Round and round: Rant time. Feb 202... - British Heart Fou...

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Round and round

Stevie335 profile image
28 Replies

Rant time. Feb 2023 diagnosed with severe heart disease, sent for stents but couldnt get due to severity of blockages so urgent bypass booked. Called up in may to chase up and due to clerical error, referral wasnt made 🤬 long whinded apology with cardiologist and URGENT referral typed up whilst i was in his office. Great. As its been another 8 weeks since then ive chased up again to be told that again, no referral has been sent 🤬🤬🤬. Upon investigating the referral has been typed but not sent. Youd think that error number 1 would be enough to motivate cardiologist to do his job but no, seems like they enjoy the thought of me being scared that today might be my last. Nothing but negative bull with the NHS. Basic clerical errors on a serious health condition leads me to worry what could go wrong when i finally get the "urgent triple bypass surgery"

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Stevie335
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28 Replies
10gingercats profile image
10gingercats

It may sound a bit dramatic but can you go and collect the letter when it has been typed?I have been to our local hospita on several occasions to chase,request appointments are provided sooner than at first 'promised',asked why e mails have gone unaswered etc,etc. Sometimes it is a case of ask and you MAY get. Nothing to lose.

VelvetSky profile image
VelvetSky in reply to10gingercats

Make a complaint to PALS, kick up a fuss, the more noise you make the more they take notice of you, it’s your life.

DWizza profile image
DWizza

Hi Stevie, that’s a proper admin sh1t show. I have been home since Sunday post unplanned quadruple bypass.. went in with “trapped” wind on the 13th July, op cancelled twice , eventually had procedure on 25th July. During that time I met quite a few ward mates that had also been caught up in a claggy referral system . Quite shocking. If you have any symptoms of a heart attack call 999, so bloody glad my Mrs insisted and the ambulance crew further insisted on taking me in for the blood tests.

I was treated as a walking time bomb by my local hospital, was transferred to St Tommys the next day and waited up there.

You sound like you’re in a very similar situation, any hint of the signs of heart attack just call an ambulance. The admin errors don’t reflect surgical skills but it does erode faith in the overall system.

I would be on the phone every day to your cardiologists secretary , I’d make them my best buddy and endure they were aware of the serious admin cock ups and can take matters up?

Which area are you in ? Have you written to your MP to highlight these issues with your trust ?

I hope you get seen to asap .

Stevie335 profile image
Stevie335 in reply toDWizza

Hi, im in the midlands. Firstly how did the procedure go ? Im worried about the state ill be in upon waking and the days leading up to being discharged. Ive raised a second complaint but popped in to see my GP yesterday who was appalled and sent me a referral to see a new cardiologist at Wolvergampton hospital, where my bypass referral was sent (but not sent) Apparently my current Cardiologist administration team is to blame for the errors. A lot of pain and discomfort down the left side today, hoping ifs from sleeping position but any new developments and Ill go straight to A&E

DWizza profile image
DWizza in reply toStevie335

Hi Stevie, I’m 61 and was fit as , been weight training last 5 years, plus yoga class twice a week, and manual work round our small holding.. the medical team were really confident, almost blasé about the procedure . These days open heart surgery is considered a very straightforward procedure compared to 30-40 years ago.. I didn’t share their confidence as it was my first time to be spatchcocked LoL… fortunately, I had no heart damage and it was viewed as putting some new pipes in , a bit of sewing, the hardest working would be the anaesthetist ..

Prep for op included shaving arms , legs chest, where they harvest donor arteries and make cuts. 2 showers in anti bac soap the day before. Nil by mouth from midnight, move towards theatre for morning op circa 07:30. Very cold room, nice hot blanket provided, chat with team, surgeon & anaesthetist all lovely then ….

Start to come round in an in a sci-fi space ship scene.. machines gently pinging or bonging..mobile beds clicking into position , slow moving aliens (medical team) prodding , taking bloods and obs .. totally off your tits on Fentanyl.. that’s Intensive Care Unit.. spent the afternoon/night in there and got moved to High Dependency Unit next morning after I could get out of bed and sit in a chair .. still off my tits on fentanyl.. don’t recall phoning my daughter 🤦🏼.. gradually start coming round and you know you’ve been hit by a bus. Chest is sore , legs & arms swollen from large cuts to harvest arteries . You’ll find that your lungs fill up with phlegm post op and you have to cough it up , brutal having had breast bone cut. You get given s rolled up towel to press on your chest to help.

