Restrictive Lung Disease

[Photolady]

I was dianosted with moderate restrictive lung disease about a month ago. I was told over the phone and I don't have a followup appointment with my pulmonologist until next week. I am really having a hard time breathing especially at night. I have a cpap machine but that doesn't seem to help any. My stomach feels distinded and full. Is this common?

[angse]

Hi Photolady I really can't help you on this, I have well they say mild COPD, but breathing bad, I'm sure there will be someone on here soon to answer your question, who is more knowledgeable, but what I would say to you is go to A+E if breathing gets that bad at night, I have 4 chronic diseases, and I ignored one of them trying to be strong, and I am lucky to be here, I hope you get some relief, and you will get good advice here, keep well!as possible. Annette oh about the distended stomach, I have no idea, and also to be diagnosed over the phone is ridiculous, you can also ring the BLF who will give you good advice

[Photolady in reply to angse]

They did a breathing function test that showed restrictive breathing,but they didn't give me any information about it so I am just waiting until the next appointment.

[angse in reply to Photolady]

Hope you don't have to wait to long for appt: let us know how you get on, and all advice Plumbob has given you is spot on. Annette

[Plumbob]

Photolady - If you feel that your Medication / treatment isn't working or you feel you are deteriorating, hassle your doctor, because its the doctor that refers you, and if you can't get in to see him for a few days tell them that you want a home visit. they will soon fit you in. He can't know how you feel unless you tell him.

I appreciate that doctors are under a lot of pressure, and target meeting objectives which I sympathise with but your health has to be the priority

Plumbob

[Photolady in reply to Plumbob]

Thx!

[Offcut]

I am an RLD sufferer as well. This past week has been bad for me too. I would say that if you can get on a PR course do.

Did you have a silly cough for some time as this can cause the distended tummy as you are sucking air in the stomach.

Did they say that there is asthma as well or damage?

Did they do a spiro at the GP and hospital in the plastic box?

Xray and or CT scan?

Sleep apnoea is common for RLD which I know does not help. Maybe the machine needs new pressure settings?

Be Well

[Photolady in reply to Offcut]

I had a breathing test that shows 83% lung function. A ct scan that shows scarring on the lungs. I am over weight. My family thinks that is what my problem is.

[Offcut in reply to Photolady]

Sorry to say extra weight does not help but is not all of the problem. I am 52% upright and drop a further 12% when flat. I have had 2 SA tests and I did not have enough to warrant a CPAP? (For now)

I also have AF and PH plus a few other things to help

[Photolady in reply to Offcut]

I forgot to say that I do have a cpap machine as well. I have had a cough for a few years now. I always thought that it was probably an allergy.

[Offcut in reply to Photolady]

With RLD the lack of flexibility makes it a little harder to get mucus up as we tend to do more shallow breathing. So the body makes us cough to move it. Try coughing with the mouth shut or into a towel.

[jenss]

Hi Photolady, how did you go with visiting your specialist. Did you find out more about what is going on with you? Best wishesxxx