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

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Anxiously waiting for appt

Weeps24 profile image

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

39 Replies

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

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.

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

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

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 GWP1952

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

GWP1952 profile image
GWP1952 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!!!

😀

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 ♥️♥️

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

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 ❤️

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 💝💝

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 ❤️❤️

I think some health trusts do the angiogram first and then stents at a second appointment if required (I’m sure I remember reading on here, that some hospitals do it that way and some do it all in one go.)

Hope you’ve worked out the meds, I made a chart up when my fiancé came out of hospital as think he was on about 10 different meds at that point and the chart really helped as I marked them off as he’d had them (he carried on using it when I went back to work for a while too.)

That’s good about the heart nurse and rehab, my fiancé missed out on all of that due to Covid unfortunately. Cardiac rehab is meant to be very useful and it’ll give him the chance to talk to others going through similar.

Yep can definitely relate to the big change, I think I noticed that more once the bypass was done, as then I slowly came to accept what had happened and what the future looked like. Try to take things one day or at least one appointment at a time. Xx

Weeps24 profile image
Weeps24 in reply to Chickenlou

Yes I will try thank you ❤️. Just before covid we had been travelling around Thailand and Vietnam and scarey to think all this would have been going on in his heart then. Feel a bit lucky that nothing happened while we were away 😕. I have no family really and feel quite isolated with my fears as don't want to burden my partner with them all the time. He is well really apart from the breathlessness which we put down to his copd, so in a way if was a good thing that respitory clinic sent him for echo or we would never have known there was a problem. It helps to chat thank you x ❤️

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 ❤️❤️

Hi Wendy (I’m Lou by the way!)

Not a nuisance at all, I’m more than happy to chat 😊

You really really need to try to take care of yourself, I can’t stress the importance of that enough...I didn’t look after myself very well after my fiancé was diagnosed (as put all my focus on him and keeping him as “ok” as possible) and it’s a miracle I didn’t get ill as i was stressed and exhausted.

Unfortunately this might be a long road and you need to ensure you consider yourself too. (It’s hard I know!) All the appointments and tests can seem to go on and on but try to remember that each one is a step closer to diagnosis and your husband getting well. I’d say it was normal to feel teary and overwhelmed there’s a lot going on for you both.

My fiancé has had complications since surgery and still isn’t great BUT I was amazed that when I saw him in ICU after the surgery, that he looked so much “better” even on the ventilator - he was pale and grey before the op and looked very ill, but immediately after looked pink and healthy! We’ve both struggled with our mental health this year as I think the “shock” of it all and Covid happening has kind of hit us now.

Fiancé is in his early 60s (there is a large age gap between us.)

xx

Weeps24 profile image
Weeps24 in reply to Chickenlou

Hi LouI know it is important to look after myself but finding it hard as no nervous all of the time 🙄. I have been like this before with my mum and dad with so much going on. It was horrendous for a long time and it feels like it is starting again 😱. Sorry that your fiance has had complications which I imagine has been hard. Covid has been a nightmare for everyone's mental health but worse after what you have been through. At the moment I find it hard to see any light at the end of the tunnel. My fiance has also been told that he has something wrong with one of his kidneys and needs a scan for that on Monday. I have put that to the back of my mind for now as the heart thing seems more serious 🤔.

We are both 57 well he will be next month 🤣🤣💖💖💖

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 😘❤️

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? 🥰❤️

Fingers crossed no news is good news from the scan 🤞

The waiting is one of the worst bits I think. Hope you hear from the heart nurses and the scan soon.

We’re doing ok, we are now waiting to hear in regards to fiancé’s referrals back to cardiology and the vascular team - I’m guessing it could be a very long wait. I’ve been bit poorly the last few days after my Covid booster jab (got my 3rd one as I work for NHS) but worth it to know the more I protect myself, the less likely i am to catch it and pass it onto my fiancé (which has been a huge fear to me for the last 18 months!)

xx

Weeps24 profile image
Weeps24 in reply to Chickenlou

Gosh yes covid has been a nightmare 🙄. The waiting is definitely hard, feels like i just sit around waiting for something to happen. Feel so nervous most of the time and appetite has gone 🤔. Haven't heard from hf nurses as yet but got appt for cardio rehab in November. I hope that your wait is not too long 🙏. Things seem hit and miss with waiting times lately, in the past year I have been referred to breast clinic twice and had appt within a few days 👍. I suppose heart appts are different and with covid the waiting lists are long. I really hope you feel better 🙏👍❤️

Weeps24 profile image
Weeps24 in reply to Weeps24

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

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

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

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