Was moved onto coronary ward a day after.. taken off the fentanyl and you are encouraged to move, walk to toilet etc .. was discharged 5 days post op, I’d never have believed it. You’ll feel sore , you get paracetamol for pain. Sleep is the main thing I craved , not drug induced or disturbed napping in a hospital scenario, deep rejuvenating sleep.. had a couple of nightmares , totally normal apparently.. physical healing is one thing , there is a mental side to it as well. I was fortunate to have to process things prior to procedure . I’ve been given another opportunity, a rebirth .. I am very lucky . Had my bloods taken this morning at my villag GP surgery and the nurse told me that 12 years ago her husband had a heart attack and didn’t make it through … choking.

You’ll be fine Stevie, it’s bloody tough , you’ll be sore , you might have to deal with some internal demons and anger at the system but you’ll be on the road to recovery ❤️‍🩹. Keep us posted and don’t hesitate to ask anything.

Wizza

Stevie335 profile image
Stevie335 in reply toDWizza

Thanks Wizza

Kind of reassuring about being out of it for the first 24 hours or so. Wasnt looking forward to the breathing pipe upon waking or tube up the old fella 🤣🤣 I suppose I can tolerate the pain in view of the improved quality of life. I hope your recovery continues to go well. Im 44 but feel 70 most days but prior to this like you, gym 5 times a week, average weight 12 stone 9 and otherwise fit, apart from the main cog in the machine that is 🤣

Jem64 profile image
Jem64 in reply toStevie335

Oh wow you are almost the same age as my Daughter...You will make a good recovery and feel better for it....I'm 64 and have been blessed with perfect health prior to this...I'm afraid of the pain and discomfort obviously but I'm afraid this will define the remainder of my life ...I've always been independent..

Stevie335 profile image
Stevie335 in reply toJem64

Same feeling here, am i going to be monitoring every twinge? etc. That being said I guess ive just gotta play the hand I was dealt and hope for the best.

Jem64 profile image
Jem64 in reply toStevie335

I've got the same percentage of blockages Stevie..diagnosed in April...apart from being tired even doing small tasks now I feel OK on the meds...which I'm told I will need after too...As I say being an ex Nurse I think makes me a bigger wuss!..

Stevie335 profile image
Stevie335 in reply toJem64

Nothing wrong with being fearful, ive spent many nights searching for the right words to hear, trying all the 'reverse heart disease' diets. Ive lost 3 stone since my diagnosis, walk a lot more and until the nurse told me to stop, jogged regularly also. If there is even a slight chance to manage this condition with lifestyle and medication I will take it but im finally coming to terms that i need the op. If I am told otherwise ill take it. Going to bed was the worse part for a while because you 'notice' the slight sensations in your chest more. Magnesium supplement an hour or so before bed and I now sleep like a baby. Its a scary time and im still trying everything to avoid this op.

Jem64 profile image
Jem64 in reply toDWizza

Well done....I'm currently on a waiting list for a triple bypass...my arteries are severely blocked apparently...I'm not sure I have the reserves of strength required to launch myself into a world of pain. At the moment I am taking the meds and feel OK mostly...I'm an ex nurse and teacher so I know what to expect...but don't want it..

DWizza profile image
DWizza in reply toJem64

Hey Jem, time to accept the situation… it’s a rollercoaster ride for sure , not my cup of tea .. but I just had to accept that the ride had to start. You’ll not know much about it until the ride stops. Wishing you all the best

Jem64 profile image
Jem64 in reply toDWizza

Thank you...you too..

ChoochSiesta profile image
ChoochSiesta in reply toDWizza

Yep, It felt like waking up in the Star Trek ship.

Plum53 profile image
Plum53

Hi that is so bad not once but twice referral not done and on something so important. These days with the NHS you need to chase chase chase. I have had to do this after being told by consultant he would do referral himself then phoning hospital to find he did referral but hadn’t been picked up and typed. Lucky the lady I spoke to said she would get that done right away and sent to correct department. This she did . I then check with said department to check they received referral and that I’m now on the waiting list. Unfortunately you can’t leave things now but follow up all the time. Hope you are soon sorted and on the road to recovery.

