Anxiously waiting for appt: Hello I am... - British Heart Fou...

British Heart Foundation

49,231 members31,169 posts

Anxiously waiting for appt

Weeps24 profile image
49 Replies

Hello

I am just writing here to get my fear out if that's OK. I have written on here before but just feeling so scared. I won't go into everything again but basically we have been told that my partner has severe/moderate systolic ef with abnormal wall motion. In the opinion of private consultant it is likely to be caused by coronary artery disease. We are waiting to see nhs cardiology. I just feel I am not coping well and am so anxious as to what will happen. He seems fine and not to worried. He does have copd and high cholesterol. I have read a lot of your stories on here and have had some lovely replies. Sorry for rambling I just needed to get my feelings out as my friends just tell me to stop worrying and I have no other family. Thank you x

Written by
Weeps24 profile image
Weeps24
To view profiles and participate in discussions please or .
49 Replies
David618 profile image
David618

Morning WeepsIt’s natural to be worried and get anxious, it’s a very scary situation.

I had a heart attack back in June, she has no other family and was very scared about losing me and being on her own...

You just have to trust in the medical professionals follow the guidance and look after each other, because it is affecting you too.

Try to be strong and do what you can.

Weeps24 profile image
Weeps24 in reply to David618

Thank you ❤️. I get up early every day and just sit here worrying 🙄. We have been waiting for an appt for 6 months, finally got one for today and then was cancelled as doc was ill. I hope you are doing well and can relate to your wife's feelings about being alone 💖

David618 profile image
David618 in reply to Weeps24

Hi WeepsThat’s not great to get an appointment and then have it cancelled. To look at the positive side, you must be at the top of their list and will get another appointment soon.

I will keep my fingers crossed, in the meantime stay positive

Clerkenweller profile image
Clerkenweller

Being unable to discuss understandable concerns will magnify your anxiety. You need to talk. Don’t think you are silly and don’t be closed down by others. If you have any real friends they will listen. It is also worthwhile exploring areas of self help and mindfulness. Looking at your diet (caffeine intake?) and exercising to help sleep is also good. Long walks! If none of that fits then vent here. And by the way if you read other people’s experiences you will find that the majority of us live long, active and happy lives.

Weeps24 profile image
Weeps24 in reply to Clerkenweller

Thank youYes I have been reading other people's experiences and find them amazing and inspiring, also helpful. I just struggle with worry and not being able to shake it from my mind,it seems all I can think about. It is the fear of the unknown I suppose and maybe thinking that now I am going to worry about him constantly. I do sound dramatic considering we have not even been to the hosp yet 😯. We were told in April that an impairment had been found and to be honest I did not worry about it really all summer. About a month ago I thought maybe I should chase it up, there were no signs of an nhs appt so we went privately to get the results and since then I have just gone into panic mode!!! So sorry for long story and thank you once again x

Leonardo1 profile image
Leonardo1

Morning weeps , I’m waiting for monday when I go in for angioplasty- the start of my heart recovery journey . I’m scared but trying to be perky . My family are really scared I know they are - and that gives me hope and fear. Hope because I know how much I’m loved and fear because I’m not ready to leave them yet ! I’ve got to have valve replacement surgery too so my journey is just starting - but my dear friend ( retired nurse ) keeps repeating one step at a time !!!

Try not to panic the appointments do come the fear you will be forever waiting is normal - you are scared because you care - what a lucky man he is to have you - but talk !! My husband doesn’t really want to hear bad stuff he just says “when your well again” . But I drag the conversation back - I’m not a super hero I might stumble it will not be quick - but together we are stronger ! Above all Be honest tell him your fears it show how very much you care and that will give him hope and energy to get through this . With you by his side his journey is brighter . Stay super strong one step at a time and take a look at the pic posted today of the the guy 100 days post op and he’s climbed his mountain !!

