Wrestling with the End Stage of Pulmonary Fibrosis

I am so glad you wrote this. I believe I am starting into the end stage of this awful disease. I have recently had to increase my O2 significantly after a long stable period. I had to have five stents put in to open up some arteries in preparation for transplant but have to stay on blood thinners for 6 months, I'm not sure if I will last that long and then there is the wait for lungs.... I didn't realize you can ask for palliative care while still treating and still fighting. I have also told my hubby that I do not want to be on a ventilator if a transplant is not imminent. Thank you for your honesty with a difficult subject

Kim: I think you have done a nice job with a difficult topic. I would like to add that in addition to the lack of appetite, one of the driving forces behind the weight loss is the hyper-metabolism generated by increased work of breathing. For this reason, nutrition; PROPER nutrition, meaning high-calorie, lower carbohydrate foods (lean proteins and healthy fats) are crucial for maintaining weight and strength.

I'm a carer of a patient in the earlier stages of IPF and it was hard to read so I can only imagine how hard it was to write and research. I think you are very brave and thank you for doing it for me.

My wife and I are not sure if this is going back to the author of the above article. But we to are frustrated beyond belief. I had to find out what fibrosis was via the internet. My family doctor kept telling me each time I had a x-ray or C.T. scan that my fibrosis was getting worse, but never explained what it was. So I thought that I would end up on an inhaler somewhere down the road. It was only when I became symptomatic that I checked to see what it really was. We were shocked. And getting any information since has been like trying to get water out a stone. We are completely frustrated with the entire system...Thank you for your info and insight. This is probably the most informative information we have gotten to date, and honest. Thank you. Please continue to be honest with yourself and others..Not sure where you are located, but where we are facilities for palliative care and transplant are thousands of kilometers away.

I am a 67 year old woman who was diagnosed with PF in Jan of '17. Decrease in energy and shortness of breath plus occasional pain in my right side are the only symptoms so far. I had a brother who passed away in 2008 from PF and pulmonary hypertension. He passed less than a year after diagnosis. I feel he must have had PF a lot longer though. He was on oxygen the last 6 months and was put on life support at the end. I would never do that for myself and would not recommend it to anyone. I wish the the best on your journey!!!

Thanks for the info. I am now at 1 1/2 years since Dx. 6L of Oxygen when sitting still, 15L when I am moving around and I still pant for air with that. My doctor tells me the same thing about being "not there, yet" I do not want to one day up and pon day suddenly almost bedridden. I too want to know as well as I can. I want to know when I am in end stage so I can finalize all things I need to.

I think this was very helpful. I have had IPF since 2003. To a lot they would think how wonderful. Well in very many ways it was. I got to see my son graduate from high school. I saw my daughter get married and have 4 beautiful grandchildren ages 12- 1.

But now my oxygen has increased from 2 to 5 but with movement 7-8. I get so tired just to go watch their activities and shopping even with a motor wheelchair is hard work and no fun at all. PFT and timed walk is next week. Should be interesting since my numbers go to 70s and heart rate about 160+
Sounds like fun huh

I have pain from side effects from years of steroids. I have stress and compression fractures in my back, chest pains from my cough. I’m 55 feel much older and as you stated good and bad days. I will know more when all tests are done and I see my dr in December. Don’t think it will be good news but just have to wait n see. My prayers go out to all my IPF warriors and breathing buddies. Stay strong and make every day special. And always end with I Love You to those who mean the most. Love to all of you

Thank you Kim. You're strength to face forward and understand what may be ahead is an example of courage. Thank you. Sometime, I'd like to speak with you about your success in keeping liquid oxygen.

Kim, Thank you for writing about this and all the other articles you share with us that are Dealing with IPF. I appreciate this information very much. <3

I was diagnosed March 2017 with IPF. After two high resolution CT scans and one regular CT San, my pulmonologist confirmed the diagnosis. I started Esbriet in May or June. The actual disease is stable, no progression. But, secondary issues - bronchitis, pneumonia and rhino virus (common cold) have put me in the hospital twice! One month ago, my pulmonologist said I'm "at the six-month window". Now, I am on palliative care with every other week visits from hospice. I also made my wishes known to my adult children, my doctor and my pastor regarding no ventilator, DNR status, etc. At my request, my pulmonologist met with my children to explain the disease and answer any questions they had. He told them this has been very aggressive with me. The only way I am able to cope and accept this is my faith in Jesus Christ and knowing when I accepted Him as my Saviour is what is taking me to heaven. The Bible says "to be absent from the body is to be present with the Lord". When I pass through death's door, I will immediately enter heaven. I am a little apprehensive about the very end, but again trusting the Lord for the grace to see me through. My daughter and son's, their spouses and grandkids have been so supportive and helpful. I have moved to my youngest son's home, where I have almost 24/7 care, which is a comfort!!

Kim,

You are right ..the progression to the end is different for people. My sister went peacefully but it was a process of weeks. She was never uncomfortable.

Thank you brave girl. I don't know you, but I love you.

Kim

I continue to benefit in so many ways from your honest reflections on the greatest problems we face as we each navigate the challenges we face with IPF.

I look forward to hearing about your pursuit of palliative care.
I was evaluated for transplant and accepted in February of this year. I was 70 at the time of acceptance.

Since then the condition has worsened and I now required 15 liters per minute when moving and 4-5 liters at rest.

I'm continuing the challenges of attending rehab in order to maintain my strength.

Thanks again for all you do

Kim, Thank you so much for shining a light on many of the questions that I have about IPF. We're just coming to terms with it now as my husband was diagnosed this summer. Have found our physician is not as forthcoming with status / information as we would like - is this so we don't worry?!

Something I want to check into is body donation, starting to figure out how it is done etc. so far I have to pay for transporting body and cremation. Not sure if I can afford that, but I will venture on.
Thanks for your column.

My GP said when I was near the end of life, and if struggling, morphine would allow me and my husband peace from the stress on both of us. I thanked him for this because that had weighed heavily on my mind.

Went to lung Dr today heart, is good I'm going on 1 1/2 years of IPF, but I also have COPD ( 2 yrs ) Last month diagnosed with Rheumatoid Arthritis already very painful and starting to deform, the Dr said what is going on with my joints is also going on with my lungs. Scarring has increased. Right now I'm having a difficult time !! HOPE I'll be my up beat self soon. I'm going to chiropractor tomorrow for back out of place. I haven't been in 5years so I have to start as a new patient. I told him that was good cause that old one died and left me

Thank you so much for writing/researching this. I look forward to what you find out about palliative care. I am like you in wanting to know as much as I can, so I can prepare. Would like to have my ducks in order before I am unable to do things myself. Also, want to have built-in people contact when or if I reach stage when I can't go out much. Thank you again.

The elephant in the room. Thank you for writing this article. When my husband was diagnosed this was a big fear/question for both of us. When a member of our support group asked the question following my husband’s death I was more than willing to share our experience and almost everyone in the group entered into the conversation.

Thank you so much. None of us want to hear how bad it could get but all of us want to know, not only for ourselves but for our family and caregivers sake. I'm pushing onward but know that with my oxygen needs and significant lung function decrease, my time is short. I am fortunate not to have other health problems other than IPF which was finally diagnosed in December 2016 after years of mis-diagnosis. I have met with and am working with a palliative doctor to assist in coordinating with my curative doctors and addressing the emotional needs. I thought palliative care was hospice but they explained that is not what their role is at this point. They will assist when hospice is needed and the curative doctors are no longer in the picture. I told her I need her to help me understand when that time is comes. I think in some degree, I'm still in denial that this disease is actually going to cause my death. I get up, take a shower, get dressed and try to find something to occupy my day. I stopped working in May due to my O2 requirements being so high, 15-18 liters when active.

Dear Kim,
Thank you for the honest and transparent way that you speak about your disease and its effect on you and others. You a remarkable person. You truthfully tell it like it is, then offer your readers comfort in the form of a recipe for chicken noodle soup. I appreciate your thoughtfulness and your remarkable ability to balance truth and grace under such challenging circumstances.

We will keep you in our prayers, asking our great God to continue to give you His strength when you are weak, courage when you are down, and above all, peace in knowing that the final victory is already won, through Jesus Christ our Lord. Your writing is a blessing to others, including us.

