Breathless and not being taken seriously (IMHO)

[Flitchick]

A bit of a rant follows...

I’ve been really breathless since my HA amd stent, but thanks to this wonderful forum, I was sure it was all my meds and thought that once they were tweaked it’d all be ok.

I’ve told every medic I’ve seen about my breathing, but they only took me seriously when I started rehab and couldn’t even do the simplest modified exercises without gasping. My cardiac nurse was so worried she rang me at home and told me to go to A&E, as that would be the quickest way to be examined by a dr.

I was admitted into hospital and then the fun began.

I was on water tablets as they thought fluid was affecting my breathing and they did seem to be helping, but they lowered my BP too far. So then I was put on fluids to get my BP up (while still taking water tabs!!)

Finally got moved to the coronary unit where I feel I’m being seen as a time waster. Both water tabs and fluids are stopped. I’ve had one med switched (Bisoprolol to ivabradine) but i don’t know if 24 hours is long enough to see the effects. They’re talking about sending me home and telling me to be more mobile. No one has really checked my breathing and I’m now finding I’m unsteady when I walk. All I want is to be able to exercise without gasping and just to be taken seriously. 8 weeks ago I was doing boxing workouts three times a week! I know that tablet tweaking can take a long time and everyone is different but I’m getting really frustrated with my progress 7 weeks in. I feel I’m going backwards.

I see another cardio guy this morning but the ward sister thinks he will have a different opinion from the others I’ve seen and will just send me home.

I’m armed with notes and have alerted my cardiac nurse, hoping she will get on my case too, but wish me luck! Any tips on how to deal with differing opinions (most of which don’t “feel right” for me) will be appreciated.

Sorry for the long post. I did warn you!!!!!

[Montytizer]

Exactly the same, I had a heart attack 6 months ago , no stent though, and my main symptoms are breathing difficulties just doing minor exercise or even everyday normal walking. When I was in doing exercise classes in the cardiac clinic the nurses sent me to A&E three times due to my inability to do the exercises without pain in my left shoulder and arm as well as the tightness in my chest. I am on medications, and the specialist is now after an MRI thinking of changing my medication! I was found to have a leaky valve but not serious enough to do anything about.

At the moment I have to live with this debilitating breathless constantly, even sitting down and resting sometimes. I don’t smoke, never have., and was never breathless before my heart attack.

[Flitchick in reply to Montytizer]

It’s comforting to know someone else is in the same boat, though I’d rather neither of us were! I’m working on being assertive today and Marie’s post below is helping me prepare. I’ll keep you posted.

[Marie1212]

Just wait and see if the other cardiologist has a different opinion or not.

When talking with doctors be polite and straight to the point. They are busy people and internally they can get frustrated because they have a lot of pressure put on them to get through so many patients per shift. It is normally not one ward but at times 3 wards that they have to go through.

Ask them how long do they think it will take for the tablets to kick in and if you are still breathless what do they want you to do?

If you are diabetic you can have a heart attack and no pain because the nerves are damaged by diabetes so just remind them of this if you are diabetic too. If you are diabetic it is really important you ask the nurses to give you a list of all the signs and symptoms you may get if you are having a heart attack. They will probably get a senior nurse or even a doctor to speak to you re. these.

Write everything down that you want to ask them beforehand and don't feel embarassed, just say you were thinking they were time pressed so you have written your questions down and then rattle them off. Write down the answers as soon as you can.

You must tell the nurses before you get out of bed you are feeling weak, they certainly don't want you having a fall, because that could spell more trouble if you hit your head on a concrete floor.

You may think they think you are a time waster but that is how you are feeling/thinking, they haven't said that to you. If you are in the public system they will try and get you home as soon as possible and hopefully line up support again. There are so many people that need beds in the hospital system that is why they push people threw. It is nothing personal. Ironically the private system will keep you in as long as possible because they are making money every night you stay.

It sounds like you have a wonderful RN checking you at home to make sure you are O.K.

[Flitchick in reply to Marie1212]

Thanks for this helpful advice. I have a full set of notes to refer to and your comment about telling them I know they’re time pressed is particularly useful. Fingers crossed. I’ll keep you posted.

[Prada47 in reply to Flitchick]

Lets start from the Top

Why do you have a Heart Nurse ?? they are usually associated with Heart Failure !!

When you went to A & E what was the result of an ECG ??

Do you have Blood Pressure or Heart Rate problems ??

How long have you been going to Rehab ??

and finally what Meds are you On and have they been titrated upwards ?? Just trying to understand your problems !!!