We are all climbing mountains - and view is spectacular!! Much love

Weeps24 profile image
Weeps24 in reply to Leonardo1

Thank you so much. I wish you well for Monday you sound so level headed with a great attitude ♥️. I really don't want to show just how worried I am to my partner as he is playing the whole thing down. I think I am his biggest worry 😅. We have been through a lot together caring for my mum for years after a huge stroke. This has brought back all the same feelings of fear etc and living nervously. At the moment I just can't seem to shake these feelings off. Thank you for taking time for me x x x

MountainGoat52 profile image
MountainGoat52

With the benefit of hindsight I can now see how traumatic my HA was for my wife and how much anxiety it caused her. At the time, even though I was the one in the middle of the action, I was far more relaxed than her and our two grown up children. For me it was a bit like a dream... was this happening to me?

I think that it was only when I elected to have a bypass the following year that I truly realised what me not being around would mean to the family. It really struck home when I got myself onto the operating table. I don't know how they got through it, so I sympathise completely with your situation.

I would say that the cardiac teams in the NHS are fantastic people. I am sure that they will direct your partner in the right direction. Do try to discuss what they say between yourselves. I had the full support of my wife in agreeing to have surgery and we were of one accord. Even so, I truly believe that it was easier for me than for her.

With my best wishes to you both,

Gerald

Weeps24 profile image
Weeps24 in reply to MountainGoat52

Thank you so much for your wise words. I hope that you are doing well now 👍. It is such an awful time waiting and then bring afraid of what the doctors are going to say!!! I am quite anxious anyway after looking after my parents for so long and worrying about them, this had brought back the same feelings of worry. My mum had a massive stroke when my dad had dementia. My partner and I cared for her at home, doing everything for her. Although this is not the same the worry and anxiety feels the same. Thank you again best wishes to you and your family x

MountainGoat52 profile image
MountainGoat52 in reply to Weeps24

Many thanks for the reply. I'm very sorry to hear of the situation that you have had to deal with. I am sure that your partner is very much aware of what you have gone through and doesn't want to burden you further. Nevertheless, do discuss what the cardiologist says so you are together in what is decided.

As for me, yes the op was very worthwhile. I'm now climbing 3000 foot hills in Scotland!!!

😀

Chickenlou profile image
Chickenlou

Hi again Weeps24

Sorry to hear your struggling.

Hope you don’t take offence but have you considered going to see the GP as I was put on anti anxiety meds when my fiancé was first diagnosed as I really struggled.

Please look after yourself (your health is important too.)

I know I’ve mentioned it before but I really do understand how you feel, I was worried 24/7 about my fiancé, whilst he was strangely calm.

As time went on (he had around a year from first symptoms until his bypass) i began to realise there was only so much I could actually do and to some extent whatever was going to happen was out of our control at that stage and the worrying wasn’t doing me or him any good (As he began worrying about me!)

Take care of yourself xx

Weeps24 profile image
Weeps24 in reply to Chickenlou

Thank you again yes it has crossed my mind to speak to my gp, did you find medication helped. You are right it is all out of our control to some extent. It is just the thought of constantly feeling this worried is scarey. We have an appt now next week but the thought of that is worrying me aswell (I need to get a grip). How are you and your fiance doing now? I hope things have improved 🙏❤️❤️

Chickenlou profile image
Chickenlou in reply to Weeps24

Medication definitely helped me ( I was already on antidepressants before he got ill, as I have a long-standing mental health condition.) but the doctor gave me beta blockers (ironically as my heart is fine!) and they really helped when I felt extra panicked, they stopped the physical feelings of anxiety/panic.

Please see your doctor it can’t hurt, mine offered to sign me off work for a couple of weeks as it was obvious I wasn’t coping too well (I didn’t take this offer as felt I needed to keep to my routine, but shows they took the situation seriously.)

Really glad you’ve got an appointment now, at least he will hopefully get a diagnosis and a plan of what will happen next, I found that helped a bit as we knew what we were facing then.

