To feel my DH has been a bit abandoned by the NHS?

[follyfoot]

Briefly, he had orthopaedic surgery in April and a pulmonary embolism plus pneumonia in May. He was readmitted in June with breathlessness but they didnt really find anything new. He had a chest infection in July.
The hospital have done an echocardiogram of his heart but no abnormality is expected so thats pretty much it as far as they are concerned.

The GP gave him antibiotics for the chest infection and more recently, steroids for 5 days. He's had bloods and a chest Xray which were normal apparently.

But......he is a shell of himself. Here we are in August and he is constantly breathless, coughs all the time (especially at night) so is permanently knackered, has chest pain and absolutely no energy. He goes to work because he is self-employed and has to, but has no energy to do anything else. I dont think he sleeps for more than an hour at a time ever. The GP doesnt seem interested in seeing him again. I even rang the Orthopaedic Consultant's secretary today to ask her to get him to call DH - after all, his PE was a post-op complication. She was a real battleaxe, but said he would call. No call came :(

DH has struggled with mental health in the past and I can see him going downhill mentally as well as physically before my eyes. Before all this he was a fit active man in his 40s. Now he is a sick man, frustrated and angry that he cant do anything any more. Any suggestions would be really gratefully received :)

The GP doesnt seem interested in seeing him again

GPs don't decide to not see a patient unless they're asked to make a house call that they deem unnecessary.

Make an appointment for your dh with his GP, go with him on the day, and ask that dh be referred to another hospital for a second opinion.

Have no practical advice, but didnt want you to think no-one was reading.

Good luck, i am sure someone will be along who can offer practical advice.

And YANBU, btw.

I'm sorry to read your DH & you as a family have had such a hard time. Post-op complications like PE are rare and you won't have expected this in your young & healthy DH. How would you like your GP to help, e.g. with the sleep, mental health?

I knew someone who's husband had ongoing probs like this and only after years of pushing did they finally get a diagnosis of some v rare condition ( wish i could remember the name it was on 'House' )

definitely keep pushing for more tests / 2nd opinion

The GP doesnt seem interested in seeing him again

A GP cannot pick and choose to that level. I would suggest changing GP if you are unhappy though. A new GP may pick up on something that the old one has missed.

I think he'd be better off with a respiratory consultant than orthopaedic as most of the current problems seem to be breathing related. Push your GP for a referral to a respiratory or general physician.
Is it possible that he is depressed given lack of energy and poor sleep? I'm not saying its all in his head just that depression does have physical symptoms and could be treated quite successfully.
Could he try gentle physical exercise eg a walk every day? When you've been as ill as he has you lose physical fitness and this can cause breathlessness in itself. Exercise would also help him mentally.

PS YANBU The NHS tends to be better at clear cut, easily diagnosed things than non-specific symptoms I'm afraid.

i read a blog (Dooce) and her husband had similar symptoms. for a long time.

this was the finale

something to consider/research/ask about?

Who requested the echocardiogram and how/when will your DH get the result? If it's been longer than a fortnight the result should be available.

If the consultant hasn't rung by tomorrow, you could try ringing the secretary and ask if she can bring forward the next appointment. Or as other posters have said, visit the gp again and request a referral to a chest physician.

Thanks all. He saw the respiratory consultant in out-patients in June. He was discharged with no more follow up appointments.

Maybe we should push for another appointment. To be honest though, it'll be 10 minutes with a junior doc who wont have time to get to the bottom of what is really going on (Ive worked in the NHS for years so sadly know this is the most likely scenario).

I asked the Orthopod to call him as he is based at a big teaching hospital reasonably nearby (as opposed to our local DGH which is where he has been seen for his PE). I was hoping he might say 'come and see my colleague Dr so and so for a second opinion on your chest'.

The only other thing I can think of is to ask for a private referral to a respiratory consultant. Would it be worthwhile? Or just try a different GP at our practice maybe? Even if they said look you are going to feel crap for a year, but you will get better, that would at least give him some hope of improving one day :(

I know it might sound over-dramatic, but I have a terrible fear I will find him one day, and he will have collapsed. Or worse.....

(am normally very sane, honest)

I think he needs to get his chest seen properly.

DH has a bad chest & he finds inactivity makes it much worse & even when he is in the throughs (sp) of a bad chest infection (ABS & Steroids) keeping moving however gently keeps him out of hospital

Does he have glandular fever? Ask for tests it can last a year and develop in to me in a few cases

Jas - he had the echo a fortnight ago. He's been told that he will have to go back to the hospital - to the cardiac clinic - for the results, and they havent contacted him with a date for his appointment yet, so god knows when that will be. The echo was booked by the MAU doc on duty when he was readmitted in June so he doesnt even have the name of a cardiac consultant whose secretary he could ring to hurry things.

Oh and one other thing, he has a constant sore throat too, but no-one has really taken any notice of that

How worrying for you.
Personally I'd wait for the results of the echo in case they move things along, and if I still felt like I wasn't getting anywhere and if I could afford it, go private. What does DH think or is he feeling too ill to be objective?

poor him. You have to go back to your GP, maybe a different one, and start again. Maybe the orthopaedic background is just a red herring at this point? Maybe this is normal a few months after pneumonia? I don't know, but you need to get him seen and not let a GP who seems uninterested put you off.

