Waiting forever after complications with an Angiogram

[Rico166]

Hi all,

New here. Had a heart attack in early July last year and had no idea that I had suffered one - no chest pain, just dizziness, nausea and pain in my arms and back more akin to muscle aches after exercise (I also thought I had some sort of gastric reflux and swigged a load of Gavescon). Anyway, I felt a bit dodgy for a few days, but then started to feel more normal. Went for a swim in the sea and had to get out after 5 minutes as totally short of breath and feeling very unwell indeed. My parter made me go to the doctor the following Monday. Although, the GP I saw tried to brush me off, I insisted that the way I was feeling was not at all normal - utterly tired and exhausted all the time and unable to do my usual exercise, etc. I was reluctantly referred for an ECG and blood tests and the following day I went away on holiday. On my return, I received the results - raised cholesterol and what the GP said was a slightly enlarged right ventricle, was immediately put on a statin and told that I should push myself even if feeling tired and fatigued and not rest, I wasn't convinced, so took gentle exercise, but nothing anywhere near my normal routines.

A week or so later, I got another call telling me that the Cardiology department disagreed with the GP and in their opinion I had suffered myocardial infarction and that I should be seen by the cardio dept urgently. Whilst waiting for the appointment, I had what I now know to be angina attacks of varying severity but with no medication or any advice on how to deal with these. I finally saw a specialist in outpatients 6 weeks after the first incident who ran another ECG and I was then told I had definitely had a heart attack, that I needed to be prescribed beta-blockers, GTN spray and Nicorandil on top of the statins and that I should have an angiogram in the next 14 days. Then nothing, no contact, no appointment, no nothing, finally my new GP (I decided, I did not want to continue seeing the one who had brushed me off), got through to someone and insisted I be seen ASAP. I finally got my angiogram appointment through for early September.

During the procedure, my heart went into atrial fibrillation and stopped beating - they brought me back with the defibrillator, finished the job and told me that my right artery was totally blocked and that they couldn't do anything there and then and I would have to come back as a matter of urgency for another attempt and for stents to be fitted. (This was after being kept in for observation overnight.) Then silence ensued, nothing at all, no advice, no contact, no nothing and me feeling really unwell, stressed and increasingly depressed. I chased and chased to no avail. Finally, after my GP getting somewhat stroppy with the hospital, I got another appointment for an angiogram in late October. After 2 hours on the table, they aborted the procedure after going in via both my wrist and groin saying they couldn't stent it due to there being 'crud' behind the blockage (?). I was told that there is only one person in the service locally who can attempt to stent my type of blockage and that is the last I heard. No follow-up, no letter or report saying what happened - my GP is as in the dark as I am. I've tried to get some info from hospital but I just get swatted away.

I went through a period of very serious and debilitating depression and anxiety, feeling suicidal and fatalistic and largely shut down emotionally, however after having taken a deep breath and giving myself a talking to, I decided to share how I was feeling with my partner and GP and since then, my mood has lifted - the very act of sharing made everything come back into perspective. However, I am sitting here, writing this 3.5 months later with no idea when I might be treated. I don't know what I can do in terms of exercise (I find even everyday tasks such as food shopping or walking into town exhausting and leave me breathless with the neck, arm and back pains and occasional nausea hitting me, so I avoid a lot and am putting on weight). So, I just don't know what to do! Endless calls that go round and round in circles with the hospital are totally demoralising and get me nowhere, I have no info on how to keep myself fit, no info on when I might be seen, no info on the various possible outcomes or potential treatment when this seemingly mythical expert will be able to treat me and I am standing on the threshold of a very busy period of work, worried that I am physically unable to cope.

Has anyone else experienced this and does anyone have any advice on how to unblock this bureaucratic nightmare? I feel very much beaten down by the system and I have to force myself to make the calls that I fear will go nowhere, all coupled with the sensation that I am getting less and less fit. I really do not know what to do for the best!

Sorry for such a long post and thank you to anyone who makes it through to the end!

I am now going to finish here and make another attempt at chasing the hospital.

Thanks in advance.