My fiancé is still not great, although he made an amazing recovery from the bypass and has had no angina, he’s had problems with AFib/heart rhythm issues and has just been referred back to cardiologist and vascular surgeons and looks like he has an issue with the artery in his legs now. (Please don’t worry about this as he’s been unlucky and this sort of thing doesn’t happen to everyone.) But even with these additional problems he’s still much better then he was before the bypass. I still worry but it’s at a more acceptable/reasonable level now i think.

xx

Weeps24 profile image
Weeps24 in reply to Chickenlou

Glad to hear that you are both doing well ❤️. Appointment is now Monday and as much as I want to know more I am scared to go 😱. Not sure why nhs have classed it as routine as it all sounds really bad listening to gp and private cardiologist 😱. I do not work as got made redundant after 35 years a few years ago. I just feel that after looking after my mum and dad for so long life has changed again. Sorry for moaning as I know people have worse things to contend with 💙. Thank you it's great to hear from you x x x

Chickenlou profile image
Chickenlou in reply to Weeps24

Good luck for Monday.

My fiancé was also classed as routine - can’t remember his exact results but he had over 85% blockage in two main arteries and a 70% plus blockage in a third. His calcium/atherosclerosis score was also in the top 5% for his age (not something you want to be top of the class with!)

But even with all that his heart was working “well” and he had no damage to the heart muscle etc, so it wasn’t “urgent.”

I believe “urgent” is for those who have had a heart attack and need the surgery now, or who they believe are imminently in danger (although I know this doesn’t it make you feel any better.)

Not sure if you use Facebook but I’m a member of a group called “Caregivers for OHS patients support group”....it’s a great group for those supporting those who need or have had heart surgery. Might be worth a look? xx

Weeps24 profile image
Weeps24 in reply to Chickenlou

Thank you again ♥️. Not been a good few days, I am watching Mick constantly what he does, what he eats etc. He said I am making things worse by looking so miserable and worried 😔. He is prob right but I just can't help it and pretend it's not happening. The thought of going to appt on Monday makes me feel sick 😱😱. I can't see there being any good news. Thanks for tip about fb caregivers page, I have looked but think it is for when people have had operations. I have joined the pumping marvellous fb though 🙏. Sorry if I am being a nuisance. Just wondered if your fiance had a low ef fraction. Thank you again it means a lot x x x

Chickenlou profile image
Chickenlou in reply to Weeps24

Sorry only just seen your reply. I watched my fiancé like a hawk too - and I know it annoyed him so I tried to stop!

I’m sure there’s others on the Facebook group who haven’t had surgery yet, but glad you e found another group.

I actually don’t know about the EF fraction - can’t remember that one from the tests. Is that the same as artery refill rate as I know his results on that are bad.

Good luck for tomorrow, at least you will know more xx

Weeps24 profile image
Weeps24 in reply to Chickenlou

Thank youYes I need to try and stop watching for everything it is starting to annoy him 😅. It could be the same as the artery refill test 🤔, it is how much blood the left ventricle pushes out. Appointment is tomorrow and as much as I want to know more I don't at the same time. I am absolutely dreading it 😕. How is life with your fiance now, are you able to relax a bit now? Thanks for keeping in touch ♥️♥️

Chickenlou profile image
Chickenlou

Hope the appointment was “ok” today and you at least have a bit more information now.

Life is still a bit stressful to be honest, he made a good recovery from the bypass but has had heart rhythm issues (AFib) and has also been referred to vascular surgeons as there is a problem with the artery in his leg/legs. His GP referred him back to the cardiologist last week too.

However I’m not as anxious as I once was, I think now it’s become the norm for us and I have slowly accepted that this is now “our life” at least for the foreseeable future so we try to make the best of it xx

Weeps24 profile image
Weeps24

HiAppointment was OK, getting referred for angiogram to see what blockages there are. Prescribed entresto and another tablet beginning with f 🤔. I feel slightly better but still scared!!