Write down all the symptoms. Go back to the GP. Ask the GP to tell you the WHO (world health organisations) definition of health. 'Health is a state of complete physical, mental and social well being and not merely the absence of disease or infirmity.'

Then ask what he/she suggests in order to get your DH to that state. If he/she refers you to another dept, ask for the phone number for that department so that you can follow it up. If they suggest lifestyle changes the narrange a date to come back and follow up.

Although I would also say check lifestyle things too. Keep a diary for a week detailing what he eats, when breathing is better/worse, how much sleep he has, how much exercise he's done, general feeling.

If you're going back to clinic in a few weeks time, you'll be able to have a full exam with the cardiologist. S/he will be able to quickly refer you onto the respiratory team.

When you check in at the outpatients clinic, insist on a post-it on your DH's notes saying that you want to see the consultant, or at least a senior registrar.

If the cardiologist thinks your DH should be referred to respiratory, INSIST that it is an in-house referral, not a letter back to the GP who then has to start all over again with the hospital.

Hospital management are bullying consultants to bounce back to the GP when the patient needs to be seen by another dept, as the hospital earns another (big) initial referral fee. In house referrals are cheaper.

Forget about chasing the arthropods they're not actually trained to treat medical problems.

Sorry, one thing that interests me, you say the coughing if worse at night? Ok if it s dry wheezy cough. the first possibility to me, would be asthma or COPE, you say he had pn in june, but was it double of single, whats his current lung function (get this tested) sounds to me like the PE and PN could have scarred the lungs and result in COPE or asthma. I AM NOT A DOCTOR; but I have severe Asthma and COPE.

Get to the doctors, as for the senior partner ans kick up a stink, nicely but be forecefull, ask for a lung function and peak flow test, they should be able to do peak flow then and there, and possible lung function if they run an asthma clinic.

Right practical advise, I am going to assume it is a dry cough, and not productive. in which case, Pillows are you friends put everything you have into make a comfortable upright around 45degree sleep position. it notmally helps to cross the pillows in V´s, put a humidifier in the room if you have one, or open the window if it is raining (does really help), trying cutting down on milk as this can be a big cause of worsening asthma, drink lots of water, and sip every time her coughs.

Also you don´t mention where the surgey was, BUT the 2 and 3 vetbrey in the back are dirrectly related to Asthma / lung problems and sublimated and make the condition worse so think about a chroprator.

Keep pushing at the GP´s

or if it is bad a night with lots of coughing and weezing consider a and e.

Hi

Brokenmarrow - did your friends DH have sarcoidosis? I had it a few years ago. It is most common in the lung and leads to constant coughing (I vomitted on numerous occasions I was coughing so much). It also made me feel as if I constantly had a cold and was generally "run down" but it can be much worse. It took ages to be diagnosed as it is so rare and it was only finally diagnosed when work paid for a private referral and I did some self diagnosis on the internet and mentioned it to the private doc. GP was not interested. By the time I was already getting better.

Once it was diagnosed they did a lung function test, and an MRI on my chest which were mainly clear as I was getting better but if not the most likely treatment would have been steriods. They could not explain where it came from and how it went away!

HTH - go back to your GP and really push them as others have said.

I'm really sorry to hear about your DH, and good luck pushing for better help from the doctor.

Would you mind terribly if I hijacked just a tiny bit to ask about what mamadoc said?

If someone is experiencing breathlessness while sitting down resting in the evening, after working a full day - even in a desk job - how likely is it that the breathlessness is caused by lack of fitness?

Surely fitness will adjust to your daily level of activity? So you might be breathless while doing the more energetic bits or something unusual, but you'd recover within minutes as soon as you rested?

I'm really sorry that this is happening and would second the suggestion to change your GP and start afresh with a new one. It may be that he/ she may be able reassure or explain things that perhaps your previous GP just assumed your DH understood.

Highlander orthopods are trained to deal with medical problems seeing as they are doctors. This might be outside their scope of expertise (as it is for a lot of doctors) but that was a pretty sweeping statement.

Has he been checked for thrombophilia in all this time? It's unlikely to be the main cause but it should be ruled out after the PEs, so he should have been tested for it. The GP can request this - and if you are not happy with your current GP's responsiveness then see another one - and if he has it, then the haematology consultant would be involved if there were further incidents.

YANBU, by the way - the doctors should be working together to find out what is causing your DH's problems - but it's not surprising that they're not managing it, sadly.

Thanks all. He saw a different GP today - told that he now has a viral infection and to take double dose of hay fever tablets plus paracetamol for temperature. Oh and multivitamins....

I rang the respiratory consultant's secretary today and she was lovely. She is getting the consultant to look at his echo results and hinted that perhaps he could be seen a bit sooner. Should know more tomorrow. Its hard for everyone, most of all DH, but he is so unwell that he is really miserable and falling out with everyone which makes it all even more difficult. Bless him, he's booked a surprise few days away somewhere for my big birthday next week, it will utterly exhaust him I'm sure, but its such a lovely thought.

Thank you again for your kindness.

Oh that sounds a bit more positive esp with the lovely secretary.
A few days away... sounds wonderful. Lucky you.