End stages of Pulmonary Fibrosis

I was wondering what the end stages of pulmonary fibrosis looks like? Does the oxygen level increase? Does mobility decrease? My significant other has IPF, and has been diagnosised with it for about 1 year. But unlike other people stories I have read, he uses about 8 L of oxygen while sitting, unless he has a coughing fit, and then we go up to about 18 L, and when he moves he has to be on 10-15L. He's appetite has not decreased but his oxygen needs continue to increase. As such, I was wondering if anyone could tell me what the end stages of IPF look like? Thanks.

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I recently lost my father to IPF, his sister passed from IPF 10 years earlier, and the end stages of both their struggles were not pleasant. I wish I could tell you something more positive or more comforting or that I knew how to better say this, but I guess honesty is the best. Though the below was my experience, please keep in mind that everyone is different. I'm praying for you, your significant other and your families!

For my father and aunt, the oxygen levels continued to increase and physical activity decrease to the point that they had to be hospitalized and soon thereafter were put on a ventilator. My aunt slipped into a coma and passed away rather quickly. My father improoved for about a day after being hospitalized, regaining his appitite and being able to move about a bit though he could not do much without his stats and o2 levels dropping, but quickly declined and had to be put on the ventilator. He was on the ventilator for about two and a half weeks before he passed. With each day, his stats be came harder to maintain and his right lung collapsed three separate times.

For both my aunt and father, the onset of their symptoms seemed to be rather sudden. Only in our looking back did we realize this wasn't the case, but everything happened so gradually that it was easy to mistake these problems for other things.

From the time my father was first hospitalized to the time he passed was almost 6 weeks, of which the last 2 and a half were of him on the ventilator. For the first week and a half, they would bring him out of sedation for what they call a "holiday" so they could communicate with him, asking him if he was in any pain and some simple commands of blinking and moving hands/feet. After that, it became too dangerous to do this as being consious caused too much stress and anxiety. The last 3-4 days were filled with ups and downs of his stats and just trying to make him as comfortable as possible. I spent every moment I could at my father's side, holding his hand and telling him how much he's loved, to not worry about anything, to try and relax and to do what he felt he needed to - as hard as that was, I know he needed to hear it and I think it helped to calm him.

Spend every moment you can with your significant other, say what's on your heart, hold their hand and remember the great memories you shared. Talk with them about their wishes - knowing my father's wishes about his care, whether or not to be a DNR and what he wanted for his memorial helped us greatly and comforted us in the decision making process. I know this is a difficult conversation to have, but it will help you in the end.

I hope I've helped you in some way and I'm sorry if my story has caused you any additional pain, but I wish the best for you and your significant other!

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Before your father was hospitalized what were his oxygen levels. What was his oxygen flow by liters? We recently went to the ER and he does have an infection in one of his lungs, but they sent him home with an antibiotic. I'm concerned because it seems this past weeks he has had more coughing fits and it is taking longer to recover his oxygen level. Should I insist that they keep him in the hospital until his infection is gone. Although, he really does not want to go and stay in the hospital, as we have our first appointment with the transplant team next week, and he seems to think that this will hinder him from being placed on the list? Any advice or input? Thanks.

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My father was on 5-6L of O2 when he went in to the hospital on a Saturday morning and that was when he was at rest. He couldn't do much beyond chew without getting worn out quickly, but even that became a chore for him. My father also had coughing fits and those, too, were hard for him to recover from. When chewing became too much and 6L wasn't enough, that's when we called the ambulance. At that point, he had 2 O2 tanks going and 2 hoses shoved into his nose - my mother and I couldn't wait any longer at that point. When moving him from the bed to the stretcher, his O2 level went from the 90s down to the upper 60s/low 70s - that's a range that no one wants! It was from that 911 call that he was taken to the hospital and the following Tuesday was put on the ventilator because he just couldn't get enough oxygen and his respitory rate continued to stay so high. At rest, his rate was in the 40s - the average respitory rate for an adult is 12-24 (breaths per minute). Even on the ventilator his rate was in the 40s and 50s, at his best in the mid 30s but only for short spurts. Near the end he would peak in the 60s and even got into the 70s. It was so frustrating because everything else about my father was so healthy except for his lungs - but in the end, his struggle to breathe wore out his heart. I can't remember how high my father's O2 level got at the moment, but I know it was quite high - he was well into the double digits - I want to say he was up in the 40-50L range before he went on the ventilator.

You and your partner should do what you feel is best - I cannot tell you what to do here. It's great that you have an appointment with the transplant team next week! The fact that you have an appointment is fantastic and your partner should do whatever he thinks is going to give him his best chance to get on the list if he wants to beat this and try to get a new set of lungs. Some people do better in a hospital and some do better at home, I strongly believe that a person's comfort plays a large role in their recovery. If you and your significant other are having trouble deciding, I recommend that you call your doctor and ask his/her advise.

I hope that you have both done your research on the transplant requirements, process and waiting period - there's so much to learn! Read all you can and make a list of questions for the doctor so that you don't forget one of your questions in the excitment of the moment. I know that the average waiting period is about 2 years but when the time comes, there is a series of tests that one must pass to actually get the transplant at that time. It's also a very invasive proceedure so you will want to prepare yourself as best you can for what may come.

IPF isn't easy on the patient or the caregiver, don't forget that you also have to care for yourself. I see we're in the same state - don't hesitate to reach out if you need anything!

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I did not realize that we were in the same state. Where about do you live? I am outside of Indianapolis.