It sounds like they have done all they can, but you have to stay with it. Why because you can't do anything your self you need the Professionals

Regards

ps I am on the max dose of Entresto and Bisoprolol and still get Breathless there is nothing more they can do about it. So I am learning to live with it, thank goodness no Pain !!

[Flitchick in reply to Prada47]

From the top -

Soz- I meant cardiac rehab nurse

ECG was not worrying to them

Have always had low BP - now it’s hovering round 88/60.

Rehab exercises have been 2 weeks

On lanziprolol, ramipril, ticagrelor, furosemide, atorvastatin, aspirin, ivabrantine (?)

[Marie1212 in reply to Flitchick]

If you empathise with them then I think you get on their good side, and it just makes things go more smoothly I think, and less awkwardness.

The other reason why they will try and get you home as soon as possible is hospitals are full of germs despite all the cleaning, so they don't want you getting an infection they would rather you go home. When I had pneumonia I ended up going through 5 packets of antibiotics because I was misdiagnosed with supposing sinus, but then it got to a point that every time I put my head down I started wheezing, so I went to hospital because I was scared I might not wake up in the morning. They said that they would keep me in if the antibiotics that they gave me did not work. I saw my G.P. and she said no way are you going to be admitted to hospital even if you have pneumonia, I want to you to have 2 more packets of antibiotics and I want you to stay at home so that you don't pick up any nasties.

Also my other tip is always go to your GP as soon as you are discharged with your discharge letter. Sometimes they tweak things, particularly if you have been put on narcotics, which I doubt will happen in your situation.

[Flitchick]

Dr just been. And it was the same one I saw at the weekend so I feel that there’s some level of continuity and of course, the one opinion!

Ivabradine dose being put up. Furosemide given to me wrongly this morning. That’s been stopped. Ramipril changed to evening dose.

Provided my BP gets to 100 I can go home tomorrow.

All the questions about the final cocktail of drugs I should be taken will be dealt with tomorrow.

I’m feeling more hopeful now.

Thanks everyone for the really helpful advice and comments.

[Prada47]

Hi

BP of 88/60 is just a tiny bit low to be considered Low, I believe that 90/60 is classified as the starting point for Low depending on symptoms of course.

That is just my personal understanding but at 90/60 my Heart Failure Nurse thought it was manageable !!

I do believe although a lot of us have had Surgery bypass/stents we still get Breathless and on Maximum Meds,nothing more can be done ,Now that takes some Acceptance !!

Regards and wish you well and a speedy Hospital Discharge.

[Flitchick]

Thanks. I’m realising they I need to be more patient and accepting, but it’s hard. It feels like I’m going backwards in terms of recovery, but I guess I’ll have to get used to doing less and putting my feet up more. Hope my appetite declines tho!!

[Ianc2]

That's the catch. Your appetite doesn't. Try and keep gently active, Shoulders back, head up and try and get to a flat footpath where you can walk on a regular basis. Have a good look at the notes that come with your pills, especially side effects. I take Ramipril as an ace inhibitor to bring my blood pressure down, so why are you taking it?

[Flitchick in reply to Ianc2]

I think the ramipril is to control my heart’s pumping action. So as to lessen the effect on my blood pressure, I now take that at night! I guess I have to accept it is a balancing game and be patient. But that goes against my nature. And I’m taking your advice and will plan out walking routes I can do regularly. I’d always thought where I live was quite flat until recently. Now it feels like the town is like the alps. All those slopes and inclines I’d never noticed before!

[Ianc2]

Start off nice and easy and get used to building your stamina very gently. Get some walking poles if you can and have a look at Nordic walking, if you get out of puff you can stop and have a blow while you admire the countryside. If you can find a café half way round you can pop in, have a cup of something and then start again. Take your phone and have the number of a local taxi service in your pocket. If you can try and press gang someone to come with you to discuss all the scandal and the vice. Don't go too daft to start with.

[Flitchick in reply to Ianc2]

That’s really helpful, thanks.

[Marchman]

I had Mitral valve repair 12 weeks ago. Sternum has heeled well and for the first 8 weeks I was happy with my progress. But since then I have also gone backwards. Dizziness, especially laying down in bed or standing for any time has returned. I m also out of breath doing simple tasks, like washing/dressing. I m walking as much as I can and doing gentle step exercise.

Like you I ve had no explanation from my doctor, surgeon or cardiac consultant. All the tests show heart to be fine and no problem with my lungs. Not much concellation really. I sometimes feel worse than b4my operation. Frustrating.

[west9two in reply to Marchman]

Did u figuere out what was wrong?