Just had diagnosis

[Jb62]

Hi there,

Anybody else got Restrictive Lung Disease? Would love to hear your experiences!

[Katinka46]

Have you been given a more exact diagnosis? There are several restrictive lung diseases. The commonest are Pulmonary Fibrosis and Idiopathic Pulmonary Fibrosis. There are people here with those diseases. You have presumably had pulmonary function tests to get the diagnosis?

All the best

K

[Tricity125]

Yes I have. And. It's very very restricted. Life is a battle every day. And. I now live in hope that I'll get a call for lung Transplant. For my illness no cure. Lungs are difficult to treat because there so complex and delicate also exposed to how atmosphere you must do all you can to protect them by keeping as healthy as you can. I.e. No smokes or passive smoke eat and drink as best you can. Find a good balance of not doing to much or just as important to little. Oh. Yeh Very. Very important find a good. Surgery. & GP. Get referred to. A. Heart lung. Hospital. Do not give in. Keep pushing they. The. NHS. Will. Tell you. What's best or easiest for them. And you must. Push. If no joy find new. Surgery and GP. Who take your health more seriously and find the best. Hospital in your. Region good luck. Hope this helps. Let me know if you like. How you get on. BW. Paul

[TwinklingStar]

Hello Jb62

I have a restrictive lung condition. Mine is called Non-specific Interstitial Pneumonitis. I think the meaning is Non-specific = unknown cause and Pneumo = Lung related and itis = inflammation. The name of my condition is I believe just an "umbrella" term for a list of damages of unknown cause.

In my case the reason they don't know the cause is because I am too ill and too fragile to have a lung biopsy and the history did not highlight any specific cause. I was also told I would not be considered for a double lung transplant. This is because I am very fragile as I have a genetic condition called Ehlers-Danlos Syndrome. Also I was infected with Hepatitis C at age 18 following a blood transfusion. There are drugs to treat Hepatitis C but I was also infected with Hepatitis B which I must have self-cleared. The drugs for Hepatitis C can reactivate the Hepatitis B so this is dangerous. Also the drugs are contraindicated for those with respiratory problems.

I did have, lung function tests, x-rays and CAT Scans which showed the following:

The inflammation has caused "Widespread groundglass effect" this is where the inflammation has permanently damaged the lungs causing them to become hard and inability for me to breathe in fully and breathe out fully. It also caused me to have some "air-trapping" so I guess that is where the lungs are hardened some air gets trapped instead of me exhaling it but not really sure. The medical report also stated that I have Bronchiectasis which I think means - bronchi = the main passageways into the lungs and ectasis = dilation of hollow organs so it would mean that the passageways to the lungs are abnormally enlarged.

In my case I believe my lungs were damaged because the Hep C caused Cirrhosis of the liver and liver damage is known to cause Hypoxaemia (low oxygen levels). The Hypoxaemia was left undiagnosed for several years and I believe this is how I ended up with damaged lungs. Most of my conditions cause severe fatigue and pain so I am not able to do much. I was diagnosed December 2013 and I have been on oxygen since that time. The most important thing for me is to make sure I exercise regularly, get plenty of sleep, and look after my liver. I have never drunk alcohol, I don't smoke and I don't eat any processed foods. I also drink plenty of water. Oh and I try to sing whenever I can because I love singing. I use an app called Smule which is like a massive singing club. People invite you to sing with them or you can sing a song and invite people to sing with you. I like it. It's great fun and very good for my lungs! Trouble is I sing a couple of times and then I can't sing for weeks but I look forward to when I can.