I am sorry that your fiance is still having issues 😔, I can well imagine that it has now become the norm. I think that this will be for us also once I get my head around it all. Glad that the anxiety has subsided slightly as it is a horrible feeling anxiety 😕. I don't know how I coped today and that was just an initial appt 🙄🙄. Please let me know how things go and I will do the same 🙏🙏. Sending love x ❤️

Chickenlou profile image
Chickenlou

Hi 😊Glad the appointments over and you at least have the next step in the plan.

My fiancé had an angiogram and was fine, we went in at 8.00am and were home by 16.00 with no bleeding or complications at all (although just to warn you they do sometimes keep the patient in overnight to monitor them.)

He was meant to have stents fitted at same time, but that unfortunately wasn’t an option.

Did they give you any idea of timeframe until the angiogram? I’m guessing possibly not.

Yes definitely keep in touch and try to relax and take a little time for yourself - I took up crochet (very good for mindfulness and to occupy your brain a little) and having a nice long soak in the bath became my favourite pastime! xx

Weeps24 profile image
Weeps24 in reply to Chickenlou

Thank youI think he said angiogram could be around 6 weeks wait. To be honest it was a bit of a whirlwind and a lot of info to take in about medication etc, which I have not grasped so will need to ring around today and find out about the medication!! Still feel in a state of high alert ⚠️ worrying now what the angiogram will show and do they tell you straight away!! Hoping it won't come to a bypass but not very positive. Yes I love a long soak in the bath too 🛀🛀. I will have to find a hobby myself 😅. Thank you for keeping in touch 💝💝

Chickenlou profile image
Chickenlou

6 weeks will pass in no time (although I know it doesn’t feel like it at the moment!)

My fiancé was told at the angiogram that they had been unsuccessful placing the stents and that this would mean a likely bypass (his case went to a multidisciplinary team as they also discussed repeating the angiogram to see if they could place the stents on a second attempt, but it was decided not to bother and to go directly to a bypass.)

xx

Weeps24 profile image
Weeps24 in reply to Chickenlou

I did ask if they would be able to place stents during angiogram if needed. He seemed to say this was more of a diagnostic procedure!! It was all a lot to take in and I have had to phone today to check about medications etc 🙄. He has been referred to a heart nurse and for cardiac rehab though I am not sure he will go for that. This is all a big shock and change to our life which I am sure you can relate to ❤️❤️

Chickenlou profile image
Chickenlou

Wow that was “lucky” that your husband didn’t have any problems whilst travelling,

I’m in a similar position, I don’t have much family and my mum isn’t close by so no real support locally. Like you I didn’t want to tell my fiancé all my fears as didn’t want to put that additional stress on him, it’s difficult isn’t it? This forum is great though for sharing your fears and concerns.

Sounds like you’ve been fortunate that the issue has been found so that’s a good thing and it’s great your husband is “well” too.

I’m happy to chat at any time 😊

Weeps24 profile image
Weeps24 in reply to Chickenlou

HiMe again 😂. Nice of you to be happy to chat 👍, as I don't want to be a nuisance to you!! We both looked after my mum for a long time after a massive stroke, she needed 24 hour care. My friends just think I am worrying too much and will make myself ill (prob true) 🙄. It is difficult like you said to tell all of my fears and worries to my partner as I don't want him to worry about me to. At the moment life ahead seems like one long worry now. Loads of hospital appts, blood tests, tablets, procedures and maybe operations. I am not great today as you prob can tell 😱😂 feel tearful. Although I say he is well he does get out of breath easily but we thought it was copd. Doc now says it is prob a bit of both!! How is your fiance doing now and how old is he if you don't mind me asking? I am Wendy by the way. Thanks so much for your support and time ❤️❤️

Chickenlou profile image
Chickenlou

Hi 😊 I know the nervous and on edge feeling well, It’s horrible as you feel like your constantly waiting for something horrible to happen...

It really does help to try to break it down to one appointment at a time (as they’ll be time to worry about the next one once this one is over etc.)

