Two years on from ohs

[Jessiebrown]

Hi all,just wondered if any one has any idea what’s going on with me, I had a ascending replacement aorta,replace aorta valve and repair mitral valve, I took a long time recovering ,I am 74, my breathing didn’t improve much but everyone said give it time it will get bette,it hasn’t! In fact it has got much worse,I have had tummy troubles and various problems,I have had every test available and all tests come back normal , I wake up in the night breathless,sweating and have to get up and walk around ,I haven’t slept properly for months and am thoroughly fatigued my doctors must be so fed up with me ,my chest feels so tight and uncomfortable,I can’t do anything without getting out of breath , I can’t walk up even a slight incline without stopping for breath,today I walked on level ground and had actual chest pains ,usually I just ache, I get really bad burning pains across my back and shoulders,I have written to my cardiologist and my doctor said he write to her to. So we are waiting for a reply. I just wondered if it could be some sort of angina that doesn’t show up on some tests,I’m worried if I go to a&e in case they keep me in as my husband has just had a HA and I can’t leave him on his own until he improves he is ok but time is young for him yet,We are on our own with no help,my husband is 79,sorry about the winge but am a bit worried as I think my cardiologist thinks it’s psychological.

[Jesscollie]

I'm sorry to hear about your condition. With all your tests coming back normal, it's very difficult to say. I hope that with perseverance you can find the answer.

[Jessiebrown in reply to Jesscollie]

Thank you for your reply x

[Cliff_G]

Jessie, so sorry to hear this. Something about your description makes me wonder if you are on a lot of medications? I had a similar case of not getting better after an aortic operation and found out by accident it was the meds. Beta blockers are a standard prescription after what you've had, and they are famous for causing the sorts of thing you describe, they also exacerbate or reveal asthma. Doctors often don't realise how bad they can be for patients. Other meds can affect things too, e.g statins on leg/muscle weakness. Many meds can affect sleep. Ditto tummy troubles.

Also, is your tight breathing like asthma, or is it a different sort of breathing difficulty?

If you've had lots of tests, my guess is they have been checking for such as angina but not found anything.

I would have a word with your GP about short trial periods off one medication at a time, to see if you feel any better. Also, get a peak flow meter (buy, or get on prescription) to see what your breathing capacity is from hour to hour during day and night, for a trial period.

Lack of sleep is the worst! You say you're waking up sweating. Since my op I have been much more sensitive to being too hot in bed, not apparently obvious, but I lie there wide awake. I eventually found I need the bedroom no warmer than 18 C and only a very light quilt (4.5 tog), and no bedsocks! I can't take a 7.5 tog quilt any more. Being too hot is a major known cause of difficulty sleeping.

And as for it being psychological, when you live with a set of problems like you are, yes, it will affect your mental state, but that's a whole lot different from it being "all in the head". That is a bit of a get-out sometimes used when someone is all out of ideas. And, unfortunately, too often used in the case of women, even in these days.

Best of luck. Try a few different things. One thing is for sure, if you don't make changes, then it will stay the same. Each time you find something which helps, you will really find it lifts you, as well as getting you better.

[Jessiebrown in reply to Cliff_G]

Thank you so much for your reply, I take bisoprolol 5mg I started on 2.5 and it’s been gradually increased as I have AF, I also take 3 bumetanide water tablets a day ,but my legs still swell in the evenings, I take paracetamol and codine for pain as I have arthritis and I take montelukast for allergies,also lansoprazole, and warfarin,as for my breathing my gp says I have copd but I had it tested at hospital and it was fine,I am very wheezy at times and I was supposed to have another test at my surgery but with COVID it wasn’t possible,I didn’t realise you could buy a test yourself so I will invest in one,yes I think I have been tested for everything but some anginas don’t always show up like micro vascular angina,I just have difficulty breathing doing really simple things and also even doing nothing my chest feels so tight and aches,I just hope I can get to the bottom of this ,I sometimes think I should go back to papworth and the surgeon who did my opp even if I have to go privately even though I can’t afford it.Thanks again keep well yourself x

[Cliff_G in reply to Jessiebrown]

Jessie, you have quite a complicated picture there. One issue with that is that probably no single doctor will have sufficient cross-speciality expertise to deal with everything that is going on. In such a case, the best way to deal with the problems is with a multi-disciplinary team (or MDT) such as Cardiologist, Pulmonologist, Rheumatologist etc all discussing your case together. Then they can work out what will help you without hindering other factors. Your GP will have a good idea of what the options are but they will be limited by the need to consult specialists.

The AF complicates matters (I have this myself off and on, so know what it's like). Depending on the individual, AF on its own can make you constantly very tired. Some find it's pretty bad (like myself), some barely notice it. AF plus beta blockers (unless very carefully dosed) is a sure recipe for feeling tired, in my opinion. If you were to trial a short gap in your bisoprolol your AF may simply mask any benefit. The problem is, the alternatives are not many.

If you do have COPD (were you a smoker?) then the peak flow meter probably won't help so much (it's a diagnosis tool) but then you are also on Montelukast which is typically used for asthma. If you were to get a peak flow meter then at least you could keep a log and see if you have good periods and not so good periods, which will help a doctor. If your readings are really poor, that will definitely get their attention!

Getting an MDT isn't terribly easy, but worth discussing with your GP on the basis that you have a lot of different things which should really be looked at together, not separately. But the bottom line is, if you are still feeling so bad, then something needs to change and I think with that complex picture you either need a GP keen to work with you on it, or an MDT review or two. I wish you all the best

[Jessiebrown in reply to Cliff_G]

Thank you for understanding how difficult everything is ,I feel I need someone to see me as a whole not just one thing,I feel everytime I go to the docs they say everything is fine,I’m fed up with going as I don’t think they know what to do with me,but it’s obvious I can’t go on like this.my gp is good and has referred me to a gland specialist (I can’t remember what it’s called) weeks ago but haven’t heard a word everything is held up with COVID ,any way I’ll persevere ,thanks again for your help and careing x

[Cliff_G in reply to Jessiebrown]

Best of luck, you'll get there