Larneybuds profile image
Larneybuds

Good morning....as velvet sky has suggested.....try PALS.....they are usually very efficient and get things chased up or actioned. Sorry to hear you are having these problems. It's worrying at the present time with all the delays in the NHS and this varies so much in different areas but be persistent and insistent. As I have suggested to someone else this morning.....don't ever worry about being a pest. It's not your job to keep on at them but it seems that is is getting to be the norm of late this have to do this . I really hope this all gets resolved soon for you but it would definitely give PALS a call if you haven't already done so. Cheers x

Stevie335 profile image
Stevie335

Thanks everyone. I just assumed that because of previous clerical errors, they would be on the ball from then on, apparently not. Hopefully after speaking to my GP yesterday itll get sorted soon, ive been referred to a new cardiology team at the hospital where the bypass will be performed so hopefully less admin errors. Sorry for my rant im usually so laid back im horizontal but 7 months since they diagnosed 90% blockages and im no further advanced in my treatment plan because someone hasnt clicked the send button, three times

Larneybuds profile image
Larneybuds

I wouldn't say it was a rant....more an explanation given out of frustration. I am extremely laid back about most things but have been so frustrated about how long things take now to be attended to or actioned. Fingers crossed the new cardiology team are more on the ball. Good luck x

Stevie335 profile image
Stevie335 in reply toLarneybuds

Ive learned that whats vital to us is 'no biggie' to Doctors/consultants, were just time slots to be filled. Thanks for the kind words xx

Oldknees profile image
Oldknees

Don’t want to spoil your rant but surely if your case was urgent they would have kept you in hospital as they did with me.They kept me in to monitor me until it was my time for my quintuple bypass.Sorry you’ve got to wait but try to think positive.Good luck

Stevie335 profile image
Stevie335 in reply toOldknees

I know I should count myself lucky that I havent actually had a heart attack. Cardiologist told me that they could possibly stent, up to double figures would be needed but then if the stents failed, bypass wouldnt be an option because of having nowhere to graft to, and because a lot of my blockages were branch blockages. Im lucky that my overall quality of life is good considering but this doesnt give me treatment to something that was diagnosed almost 7 months ago. To me, its urgent, I try and remain positive but that light at the end of the tunnel keeps getting further away.

Jem64 profile image
Jem64

I hear you..I'm the same apparently I've had several strokes ..last one was November with just some loss of sensation in left hand..but no heart attack..yet.Stents aren't an option for the same reasons as you. Also my Dad had them but subsequently had further issues.

Hope you get sorted soon...

Stevie335 profile image
Stevie335 in reply toJem64

Sorry jem my reply seems to have disappeared, I worry about strokes and i sometimes get neck, left arm and oddly left calf numbness/pain but never a reason why. How did they know you had suffered strokes if you dont mind me asking ? Im just usually discharged with an increase in meds even though uve asked to get my carotid arteries checked

Jem64 profile image
Jem64 in reply toStevie335

Hi..I was referred to the stroke clinic and had an MRI which showed evidence of the strokes. I've never smoked never drank much and don't at all now. Been active and worked all my life until April...I'd prefer to continue "managing" this with meds. I think the stress of a major op will bring on another stroke..

Stevie335 profile image
Stevie335 in reply toJem64

Research supplements to help, i.e vitamin c (high dosage) linus pauling and look at the story of fred pauser, he has a facebook page called natural treatments for coronary atherosclerosis.

DWizza profile image
DWizza in reply toStevie335

Do you need a reason why Stevie? You’ve got multiple blockages , if I’d had those symptoms knowing what I know now I’d be calling 999. I asked what would’ve happened if I hadn’t have gone in for the blood tests, one of my surgeons said I could be working on the farm on my own and have a heart attack, another silent death. Doesn’t bare thinking about . Any symptoms mate, call an ambulance, you are heart attack waiting to happen. No one will criticise you under the circumstances.

Stevie335 profile image
Stevie335 in reply toDWizza

I know, thank you. Im fortunate enough that it hasnt happened yet, ive been to A&E with symptoms many times and by the time all tests have been complete, I feel fine and like im taking up important bed space, then I listen to people turning up in A&E with things like chicken pox being sore, or a bloody wasp sting 😬 which makes me feel less bad. My biggest problem is the brain needs to realise my disease, Ive got a young family and try to be as active and normal as possible but when the fatigue hits, or the dizziness I feel so frustrated. Having this conversation has jelped massively mate, I can promise that any further symptoms and I will phone an ambulance, stop putting chest pains down to indegestion or 'getting old' Thank you for your wise words

Jem64 profile image
Jem64

I also had the carotid scan which wasn't pleasant...They press quite hard and I nearly fainted after..I felt seasick😱

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