Hope all goes well with the hospital appointment on Monday, my fiancé also managed to have 2 things going at once - his was his heart and then the CT scan on that picked up a mass in his lung (he had to have a CTPET scan and thankfully it was benign...men!)

Take care xx

Weeps24 profile image
Weeps24 in reply to Chickenlou

Hi LouYes it's an awful way to be waiting for something to happen 😕. The scan for your fiancé's lungs must have been a scarey time too. You must have been so relieved that it was benign!! My best friend has lung cancer diagnosed over four years ago and touch wood after chemo and radiotherapy she has been OK. It was another awful time though. Every time my partner gets a twinge or anything I just go into panic mode. I agree bloody men 😅. I hope you are both OK at the moment and thank you for thinking of Monday for us 😘❤️

Chickenlou profile image
Chickenlou

Hope your husbands appointment went ok yesterday? xx

Weeps24 profile image
Weeps24 in reply to Chickenlou

Thank you 🙏 it was a nuclear medicine scan on his kidneys 🙄. Didn't tell him anything though 😔. Still waiting to hear from the heart failure nurses, no idea how long that will be!! How are you and your fiance doing? 🥰❤️

Weeps24 profile image
Weeps24

Just to update you as we were talking about lengthy waits. Heart failure nurse appt could be around 6 weeks 😒❤️

Chickenlou profile image
Chickenlou

Well I guess 6 weeks isn’t SO bad, tho realise to both of you it will seem much longer. Hopefully the additional support from that and rehab will be a support to you both.

I had the opposite with my appetite and took to comfort eating - put 10kg on last year and have spent this year losing it again!

I’m feeling much better now thank you 😊

Hope you both have a peaceful weekend xx

Weeps24 profile image
Weeps24

Thank you hope you have a lovely weekend to and are feeling better 👍. X x x

Chickenlou profile image
Chickenlou

Just wondered how you are doing? x

Weeps24 profile image
Weeps24 in reply to Chickenlou

Hi LouI was wondering how you were doing too as you said you hadn't been well. I hope you are feeling better 👍. I am OK thank you, still trying to get my head around things and still worrying 😱. I am hoping that when angiogram is done and we see heart nurse I will feel better but maybe not 🤔. Have you heard anything about your fiancé's appointment and is he still doing OK? Thank you for message 👍❤️❤️

Weeps24 profile image
Weeps24

Hi LouHappy Birthday to you 💐. Sorry you aren't being spoiled but circumstances do take over!! 🙏

I have not been feeling great either the dark nights don't help, I have always hated the winter ❄️.

Sorry you still have a long wait for appointments, it's not good waiting for answers.

I don't work anymore so the days are long and more time on my hands to worry 😢. I worked for 35 years then got made redundant, as I was over 50 it was classed as early retirement.

Hope you enjoy your Birthday evening as much as you can 🎂🎁🎈💕💕

Tarricos77 profile image
Tarricos77

Hi , unfortunately this news awful my heart was only working 20% completely devastated .I changed my diet no alcohol no salt and health life style .Likely no artery blocked .I am always worried but I had to fight and taking medication .This days they have done so many new things and improved massively .I am sure slowly slowly you will recover just say to youra self never give up .If you want write to be open you are more than welcome .

Chickenlou profile image
Chickenlou

Hi 😊Just wondering how your both doing?

xx

Weeps24 profile image
Weeps24 in reply to Chickenlou

Hi LouThanks for asking 👍. We are just the same thanks. I still feel really anxious and panicky, that hasn't changed 😕. Still not heard from hf nurses, I did phone them two days ago and was told he had been accepted 😲 and someone would phone me back but still waiting. Mick went to cardiac rehab today, just did a bit of walking and BP took extra.

