asthma > DIPNECH

[Bellaowl]

I’v has asthma since 10mths old due to whooping cough. This was 1947. I also had TB. so I’m not new to lung problems.

I’v recently been diagnosed with DIPNECH but have only today been sent the CT scan.

I’v had no discussions with my consultant and trying to get the results from March have been difficult.

From what I can understand it appears the lungs are becoming fibrotic and there are several nodules throughout.

How worried should I be?

How much should I be jumping up and down to get an early appmt with the interstitial team.

I’v been told to use my nebuliser x2/ day.

I have multiple allergies.

Bellaowl

[Ern007]

Anything to do with lungs is a worry.

I have COPD with Dyspnea - Going back 2 or three years I had a shadow on my left apex. The consultant said it was caused by more scarring - It has now moved to right apex - So I am putting it down to fibrosis.

I have Bladder Cancer and have frequent CT scans to check my lungs with now has a 6mm none, and have had a follow up CT Scan - I can't find out the results as yet.

Like you I can't find out , probably because I am having BC treatment and when I have had the look at op, I will then be told all.

I have not been any help writing this but, you are not on your own,

[Alberta56]

I'm sorry you're being left in the dark. You definitely need to press for an appointment. Worry and uncertainty are not good for anyone. I hope people with more experience of dealing with hospitals will be along soon. Phoning the consultant's secretary seems to work for some people. The help line on this site may be able to advise you. Phone [phone]

[Mellywelly]

My mum had TB when she was a small child. I would push and push them just to put your mind at rest. Good luck 👍

[peege]

Hi, I took the liberty to look at your profile, you're dealing with so much and I think that the least you deserve is to get this sorted. If it's up to you then I'd start jumping up and down to see the interstitial team.I'm now going to look up DIPNECH for enlightenment. Sorry I cannot help although Alberta's mentioned the helpline. Do give them a call for professional guidance, they're open uk office hours. Wishing you all the best. P

[Bellaowl in reply to peege]

Thanks peege and others for kindness.

Yes I have got a lot of comorbidities which is why I expected more cooperation.

I’v just an operation on my mouth so not able to jump up an down.

My dental consultant is lovely and she read the letters I emailed and found it hard to understand the lung consultant hadn’t discussed anything properly with me.

she suggested that since Pals at the lung hosp are alReady involved I contact them to expedite an appmt with the interstitial team. They have already sent another copy of the referral letter.

But being summer and the doctor is Greek I suspect she’s gone home unless avoiding the wild fires.

I may try phoning the BLF helpline tomorrow if I can speak.

Bella🦉

[Patk1]

You've a lot going on.perhaps speak to gp to chase it up for u.youve done well to get ct report.ive been asking for 12mths - ea time they write to gp cc me there's something else added on.i hope u get the appointment u need - u could ring Yr consultants secretsry+ tell her U need to see him, too x