Is it possible for me to send you a devotional? It's by Joni Eareckson Tada called "A Spectacle of God's Glory, God's Light Shining through Me Every Day." Perhaps you already have it, but if not and you would like a copy, I will send it out right away if you let me know where to send it. My way of offering encouragement to the encourager. : )

Kim,

I think you are one amazing human being. Thank you for sharing your story. I can't wait to make the chicken soup from your recipe. Chicken soup is for your soul !

Stay strong, and remember so many people care about you, including me.

God bless you

My mother has PF and it has been a great struggle for us to deal with as a family. I regard my mother as my life and I truly feel as I wont be able to live on without her. I am 23 and my mother is 54 and I've seen my lively, active, never sitting down mother, deteriorate to barely being able to walk without her oxygen dropping to 60s. We have been rejected by a transplant program with the hospital stating her case risk is to high but that did not stop us from seeking other hospitals that offer lung transplants. One year later after being rejected we have found another hospital willing to evaluate her case for a possible transplant. This still doesn't change how sickly my mom is but this gives us hope to keep on trying. But I truly feel anybody suffering with this condition should never give up hope and believe in the miracle of god. Science and medicine is backed with fact and evidence but there is still so much in the world that us humans cannot provide explanations for and that is where I truly believe is where gods miracles are. I send my love to all of you dealing with this hard time and please keep strong. I send my prayers and I ask god to give all you prolonged lives to stay with your loved one.

Thank you so much for this article. I have had stable PF for 4.5 years. It was found on a routine chest xray. I'm not on oxygen, but do get some shortness of breath with exercise. I'm still up and around, I'm 66 yo. I pray that my PF will stay stable, but no one really knows. I appreciate all you do on this site to keep people aware!

Thank you very much for your article and honesty and thank you for all of you who share your own stories in dealing with this horrible disease. I feel like I have learned more about this disease with my own research and forums then what the doctors have been providing. My 63 year old father was diagnosed with IPF in March 2017. He has since been checked in the hospital 4 times for pneumonia or other breathing issues. He is on 5L of oxygen. Just this past week the doctor started him on the OFEV medicine and I was wondering is anyone in this thread has been taking this and if they have had any positive results?? Mentally my father is not accepting of what he has and is upset that the doctors cannot get him better as he still feels strong physically. Since the one constant thing I have heard about this disease is that it affects everyone different in the progression of it. I am praying and hoping that we still have my father for years to come but we are also scared of the worst. Please continue to share any info or experiences you have. I wish and pray for the best to all of you as I can see see there are many brave and caring people dealing with the same things my family is dealing with. Thank you.

We watched my 63 year mother-in-law pass from pulmonary fibrosis in 2011. In April 2017, my 53-year-old husband was unexpectedly diagnosed with it. His case was severe (he had what we now know was an acute exacerbation in March). We had no illusions where this ends up. He doesn’t want a lung transplant (lung transplant doc said in June he has 12 months) and is too severe for the new drugs to work. He is just happy with to fish and be with his family and friends on oxygen. But I have to prepare for what happens before the end. He decided to move to our favorite lake, four hours away. I am stuck at my job for health and life insurance. Our sons who are in middle and elementary school are up with their dad. I call daily and come up on weekends. I am constantly on alert for signs that the end is near (he has lost 30% lung function since April, and now doesn’t want to get milk at the grocery store because he will be too fatigued carrying it into the house). I don’t want to over-burden our eldest son, but the Family Medical Leave Act is only for 12 weeks. That can go by so fast, I don’t want to start too early. So knowing more about the end signs is super important. My findings are they same as yours- it’s variable. I will be entering a cloud soon. I don’t know what it looks like inside, but I just have to keep going through it. I know what the other side looks like- it’s just me and my sons.

Hi I'm Lyle Romans and have fought this for 3 1/2 years I have lost 90% of my lungs to this disease and I'm 24 and I am in end stage Pulmonary Fibrosis I am to not able to get a transplant but because I'm young and a very rare case for doctors I get to donate my body to science I have become a motivational speaker who in my process have helped many but with the progressive of my Pulmonary Fibrosis I can now longer physically make it to shows anymore now I sing everyday it's not healthy for my lungs but I'm a fighter and will fight until my last breath

My father passes away on Aug. 9 2017 from PF at the age of 78, one month and day before his 79th bday. He was initially diagnosed with COPD and then PF in 2014 where he would use Oxygen as needed. Within the year he was on 24 hr Oxygen but low liters. His energy decreased and he had lost some weight. He could no longer take showers because the steam made it difficult to breathe even with the oxygen. My mother would have to give him sponge baths and wash his hair in the kitchen sink for him. Through the following year we could see a big difference in weight & energy. He increased his Oxygen level to 2-3 liters. He also experienced chronic diahrea. We aren't sure if it was from the meds in which he was on Ofev for this disease. He was then diagnosed with Congestive Heart Failure. He seemed to decline quickly after that. He had gone for cardio physical therapy for a few months before he got worse. He could only walk from the living room down the hall to the guest bathroom. My mom would have get him his clothes from the bedroom everyday. Walking to the kitchen or dining room became difficult as he would be very winded and experience a flushing feeling but not lightheaded. We aren't sure what caused the diharea and flushing but they suspect it was a side effect of the meds coupled with his disaeses. My mom was the primary caregiver and I would help when possible. It was a very difficult to watch a strong man and your role model become so frail and helpless. He'd sleep in the living room in the recliner because he could not lay flat and breathe comfortably.This was even before He could no longer walk to the bedroom. Then we found a pillow wedge for the couch. He would take daily naps and then not sleep until midnight or later for only four hours or so. He couldn't sleep well even with Ambien. He experienced anxiety from thinking about his illness and took Xanax when needed. I believe he became depressed as well. He then began to take Xanax to help him nap during the day. In June 2017 he had gone for a heart cath and was informed that he had massive pulmonary hypertension caused by the PF. Experimental drugs or test programs were the only option. The doctor didn't know how long he had to live. She said it could a year, several months or several weeks. He chose to try the experimental drugs but e had to wait for the health ins company to approve the drug; however, they were able to give him some samples to last about 3 weeks. They also ordered a home health nurse out at least once a week and a physical therapist out a few times a week. We had to get him a bedside portable potty for the living room as He couldn't walk to the bathroom anymore. He also began eating in the living room and not going to the table anymore. However, his spirits and energy seemed lifted. We met with hospice but were told he could no longer see his doctors and possibly not be able to get his same meds. Also, if he went to the hospital he could not continue hospice...insurance wouldn't cover both. His doc told him that he didn't need hospice since my mother and I were there to care for him and he could still get out of the house. However, it was a struggle and took a toll on him to leave the home. After the three weeks he ran out of the experimental drug and insurance still had not approved the meds. He began to decline...lack of appetite, taking more naps during the day and his Oxygen level was 4.5-5 liters which was the max on his home concentrator. He had seemed depressed so I tried to get him out of the house one day to see my new house that I had being built. He had been promising me for months that he'd make it there one day when he felt better. But that day he looked at me with a long face and in a disappointed tone told me he was never leaving the house again; and apologized. I knew something was wrong but was in denial thinking he was just having a bad day. Two days later I said good night and "I love you" as I did every night not knowing it would be my last time. (Note: my kids and I had been living with my parents since Jan) My son came down and woke me up around 1am and said my mom needed me. I went upstairs and found my mom trying to hold my dad up. He was slouched over on the chair and not responsive but gasping for air. I called 911. He came to and said he was fine and he didn't Want an ambulance and wasn't going to the hospital. We still called. He had gone in & out of consciousness again but came back. They came and got him prepped to go. Said fluid was building up in his lungs. They had to perform CPR in the ambulance and satblize him before they could leave. He didn't want to be resuscitated but never got around to doing his living will so the medics.told me they had to do it. They continued at the hospital but after an hour they had to stop. We lost him. They don't really know if it was a heart attack or what; but I know he was exhausted and his frail body couldn't take it anymore. I believe he knew it too when he told me just two days prior he was never leaving the house again. At the hospital as they worked on my dad, my mom told me that my dad had been coughing a lot more than usual and he told her it felt like he had fluid in his ears and he was trying to clear it. Hearing that made me think his heart was not able to pump the blood as it should (i.e. the pulmonary hypertension) and his body began to shut down causing organs to not function and fluid to fill his lungs/body. I could be wrong, I'm no doc. Ironically yet sadly we got a call from the insurance company saying they approved the experimental drug for my dad. I don't know if it would have even worked. Yes, he seemed to improve while he took samples of it; but I've read that often before people pass who habe a chronic disease they seem to get better for a period. We'll never know; but I do know my dad fought a hard fight. His mind was still sharp til the end and before they took him out to the ambulance he was still there. I held him in my arms trying to keep him sitting up and holding his hand. At one point I asked if he could still hear me and squeeze my hand if he could. He squeezed. This is a nasty disease and they never could tell us how he developed it...whether from having been around a farm & having birds/chickens, smoking when he was younger, asbestos in old buildings & factories where he worked while growing up, etc. I pray they find causes for this disease and a cure! My heart and prayers go out to all affected by it!

