Posted , 2 users are following.
Hi
I had a viral lung infection a month ago. On the X-Ray a granuloma with necrosis was noted. I was asked to have a repeat X-Ray. It now shows fibrosis. Dr. Wants to see me tomorrow.
I am a litfle freaked out. I have pain on that side and it feels weird almost like dry. Some cough but not as bad as when I had infection.
By yhe way I am 53.
Any thoughts?
Vivian
0 likes, 10 replies
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jazztrain vivian89329
Posted
A fibrosis doesn't just happen and perhaps the last time you had one taken it was masked by your viral infection. Perhaps a CTscan is what you need; maybe you had one done last time - I don't know because you have not said. But you are the prime age for someone to get a fibrosis!
kind regards
Jazztrain
vivian89329 jazztrain
Posted
Thanks for replying. I am at my GP right now
I am scared. I read survival rates are not good. I only had 2 xrays. One showed granuloma and lung infection. The other showed fibrosis. My GP told me yesterday that a mistake may have happened. Just waiting to see him now.
Vivian
vivian89329 jazztrain
Posted
First xray showed interstial opacities indicating viral pulmonary infection but not confirmed as there was no evidence of consolidation. Therd was also an old granuloma. 2nd xray showed interstitia pattern that could represent interstitial fibrosis. Gp says he does not think so as its hard to see on an xray. He is sending me for a scan. I also had an oxygen test done which came ok. And mo symptoms. Could the xrays be wrong. Im scared.
Vivian
jazztrain vivian89329
Posted
Why worry vivian, if you have it - you have it! Nothing will change that so just take things in your stride, take a deep breath and have your scan; only then when you have the results will you know if you have anything to worry about But there are many good medicines available now!
Kind regards
Jazztrain
vivian89329 jazztrain
Posted
From what I have been reading it seems this condition is fatal with no cure.
Thanks
jazztrain vivian89329
Posted
I said you have what you have and there are medicines available; I didn't say it was curable because it isn't? But it can keep it at bay, it may even go dormant for a while! However, this medicine cannot be prescribed by a GP or at a specialist centre by a Thoracic Chest Consultant - I take Pirfenidone which costs the NHS £500 per week! It can keep the disease at bay but I stress there is no cure.
Kind regards
Jazztrain
vivian89329 jazztrain
Posted
I understand. Thank you.
What are your symptoms? What prompted you to get checked out?
Vivian
jazztrain vivian89329
Posted
When I then came to live in Ipswich my new GP made an appointment for me to go to Ipswich Hospital with a Dr. Rabbani in Thoracic Chest.
I had firstly an X-Ray which showed up I had a Sliding Hiatus Hernia and prescribed Lansoprazole 15mg which I take to this day. Then a CT Scan which revealed this IPF. I was on no further medication until 2014 when Pirfenidone was licensed through NICE and I was transferred to Papworth Hospital and saw this DR. Parfrey. (they say she is the best consultant there is in this field and I would agree) She agreed to put me on this new drug and it has changed my life completely!
On this drug mthe amount of air I can get into my lungs has gone up from 56% to 63% and the oxygenation of my blood remains at 98%. A copy of the consultant's letter comes to me and also a copy to Dr. Rabbani at Ipswich Hospital as one day when I no longer qualify for this drug I will need to be transferred back to her.
In saying this a patient has to drop more than 10% in a year of air intake OR go below 50%.
It is worth remembering that with an IPF the patient has a dry hacking cough while a patient with an Hiatus Hernia develops a mucous cough?
So it is important to know which you have - there is medication to disperse the latter but not for the dry hacking cough!
That's it really, however, if you smoke you would have to stop and not breathe in second hand cigarette smoke. Alcohol would be severely restricted and a reduction in weight is necessary and of course regular three monthly blood tests to see how the Liver is coping with the drug.
Hope this helps you.
Jazztrain
vivian89329 jazztrain
Posted
Thanks for your patience.
I have not heard from anyone else on the forum. I have been here for diverticulitis and it was ver active topic.
Maybe this illnesz is not as common
ViviN
jazztrain vivian89329
Posted
Unfortunately it is common in those of late 40's onwards BUT I don't know who you are seeing but to me from what you say and the questions you ask - whoever it is doesn't seem very informative of the disease. Why don't you bang the drum and demand answers?
I have told you all I know but if you want to keep in contact that's fine.
Kind regards
Jazztrain