I want to feel normal again

[Truffles2]

I had a CABG X 3. 5 months ago was hoping to feel at least a bit better by now but just feel worse. The cardiologist has said the way I’m feeling is nothing to do with the surgery. My chest pain is gone but I’m breathless and unable to walk far. I could walk farther a few weeks ago than I can now. I feel I have just been given a load more pills (more blood pressure pills and diuretics) and then dismissed with no suggestion of what might be happening or what to do next. I don’t know where to go or what to do now.

[Tos92]

Hi Truffles2

I’m sorry to hear you’re still feeling unwell despite the CABG.

I note that you say you’ve become more breathless. One of the things a CABG procedure does is to reduce breathlessness, as well as eliminating some other symptoms.

Has your breathlessness been investigated any further?

I’ve recently been given a spirometer to rule out asthma as I’ve been short of breath for about 6 months and asked to record my results from it which a doctor will review later.

Anxiety, asthma, and anaemia are a few things that can cause breathlessness. I suggest you make contact with your GP if you find that your cardiologist is not willing to carry out further testing.

All the best.

Tos

[Truffles2 in reply to Tos92]

No my breathlessness hasn’t When I asked the consultant why the CABG had not improved this he said it probably wasn’t caused by the clogged arteries in the first place. This surgery was supposed to help with the chest pain which it has and the breathlessness and tiredness but I just feel worse. I shall be going back to my GP tomorrow cause this is really getting me down. I have gone from being positive and hopeful post surgery to down and I think heading for depression. After my surgery they did tell me that I was a bit anaemic but I can’t take iron tablets so will ask him to look into that. You might have hit the nail on the head with that as the symptoms I have are symptoms of anemia, why didn’t I think of that?

Thank you Tos92

[devonian186 in reply to Truffles2]

The pollen count has been off the scale this year as Councils cut back grass cutting under the guise of saving the planet. Many otherwise perfectly healthy people are suffering with breathlessness the last few months so I would investigate hay fever and asthma with your GP.

Also have you put on weight since your operation as it sounds as if you have become less active?

Having said, that there are ups and downs and medication might be affecting you, although it is still relatively early days in your recovery.

[Truffles2 in reply to devonian186]

I used to suffer with hay fever as a child but haven’t for a long long while. I will follow up on this possibility and yes I've put on 10 kilos since my surgery even though I’ve been watching my diet. I think some of that is fluid. The cardiologist has upped my diuretics but also the immobility and the fact I’m in insulin I have just been piling it on. I just want my mojo back I want to go back to work I want to take the dog on 5 mile walks am so frustrated. I’m seeing the doctor a bit later will ask him about hay fever/ athsma

[devonian186 in reply to Truffles2]

People who have never suffered with hay fever before have said that this year it has been a real problem.

Its so easy to put on weight and that could make a huge difference to your mobility. Many members here report adversely on some of the medication they take, so the 'wrong' medicine, the weather and increased weight may be the main problems, in which case hopefully the GP can do something about it. Do let us all know how you get on.

[Qualipop in reply to Truffles2]

I've had breathlessness for a year now which has been investigated for asthma, chest x rays, spirometry tests, echo scan, holter monitor and ECGs.| I noticed that on my laptop calendar at this time of year, every year since 2017 I've written "breathless again". My GP and cardio suspect my spinal problems make my chest and back muscles unable to relax enough to take deep breaths . I've never had symptoms of hayfever like runny nose or itchy eyes but considering the time of year when it's always bad, maybe that's what is. Do you have a pulse oxymeter to check your oxygen levels when you feel breathless? Mine is always around 99% so I am obviously taking in enough but still feel really short of breath.

[Truffles2 in reply to Qualipop]

I do have an oxometer and my sats are usually between 94 or 95. Cardiologist said that was fine. My GP is referring me to a haematologist for possible iron infusion as I am quite anaemic so I’m hoping that will help. It’s just the NHS does not move quickly But if this doesn’t help I will look into asthma and hay fever. They keep asking me if I’ve ever had asthma but I have no wheeze and a clear chest

[Qualipop in reply to Truffles2]

That reading seems low to me. NO nothing works quickly these days. Has your GP done a spirometry test to check your lung function? I'm waiting for one now. My worst attacks of breathlessness were when I was taking ticagrelor. One of the known side effects is to make you feel as if you can't take a good breath although you actually can. I had to beg to get it changed. I hope you soon get the infusion.