My husband was diagnosed with IPF in May 2013, he started Ofev in December 2014. He was stable until this last 6 months, he’s gone from 4 lmp to 6 lmp, 8 with exertion. His Pulmonologist said he had to try for a transplant now before it gets worse, even though he was about 20 lbs away from required BMI for a transplant. The transplant team decided to send him for pretranplant testing now so when he dropped that 20 lbs he’d be ready to go. Well, as a result of some of the tests done we found out there was scarring on his liver, he went for a liver biopsy where he was then diagnosed with stage 3 liver disease. Now all hopes of a transplant are gone. He’s definitely progressing, I’m just not sure where to go from here. I will call his doctor tomorrow, but I’m assuming he should stop his Ofev because it may cause more damage to his liver. How will I know when it’s time to get Hospice involved? We’re just both so disappointed.

Kim
First THANKS for the items you write. They are very helpful.
I am the caregiver for my wife diagnosed with IPF in March of 2015. She is on Esbriet and doing much better than we ever expected. Right now she is still active and on O2 at 2 ML. I do want to learn more about the future with this condition so I can be prepared. Are there websites or blogs where I can learn more about the progression of this condition. The PFNEWS articles on increased oxygen usage and possible solutions (liquid O2, Y tubes to double O@ output from 2 O2 concentrators etc) have been very helpful.
Thank you

Hello to everyone who is here.
I have been diagnosed two years ago with what my specialist called Interstitial Lung Disease. Both my lungs are affected and it appears to have started at the base of my lungs in the alveoli and now is halfway up my lungs. I was taking Methotrexate until six weeks ago for my auto immune disorders but my Rheumatologist said it was making my lung disease worse. I have Sjogrens Syndrome and Lupus and Hashimotos. I live in Western Australia but don't know whether what I have is the same as Pulmonary Fibrosis. Can anyone advise me please. I know my shortness of breath is becoming worse every week. I hope someone will read this and give me an answer please. I read your column and have great admiration for you and everyone with this horrible disease.

Hi Kim
This site is so refreshing in that it doesn't use doctorspeak, and it is much appreciated.

I also am looking for candid, end-stage information. It's not an uplifting topic and I apologize to anyone who my question may upset but I need to know so I can plan.

DX 12/16
RA with ILD
Immunosuppressant treatment
Not on O2 yet

I can cope with this disease because I have no choice, so I just keep on keeping on. What I need help with is coping with the end stage. It is not the fact that there WILL be an end that I'm afraid of. My concern is breathing.

I understand every situation is unique to each individual; my general question is, as one progresses through the final stage will I just lay there suffocating, struggling and gasping for each breath along with all that that entails,( unless some other complication gets me) or will I be able to breathe?

Thank you all for the help your responses provide.

Thanks so much everyone for your encouraging comments to me about this, and other columns. That encourages me so, as my column is a gift of love to my readers. Thanks too for sharing your stories...they are so valuable, and we are learning so much for one another. I wish I could respond to each comment, but I don't have the energy to. I value and appreciate each one of you!

Thanks George Clayton for your reply. Knowing that others are also coping with an illness that is least understood,I feel less alone.

Diagnosed in 1999 at the age of 18 , much struggled and reached 2017 lols, in all those years I just found that when in depression or over thinking or getting angry , the health become more unstable and with being happy or happy surrounding and positive talking health still remains bit stable, let's pray May god bless us all good health and some day again I can walk . It's not possible I know but the positive thinking brought me till here and hope it will help me again .

Wow finally found what is needed and looking for since diagnosis 2years ago. THANKS TO ALL SHARING THEIR OWN EXPERIENCES AND CONCERNS!!!!! This needs to be interactive to be able to comment directly to relevant comments. Some will help some won't, but finally i'm not alone!!! My doctor didn't give me this info on this site although I asked, I just kept searching, a God send!!!!!!!!

My nan is 92 and she was diagnosed with IPF over 5 years ago. It has taken those years for her to suffer with severe breathlessness, weight loss and fatigue, but still goes out shopping, and only uses small amounts of oxygen when required. She has just been prescribed morphine for her breathlessness and associated anxiety - which makes it so much worse!

Don’t give up hope, just because the life expectancy says a certain time after diagnosis, it doesn’t mean that. Make the most of every day, and try and remain positive, for yourself and for your family who will always be with you on the same journey.

Take care all.

Hello everyone, so glad I found you. My dad was diagnosed with PF about 6 years ago and didn't tell us. We didn't find out until mid-2016 when my mom went to his doctor appointment with him (they've been divorced 35+ year but remain friends). Dad is 75 now and has been on oxygen about a year and a half. He has been in the hospital twice since Thanksgiving for pain in his sides. He thought he was having a heart attack, but they said it's just the progression of the disease. I asked his doctor to talk to me in the hall because I feel like my dad doesn't tell me things because he doesn't want me to be upset. I asked her how long he has. She said he is a candidate for hospice. I said what does that mean. She said they have to believe he has less than 6 months left to be a candidate, and he qualifies. Dad has been on hospice since December and he also has a person that stays with him during the days. Mom and I switch days and go there with him until evening. He's still stubborn and won't let someone stay with him overnight. He's lost over 100 lbs in the last 2 years and with the cold weather he doesn't leave the house. He's also on Esbriet for about a year now. We were worried they wouldn't let him continue taking it on hospice, but they said it's not a treatment, it's for comfort. His pulmonologist said it's not really doing anything for him. It's more of a mental thing that he thinks it's helping. It's more for someone that has just been diagnosed, not for someone that has end stage disease. I'm glad they let him continue though.

I'm just overwhelmed right now. He's my dad. He's not supposed to get sick. I know he wants to cry, but he won't cry infront of me. He wants to be strong. I feel horrible for him. He worked hard for so many years to make sure when he was gone he could leave things for his grandkids. He wanted to teach them things, show them things, go places with them. But he worked every day, all day, and now he is out of time. A while ago he would tell me "when I get better I'm going to take the kids here or do this". Now he tells me "I wish I felt better I would do ...". Ugh.

He seems to be at a plateau right now. I don't know how long it will last, but we will be there for him.

Thank you Kim for your great story and updates and being truthful. That isn't easy, but those of us with IPF need the truth. I am 79 yrs old, diagnosed with IPF in May of 2017, began Esbriet in June and do feel it has stopped a lot of coughing. I use 2l of O2 most times, turning up to 3 when walking. Use a walker to carry oxygenator & support. Feel good when I read the above stories and realize I am lucky to have been healthy for this long. I was doing exercises 3x a wk and eating healthy. No longer able to do many exercises but do Respiratory Rehab ones. They are great & help lots.

My Dad is 75 years old and has PF. He was misdiagnosed with COPD despite failing an overnight pulse ox study and having pulmonary function test that demonstrated no restrictive issues but did clearly demonstrate absorption issues. Once the words PF came to light, his symptoms made more sense. He does not wish for any treatment as he also suffers with mild/moderate dementia and chose hospice care. I agree that speaking of whats to come seems to be taboo, even with hospice. Im a 20 plus year veteran nurse. I have found navigating PF and what to expect to be nearly impossible. I have watched him steadily decline since May of last year. May we had a vacation with no oxygen and just a little shortness of breath. August we had a vacation with 24 hour oxygen and a bit of shortness of breath with extended walking. In November we had a vacation with 4 liters of continuous oxygen, markedly slower pace, increasing shortness of breath and the need for more rest. And now, going out to dinner seems to almost be too much and he naps 3-4 times a day.
He is a very kindhearted and stoic gentleman. He tries his best to hide his decline from these old nursing eyes. He doesn't want to be a burden and he will never be a burden for me- I'm here for this journey with him.
As a nurse, my brain wants to know what my heart doesn't. I ask the hospice team- where are we on this journey? They seem to panic or tell me how much they love my father and he is their favorite patient. While that is all wonderful and they mean well, it is so not helpful. Its like the white elephant in the room. Lots of information and professionals to talk about other disease and stages and what to expect- why is this so different?
Thank you for your bravery and going where no one wants to go.

