I was diagnosed about eighteen months ago following a very serious lung infection (pseudomonal aeruginosa).I spent a total of two months in hospital in an isolation unit,because the disease produced identical symptoms to multi drug resistant tuberculosis.The doctors were fantastic and finally managed to kill the infection just in time before it killed me.Unfortunately,it left behind a horrific legacy in the form of pulmonary fibrosis which is both progressive and incurable.While I have accepted that it is only a matter of time before it kills me,I intend to fight it all the way to the end.I certainly have no intention of laying down and dying just yet!
I get extremely breathless at times at the slightest physical exertion,and terrible chest pains when I try to take deep breaths to couteract it.
But,by far the worst symptom is that I never actually wake up properly anymore,even after a really good sleep.
has anybody got any advice to help my day to day life please?
hello michael,
i am suffering from interstitial pulmonary fibrosis (for 2& 1/2 years)… i was in the hospital for 30 days, 11 of which were spent in a coma in icu….when i was admitted to the hospital my pulse oxygen level was 71% which from what i have been told is almost dead…..when i was discharged, i was on a very high level of prednisone (60mg per day) and a drug called cellcept (which my pulmonary md prescribed to keep my lungs from being so stiff) and for the last couple of years i have been on 3 liters of oxygen 24/7…this experience has been the worst of my life.
now there are 2 different types of pulmonary fibrosis==and i have the interstitial pulmonary fibrosis which most people semi recover from…..and there is also another kind called ideopathic pulmonary fibrosis….which most people only last from 3 to 5 years….you need to ask your doc what type you have, in the meantime do some searching on the web…..go to pulmonaryfibrosis.com and it will tell you everything you need to know about this disease.
i really do want to wish you the bery best of luck with your disease and may God bless and keep you safe and healthy for the rest of your life……luv,Sweetness#1
I'm sorry to hear of your diagnosis. Unfortunately, you are correct when stating that the disease is progressive, however, you are fortunate to live in an age where lung transplantation is possible!
You are probably being treated with steroids for inflammation and possibly O2 to help maintain your oxygen saturation. Other helpful measures include ensuring you receive the flu vaccine each year and sleeping with the head of your bed elevated. if you are not already on the transplant list, ask your doctor about your eligiblity.
I've included some helpful links for further information about your condition:
lungusa.org
nlm.nih.gov/medlineplus/pulmo…
pulmonaryfibrosis.org/
The pulmonary fibrosis foundation offers support groups which may be able to provide helpful, first-hand information from others who suffer from your condition.
I wish you all the best!!