[Truffles2 in reply to Qualipop]

🤞

[Truffles2]

Yes I got my echo because I have a colleague who did it for me didn’t have to wait for NHS thankfully cause I am still waiting for that appointment. Went to see the cardiologist yesterday said it was pretty much the same as the last one only slight enlargement of my left atrium which is the same as when I was diagnosed with AF. Also he said the X-rays showed that my lungs had recovered from the surgery. I asked him what was causing the breathlessness then and he said it wasn’t related to the surgery. I had a 24 hr BP which showed my blood pressure was quite high. It was perfect about 6 weeks ago so why is it high now ? He couldn’t tell me. So I came out of there with an increase in BP meds and diuretics but no real answers. I know Doctors don’t know all the answers but I must say I did feel a bit let down. This has made me very down I just want to feel well. I am going make an appointment with my GP tomorrow but unfortunately I don’t have great faith in them

And thank you be kind for being understanding and kind

[Truffles2]

I did mention the medications to him but he didn’t seem to think they would cause this and upped my BP and diuretics, The thing is I can’t walk the dog I’m struggling even to walk let alone to exercise and I’m supposed to be going back to work Monday. I need to go back to work for my sanity and financially but I really I don’t know how I will cope with the tube and stairs at the other end. I know when I get into work my friends and colleagues will look after me.

[Truffles2]

I will let you know how the GP appointment goes ill see what he says then if he is no help maybe I will ask for a second opinion

[Truffles2]

Thank you for your words of encouragement I’m not often a negative person it’s just I think I haven’t come to terms with my life at the moment. Everything has changed so much. They said this CABG would save my life and give me a better quality of life and at the moment I can’t see that cause I just don’t feel like me anymore

[Truffles2]

it is hard for all of us and I’m just having a little wobble at the mo and finding it hard to accept. There are so many people out there worse off.

[Truffles2]

not a pretty picture

[Truffles2]

you did make me laugh my comment was tongue in cheek 😂

[MountainGoat52]

Hi Truffles,

I'm sorry I've not much to add, but just to say that you have my sympathy. It sounds like your medication might not be suiting you. One thing to consider is whether the diuretics that you are on are affecting your potassium level. I cannot tolerate either loop or thiazide diuretics for this reason - they make me extremely unwell. Unfortunately potassium-sparing diuretics are outside of normal protocol, so that's where I've run up against the system. It might be worth asking for a blood test.

I hope that you can get your situation sorted. By now you should be feeling the benefit of the surgery, not feeling as you do.

With my very best wishes,

Gerald

[Truffles2 in reply to MountainGoat52]

Hi Gerald I’m seeing the GP this morning so will ask. The cardiologist wants a blood test 7 days after I start on the upped meds so will be having that done next week. Thank you for your wishes

Truffles

[gladliz]

COuld we be blancmange instead, I don't really like jelly.😊😊

[Goosebumps]

Hello. You mentioned that you have been diagnosed with AF and an enlarged left atrium.

I have those conditions and I am breathless when I exert myself, especially going uphill. Are you also on the AFA forum on this site,? you will see breathlessness as a recurrent feature and so your doctors might be forgiven for saying the bypass wasn’t the route of your issues. I tend to agree with other replies that the change is meds is also a large factor in your deterioration.

[Truffles2 in reply to Goosebumps]

I am. I had a successful ablation in august last year and have only had AF for a short time following my bypass. I did discuss meds with him and the result was he just increased them. I have seen my GP who has referred me to a haematologist for a potential iron infusion as it looks like I am anaemic so 🤞this will help. If not I will insist on having a drug review. I don’t want to accept that this is how my life will be now so am going to keep looking for solutions before I give up. I am finding lots of suggestions on here which are really helping me to move forward.

[gorillaqueen]

Hi Truffles2 I’m 8 months post CABGX3 I have days when I feel more positive and days not so good which is to be expected I suppose. I was anaemic after the surgery and have never felt so weak, I was in a wheelchair for the first 2-3 months post surgery due to the weakness and foot drop ( caused by the vein being taken from my leg) I felt so tired and down but there is light at the end of the tunnel and I’m now doing much better so hopefully you will, you are only 5 months post surgery so it’s still early days.