Thank you so much for the info. My brother has this and it is an Awful thing to deal with. We are just now learning more about the IPF again it is awful. God Bless you Kim. And all the others.

I am happy to find this site. God bless you all on this journey. My husband also was just diagnosed a couple of week ago after losing 25 lbs in a month and was very tired and week. The dr first diagnosed him with pneumonia and ordered antibiotics when he got worse he said it must be a virus. He continued to decline and after X-rays, breathing test aNo now a CT scan he confirmed PF. We have a appt with pulmonary dr next week. My husband is 74 with heart disease; had a stent in 2001, carotid artery open in 2012 same artery reopened in 2014, hi cholesterol. He has not been able to walk more than 1/2 block without having to stop and catch his breath and his hips hurting for about 3 years (I am not sure if this has anything to do with it). He is on oxygen at 4 on the home concentrator. After his appt with pulmonary dr we may know more but it is very difficult not knowing what to expect. I am a caregiver at my job so it helps. Thank you for all of your stories as they have answered some of my concerns.

Thank you for this forum. My sister is 51 and was diagnosed with IPF for now 10 years. She is in end stage. I have watched my grandfather, my grandmother, my aunt, my mother and now my sister die of this disease. Each one has had a different experience with this disease some taking years, some taking months. We definitely have a familial component to this disease. I am saddened because my sister went through all the testing to determine if she was a candidate for a lung transplant, we were told she had been listed, but now they have removed her denying her the only possible solution to this horrible disease. We are coming to terms, but it is very difficult. There needs to be more research done, new medicines, new screening techniques, new ways to combat this and eliminate it. I was told that more people are diagnosed with this than breast cancer and is second to heart disease. My sisters and I are diligent by asking are there any changes in our lungs. Most of us have GERD and there seems to be a connection i.e. microscopic gastric droplets being inhaled causing scarring, so we are all taking proton pump inhibitors. There was also a report published implying a connection between dental dust and IPF. I am looking for answers and causes, but I know I will not find them. My heart if filled with grief not only for my sister, but to all of you, both patient, family and caretaker. I ask for God's strength and pray for you too.

God Be with you all, hello my name is Catherine and my husband of 41 years was diagnosed with IPF after a diagnosis of severe Aortic stenosis. He received a new valve in Dec of 2016. January 2017 he was hospitalized for sepsis. That’s when the IPF came about. He went to Cardiac rehab for 10 weeks and had to use oxygen therapy. Then the oxygen was added during sleep 1 ltr. Pulmonologist put him on Esbriet and for the first 3 months all was good. Then we started to notice he had no desire to do anything but work and exist! He was clinically depressed and losing weight daily. All in all He had a good 2017 being oxygen dependent daily until Christmas Eve. He was diagnosed with double pneumonia. Dr sent him home on strong antibiotic even though his o2 was at 78% resting. Turn up the o2. He passed out on Christmas Day! Made the excuse he got up to quick. That night I called an ambulance. He spent 8 days in the hospital. Dr discontinued the Esbriet said is was causing him more harm being depressed. It has been down hill since. He had no desire to do anything but work at his computer and watch tv. He started falling and this week he fell and broke his ankle. Called an ambulance. He has a new diagnosis of Hypoxia with Syncope (fainting). Congested heart Failure. They gave him Lasix and 6 lbs decrease he began to feel better. But now he has a good excuse not to move around. He has to have the ankle surgically repaired this coming week. He is still weak. No one ( Dr) wants to tell the family what is happening. I’m so glad I found you all. There is so much to this hateful disease we need to know. God be with us all.

Hello,

I was diagnosed only a few weeks ago. This was found completely by accident as I thought my shortness of breath was related to smoking, which i quit before the diagnoses.
I didn't tell my doctor because i didn't think it was important.
I had stomach pain so i went in for an abdominal cat scan. They found nothing to explain the abdominal pain but they did spot two nodules on my lower lung. 1 @ 3mm & 1 @ 5mm. My doctor didn't seem too concerned about it as we know I'm prone to them from connective tissue issues. But, he ordered a hrcs of my chest & when i asked on our next appointment about the results he flipantly said ild .. "We'll visit this again in 6 months".. I searched it right there and asked well what is it. He said scarring happens in the lungs. But as he was typing what he was saying out loud was reason for concern. I left feeling stupid.
I came home & searched & searched & got angry & mad & searched some more...
What is this? Then i remember did he say... "Fibrosis"?
Ipf? Noooo maybe i heard it wrong.

Talked to my husband Who hunted and found a doctor 200 miles away that specializes in this & lung transplants.
I'm freaked out. I'm 49 & the breathlessness has gotten worse.
I go in 2 weeks to this specialist & I'm still freaked out.
Thank you for this blog.

I am the daughter of a pulmonary fibrosis patient. He was diagnosed in 2015 and basically went on about his business not seeing a doctor or doing any follow up. Now, 3 years later, it has reared its ugly head with a vengence. Suddenly he is using oxygen all the time. We are now seeing a pulmonologist and are praying he will have some things to try. My dad sounds like so many in that this disease suddenly went on the rampage. I know he should have been seeing someone all along, but my family couldn't convince him. My father is rather advanced in years, but is otherwise in remarkably good health. I am really scared of what the future has in store especially with our mother in such poor health. I am glad to have discovered this forum.

Can somebody help me understand if UIP (usual interstitial pneumonia) and IPF are the same diagnosis? My mom was diagnosed with UIP in October 2017 from a lung biopsy. She is on 2l of O2 at night and started Esbriet in January. She seemed to improve for a bit but symptoms have returned. My mom was given prednisone in October, however she had a severe reaction to it causing her to go into a catatonic state, along with hallucinations. She was in and out of the hospital and even held against her will (5150) for 36 hours then suddenly released when the psychiatrist said it wasn’t a psych issue, it was a medical issue (side effect from prednisone). Since then, Mom and I are having a hard time trusting doctors/medications. When we ask what to expect when the disease progresses, Dr response is “she’ll know when it’s getting worse”. We were also told that even if she were approved for a lung transplant, that she would be on medications after transplant, one of them being prednisone. After her experience with that, we are now feeling discouraged now that a lung transplant is off the table. Has anyone had a similar experience?

Kim, I want to join everyone else in thanking you for your articles. Why are doctors such wimps? I just wanted to know what to watch out for. How might this disorder progress? In 2012, I was told to expect about 2 years without a lung transplant, which I didn't qualify for. Well that didn't happen. Still here and filled with questions.
I was diagnosed with a variant of IPF in 2007. I was told it was environmental and would go away when the source was removed. That's pretty much happened until it came back in 2011. I went on oxygen 24/7 in 2012. I worked bi-coastal, flew with my Inogen One G2, went on a couple of cruises. The oxygen was annoying, but really just a distraction.
I retired in 2014 and moved from Southern California to Northern Cal to be near one of my sons, in case I needed help. In 2015, I had a major decline, like stepping off a huge step. Asked my pulmonologist if this was a step towards the end, but he declined answering. Started going out with a walker. 2016 and 2017, it happened again and landed in the hospital. Did the 6 minute walk and oxygen flow prescription went to 7lpm. This has been like a prison sentence. Can't use my trusty portable oxygen concentrator anymore. Can't get the walker out of my car on my own anymore. Had to get a power wheelchair and use a transport service to go anywhere. That's really expensive. So the last 4 months have been really an adjustment.
Got my power wheelchair that breaks down and fits in my minivan. Holds an oxygen tank that will last about 4 hours with the extender cannula. Safeway and Costco have grocery delivery services. Can get restaurant meals delivered too. Just need to find someone to drive me to Doctor appts and errands. So I can continue living by myself.
Then I found your article and I have The first 6 points on your list. I tell my dr. I'm tired all the time and sleep over 12 hours a day. Response: Oh, that's interesting. I say I'm losing weight and not dieting. Response:Oh, that's interesting. See you in 3 months.
You've helped me more than any of my doctors have!!
so thank you.