[lettingoffsteam]

Wow, Rico, what an ordeal! It is very easy to get stuck in the system with the NHS.I found PALS very good when two cardiology tests were apparently lost to the system.Could you afford a private consultation with the person recommended to treat you? Never done this myself but I think you can then get treated on the NHS.I really hope you get some answers today.

[Rico166 in reply to lettingoffsteam]

Thanks - yes, it has been a bit of a journey, to say the least! I may well look into seeing someone privately, not sure if I can afford it, but no harm in finding out how much it might cost. Got a little further on the phone today - well, at least an admittance that nothing at all has been done to follow up my notes from October! Will keep nagging, I guess and explore other options.

[Calliope153 in reply to Rico166]

I had an hour with the consultant last January - £250 - worth it to be able to discuss the way ahead. Good luck - I chased for six months to get an echocardiogram after it was deemed essential.....

[Rico166 in reply to Calliope153]

Thanks for that info - I think I could stretch to something like that, if necessary. All the best

[lettingoffsteam in reply to Rico166]

Really terrible how they are keeping you waiting.I hope you hear something positive soon.

[Rico166]

Thanks - and yes, I have complete trust in what the clinical staff are trying to hold together and know that at this time of year especially the service gets over run with emergencies. I have a tendency to be a bit too patient, so I know I need to make a nuisance of myself. Thanks for the tip about contacting PALS, I'll give that a go if I don't make any progress this week.

[Gowers]

I don't know which area you live in but, I can't imagine how difficult it must be waiting & getting no follow-up appointments/advice. if possible ask your gp for name of cardiologist in your area who he/she would want to treat them if they or member of their family were in your position. My 1st consultation was private (£180) & lasted over half an hour, further appointments were about £100. But, I was then put on his nhs list & seen in just over a month. followup's have been amazing. Eg - ablation on a Tuesday letter explaining what was/wasn't done in the post 4 days later. (nhs) do let us know how you get on.

[Rico166]

That sounds great! And thanks. The Cardiologist who holds the key to it all is very well regarded, but like most experts, is very difficult to see. I’ve found details of his private clinics, so am going to try and get to see him that way - I imagine it will help hurry things along!

So glad I posted here, you’ve all made me feel much better about it all

[stillaboveground]

Hi Rico166, It sounds like you have been brushed off quite a bit. I had a heart attack in May of 2019 while on Holiday. I too have had seen different doctors and had an angiogram, various scans, stress echo, etc, I kept getting conflicting results and at one stage was left without any medication for nine weeks. Today I found out 38 weeks after my heart attack, I have no lasting major problems and just need to keep on the medication, so good news for me. I hope you get to see your specialist soon and things get sorted out once and for all. Keep nagging them it's your life they are messing with. Good luck to you, keep on this forum the people are great and if they can't offer help they will be here to support you. Take care.

[Rico166]

Thank you! Very reassuring

[Hidden]

You have been given some great advice by other members, I hope things get sorted out quickly.

[Rico166]

Mini update for you. I discovered that the cardiologist who appears to hold the key to further treatment pathways holds a private clinic just minutes from my front door and I am going to book an appointment. Spoke to my GP about this plan of action and she very much approves, so with any luck, I should have some progress to report on before too long.

[Gowers in reply to Rico166]

Pleased to hear you have app booked would suggest (based on experience!) that you obtain & take with you any passed results - blood tests, ecg, hospital & gp letters etc. Private consultants are not always able to look up or see nhs results as the computer systems are not always linked. My gp did a copy of my notes going back many months & current meds. Also, make a list if any questions & concerns. It's easy to think you know what you will ask but easy to forget until you are on your way home. + getting copy of results can take a while but well worth getting them as you can present it all at the appointment rather than have to wait for the "notes" to come through after your appointment.

[Rico166]

great tips! Thank you.

[Rico166]

Hi all - well I saw the cardiologist in his private clinic just over a week ago. Although he said that he was unable to access the waiting list as in the past, he was able to reassure me that I was on there and who I needed to speak to to find out what was happening. I now have a date at the end of April for another attempt at angioplasty to fit stents. So, feeling quite good about things now and fingers crossed, I will be able to put this all largely behind me as we head into summer