Scleroderma & Raynaud's UK (SRUK)
6,779 members3,207 posts


I have today received a copy of a letter sent by Thoracic consultant to my Rheumatologist and Prof Denton, in which she says she suspects I may have something called "PULMONARY VENO-OCCLUSIVE DISEASE" and silly me, looked it up, now terrified. The letter also sates that my FEV1 and FVC are 'well preserved' but transfer factor is down at 36% and does not correct.

I also have a 13mm 'nodule' on my lower right lobe of my lung.

I am now absolutely terrified, so anyone out there who can perhaps put my mind a little bit to rest, please do.

2 Replies

Stop point in making yourself worse. Sometimes you are better not knowing things as they can scare the pants off you! I have systemic sclerosis which has given me lung problems..three different types, copd,pulmonary fibrosis and bronchiectasis, I looked these up and was the same as yourself with fears and sure I was on this earth not much longer....but have had chemotherapy and am now on 'horse tablets' to help me and -so far-they seem to be working and the damage to my lungs, is now halted, I have been told by my rheum. consultant. So, just take each day as it comes and try hard not to worry so much. Best wishes for better days.


Dear Anne, Nothing in the world will release us from the initial fear, it is a steady companion for a while, I am afraid. I have been living with this disease over 20 years and responded well to treatment, despite all the negative predictions. It took me a few years to regenrate, but today I swim an hour every day and lead a nearly normal life. You are in very good hands, so at least you can put this fear aside. You will be well diagnosed and well treated, you may improve your response to treatment by taking some active part in it. The most debilitating feeling I found, is when we feel we have no control any more. My mind split up in 2: there was a patient and a doctor. The doctor was telling the patient what to do to make things work better, not today but tomorrow!. It was a form of detachment from myself, although it sounds schizophrenic, it helped me psychologically to maintain a part of my mind independent of the disease and feeling useless. The doc in me used to tell the patient in me what to do.. simple things like "get all the stuff downstairs, tomorrow you may not feel like climbing, you may have a worse day", Sounds silly, but it does something good.. I told the patient to watch a Disney cartoon, telling "her" "you need some simple fun to decrease the build up of stress hormons, becasue they will slow down the good action of the immunosuppresants to make the silly T-cells and the even more wicked B cells turning into antibodies..". I read a lot about the mechanism of the disease to be able to tell my body how it should react to treatment. It took me about 3-4 years of such inner dialogues to keep the patient away from the other part of me, the healthy one. In retrospect, it was a useful self-defense mechanism. I hope you will find a strategy to help yourself through the tunnel. I can certainly reassure you that there is light at the end of it and treatments are now probably better than 20 years ago. Keep me posted . Big Hug.


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