattling some cages if I don’t feel better.

in reply to Knit4fun

I hear that , I was fine before the ha, now I find I’m exhausted if I have a shower , like really exhausted. Walking upstairs is a chore . Had to give up work as a chef cus that’s impossible now .

Knit4fun profile image
Knit4fun in reply to

I’m sad that this has happened to you but it is good to know it’s not just me.

Qualipop profile image
Qualipop in reply to Knit4fun

Rattle cages now with your GP and get your medication checked. For various reasons I had every single one of mine changed but the worst was bisopralol that was dropping my BP far too low and ticagrelor that had me struggling for breath.

Qualipop profile image
Qualipop in reply to Knit4fun

I also felt I couldn't breathe on ticagrelor. i could breathe but it felt like an asthma attack, couldn't take a deep breath.I had it swapped to clopidogrel.

SueMel12 profile image
SueMel12 in reply to Knit4fun

This story could have been me writing it.Everything the same as you.Felt totally isolated unsure what to do.Couldn't have rehab as my paperwork got lost.When my paperwork was found 3months later cardio rehab was full up so had physio nurse call with exercise chart. The only contact with cardio team was a phone call last week stopping c lopidogrel due to breathlessness I've got to ring them in 2 weeks to let them know how I am. I feel that I should have at least had a face to face consult. Good luck to you on your journey.

690704 profile image
690704

Hi Dawn, I had exactly the same thing after having a cardiac arrest in July 2020 . I am only just seeing someone at the hospital now after contacting the rehabilitation team myself. I was sent home with a pacemaker and ICD fitted, medication and left to get on with it. My advice would be to take it upon yourself to contact the rehabilitation team in your local hospital yourself. They were very understanding when I did and have now got me on the right track. Sandra

Chriswood79 profile image
Chriswood79

Hi Dawnmarie78. I had HA and stent in August at 42 and was contacted by the rehab team after a couple of months I think. Eventually started rehab for 6 weeks in November. I found being discharged from hospital difficult and lonely. Ive found this site a great help for knowing I am not alone. I waited for a long time for an echocardiogram which I was initially told would happen when I was I hospital and eventually went private (the NHS appt came through the day after…). Speak to your GP - they are there to help. Good luck. These are crazy times. Take care and take it easy - you’re only a couple of months in to your journey. Chris

Chriswood79 profile image
Chriswood79 in reply to Chriswood79

Also like others say, go straight back to source with the hospital cardiac rehab team. I was treated really well and the course was brilliant.

Dawnmarie78 profile image
Dawnmarie78 in reply to Chriswood79

Thankyou , so many things go around my head , I'm only 43 , I've really been struggling to get my head around it all , I'm so pleased I found this group its so helpful to know I'm not alone in my worries and the way I feel 😊... im going to get in touch with the rehab team and take it from there .

Fynndog profile image
Fynndog in reply to Dawnmarie78

Hi dawnmarie78 . I wrote to the cardiologist at my hospital. I told them how I felt ( sidelined) explained how the meds were upsetting my stomach and why had it been 13 months with no follow up. The reply was that it was all guided by me, if I was unwell I would see my GP, if symptoms warranted it I would be referred back to cardiology, so therefore I did not have a precise Cardiologist but they were always there for me.In theory that makes sense. Plumbing fixed . Meds ( see doctor) change if necessary. Anything serious call ambulance. All in place yes until you can’t get to see a doctor, or doctor unwilling to review meds because Cardiologist had prescribed them. This eventually gets fixed but takes time. In theory they are there but the waiting is not for heart patients.

The worst is the fear we all go through and eventually we come to terms with it. We have actually survived and not buried yet . We also learn that only by persistence do our voices get heard. The health service is broken and we have to push and push again and hopefully we get where we want to be. Being a good patient gets you nowhere.

This site is brilliant. So many good people with sound advice. If you are scared or worried call the BHF nurses they are great.

xmland profile image
xmland

11 months post MI for me.

Mentdent profile image
Mentdent

Mine was March 17 last year. Had an ultrasound a couple of weeks later, a letter to say all OK and a phone call from cardiac rehab in Shrewsbury to say they were closed because of Covid. My GP has handled everything else for me if I asked but I’ve had no other contacts from cardiology.

Yogi1950s profile image
Yogi1950s

Hi DawnMarie,I had my heart attack at End of November 2021 and I am still waiting on both Rehab and consultant's follow up.

