Feeling lost

[Didntaskforthis]

Hi guysI don't post often but I do check in for advice all the time. Here is my latest, hope I don't waffle too much.

I have had lupus, fibromyalgia, raynaud's and all the typical stuff that comes with lupus, for over 35 years. A few years (2 1/2) ago I felt that my heart was not right and long story short I was referred to a cardiologist who found a 50% blockage in one of my arteries. He put me on statins and referred me back to my GP.

Since then I have been asking my rheumatologist how will they know if it gets worse etc. He referred me back to cardiology but that appointment was cancelled. Then I got Angina and I just felt things were getting worse. Again I was referred to cardiology but no appointment.

I took it upon myself to lose weight, no easy task on steroids, and I started exercising but last week the unthinkable happened and I had a heart attack. I was given a stint, 2 days in hospital and then sent home. I have totally lost trust in the doctors, in my medication and in myself.

I am trying to do a bit more every day but without advice I don't have the confidence to do much.

Any advice would be greatly appreciated

[Tiggywoos]

I just wanted to say how awful for you 😟so sorry you had to go through it you must of been very frightened . Have you got any access to a cardiology nurse ? My dad had big heart attack and whilst he didn’t see cardiologist again he did have access to a nurse ?

It’s awful you have been left to own devices .. are you in the UK ? I’m sure you’re get some great replies xx

[Tiggywoos]

sorry she was a rehabilitation nurse linked to cardiology xx

[Didntaskforthis in reply to Tiggywoos]

Hi Tiggywoos. Thank you so much for your reply Yes I am in the UK. A cardio nurse came to see me when I was in hospital but they had given me morphine and I remember very little about it. I think she was going to refer me to rehab but I have no timescale and if it's anything like my other referrals, it might not happen.Just feeling quite negative and let down. Hoping to chivvy up sometime soon

[Tiggywoos in reply to Didntaskforthis]

I know it’s exhausting but please email Pals . They get back to you really quickly and you really need a rehab nurse to at least check in with you ..she should have got in contact the week you got home .

Totally understand feeling let down . Please tell a friend how you feel too as it’s horrible feeling like you do . Don’t feel under pressure to “jolly” up ! You’ve been through so much xx

ps : when I used pals I just kept it short . You simply need to say no one has contacted you after your heart attack and you feel very low . They have a duty to get back to you

[Didntaskforthis in reply to Tiggywoos]

Thank you, that really helps 😊

[Tiggywoos in reply to Didntaskforthis]

You’re so welcome wish I could give you a hug … I remember step dad felt very vunerable and low after heart attack .. it’s a very big deal xxxx

[Didntaskforthis in reply to Tiggywoos]

I feel like you have given me a hug. Thank you ❤️

[RosieA]

That is truely dreadful. You must still be in shock and no wonder you feel abandoned. Please don't give up though. Whilst you pursue your own hospital, I would contact the British Heart Foundation. Does your hospital have a cardiac ward/ day ward? I would contact them and ask them for guidance. They have nurses who will respond to any querry very quickly and will be able to give you some excellent guidance.

Your rheumatologist should be in close contact with the cardiologist as there is such an increased risk of cardiovascular disease with Lupus.

When you feel able do let us know how you get on. x

[Didntaskforthis in reply to RosieA]

Thank you Rosie A. My Rheumatologist has been in touch with me and arranged an appointment next week so I might get some answers.I knew there was an increased risk of CVD with lupus and long term steroid use but I thought it would be monitored, how naive am I!

[Tiggywoos in reply to Didntaskforthis]

You’re not naive at all .. . So pleased rheummy has made contact but if you can find the energy I’d still follow RosieA advice and make contact with BHF xx

[RosieA]

I am so pleased for you. The wildnerness that we can find ourselves in is extraordinarily lonely and at times, frightening. I am increasingly aware that we need to be proactive in our own care as the health system is so very stretched. I understand your worries - I saw my mother through a quadruple by pass and am fighting pericarditis with some increasingly irregular heart beats. Sadly, I am aware that the cardiac services in my area has an enormous waiting list. I think it is great if you are an emergency but too often we are put on hold until we become one, as in your case.

I hope all goes well for you and you get the support you so evidently need. x

[GLRocc]

Sorry you've had such a tough time. The British Heart Foundation website bhf.org.uk has all sorts of really useful information including a help/advice line and a phone call service with a specialist cariac nurse. Go to the website and click on the "What We Do" tab. Hope this helps

[Stitchrunner1]

I can't give you advise. All I can do is give encouragement. Under your circumstances it is normal to feel low and hopeless. Please don't beat yourself up . Be gentle with yourself. You have done some very positive things, such as losing weight. On steroids that it a massive achievement.

A heart attack is a big deal. You are going to feel under the weather. I am not sure if it is folk law or fact but it seems that heart attacks can come with a feeling of doom. It is part of the physiology apparently. One thing we always seem to do as humans is take a sledge hammer to ourselves if we are not up running and working. Other animals don't do that. They hide and rest for a while. From what you have said in the face of adversity you have quite a positive attitude normally. So it is there somewhere in you. Don't push yourself too much. Just very slowly pick up the things you can do.

As for losing confidence in doctors, unfortunately sometimes they can't always do more. They are up against a time clock and pressure. It absolutely does feel as though they have no time for us. When we are so poorly we just want and need to have that bit more support and it's bleak when we don't get it, It is harsh and will make you feel rejected. Illness is a lonely place., so please don't beat yourself up, be kind to yourself. Don't push yourself too hard. Rest and recover for now. Do the small amounts you can do and leave the rest to fate. Congratulate yourself for coming this far. I think you are fatigued. You need rest and self care for now. And it's ok to cry and to be angry but it also ok to say I am not well and it is ok to say I can't do this, so I won't. I hope you get better soon. Just get there being kind to yourself. All the best

[Geeforce99]

hi sorry to hear your suffering and going through this difficult time, I would advise you to pace yourself for chronic pain like me.

but only try doing green and amber tasks one day then one red task the next if not too affected then try one red task next day if things catch up with you feel free to just write that day off as total rest day if you can then begin doing only green and amber tasks, sense the effect it has on your body you know you best. I hope you can relax and do deep breathing box breathing techniques to help you. Take care of yourself 😀👍🏻🙏

[LalSD]

I am so sorry to read your note. Any involvement of heart, expecially heart changes the emotions. Let it be heart attack, stent, or open surgery. Most patients go through it. My daughter at a young age did the same. So please Don't give up asking for help. They send leaflets or give them but you need support after. Just ask again and again. It's awful and system is wrong. They spend more time writing notes then actually see us. I remember the days when my GP remember our name and diognose us without referral and I felt I could trust my doctor. Now, we are just a number and doctors fear being sued incase they miss a letter in alphabet, and there are serious mental health pressure on them, which results drug misuse, suicide and depression which leads to gambling, relationship family issues etc.. system is wrong. Please keep asking.