I wanted to update a previous comment I made concerning my sister who has IPF. I have read through the forum that people are concerned about end-stage. You will "know" when things happen and each case it happened quickly. My sister is now in hospice care. It is day 3. She is on O2 continuously and has been prescribed Ativan and Morophine sub-lingual. She is sleeping a lot and does not seem distressed but is comfortable. To all who are concerned...the hospital (for my family members who went this route) and hospice (for my sister) have been wonderful. All four of my family members who had/have this disease have been made extremely comfortable and anxiety free. Please know, it is harder on the family members who have to watch this disease play out. We are at peace, although hard to say good-bye.

Hi Kim,
I stumbled across your page because I was looking for any and all information I could find on IPF. My mom was recently diagnosed she is 74. When she first told me she was so nonchalant about it and I had NO IDEA how serious it was until she gave me an article to read regarding the disease. I was floored...I sat and cried on my couch..all I could see on the internet was 3-5 years and I fell apart. Once I came to grips with her diagnosis I started doing my research. First let me thank you for your candidness, it is greatly appreciated. Some of my family members don't want to discuss it but I needed to know. I have so many questions that my mom cannot answer and she has told me that she needs to do this alone. I told her we need to learn about it together. My mom is a very tiny women and in my eyes seems frail due to her size, however she does eat healthy, she exercise and tries to lead a generally healthy life. She told me she has passed all the tests but her xray showed spots....she cannot tell me if that is what the doc used to make is diagnosis or not. How do I convince her to let me be part of this. She is not an emotionally strong person and I think that is why she wants to keep me a bay...she is afraid to show weakness and fears she will if I am with her. My head fills like it is swimming with all this information..I don't know what to do to help or even begin to start this journey with her. She seems fine, she says she doesn't get winded, she doesn't have a cough and so far the tests they use for checking oxygen have all been A+. I have also ready that autoimmune can make IPF worse, she and I both have Hashimotos thyroidism, does anyone know if that particular immune disorder cause IPF to be worse? I apologize for all the questions but you guys are the first to offer any real answers...the good and the bad ones. Thank you so much and I pray for all of you going through this journey...sending nothing but positive energy to all!
Sincerely,
Michele

Love the information it was better than the doctors gave to me i would like more information thank you

For those curious about the last hours, my husband died at home from IPF in February 2015 ; we had help from 'hospice at home' care (England).
It was very peaceful at the end, his breathing just gradually slowed to nothing. He didn't suffer, he just drifted off.
I don't know if that is typical, I hope it is.
It appears that information from health practitioners is still sadly lacking in terms of what to expect. We, the novices who have to provide the ultimate support, are left to discover the hard way.

Hello to everyone on this valuable forum. And thank you Debbie and all contributors who have helped me understand more about my own recent diagnosis. I have learned a lot in 3 days or so and have progressed from being unconciuosly incompetent regarding IPF to at least the consciously incompetent stage. Will I ever reach consciously competent? Maybe, with all your help. I have passed the from the panic stage through denial and anger. I now accept that it is what it is. The question of why it is does not feel as important anymore. I am no longer in great fear of what lies ahead, but I am absolutely consumed with the impact of this disease on my wife, children and grandchildren. Hey, I'm 81, feel like maybe 40, fairly active (e.g., mow my own lawn, huff and puff, but have learned how to adapt and do everything much more slowly), my mind is still 20 or 30 years old. I feel so terribly for those much younger than I with so much of their lives still ahead. The biggest regret I have is the impact this disease is having and will have on my family.

I will try to post from time to time on my progress if it will help others cope. You have certainly helped me. Thank you.

Hi I am paul. Your article and responses were very informative. My case is different then most I will abbreviate to make shorter I was diagnosed with ipf in Oct of 2017 and In Feb confirmed by Cleveland clinic before I got ipf I was.fighting a few different diseases to include cad (coranary arteriey disease) i have 10 arty stents 2 on last month i have mvd(micro vascular disease) i have sleep apnea i have chf(chronic heart failure) ibs (irritable bowel syndrome) chronic fatigue and pain syndrom since i was 19 in military believe all of it caused by agent orange from Viet nam and now I have ipf i believe for 2 1/2 years my ox is 3l at home and 2 on the road ox does a lot of haunting going from day 92 to 82 and back to 97 all in seconds I had to get off esbriet because of terrible symptoms i am on cbd oil now its oil from the hemp and marijuana plant without the th the ox reading have improved dramatically over the last 3 weeks so I watching my ox numbers they don't lie everybody with ipf should have a pulse ox meter that's a good way to check how your doing hope I helped a little

Do the hands and feet feel cold near the end?

My father just passed away from this two days ago. He was diagnosed in June 2017. He definitely declined rapidly and memory loss and confusion started kicking in about four months ago. He got up to use the bathroom In the middle of the night and wasn’t wearing his oxygen. My mom found him on the bathroom floor. We are devastated. He was 78. He was on 6 L, but was having no pain. Depression definitely was an issue due to being housebound.

Kim, thank you so much for writing about this disease. My father-in-law has IPF and we have just been told that he will be put in palliative care soon. He had a stroke 2 weeks ago and is in the hospital. Some of the doctors want to send him home but my SIL is fighting for him and so is the respiratory doc.

I have a cousin that was diagnosed with IPF about 2 years ago. She was immediately started on oxygen and now is in the end stage. She lives a couple of states away from me, so I've only been able to see her twice this year. Plans for me to visit just today were asked to cancel because of my cousin's declining condition. She has one daughter and two grandsons and of course her husband and son in law. They stated that they wanted to help her cross over to Jesus with just this immediate family there. I truly understand. She is taking ativan and tablet form morphine. She's been on the morphine since February. It had become too painful to get up to use a bedside potty and a few months ago, she was in a diaper and had to have morphine in order to withstand the pain of just having the diaper changed. At this point, she is somewhat confused, forgetful, agitated and can barely speak because of lack of oxygen. I know she is on 16L of pure oxygen 24/7. She has been under hospice care since February. I wish there was something I could do. We've always been closer than cousins, more like sisters. We truly have a special relationship and my heart is breaking that I can't see her and most likely will not get to again. I guess I said all of this just to say, "Don't put off until tomorrow what you can do today." Her time is short and I know I did not spend enough time with her the past few years and that heaviness is going to be on my heart forever. Thank you for allowing people to post on this blog. There are very few people that I can talk about this with because they don't understand the disease. I don't understand a lot but I know what she is and has been going through. To all who read this and suffer with this disease, I will be praying for strength and comfort as you suffer with this or are a caregiver. God bless you.

My husband went into hospital with pneumonia the day before his 70th birthday in April,we were told he had a heart problem because bloods taken for analysis were showing signs of a heart attack.
Over the next 5 week hospital stay he lost 2stones in weight. We were still no nearer to finding out what was wrong with him,he was on oxygen and couldn't move far on his own.
He seemed to rally round and came home for about 2 weeks, then heart palpitations put him back in hospital.
From then on he went down hill very quickly, we still didn't know what it was he had.
Within 2weeks my darling husband had gone.
We didn't find out till the last few hours of his life that he had IPF.
So many questions and why's why so quick ? why hadn't he shown signs before ?

Thank you so much for sharing your story. I'm sure this was so difficult to research and write. My dad has not been feeling well for a long-time and has had many "issues" related to blood pressure and heart related stuff. He has had some stents put in over the years. Although he's been fairly private about his doctor's appts, most recently he did tell us he was diagnosed with PF. He didn't say much beyond that other than the words PF. He is a long-time smoker which doesn't help anything. This makes me so sad for him and for me and my sister. My parents divorced when I was four (I'm 43 now) and we've had to endure a long-distance relationship over the years. I'm not sure how long I'll have left with him. Thanks again for your story and many prayers for you.

Thank you for stories. My dad Diagnosed in April 2018. They gave him 3 yrs to live. He has 30% percent lung capacity, rapid breathing, weight 99 lbs, very exhausting for him to walk to the kitchen or the bathroom. Pretty much stationary. Oxygen is 90 in a stationary position. He just started taking steroid prednisone 3 weeks,He does have oxygen uses it about 2-3 hours a day. He don't feel a difference. I don't know what stage he is in, Severe or End stages? I don't see clubbing on his fingers. He seem stable since April not much changes only to the fact the breathing is getting more difficult. Prayers to you and the caregivers.