The local rehab have the attitude "We have had covid to deal with and we are not offering face to face appointments yet. We will contact you when we start again."

The Consultant and her secretary ignore my calls!!

In general I was feeling like I was an unimportant nuisance!!

Then I called a neighboring health authority's rehab team and I have first (phone) assessment tomorrow.....

I think persistence and thinking outside the box is the answer

Good luck on your journey

Yogi

Jules2021 profile image
Jules2021

Hi Dawnmarie.The rehab nurse phoned me two weeks after discharge from hospial and arranged an appointment for week three. She went over all what had happened and have me a book which explained the different types of heart attack and the different meds. I wasnt offered physical rehab classes as the ward they usually use in the hospital was being used for "c" rehab at that time. I did have calls with her every three weeks though and she told me to make sure i got bloods checked after 3 months which i did.

Consultant sent out app letter(phone call) for three months but he was then isolating so it was 5 months i actually got it. I did feel left out on my own to get on with it as i find it hard that they can tell how you're doing over the phone!

Like yourself,I was 43 when I had mine and shock/fear is a big factor to get over! I had counselling with a local group which was fab.

Best wishes and take care. Julie x

Montserrat1970 profile image
Montserrat1970

Hi Dawnmarie. I know exactly how you are feeling. I had a HA oct last year, ( age 50) there was no mention of rehab nurse, INFACT I didn’t know it was a thing until I joined this group. I have spoken to my cardiologist ( phone) once since the HA & had only one set of bloods taken in November.!In the early days I just felt like I had been fitted with this stent and then left on my own to deal with the shock of what had happened. Problem with that ( or at least for me), I just go on google and that’s not always the way forward. I feel even a chat with a rehab person would have been of benefit to me… it still would. I am going back to work next week ( first time since HA) and have just decided that I am not going to dwell on what has happened. Am gonna move forward. It’s just seems odd that some people get offered rehab and others don’t . Good luck in your recovery Hun. Tracey. X

MountainGoat52 profile image
MountainGoat52

I never got rehab after my HA / stents because I was referred for bypass surgery. More than three months after the surgery, when I had been signed off by my surgeon, given consent to start driving again by my GP and was even back climbing hills, the call to go to rehab eventually came. I guess it varies from area to area. At least when it eventually happened, the course was structured to ability and I was able to benefit from having a good workout.

Hollyxyz13 profile image
Hollyxyz13

Hello dawn Marie.sounds like were all having the same experience.my husband had a heart attack and stent fitted last April .he was discharged two days later with a bag of medication and a lot of leaflets.rehab phoned and advised him to walk round the house.everyone is very nice on the phone but I feel we have had to push for everything.i would phone the ward that you were on and get the phone number of the rehab team and speak to them.Keep strong we are all with you.xx

Razor1967 profile image
Razor1967

Had my heart attack and CABG x 6 with no previous warning signs end of June last year. To say it was all a shock at 53 would be an understatement. Discharged with medicines from the Hospital a week later. A heart nurse rang every 2 weeks for about 2 months and I was never offered any Rehab. I just followed the videos on the BHF website. The Cardioligist did a telephone appt after 7 months and discharged me back to my GP. He didn't really listen to my concerns and couldn't wait to get off the phone. Luckily my GP has been great and I have been seen face to face a couple of times with minor setbacks, couple of small infections etc. They listened to my chest, heart etc and really put me at ease. We have 2 dogs which have been great for my rehab and am doing over 2 miles a day with them. So to sum up I had brilliant care in the Hospital but a bit mixed after discharge, thankfully I am lucky to have a good GP group who you can email and they get back within 24 hours.

BessieMartha profile image
BessieMartha

Hi

I had a quadruple heart bypass on 03 December 2021, luckily for me it wasn't preceded by a heart attack. I contacted the rehab dept. of my local hospital and was fortunate enough to get put on a rehab course. However, if you can't get put into one of these courses, there are a series of videos on the BHF website. Try this link bhf.org.uk/informationsuppo....

Controlled exercise is definitely the way forward for me

I hope this of assistance and good luck for the future

Misstibbs profile image
Misstibbs

Hi Dawn I had the same in December 2019 but didn’t get any rehab primarily I think because of Covid, I also asked for an exercise stress test but my area doesn’t do them, I did ask my GP for a further echocardiogram and was successful. So don’t wait too long before taking the initiative to start some rehab yourself along the BHF guidelines. Good luck

Cruise1 profile image
Cruise1

I got a telephone call the day after my discharge after having stents fitted. No rehab offered due to Covid - I found the BHF videos online but my wife adapted them due to her hip surgery so we could both do the exercises at the same time but we found walking every day more beneficial, aiming a bit further each day til we got to 5 miles.

