Stages of Pulmonary Fibrosis

My dad was diagnosed with Pulmonary Fibrosis Nov. 7th 2012. And I Have spent quite of bit of time researching PF. Not that I can find a lot to research. Even though I don't know much about this horrible disease, I do know his health is declining rapidly. I was wondering if anyone could tell me what to look for torwards the end? He went from being diagnosed, to 24/7 oxygen. To 2liters of 02 to 4 even while sleeping. And now it's taking him about two hours to get up in the morning,and he can't even walk a few feet while on oxygen and prednisone without sounding like he just ran a mile. And I'm just so heartbroken that I can't physically do anything. And I am the one seeing after him, so I just want to have any and every bit of info possible. Thanks for any input. And God bless.
Freda

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Freda, my father was dx'd in 2010 with PF. He was able to manage w/out oxygen or prednisone for a year and a half. When he was started on prednisone it actually made his symptoms worse. After a couple of weeks on it his doctor took him off of it and his symptoms improved. He has continued to use oxygen and is now on 2-3L 24/7 with his symptoms slowly getting worse. When he comes down with a cold it now takes a lot out of him and he is slow to recover. You might ask your doctor about this...it may be that he would want to try taking him off the prednisone to see if that might help.
I am glad you found this group and pray that you will learn from each of us in one way or another. Take time for yourself while being there for your dad.
~Patty

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Freda.. Your question is just what mine was a couple weeks ago.. And I have since learned through this wonderful site plus our hospice nurse that every situation and person is different.. I have desperately searched for just the exact things to look for with my mom.. And I know now there's no exact anything with this awful disease.. Every symptom is treated individually.. If you read some of my past posts I really think you will find all the advice really helpful that was given to me.. I also posted info on a book my moms hospice company gave to me.. I know with all my heart what you are feeling.. PF leaves you feeling like you are chasing your tail wanting answers so badly.. My mom is on 4liters of O2 24/7.. And there are days when she seems somewhat stronger then the next day it's completely opposite.. Prednisone was not a good option for my mom at all.. It actually made her worse.. I hope you read back on all I was told because it helped me a lot!! Take Care!! Izzy

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Freda, I was diagnosed in 11/09.
I went through a lot of soul searching trying to get my arms around IPF. I have found every one to be a little different on how the disease effects them. I am on 10 mgs of prednisone down from 40. I also found that being on celexa with the prednisone helped my disposition.
Have your father stay active, work on the bucket list and you can not have enough oxygen.

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Check with dr, but maybe increasing oxygen will help. My husband is on 2l but increases to 4 if walking excerts him and even 5 in shower. Do you have oximeter to check level? I know this is difficult to watch, I am an only caregiver and it is so hard. Make sure you take moments for yourself to regroup.

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Thanks so much, Patty, Izzy, PGH, and Marsia! We wasn't sure if the prednisone was helping him. But when he got down to 10 mg, we almost ended backup at the hospital. So we increased again, and he got a little better. And yes, I'm thinking we may need to increase his oxygen. His tank only goes to five. But I know the doctor can order him another one. The doctor is even been taken back at how fast my dad is declining. He even told me I might need to be looking for hospice help soon. My dad asked the doctor about how long he thought he had left, and he told my dad he hoped he would make it through this year.

But the doctor doesn't like talking about that to my dad. But I do like that he's honest. I'm just taking one day at a time. And I know without a doubt that God is in control. It's just hard feeling so helpless.

Oh, any yes, he NOT only has an oximeter, he has two! Ha! He said he's eventually going to have one for every finger, and his toes! Haha! He still has a great sense of humor! ;)

Thank you all so much for your words of encouragment! And God bless you all!

Freda

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Frita - email me, I know your gonna get alot of replies via this site - I will be more than happy to email or even talk with you via email or phone.

Daniel
Hoschton, Georgia
danielw4adt@gmail.com

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All these comments just sadden me. My heart goes out to all of you. I do wonder if transplant is an option for any of you? My husband had a double lung transplant 6 months ago. While life still has many challenges the specter of ipf is gone.o

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Karen, that's great to hear! My dad is 72, so he's a little past the cut off for a transplant. God bless all of you!
Freda

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My husband was diagnosed with IPF in 2010 and went on oxygen in July 2012, 24/7 at 3L. Now we are up to 8.5 while he is sleeping.
In the hospital his prednisone was upped to 40. When he came home they weaned him down to 10.
That is when the coughing started. It was terrible. Finally they upped the prednisone to 20 and then down to 15 and the coughing stopped.
What a relief ... for both of us. Now we are going through the testing for suitability for a lung transplant. In
Canada we don't really have a cut off age. If you are fit, have a support person, non smoker and are cancer free for 5 years
your half way there.
Everyone who has this disease progresses differently. There is a new drug called Eisbret that has just come on the
market here in Canada. It has just been approved. It doesn't cure but greatly slows the progression of the scarring.
It is brutally expensive over $2000.00 a month. It wouldn't do much for us but someone in the early to mid stages would benefit.
Carl's next testing will be a week of appointments in Toronto in April. I am taking early retirement as I can not do my job and be on call.
As soon as he can come up with a name he likes I will be starting a blog to track our progress. I hope this will be a resource for the next person who comes along in our position.
One thing I have already learned is we (the caregiver) have to take care of ourselves. Burn out is a probability if we don't.
I am a knitter and am planning on learning Irish Crochet. I may just come out of this with a lace dress.
~Susan

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I can completely relate to you. My Dad was diagnosed two years ago. One year ago he was still skiing, and now he is on 4L O2 continuously and gets winded walking to the mailbox. His decline since September is scary. Now his pulmonologist is saying we should have talks with him about if he would want a breathing tube, CPR, etc if the time comes. He also led us to believe my Dad would be gone within a year. My heart is broken for my Dad and my Mom. I know now more than ever to not take life for granted and do what you can to enjoy it. My parents were supposed to be enjoying retirement and now this. So sad.

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Hi Freda,

i was also diagnose with PF and thymic carcinoma ( cancer of the thymus), had cancer removed and dec 2009, went through 30 rounds of radiations and 5 cycle of chemo during 2010, was on full time oxygen 2-3 litre for one years (2009 to 2010), was put on prednisone from mar 2010 to feb 2012 (50mg, tapering to 0), added imuran from sept 2011, started from 125 mg, i am currently down to 25 mg of imuran, i am doing well,still limit to my activities, can walk the mall slowly, can't walk the airport, still travel and enjoying my life, sit alot, life changes, went from a extremely active 52 year old to not so active 55 year old, i have great doctors, i am really thankful that progression of PF seem to stable on the last CT aug 2012, my next CT is sept 2013 will keep you posted.

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