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I'm just outside of Indy, north east side.

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I am Anderson Indiana, that should not be too far away from each other. I would love to get together sometime. Its nice to meet someone else who understands what my significant other and I are going through. Many people have never even heard of IPF.

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Swayer---welcome to the forum (although I am sorry you have reason to be here!). I lost my mother to Pulmonary Fibrosis on June 4, 2012, only three weeks after she was diagnosed. I felt like her disease came out of the blue, fast and furious. But in retrospect, there were signs along the way. Her hacking cough, her "not keeping up" with everyone else. We chalked it up to her getting older when in reality, she was clearly short of breath. It's been a very difficult time but I have found comfort here. I hope you do as well. My email address is rao.saira@gmail.com. Drop me a note if you'd like.

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doferg - I'm in Noblesville so we're very close. I would love to meet up with you sometime as well...you can email me at sarah.swayer@gmail.com and we can work out a time and place. Keep your chin up!

Sameera - nice to "meet" you. As heartbreaking as your situation was, it's nice to meet someone with a similar experience as me. I would love to talk more with you. It's only been a little more than a month since I lost my father and I'm really struggling with it - dreading the upcoming holidays as well. Thanks for sharing your email, I will be in touch!

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As I write I am at hospital with my significant other. He cannot maintain his oxygen level. Prior to coming to the hospital his oxygen level dropped to 41. It was at that point, I pretty much demanded that he go to the hospital. It looks like they are going to admit him. I don't know if any of you are praying people, but please keep him and me in your prayers. We also have two small children, a 3 year old and a 5 year old. Please also keep them in your prayers. I will keep you updated.

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My sincere sympathy to you who have lost someone and for the ones that are going through the journey at this time. It is so hard to read the words written, but I am greatful for your honesty and for sharing your painful stories. My heart just feels crushed and tears roll down my face, but still would rather know, than not to know what to expect. Everyone is affected so differently and each journey is different from someone elses, but the ending seems saddly to be the same.

Doferg, I wish you all the luck in the world for your opportunity to qualify for a transplant and will pray things go well for you.

Many hugs and prayers for all,
Krys

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Doferg, positive vibes coming your way, I hope the hospital can sort him out quickly, it must be especially hard on you with the young children to take care of as well.

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I lost my dear dad to ipf on 6th october, 3 weeks ago. In june he was told he wouldn't live more than 4 weeks, which he exceeded. Dad carried on with a fairly steady decline since june. His mobility became very poor, he also got very confused. The only time ypu could say he was really visibly ill was his last week - he started using a syringe driver which the district nurses fitted and h
e was having constant diamorph, plus medication to prevent agitation and and a medication to assist with mucus on his lungs. I can honestly tell you witb my hand on my heart that he didn't kow a thing about it. His one fear was 'gasping for breath' at the
end. That didn't happen at all, he just started to peacefully 'shut down'. He was at home with his family around him, listening to
his favourite music. I was so scared beforehand but it was as as peaceful and calm as anything we could have hoped for. I know everyone has a different experience of this horrible disease but dad's passing ws very far from being the trauma i had imagined. You will be in my thoughts xx

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Doferg,
So sorry to hear about your situation. I don't know anybody knows what the "end stages" are. We are still trying to figure that out. My father has been ill for 5 years, in hospice for over 3. Continuing to decrease in functionality and increase the amount of O2 he needs. Last night I learned he can no longer walk back the hall for the bathroom. Every day he says it is his last. I feel so angry at the situation because we have had 4 "last birthdays", 4 "last Christmas'", etc. Every day feeling . . . what if he passes today. It is torture on the patient and the family. I feel for you and don't wish this journey on anyone. At least a cancer is measurable in stage 1 - 4, this sadly progresses at varying levels and at different rates of aggressiveness.
My prayers are with you . . .

Anglaaccn

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Annie, I am so sorry for the loss of your Dad. I was happy to hear it was peacful and that all the family was there, what more could anyone ask for in this situation. Thank you for sharing your story and I pray you will find the sunshine again soon. Time and loving friends and family is the only healing salve to help the pain in your heart. I am sending many ((HUGS)) to you now.

Ang, you are truely having a rough road to walk. I just can't imagine what it feels like to think everyday and every holiday will be the last. How sad for you all! I pray for peace for you and comfort for your father.

Love and prayers for all,
Krys

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Dear Deofreg,
Our prayers are with you!
Remember, God is with you also!!!
Candi

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My dad George 79 yrs old.was diagnosed with PF few months ago after a bout with pneumonia. He's been doing so well until recently he was under alot of stress due to a home invasion trial that happened 2 yrs ago. Now seems to be going downhill fast. So weak, can't hardly walk. Also has bladder trouble and can't hold his urine. We need direction of what way to go now. Primary care Dr, or lung dr. His levels have been in low 80's lately. Any advice??? Thanks!!

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Dear Bondled, So sad to hear about your Dad's progression. The one thing I can tell you is that pneumonia is sometimes the same as what the Pulmonary Dr calls a "Flare Up". I know from my husband, that everytime he has a flare up or pneumonia, he takes a step down. Recently he had an episode and he went from no oxygen to having to have it every night and also on exertion. So yes please contact your Pulmonary Dr ASAP and get him to the Hospital or his office as quickly as possible. The levels of O2 are a real problem and can make things much worse. Take care and let us know what is happening. I will say several prayers for you and your Dad.

Hugs, Krys

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