Thank you very much for the information and for all the comments, I wish you all the best.

My mom (74) was diagnosed about three years ago but because she also had a failing aortic valve and was in rough shape, they could not do a lung biopsy to get to the cause of the IPF, and they could not determine how much of her shortness of breath was due to the heart and how much to the IPF.

Unfortunately after she went through a valve replacement her breathing did not improve at all, in fact it started to decline rapidly. She has been on prednisone since November 2017 and on Mycophenolate for the last three months. The Mycophenolate has not had the effect we hoped for and she has continued to deteriorate. She had a crisis a month ago (suddenly was not not able to get any air in) and ended in emergency for 6 days where they stabilized her. She was on oxygen at the hospital (and has portable oxygen at home just in case) but they told her not to use the oxygen at home if she didn't absolutely need it (something about becoming dependent on the oxygen).

My question is, should she be on oxygen, even if not all the time, to help her? she insists that she shouldn't use it because that's what the nurses told her.

I believe she is in or is very near final stages, her dry cough is incessant and she can not take more than 3 steps or even stand up for more than a couple of minutes without her oxygen levels dropping dramatically. She is practically bed-ridden, has no appetite and gets severe indigestion when she does eat, is getting more depressed each day and her memory fails her. Your thoughts on this would be appreciated.

I lost my mother at age 60 at the end of June. She was diagnosed with end stage Pulmonary Fibrosis just 48 hours before she passed away. She was admitted to ICU on Friday night, and passed away Wed morning. Each day she continued to decline in every way including respiratory effort, memory, aggravation, hallucinations, and oxygen levels. It became apparent that she was not going to respond to treatment. They used the Bipap machine on her at times in ICU, but it stressed her out, and she was unable to communicate with us as well when she was on it. Even with Bipap, her oxygen levels did not stay adequate.The only other thing they could have done for her in ICU was mechanical ventilation, and she had already told us she did not want that. The Doctor assured us that she would not survive despite mechanical ventilation. So, we proceeded with Hospice because we wanted to keep her as comfortable as possible. My mother struggled with major anxiety, so keeping her comfortable mentally, and physically was a huge goal of ours. My biggest fear was that she would feel like she was suffocating at the end. Fortunately, she became unconscious before she had a chance to experience that, and I am grateful for that. Between the hypoxia, and the comfort medication ( hydromorphone and ativan) she was able to remain as comfortable as possible, and not consciously experience much "air hunger". Toward the end, family will have to choose comfort over consciousness...otherwise there is not a way to achieve both, and ensure that the person doesn't suffer. Aggravation, and hallucinations will naturally continue to occur toward the end as the body is deprived of oxygen (despite supplemental oxygen), and the best thing for the dying person is to relieve them of those stressful events...Hospice is not giving up on a person...it is allowing them to die with as much dignity as possible considering the circumstances. I hope this helps someone ?

My dad is at the very end stage of IPF. He’s 81 and can’t get around anymore, even to the bathroom. They are finally starting hospice (should have started months ago). My father is so afraid and his anxiety is overwhelming to him, but he refuses any anxiety meds. He is only about 120lbs or so
- this is a man who weighed over 200 his whole adult life. Air hunger is a terrible thing. Breaks my heart to watch him.

My husband was diagnosed with IPF in June, 2017 at the age of 63. It was clear to us that just being out of shape wasn't the entire answer for his breathlessness. In August, 2018, while in the care of hospice, he chose to end his life (legally). I am now 56 and a widow and I am lost. There's no other way to put it. There are two things I want to share. This condition is on the Compassionate Allowances List for Social Security, and, if you choose the same path as my husband, there is a less expensive version of the drugs called DDMP2. I mean to offend no one in offering this information. It is just information that he would want me to share with others who are diagnosed with IPF.

My 81 year old father in-law has PF. He has suddenly taken a turn for the worse, and is now on oxygen full time. He can only walk a short distance now, maybe 20 feet. He has canceled a scheduled visit, can no longer use stairs, etc. He is famously silent about his health, and is not nearby enough to visit quickly. Can anyone tell me at what stage his health is? To be very blunt, how much longer does he have? Thank you in advance for any help you can offer.

I am very grateful to have found this page, much like everyone else that has commented. My mum who is 83 was diagnosed with IPF around 3 years ago. Like most people here, we had no clue what it was and the shock of being told she had 3-5 years broke our hearts. In hindsight she’d had breathing problems before this and she thought it was her heart.
My mum is now bedridden (at home) and has morphine patches for her pain, occasionally she manages to use the commode that is next to the bed, but that now causes her too much distress as she gasps for breath with 15l of oxygen!
4 months ago she could still move around the house. It has progressed rapidly of late. She has 2 concentrator at 15l oxygen 24/7 and when she’s not moving her saturation is over 90, but the slightest movement to sit up, can take her oxygen saturation to as low as 48. The doctor has just said minimal movement.
My dad is caring for her in every way and he is exhausted, but says he wants to do it. My sisters also do as much as possible.
My mum is depressed and sleeps 80% of the time. She gets confused, nauseous and her appetite is disappearing rapidly. She just says all the time, I hope I’m not always going to feel as bad as this. It’s truly devastating us, we are a very close family. She knows full well the disease has no cure and what the end result is, but she says things like, I wonder if I’ll feel better soon, or if I have a good day, we can maybe get out for a drive somewhere. That makes me cry so much. She can barely talk she’s that tired.
To make matters far worse, she was put forward as a possible candidate for the treatment that can slow the progression of the scarring around 3 months ago when she was nowhere near as bad. But she received a letter last week that said.....
“The imaging sent to the specialist hospital, suggests that you may have Chronic Hypersensitive Pulmonitis possibly the cause of the fibrosis. Therefore you are not a suitable candidate. So palliative care is what’s needed now.
Just like that. Boom.
Wait! What!
Suddenly more reading on the internet to find out what that is.
So for 3 years it was IPF, now it’s got a cause, so it’s not idiopathic? Why did it take 3 years to find this out.
So if the CHP had been diagnosed/detected 3 years ago, she could possibly have been treated with steroids, we could have tried to find out what was causing the lungs to inflame and possibly she may never have gone on to develop fibrosis.
I am angry, broken and lost.
She is at end of life stage and none of us can believe what’s happening.
It’s a cruel disease and we are not told anywhere near enough about it.
There is so much to learn about this horrific illness and I pray there is a cure in the near future, so no one else suffers like my mum.
My heart goes out to all the sufferers and their families and I thank you all for your stories that have helped.
I am dreading what happens from now. Her skin recently was very clammy and cold. Does she have days, or weeks and how will she go. I don’t know and the doctors don’t say much at all.
It’s destroying us.
I am so sorry for such a very long message :( I needed to talk about it to people who understand.
Love and strength to all of you.

Can anyone address the financial aspects of running the concentrator 24 hours a day. Is there any way to get help with the electricity bill? I talked to my electric company and they don't have any special programs for people on medical equipment. I'm on Social Security and still work part-time, but don't know how long I will be able to work.

I found out in March 2018, that I have IPF I am 76 years old. I also have lung cancer. I just want to know what the end will be like. I can't seem to get the Dr. to tell me. I have a strong faith in God and I pray that he will be with me all the way.

I am 45 years old, recently diagnosed with IPF. Three years ago I had an abnormal chest X-ray due to a spot on my lungs. I followed up with a Pulmonologist who did an additional chest X-ray. He advised I had scarring on my lungs, prescribed an inhaler and another medication to help, but never specifically explained what it actually was. A year and a half ago I told my GP my chest felt really tight and that I couldn't breath, and what the pulmonologist had told me. My GP recommended weight loss, even though I specifically said my chest feels tight like when you have bronchitis. In July, I brought it up to my new GP, and showed him my fingernails were deformed looking. He advised it was "clubbing" and immediately sent me for a CT scan. After diagnosing me, he told me not to worry, I could live till I'm 80. My new Pulmonologist hasn't been forthcoming either...no one wants to tell you what to expect. Everything I've learned is from the internet. Also, I figure I've probably had this 5 years now, because looking back, that's when the shortness of breath started. It's disheartening that I don't know how long I have. I'm about to start on OFEV, but am worried about side effects. Thank you for your blog. I know now that I'm not alone in feeling like I'm in the dark. I don't know what to tell my loved ones even.

