Hello, new here

[ellj]

Hello all, I have joined this community because my hubby has lung problems.

Over twenty yrs ago he was diagnosed with Pleural Plaques, now I know all the official info on PP,s say they cause no probs.

He has had a Bronchoscopy about a yr back and the sister on the unit told me they had to stop itbecause his lungs were bleeding too much.

So we were eventually told that there is no thickening or change from previous scan etc.

The Consultant told us my hubby certainly does not feel pain or get congested because of PP,s.

He has lost 7 colleagues to Mesothelioma and I think they think hubby is imagining his problems due to that.

Well I would like every single person who tells us he does not have any symptoms from these scars to live my hubby,s life for one day....just one !

He is constantly doing physio to try to clear congestion he stays in the shower for an hour which does help loosen the mucus so he can sometimes cough it up a bit. Sorry for too much info.

He coughs all day and night, never completely pain free and has very low energy levels.

I am a retired nurse and it is killing me that I cannot help him.

Also very angry that we are not believed

Thank you if you got this far, I appreciate you reading this.

Ell

[ellj]

Ps should say my hubby never smoked and no one in family does so no eposure to cigarette smoke.

[Mandy6513]

Hi and welcome to the forum

I have just found this on the site .....Has anyone checked him over to find if there is anything else going on

blf.org.uk/support-for-you/...

[ellj in reply to Mandy6513]

Thank you for the welcome.

He has an annual review at gp surgery and they just look at any lung tests from hospital.

The lung function and xray show no change and we both feel they don't believe the pain he has.

Now that the cooler days are here I can visibly see the change on his face when he ventures out, cold air equals pain and coughing.

Medics just think he is paranoid due to loss of colleagues.

[Mandy6513 in reply to ellj]

Oh thats just shocking that they do not take him seriously....Someone should be looking for the cause of it and it sounds like he needs a fresh review and a scan.

[sassy59]

Welcome ell, your poor hubby needs to see a good lung consultant and needs to have a proper investigation carried out because something is wrong.

I urge you to be strong and persist in getting your dear husband taken seriously, diagnosed properly and given medication to help him.

Hugs to you both. Xxxxx

[Watfordgirl]

Hello Ell and welcome here, though what a awful tale you have to tell about your poor husband. I agree with what Mandy's said. For a start, try going back to your GP, or a different one. Ask them to listen to what your husband is saying about how he is, his symptoms and not just to look at the LFTs. Ask for a further appointment with the respiratory consultant - if the PPs aren't causing his symptoms then something else is. Try phoning the BLF helpline - open office hours, Mon to Fri.

I'm sure lots of others will be here with support and other suggestions.

Please keep in touch.

Sue x

[ellj]

Thanks Sue, I will make him an app with the new doctor at our practice.

Ell

[Katinka46]

So sorry about the way your husband is being treated, I'm afraid it is horribly familiar. Why, why don't doctors listen to patients and their family members? Katherine Murphy, CEO of the Patients Association, has said that behind all the scandals in the NHS (and world-wide, actually) there is a quiet, subdued, repressed refrain from patients, friends and family members: "They didn't listen to us.... They didn't listen to us.... They didn't listen to us....". I'm afraid you and your husband will have to persist and push and strive to be as assertive as you can. And it will pay off. I just hope that it does not take too long. You can find yourself in the invidious situation of actually wanting symptoms to worsen so that someone will HAVE to take you seriously.

Nightmare.

K x

[tamariki]

I was diagnosed with pleural plaque thirty years ago, due to being exposed to asbestos. Many of my workmates, who were checked the same time as me developed mesothelioma and died with 6 months. I have had a bi-annual chest xray for the past 30 years, and been told nothing has changed. He may have COPD, and your GP ought to check him for this. The practice nurse can do the necessary testing to see if he has COPD. It is check of his weight, a spirometry test, and a 6 minute walk.

I have no major problems with my PP, just the occasional twinge. You should try Mucinex to help clear his mucous.

[Shaurene]

Hi Ell

Sorry to hear your Hubs breathing probs. I can understand his difficulty with clearing his mucus. I have a nebuliser and after taking a couple of sessions it realy loosens the stuff and easily come up after good caugh. May help. Ask your doctor if he will prescribe the Ventolin liquid to put into the nebuliser.