update

[Numptybrain]

not sure if you remember I was in and out of hospital a few times with undiagnosed bilateral pleural effusions. Well the next stage was to get some biopsy’s done to see if they can find out the cause but in clinic on Thursday I was told a meeting will be held on Tuesday to see if I now qualify for that! Or if I’m a watch and wait? I’ve had this issue months, 4 hospital admissions and not much quality of life, I can’t breathe when trying to get dressed, showered etc and it’s very painful, I don’t think I can accept a wait and watch? It’s not going to magically change? It’s too small for drainage but they have managed to get samples which always shows high protein . Anybody else gone through or going through this, I’ve been tested for everything heart failure, autoimmune, etc and it’s all negative.

thanks

Wendy x

[Patk1]

I think u need to tell Yr consultant how u feel

[Numptybrain in reply to Patk1]

I don’t see her till January, in fact I had to make numerous changes phone calls including my daughters helping me just to get access to the plural clinic which I should have had on discharge from hospital.

Wendy x

[Patk1 in reply to Numptybrain]

Won't they ring with their decision aft mdt meeting? Tell him then how U feel.

[Alberta56]

Some people find phoning their consultant's secretary helps them to speak to consultant sooner than they might otherwise. Alternatively perhaps speak to your GP about hurrying the consultation up. It sounds as if you need a new management plan. Explain you are in CONSIDERABLE discomfort.

[Numptybrain in reply to Alberta56]

I’m waiting for the outcome of the MDT meeting and taking it from there, you should’ve have to fight for help but I’m starting to think that’s the way forward

Wendy x

[Alberta56]

I think you do have to fight to get anywhere. Be very firm in asking for what you need. Good luck. xxx

[watergazer]

hi. Sorry to hear of your health woes. Hope you get the help. My friend has written to her MP as her husband who is urgent for an unblocking of his shunt in his head has been told it’s 19 weeks away. It’s already caused damage Think her MP is on the case now xx

[Numptybrain in reply to watergazer]

That’s absolutely awful, really hope her MP can step in

Wendy x

[Biofreak]

I think you do have to fight your own corner these days with the NHS who seem to adopt the wait and see approach rather than being proactive. The protein in the pleural fluid sample must signify something requiring further investigation. If they don't ring you after the MDT meeting I would ring the consultants secretary and ask for the outcome. There can be several reasons for pleural effusion but it requires proper analysis. A biopsy sounds appropriate to me. Good luck.

[peege]

'course we remember you, how could we forget your brilliant name ! I'm really sorry to hear that you're still going through it. P

[Sozo]

I live in the U.S. I'm so sorry you are going through this! I have had a small left pleural effusion for over four months with two ct scans. I now have a infiltrate as well. I will see my doctor to go over my recent ct scan results next week. It seems they are kicking their heels a bit. I think this too is a guessing game at times within the medical field. My question to you is, do you ever have pings of pain from the PE? I do at times off and on like around the upper and lower rib cage. Blessings to you!!

[Numptybrain in reply to Sozo]

Yes constantly in my left shoulder going into chest , worsened if I do anything like getting dressed etc.

Wendy x

[Sozo]

Do you think its odd to have the pings of pain in the area of my lower and upper rib cage?

[Numptybrain in reply to Sozo]

No as I had it in my ribs at the very beginning then it changed

Wendy x