My husband lived 9 yrs after being diagnosis with IPF. Eight months before he passed he developed blood clots in his lungs, and it was down hill after that. He was told Dec. 29, 2017 he was at the end of his IPF. His oxygen level dropped and he was admitted to hospital, when they were unable to increase his oxygen, my husband had already talked to his doctor that he did not want to be on a respirator. That day they began giving him morphine and anti anxiety meds, starting about 1 pm. He was able to ask for water about 6 p.m. by 8:30 p.m. he took his last breath. He died peacefully as he water.
My husband read this blog faithfully and found it very informative and comforting. I thank all of you for that and wish the best for everyone.

Hello
I am a 62 yr. old Male with IPF. I was forced to leave my job of 23 years because of this illness and getting to this point has been a journey. I was diagnosed with the SRV Virus and that is when it all was set into motion. It took months to settle on the IPF diagnosis, but with the help of National Jewish Health, I am managing. It is 110 to NJH from my home but they have been absolutely Amazing, in all aspects.
I am another looking for the End expectations, like everyone else Medical People don't encourage it until you are near that stage. Also, the subject is hard to find.
I have finally had the courage to join the group and share my thoughts. I have been diagnosed as having less than 4 years so my time clicks away.
Thank You all for your sharing, It is sometimes difficult to read such tragedy but that is a future I must learn to accept. Blessings to All.

Thank you for your story, like you said Dr.s are really unwilling to talk about later stages or end stages of IPF, which has been truly frustrating for me...I just happened upon this article...because unfortunately I’ve been coughing until I just about pass out. So I was wondering what to expect.
So Thank You from the bottom of my heart

I lost my mother to IPF this past May. She was 85, but only diagnosed at 82. The doctors gave her one year to live, but she was a fighter! She lived with me, my husband and my 3 children for many years; the heartbreak is just terrible! Towards the end, I thought she just had a bronchial infection. After 7 days in ICU and many many tests, the doctors prognosis was grim, so she asked to just come home and be in her own bed. I stayed by her side, along with incredible hospice nurses, for 10 days straight. She passed peacefully on 20 liters of oxygen (doctor said it was incredible how we made that work) thru both a nasal cannula & mask. In her OWN bed (not a hospital bed) on her own terms. It was a gift to let her go with dignity ♥️ I pray for everyone affected by this awful disease; may you find comfort in knowing some of us will not rest till a cure is found. God bless you all ??

Dear PF warriors,

My grandpa passed away two years ago at the age of 83 from which we thought was IPF, however we found out later it was FPF. My grandpa was diagnosed accidently during an scan for other medical causes, 1,5 year before his death. He didn't have any symptoms during the first 0,5 year after diagnosis.

His PF progressed in periods of rapid decline and stabilisation. The first decline caused him to be dependent on 3 l oxygen while before he didn't use oxygen at all. The disease caused him to give in parts of his independency everytime. Driving his car, doing groceries, showering and during the last month he was unable to go to the toilet.

However he was never an old fragile man. PF is an devistating disease but he never lost his dignity. During the last month 10 l of oxygen caused saturation levels between 50-70 when moved an little bit. Two weeks before his death he decided that he wanted to end his live by 'death with dignity'. The only other option was going to an hospital and die on an ventilator, which was his biggest fear.

The last two weeks were one big party to celebrate his rich and wonderful life. We called lost friends from the army, all his friends and former neighbours. It was extremly hard for him to tell everyone goodbye each time an fried came visiting him, but meant everything for him. My grandpa was my best friend and he told me everything about his life and telling his biograpy gave him closure.

The day he passed away we were giving one last party for him with his children/grandchildren/great-grandchildren. He kissed his wife one last time after 65 years marriage and passed away really peacefully with an big smile on his face.

Since his death two other members of my family passed away due PF, however they were in the beginning stages of their disease and had an acute exarcebation and passed away in hospital.

Dear Kim,
How brave of you to offer and manage this forum. I admire how you are truly giving back to your community... locally and globally. My dad is 88. He was diagnosed with IPF 7 years ago and given 6 months to live. More than likely his PF is a result to Agent Orange exposure in Vietnam. At any rate, he was doing quite well for a long time and suddenly had to go on oxygen about 7 months ago. He was managing still well after this, maintaining trips to the gym, etc. Suddenly, his decline worsened. He can now barely walk 20 paces without feeling uncomfortable, much as others have described.

At his age, trials and transplants are out of the question and rightfully so. Nonetheless, we are hoping he can have as rich a life as possible in his remaining time. We currently live at 4,000 feet. The pulmonologist has said moving to a lower elevation will definitely help his symptoms. Have others done this?

I'd love to hear about anyone else who has considered changing elevation.
Thanks!

Dear Kim,
I so appreciate this web site! If my husband had lung cancer there'd be a panel of doctors, a treatment procedure, and if that fails, predictable steps to death. But with PFF we're just left to cope on our own. One specialist basically said, "You're very sick, I'll see you again in 4 months." I'm now applying for long term paliative care (at home now). We only get broad statistics about longevity from doctors, but we don't know what to expect. Knowing what to expect is important to carers and patients alike. It gives us the choice to face end of life issues together as we want to.
Thank you

Kim
I read your book, such a beautiful informative well written book it’s not what I expected (thought it was going to be a collection of people going through IPF and their journey’s) but I was not disappointed, you shared your heart, faith, and fears with us and solutions on how to handle ours. Thank you, I have God’s peace that passes understanding, which I am so blessed and will be eternally grateful and appreciate the Bible verses you shared and they strengthen my faith and warm my soul The chapter on oxygen is helpful at this point of my disease progression I’m on 3L continuously but can’t seem to get them portable oxygen so I’m home bound right now til I navigate the system or buy one myself. I’m sure I will reference your book many more times as I continue on this journey. Thank you again very good book well done May God continue to bless you and give you his peace

Hi,
My mother is also having ILD since 5 years,she is suffering more in these days she unable to walk due to breathlessness.she is using oxygen concentrator,but taking 2L ,she is feeling cough or some discomfort,so she wants to continue on 1L,Is there any cause to not able take high level oxygen . Please give suggestions.

My dad is only 58 never smoked, rarely ever drank and he has idiopathic pulmonary fibrosis and pulmonary hypertension. The hypertension was diagnosed first and he had major surgery in 2012 to remove a load of clots from his lungs. Hes been declining a lot recently as hes been on steroids since November and hasn't been taking any meds to slow the progression, should be trying a new one this Friday as the last time he tried in November it put him in hospital. He's been on oxygen for exertion for a while now and his levels have been rather low for quite a few weeks so today he had a review and hes now on 24/7 oxygen and I have a super bad feeling I will lose him within the year. I hate seeing how much this disease takes away your loved ones so slowly and you know there is nothing you can do to stop it. Trying to stay positive for him and we are all doing a fun run to raise money for action for pulmonary fibrosis in June and just wish there was more I could do.

My dad was diagnosed with pulmonary fibrosis in Feb 2019. He was put on oxygen immediately. He had been given Methotrexate for psoriatic arthritis. This was during what they thought was a sinus infection. He started the med and by the third week he was having increasing difficulty breathing. Was almost passing out, turning white. His pulmonary doc told him to stop taking the med. it was not replaced with anything else, and I am fairly sure his liver function was not tested after starting the med. he got worse and worse and would not go back to the doctor until his next appointment. He collapsed in the bathroom and passed out. Went into ICU, was given steroids and antibiotics. They never got him stable enough to do a biopsy to see what exactly was happening. He lasted about 9 days. He was not in much pain until the last hour, and I would have given anything to trade places with him. I do not know much about this med or this disease, and I don’t even really understand what happened. Not sure if I should contact the hospital doctor and let him tell me what happened or if they even know.

