Does anyone have tips to help a sufferer with pulmonary fibrosis?

Question

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?

Answer 1

Michael, sorry to hear about your diagnosis. I was diagnosed in 2003 with IPF, and I am actually hanging in there. When I was first diagnosed, I lived in Salt Lake City, Utah and the air quality and altitude made my life miserable. I was on oxygen 24 hours per day and like you, could not catch my breath. The doctors put me on prednisone and my weight ballooned 60 pounds. I finally reached a point where I couldn't work anymore, so I took long term disability (oxymoron for someone who is terminally ill) and moved to the Oregon coast. I am now off prednisone, lost 38 pounds, and only use oxygen when I exercise (I walk two miles every day). I use supplemental oxygen from a concentrator when I sleep (I also use a CPAP). This gives my lungs a chance to rest a little at night, and also gives my other tissues benefit from the additional oxygen. While there is no treatment, you can learn to live with this. If you will email me at [e-mail] and put "attention Barry M." in the subject line, I will send you an electronic copy of a book that might help you as you continue this journey.

The other responder mentioned transplant, and while that is an option, it isn't a good option for me. I would only be trading the problems I have now for another set of issues and my chance of survival is not what I would deem optimal. Drop me a line and I'll send you the book.

Keep fighting. Don't do long term goals, they only depress you. Try to keep your goals more realistic. If your wife has a birthday in 2 months, make that your goal - to be alive and kicking in 2 months. If you have an anniversary in six weeks, make that a goal - to be alive and kicking in six weeks. While the pain and lack of breath are horrible, that is your life now. Don't think about what it used to be, embrace what you have now and adjust your expectations. While I can't do a lot of the things I used to do, I can still do a lot of things. It takes me quite a while to walk two miles everyday, but so what? I'm not in a race with anyone, and by being ambulatory, I am helping myself live one more day. Your attitude and support group are the most important things right now. My wife makes sure I don't sit around feeling sorry for myself. She kicks me in the a** every day and makes sure I get up and get going. Good luck and keep fighting the good fight!

If you want additional information, you can go to:

www.pulmonaryfibrosis.org or
www.coalitionforipf.org

Answer 2

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:

http://www.lungusa.org
http://www.nlm.nih.gov/medlineplus/pulmonaryfibrosis.html
http://www.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!!

Answer 3

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

Answer 4

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