Please do as TOS and BeKind suggest and get checked with your GP, also have you been referred for cardio rehab ? I have found this a great help they have been so supportive and are always ready to answer any questions/ concerns you may have. This seems to be a long journey on a very rocky road so please try not to get down but I know it’s not easy. I have also been on diuretics since the surgery and although I’ve been fortunate in losing weight as soon as I stop taking them my feet swell and my weight increases, I sometimes get breathless when bending over/ forward, I have now been told to weigh myself everyday which they were doing when I was still in the hospital.

It’s a lot to cope with and get our heads round. I was also diagnosed with Non Hodgkin Lymphoma a few weeks after being told I needed the CABG but that’s life and most days I’m feeling positive and certainly better than I did prior to the surgery 😊 I do hope you get some answers and start to feel better really soon take care 😊Xx.

[Truffles2 in reply to gorillaqueen]

Hi gorilla queen

I have just seen GP has referred me to haematology for possible iron infusion. Just know this referral will take an age. Life is very frustrating at the moment I suppose I want everything now and I’m really ready to go back to work. I will really try to be more positive. You sound like you have had a hard time and I admire you for your positivity. I will try and follow your example

[gorillaqueen in reply to Truffles2]

Hi Truffles pleased you’ve seen GP and hope you get seen quickly as you obviously need this sorted asap so 🍀🍀🤞🤞. I can understand your frustration although I think I’m in different age group so retired but nonetheless still so much I want to do, not ready for the scrap heap yet 😂 we have another cruise booked for 3 weeks time and really looking forward to it. Hope all goes well and things improve for you very soon. Please let us know how you get on 😊Xx.

[Truffles2 in reply to gorillaqueen]

I am not ready to hand the towel in just yet I am going to keep looking for solutions and answers. Enjoy your cruise I am a tiny bit jealous

[Truffles2 in reply to Truffles2]

The joys of being retired

[gorillaqueen in reply to Truffles2]

Good for you I sincerely hope you get the answers you need Xx.

[Truffles2]

So I’ve seen GP he thinks it might be anaemia as my symptoms suggest it and he says my ferritin is only 25 and HB 105. I can’t take iron tablets I have really bad reaction to them bad bad indigestion and nausea and terrible diarrhoea. He is referring me to haematologist for possible iron infusion so another long wait. I just want to feel well

[Tos92 in reply to Truffles2]

I’m glad to hear your GP has referred you to another department. Fingers crossed this is the beginning of getting down to the cause of your symptoms 🤞🏽

[Truffles2 in reply to Tos92]

🤞

[gladliz]

Best description I can give is a flavoured custard that you set in a jelly mould. Don't you have it on Oz or is it called something different? Shame if you don't😡

[Truffles2 in reply to gladliz]

As long as it’s strawberry flavoured blancmange

[Truffles2]

No more answers just another referral

And a bit of a blow from work. I really need to go back on a phased return so I can be surrounded and supported by my wonderful colleagues and friends, I also feel safe there as they are all medical people, but they won’t let me till I’ve been cleared by occupational health and they can’t give me an appointment till 4 weeks time. I am so angry at the moment have emailed management tonight and am waiting for their response I guess I’ll have to wait till Monday. It was a bit of an angry email but it’s made me feel a bit better😃

[Beardie100]

Hi, if you are three and a half month in your body is still repairing itself. Please be patient and appreciate you are still recovering.

[Truffles2]

I do appreciate that I am in recovery but surely it shouldn’t get a lot worse I was walking 1-2 miles a day 6 weeks after my bypass and now I can’t walk 200m without needing a rest

[bagsypartime]

I'm a bit the same as you truffles, very disappointed with my recovery and going backwards.I was breathless on hills, and after bending down dizzy and breathless.At my 8wk check they said i had fluid on my lungs and very low iron.

My big thing was like you said, i thought this was supposed to make me better?And before the op i was quite fit.

Looking up what beta blockers and ace inhibitors actually do didn't help.I'd rather not take them.

However i have dug in with exercise and am now getting better.You don't get a lot of info or advice off the docs as we are all different, but one of the things a nurse told me when she asked about exercise and i said i'm back at work and my job is very physical was despite my job she recommended making the effort to walk 30min every day to help my bypass to 'take'.

Depression is a very real thing for people in our position and it manifests itself in different ways.I don't think i'm depressed for instance but i'm always on the look out for any odd behaviour.

I admit i have no experience of AF and how this affects things.