Is knowledge power? Would welcome your calming thoughts...

[Sususulio]

A longish tale but in summary I was admitted to hospital October last year after a spell of breathlessness diagnosed as a chest infection was found to be CAD and initial angiogram showed 99% blockage to LAD, no heart attack but cardiologist also said there were a couple of fuzzy areas he would ask the team doing the stent to explore through a pressure wire test. The exploratory angiogram was on the Friday and early on the Tuesday I had stent at a different hospital and they did the pressure wire test but did not talk to me at any stage during or after... No criticism but it felt like a production line, held in waiting area for 6 hours and discharged home.

Care was discharged to local cardiac rehab team and my GP. Initially I felt physically better but really traumatised and know that’s common to any of us, but felt that I needed to know the extent of their findings ‘fuzzy’ wasn’t a comfort.

I asked cardiac rehab team repeatedly for the full detail of my tests and they arranged an appointment with cardiologist at my original local hospital - this took place yesterday. The outcome of which was that in addition to the blockage my file had an annotation ‘evidence of disease right coronary artery’ but nothing else in the file..... no write up of what had happened. Cardiologist has suggested that he will ask for original films to be re-evaluated and will also try and chase up the pressure wire test but between times I have to presume that whilst there was something it wasn’t sufficient to warrant further intervention.

I know the treatment plan would be the same I take the full carrier bag of meds, but I had so much expectation of having the full picture and trying to draw a line under my mounting anxiety - what I don’t know - I imagine and it will be weeks before detail will be known. I know you guys will know the feeling - but I was so upset last night almost like it had just happened all over again.

Peel me off the ceiling please with your wise words and encouragement - I’m not coping with the stress of it all, wasn't sleeping well anyway and I’m off work as Occupational Health don’t consider me fit for work. I cried all the way through my appointment with them. So tomorrow I have to go to GP and ask for another fit note but from a cardiac view I’m fixed so I guess anxiety will be the only option moving forward....

I know the demand on staff and it isn’t a criticism but 10 minutes of cardiologist time at the beginning talking me through the outcome would have made such a difference. I just feel so vulnerable all over again

I should add I have been seeing a psychologist and she encouraged me to deal with the facts but that search goes on - is it worth the effort and energy?

[Sususulio]

Thank you that’s exactly how I feel and have held on for what I hoped would be some kind of closure or perspective. What has happened in the interim hasn’t saved any time I feel like I’m trapped in some kind of clinical pin ball machine - thanks x

[Zena166]

Hi Susie. Sorry to hear about your stress and not finding out more. The whole experience has been traumatic for you and as you say what we don’t know we imagine. You mention seeing a psychologist. I wonder if seeing a counsellor would also be beneficial. After my heart attack I saw both. The psychologist helped with coping strategies but the counselling helped me with my raw emotions (and they were very raw!). So I was able to release my anxiety and stress by sobbing in a safe environment (if that makes sense?). Both helped enormously.

Why not chase up the cardiologist appointment as Gunsmoke has suggested and maybe also book another time with your GP. You are right when you say that had it been anything major something would have been done at the time. I know that doesn’t help but it’s maybe something to hold onto until other information comes to light. Maybe talk to your rehab team to see what else you can do. Do take care. Stay strong sending positive thoughts and hugs. Zena x

[Chickenleg]

Totally understand where you are coming from as I am in the same boat as you ... I know nothing apart from I had a stent fitted due to having a blood clot ! Still trying to get answers still don't know what caused the clot was it cholesterol high blood pressure diet smoking or all of the above . I also have a furry artery so does that mean I'm heading for another heart attack ? We need to know these things ! I'd say keep asking till you get answers that's what I'm planning on doing. Hope you get your answers soon

[Hidden]

Same as everybody here. After my failed stent in theatre where I was awake and viewed the process on big screen on my left as I lay there. When over, it was as if everyone just melted into the floor where I was left in a recovery room where I was detained for about ten minutes, believing the specialist would return and tell me the outcome - but no, away I went back to the ward. I had a total knowledge black spot about all this and thought failure to do a stent, meant I was going back to bed to die! With much insistence I was eventually told I had chronic heart disease with almost total blockage. I really don't know what was worse - total ignorance or fully informed! However five days later a triple heart bypass and now well.

As said, the best attack is to the specialist and the secretary that deals with them. Keep insisting until you get an answer and tell them your disappointment about being treated as a mushroom. One thing is sure, they would not have released you if things were bad, since they have a duty of care for your well being which is almost never broken until you have your final appointment with the cardiologist and released from their care.

[jimmyq]

First of all, stop worrying. It never solved anything. Look at it this way: it has been caught before it became too serious.

There is loads of information on the BHF website, including downloadable leaflets, etc. Get some of these and read them. Avoid Google, except for reputable websites like the NHS, BHF and similar. We are here to help you both through it.