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My PEFR report says I have severe restriction

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amorette44456
amorette44456

So, am a 22 year old female. In the December of 2014 i was diagnosed with Spontaneous Pneumothorax in my left lung and treated with chest tube drainage (ICD) ,then a pleuroscopy showed i had multiple large blebs in the apex of my lung, so they did a VATS assisted bullectomy followed by a pleurodesis , also while removing the blebs, they also removed a segment of the apex of my lung.

Later on, in the year of 2016 , i had a spontaneous pneumothorax in my right lung for which ICD tube was put and i was discharged once my lungs expanded. A month after that my right lung again collapsed , so again an ICD tube was placed and then pleurodesis was done.

After this i had never again had any episodes of spontaneous pneumothorax.

But just a year back I had a check up because i had little breathlessness on exertion and my PEFR showed severe restriction. X-ray was normal.

Someone (i would like to rather not say who) said to me that it is because of the pleurodesis and there's nothing to worry.

I still have breathlessness on exertion and on normally lying down my respiratory rate is 24cpm. Just yesterday while climbing up 3 floors i had rapid breathing.

I read some articles on VAT surgery with talc pleurodesis... and there are studies which say that it causes only minimal long term adverse effects and short term effects like ARDS is rare.

Now i do not know what to think of this report.

So is it that I have severe restriction which is caused by Talc pleurodesis and that's tottally normal?

Even if Talc is causing it, how is it doing so? By fibrosis? And if so...then can i say i have pulmonary fibrosis? and if that is so , my prognosis ain't so good then because it progresses , ain't it? Please correct me if am wrong.

Thank you so much. Please do let me know what this is. I won't be bewildered at all if it ain't good, am all chilled out.

0 likes, 2 replies

2 Replies

  • bob80691
    bob80691 amorette44456

    Posted

    Hi amorette44456:

    Let me say up front that I have nothing to offer you except positive thoughts as I have never even heard of the conditions you have mentioned. Most of the folks who participate in this forum have Idiopathic Pulmonary Fibrosis. You might want to try searching for some of the specific conditions you mention and it could lead to better results.

    For someone so young you have certainly been through far too much. Every good wish to you for a future with better outcomes.

  • julie36573
    julie36573 amorette44456

    Posted

    Hi Amorette,

    I do not know what country you live in or what medical care is available to you but you do need to have more investigations. A group of people on the fibrosis site are also on a specific site for PPFE (Pleuroparenchymal Fibro-elastosis) and this often involves Pneumothoraces. several people were diagnosed because of repeated pneumothorax. There is also a Facebook site for PPFE. From what I know VATS and Talc Pleurodesis can cause pain at the site for some time but should not cause continuing breathlessness. You probably should have a CT scan of your lungs so you can be diagnosed correctly.

    If a piece of your lung was removed, this could have been sent for pathology testing.

    But you are not talking to doctors here and I would also urge you to find an appropriate doctor to follow up.

    I wish you all the best for a diagnosis and a good outcome.

    Best wishes

    Julie

    ps my husband has PPFE, the reason for my being on this site

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