Pilatesman profile image
Pilatesman

Dawn, my HA was last October and the cardio rehab people contacted me a month later and I immediately started a program of exercise at a local GYM. It was all organised by the cardio unit at the local hospital.Most importantly the weekly program was supervised by cardio nurses from the same cardio unit. This gave me a route into a local cardiologist who has helped me with medication issues and a follow up discussion with a cardiologist ( albeit by phone). The follow up chat was not scheduled initially as my procedure was deemed problem free with one stent.

My GP was not very helpful.

So, all this says you need to be aggressive with your local hospital cardio unit. It’s a must to get on the rehab course where you can establish a relationship with the nurses - they are certainly (for me) key to ongoing treatment.

FYI I live in SE London

Dawnmarie78 profile image
Dawnmarie78 in reply to Pilatesman

Thankyou, I was told how important it is to go with the rehab team etc and how much it will help , hence why I was expecting to have heard from them by now . I will be contacting them tomor , currently waiting for a call regarding a bit of counselling this has all left me with anxiety, something I've never suffered with before 😔

Travel13 profile image
Travel13

I know exactly how you feel.I had a cardiac arrest in April, excellent care in hospital but the rehab I received was phone calls asking if I was OK.I am now getting anxious as I would like the meds reviewed and have a phone appt with GP in March .

I did have hospital appointment in August with a clinical nurse specialist which was for me and my husband to discuss the emotional side of the drama.

My problem is that the hospital where I was treated is a different authority to my address and my NHS trust seems to need chasing.

I realise I am lucky as I have recovered well and with persistence you will too.

HomerJSimpson profile image
HomerJSimpson

Hi, I had my HA in May last year, the cardiac rehab referral was quite quick. On my discharge paperwork it said to have bloods and cardiology review after 3 months. I had my bloods done in August and my cardiology review is next month 🤷. I understand the problems with Covid etc but I would chase up the rehab with them as you want to start moving forward the correct way.

GFFF profile image
GFFF

Hi DawnNot sure if its due to the dreaded C or if its always like this but I am in the same boat.

Feel as if its an ongoing battle to get any support from either GP or cardio team

Thank goodness for the experts on here who guide us x

As many have said, chase up with either the hospital cardiac department or GP or both.

For me it was so important to ensure this part of the recovery process happened, not only for the physical recovery but also for the mental recovery aswell. (The access to ask questions galore and ultimately put my mind at rest)

My experience after my HA back in 2011 was fantastic with contact being made after about a month. After my OHS in 2020 I had to the chasing which was frustrating but in some ways understandable because of the impact of covid and somewhat disjointed follow-up appointments whether phone or F2F.

Once organised, the rehab team were great and fully supportive with my frustrations but also delayed recovery. If I'm honest I probably came out better in the long run as the team gave me much more time and personal support than my experience 9 years earlier.

Good luck.

Fynndog profile image
Fynndog

Hi dawnmarie78. My HA was sept 2020. As I told you no cardio rehab. No cardiologist. Two weeks ago I had a phone call from Cardiologist. He was very nice. Sent me a letter about our chat , the outcome is that I don’t seem to be showing any alarming symptoms so all appears to be well. ( that’s as maybe-I hope he’s right) I’d love to know how my health can be assessed by a phone call???

Dawnmarie78 profile image
Dawnmarie78 in reply to Fynndog

I feel exactly the same when it comes to telephone appointments, I just don't see how they can fully assess a person over the phone it makes no sense at all .

Jermhigh profile image
Jermhigh

You had a heart attack, sorry to hear are you OK?

Dawnmarie78 profile image
Dawnmarie78 in reply to Jermhigh

Hi, im doing alot better now thankyou , it was just such a shock . I think right up until the moment they confirmed it while doing the angiagram I was still convinced it was going to be something else . It's the after care I'm struggling with but I feel very lucky to have found this group of people you have all helped me endlessly.

Jermhigh profile image
Jermhigh in reply to Dawnmarie78

Am so glad you OK 🙏

Jermhigh profile image
Jermhigh

You had a heart attack, sorry to hear are you OK?

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