How are you both doing? I hope you are feeling better now and enjoyed your Birthday as best you could 🎂❤️

Weeps24 profile image
Weeps24

Hi ChickenlouI was just wondering how you both are? 💓

Weeps24 profile image
Weeps24

Hi LouThings OK, Mick has his angiogram tomorrow and I am really struggling, so afraid of what it will show. I really think it's time to see my gp as I really don't feel well. I feel constantly nauseous and struggle to eat 🙄. He has had a 24 hour monitor which was OK, and a phone call with hf nurses. No appointment to see them until Jan 21st 😬. Sorry that things have not moved along for you 😏. I thought that my anxiety might of calmed down a bit by now but it is so much worse!! An old friend died suddenly from a heart attack, so very sad but it has heightened my fears 🙄. Sorry for doom and gloom. X x x ♥️

Chickenlou profile image
Chickenlou in reply to Weeps24

Sorry to hear your still struggling, definitely go to your GP to see what they can do to help.

At least after tomorrow you will know more about options and treatments and hopefully have a plan for the coming months.

I’m not surprised that your friend passing away has increased your anxiety, sorry for your loss.

Good luck for tomorrow, I’ll be thinking of you both x

Weeps24 profile image
Weeps24 in reply to Chickenlou

Thank you Lou ❤️. It's just so difficult to think about anything else and not to go to worst case scenarios. Mick is fine, doesn't appear worried attall x x x 💓

Chickenlou profile image
Chickenlou

Fingers crossed the angiogram is done and your both ok x

Weeps24 profile image
Weeps24 in reply to Chickenlou

Hi LouIt has been a long day, but good news arteries are clear 🙏. Now need to have an mri scan to see if they can dind out what has caused the heart failure. They did say it could have been a virus at some time 🤔. I feel better now that is done as the docs definitely thought he had coronary artery disease. Thank you for thinking of me 🙏. I hope all is OK with you at the moment 👍x x x 💓

Chickenlou profile image
Chickenlou

Brilliant news 🙂 that’s really great to hear!

(Very short reply as got to get ready for work!) x

Weeps24 profile image
Weeps24 in reply to Chickenlou

Thank you Lou 👍. I couldn't believe all arteries were clear, especially as the doctors had told us that was prob the problem. Now the wait for mri scan 🙄. Hope all OK with you x x x 💓

Weeps24 profile image
Weeps24 in reply to Chickenlou

Hi LouJust wondering how you are doing, any news on appts yet?

I am OK, I was so relieved that there was no blockages after angiogram. The cardiac rehab nurse phoned and mentioned some furring up which set me back as cardiologist only mentioned a tiny bit of furring when I pushed him and said it was all good news. Anyway we know have to have an mri scan to try and find the cause of heart failure 😐😐, so more waiting for appts!!

I eventually phoned my gp who has prescribed something for anxiety as I really am back to square one with worrying etc.

I hope you are both doing OK and maybe looking forward to Christmas 🤶❤️❤️

Chickenlou profile image
Chickenlou

Hi - sorry only just saw your message 🙂

No news as of yet on appointments (not expecting to anything this year now!)

Glad to hear you’ve been to the GP, hope the pills help at least a little with the anxiety.

Hopefully the fact the furring had been described as a little is a good sign (as I’m sure a lot of people have it to some degree)....my fiancé’s furring/calcium score was incredibly high and in the top few percent for his age 🙁

We are both ok, I’m struggling a bit as he’s having a few mood swings and that’s never easy (and I’ve snapped back a couple of times which then makes me feel bad!)

If I don’t speak to you before hope you both have a nice calm Christmas 🎄

You may also like...

Anxious waiting for surgery

Hi Just wondering how those like me waiting for Mitral Valve surgery are feeling not knowing when it

Waiting on bypass surgery very anxious

triple bypass. Most worrying thing is that due to varicose veins in both legs I have been referred...

Sat around useless anxious and waiting for anything to happen

downer. I feel like I am in limbo. I am awaiting open heart surgery on my aortic valve and I have...

Anxious

you get older with I would have brush of before the HA , I just done have that inner voice to say...

Anxious

attack on 23.03.23. I had a stent fitted. I’m feeling anxious and frightened. My lifestyle wasn’t...