idiopathic pulmonary fibrosis (IPF)

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Re: Should I be concerned?

Postby Dr Joanna Porter on Thu Apr 16, 2015 6:38 pm

Dear Elaine

Firstly well done for your own understanding and detective work. The whole area of interstitial lung disease is complex. Almost any insult (inhaled such as dust or bird feathers) or circulating (medication or certain autoantibodies) can cause lung damage in an individual. The lung either becomes inflamed or fibrosed or a mixture of both. If no cause is found, it is called idiopathic, if it is the most severe form of fibrosis and idiopathic, it is called IPF. I hope that that makes sense? It is sometimes very very hard to distinguish the severe fibrosis seen with hypersensitivity to bird feathers from IPF even with a lung biopsy, especially if performed late in the disease process or at post mortem. Your brother had reasons to develop pulmonary fibrosis (birds, hiatus hernia, male) and you many never know which specific cause or form he had.

Either way- whether this was IPF or fibrosis due to birds or a mixture in your family, it does suggest that your family is susceptible to a fibrotic response to lung damage and I would suggest the same checks.

Best wishes, Dr Jo Porter

PS: You tend not to see an allergic reaction to the budgies just a gradual onset of shortness of breath over some time in some people; others may have a more acute response, but these tend to be the patients that stop keeping budgies and so never develop the full blown chronic fibrotic response over time.
Dr Joanna Porter
Medical Director and Clinical Lead of Lung Fibrosis
http://www.talkhealthpartnership.com/online_clinics/experts/dr_joanna_porter.php
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Re: Should I be concerned?

Postby Grovee01 on Thu Apr 16, 2015 7:25 pm

Thank you, yes, makes absolute sense.

My mother also suffered for just a few years with rheumatoid arthritis so I guess a very complex case for her consultant. She was still given a CFA diagnosis and the same appears on her death certificate. She initially presented with classic finger clubbing and had a lung capacity of 37% with dropped to 24% in just 3 months (I hope I have my terminology correct here). Her lung capacity was very much reduced before she had any symptoms of the disease.

Anyway, I will take your advice and I am so very grateful for this forum.

One last question. I live in Coventry, am I too far away to be seen at UCLH? Not a problem for me. If not, is there another specialist hospital near me that you know of?

Elaine.
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Re: Should I be concerned?

Postby Dr Joanna Porter on Fri Apr 17, 2015 10:10 am

Dear Elaine,

Firstly well done for your own understanding and detective work. The whole area of interstitial lung disease is complex. Almost any insult (inhaled such as dust or bird feathers) or circulating (medication or certain autoantibodies) can cause lung damage in an individual. The lung either becomes inflammed or fibrosed or a mixture of both. If no cause is found it is called idiopathic, if it is the most severe form of fibrosis and idiopathic it is called IPF. I hope that that makes sense? It is sometimes very very hard to distinguish the severe fibrosis seen with hypersensitivity to bird feathers from IPF even with a lung biopsy, especially if performed late in the disease process or at post mortem. Your brother had reasons to develop pulmonary fibrosis (birds, hiatus hernia, male ) and you many never know which specific cause or form he had.

Either way- whether this was IPF or fibrosis due to birds or a mixture in your family it does suggest that your family is susceptible to a fibrotic response to lung damage and I would suggest the same checks.

Vbw Jo

PS you tend not to see an allergic reaction to the budgies just a gradual onset of shortness of breath over some time in some people; others may have a more acute response but these tend to be the patients that stop keeping budgies and so never develop the full blown chronic fibrotic response over time.
Dr Joanna Porter
Medical Director and Clinical Lead of Lung Fibrosis
http://www.talkhealthpartnership.com/online_clinics/experts/dr_joanna_porter.php
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Re: Should I be concerned?

Postby Grovee01 on Fri Apr 17, 2015 10:32 am

Thank you. This appears to be a duplicated post from the other day, did you mean to post something else in response to my last question?

Elaine.
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Re: Should I be concerned?

Postby Dr Joanna Porter on Fri Apr 17, 2015 11:01 am

Dear Elaine

Sorry for the double post. rheumatoid arthritis also causes lung fibrosis that can be indistinguishable from that seen in IPF. I agree a very complex case. We see patients from anywhere if they are happy to come to us. There will be a centre closer to you but I not entirely sure which hospital. I hope all goes well . Very best wishes Jon
Dr Joanna Porter
Medical Director and Clinical Lead of Lung Fibrosis
http://www.talkhealthpartnership.com/online_clinics/experts/dr_joanna_porter.php
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Re: Should I be concerned?

Postby Grovee01 on Fri Apr 17, 2015 1:37 pm

Thank you.
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Re: Should I be concerned?

Postby Dr Joanna Porter on Fri Apr 17, 2015 4:47 pm

Dear Elaine,

Here is the list from the BLF of specialist centres for ILD
file:///Users/joanna/Downloads/pulmonary-fibrosis-services-map-080115.pdf

If that link does not work here is the original page
http://www.blf.org.uk/Page/IPF-Services-around-the-UK

good luck and would, of course, be delighted to see you at UCLH if you decide on that course.

Jo
Dr Joanna Porter
Medical Director and Clinical Lead of Lung Fibrosis
http://www.talkhealthpartnership.com/online_clinics/experts/dr_joanna_porter.php
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Re: Should I be concerned?

Postby Grovee01 on Fri Apr 17, 2015 7:41 pm

Much appreciated. So glad I posted on this forum.
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