As I lay in the same room with my 70 yo mother who has end stage IPF reading the comments on how difficult it is to diagnose PF, it infuriates me. She began this long road of trying to figure out what was wrong with her approx 5 years ago. Every time they thought they had it figured out, her health would worsen. After going through testing to qualify for a liver transplant (mind that the doctors believed her non alcoholic cirrhosis was causing her low O2 sats although her liver scans & liver enzymes were not worsening), they finally found the IPF which then disqualified her for any transplant. It took years for them to finally diagnose her properly delaying any treatment to slow the progression of the disease. In October 2018 she was put on 6L O2 & could function pretty well. This is when they still believed her breathing was liver related. It wasn’t until January/February 2019 they found out she had IPF & by this time she was on 10-12L O2 & too weak for a biopsy. The pulmonologist told her she most likely had less than 6 months to live at this point. The best choice we made as a family at that time was to go ahead & get hospice involved. PF is a progressive disease with poor outcomes for most especially in the later stages. Hospice staff is there to bring meds, assess, consult, educate, & are available 24/7 if a change in status occurs. Since feb/March 2019 here is her progression: for 3-4 months she was able to care for herself & do all ADLs progressing from a walker to a wheelchair. As those 3-4 months progressed we noticed that she would sleep more & more & that the more difficult ADLs like showering would wear her out quicker than before. She engaged in conversation but at times wouldn’t make sense or would forget basic things. While seated her O2 sats would stay in the low 90’s on 12L O2 but activity dropped it into the 60’s & 70’s fairly easily. Mid June 2019 (5 month mark) getting out of bed became too much. Hospice has brought her a hospital bed, bedside toilet, & other necessary supplies for comfort. O2 sats staying in upper 80’s at rest but quickly dipping into 60’s when repositioning herself in bed or getting to bedside toilet. Most times she is confused, speaks too softly to understand, refuses to eat or drink much, and is easily frustrated. But we still share many smiles too. She is off all meds excluding comfort meds like narcotic pain meds & Ativan. She sleeps 20-22 hrs a day. She is dealing with depression & trying to say goodbye. I don’t know what it looks like from here or how much longer we have. My suggestion (if given the opportunity)is to choose a hospice provider sooner than later to reduce ER visits & employ a good caregiver team. Family, friends, etc. This disease is tough on all parties involved. Comfort should be a priority.

I'm currently on 5 l and I seem to be suffering shortness of breath when I exercise after reading your blog it sounds like boosting the oxygens settings will give me more flexibility and movement however I have been told that pulmonary fibrosis is the lack of converting lung oxygen into blood oxygen if that function does not convert from one to the other what does increasing the oxygen in the lung help in any way this seems to be a problem of understanding. if I can get past that I might arrange to get more oxygen. Am I at a dead end at 5 I'm a mechanic show I need somebody that speaks to me in terms of how does what do what. I have no desire to carry on when I have to guess for breath to use the bathroom anybody that can better explain that transitional process from long oxygen to blood oxygen please contact me I really would like to know at this point quality of life is not there JT

My father is in the end stages as they call it of ipf. It’s incredibly hard to watch someone so active and previously fit struggle. He is on 10L of oxygen permanently. The hardest thing as a son for me is how withdrawn he has become. I know he wants to be involved in his grandchildren and families lives but it’s just not possible. It’s as if he’s giving up. I wondered what I can do to at least try and get a smile out of him these days. I am truly sorry if this sound so depressing it’s just a bit tough at the moment.

Diagnosed almost 15 years ago. Pretty stable until the last year and a half. Progression has been pretty rapid, lately. The only final stage symptoms I've not experienced are blue lips/fingernails and clubbing.

Weight loss has finally stabilized, but I force myself to eat. I'm simply not hungry. When I do eat, it's like taking a strong sleeping pill. :) My body can't handle it.

I also like to know what is going on, and doctors get closed mouth about this, for some reason. Very frustrating!! At first, all I heard was false bonhomie and 'dont do this' and 'try that', and 'you'll be ok."

I had to try several doctors to get any answers, at all, and all that doctor offered was a diagnosis. Not even a prognosis or treatment options.

I had to research those on my own.

Very frustrating.

example: How can you prepare and update wills, prepare family members, etc., w/o prior knowledge?

My mum passed away 4 weeks ago age 55.She had slight trouble breathing a few weeks before and her GP said it looks like she could have fibrosis but wanted her to see a specialist at the hospital. A few days after her GP appointment she was admitted into hospital in an ambulance because she was struggling to breathe, this was on the Thursday. She was then put on oxygen 24/7 and did not eat at all and also had barely ate a few days before going into the hospital. They give my mum intravenous antibiotics to fight an infection they believed she had but did not know where the infection was coming from. They told my mum they would need to do a biopsy on the Monday and a CT scan to see how bad the scarring was on her lungs and to determine where the infection was. Over the weekend my mum found it more difficult to breathe and she was put on the highest oxygen they could give. In the few days that followed she was put into ICU (on the Monday)in an induced coma and paralysed which was supposed to be to give her lungs a rest and fight a supposed infection she had. We never got a chance to say goodbye to my mum before they put the tube down as she deteriorated very rapidly from going from the ward to ICU. We had to turn her life support off on the Tuesday night, 5 days after she had been brought into the hospital. She had suffered multiple organ failure which we believe may be sepis but the coroner has done an inquest into her death as he is not sure what the cause of death is. All of this was so sudden and we had only been informed a few days before from the GP that it may be fibrosis so we were just about coming to terms with that diagnosis and had no idea that when she went into hospital she would pass away so sudden. It has been absolutely heartbreaking and I think pulmonary fibrosis should be spoke about more as we had no idea of this illness and now it has taken my mother in the worst way possible.

I was told in Sept of 2019 that I have PF. So what, it pales in comparison to what my Savior Jesus went through. Get right with God and your future looks bright. I will go through my circumstance bravely as I put my trust in Jesus. I won't run from this adversity and will offer it up to Jesus for His purpose. Better the day of death than the day of birth. Thank you Jesus.

Husband diagnosed with PF six years ago lung cancer diagnosis Dec 6th 18 treatment unsuccessful and made fibrosis worse put on oxygen in April which went up and up in the last month and he became bedridden and unable to breathe passed at the age of 56 on 30/10/19 Heartbroken.

After two years of illness we were recently told that our Mom has pulmonary fibrosis and that she’s reached the end stage. I’m not sure what that quite means, the doctor told us that SATS of 88% is normal and that because my moms SATS have dropped to 40% and she is tolerating it, it’s characteristic of the end stage.
I know that she is finding it more difficult to walk, needs more oxygen (4 litres), eats less, is cold all the time has swollen ankles.
She’s still able to walk with a walking stick, but she’s very slow. I don’t know what the progression of the disease will be, how long she has left.
We’re all so upset about what has happened, and want to make her as comfotable as possible.
I’m trying to understand what will happen next to help prepare us as I think planning to give her the best care is all I can do for her now.

My mum (74) was diagnosed with PF 18 mths ago . She is now at final stage , I’m writing this from the hospital room as it was suggested she may not make the night .
Doctors seem to be afraid to talk to me to let me know what the final stages will be .
Mum was brought into hospital 6 days ago with SEPSIS , she Requested they stop treatment.
Prior to this mum was introduced to oxygen in March and levels slowly increased she’s now on 15l 24/7 , Sats 90 when still any movement drops quickly ,she was able to get about but very slowly , loss of appetite nothing has any taste , slight confusion, no swelling at all.
This is a horrible disease that no one really seems to be able to say what will happen next .
Mums fears are pain and suffocation DNAR signed , she sleeps must of the time now and I’m now just waiting for the final breath .
Thank you for this forum it has helped to know what to expect .

I know this post is old but thank you. My Mother didn’t know she had ILD/PF but last week went into the hospital after a period of weakness, coughing, vomiting and fatigue.
She was admitted January 23rd and told she had pneumonia then by the 26th was moved to ICU and by the 27th she was on 100% hot air flow mask & gasping for air. She died 2am the 28th at 67. It was a horrible sight to see her frail and desperately gasping for air. They had her loaded with steroids and antibiotics. Based on a Lung cancer screening two years prior we were told before she died that she apparently had it then. For a year she was fairly stable, then a progression and then a super fast exacerbation leading to death.
Awful disease. Just horrible. My heart goes out to everyone dealing with it.

Hello, My Mum passed away from PF April 9th. I am on this site trying to understand why we were so ill prepared emotionally. It is so important to recognize the stages of this disease, comfort the patient and acknowledge the impact this decease is having on the person. I read that most were shocked by the ferociousness of the end stage. If your loved one has this disease, take the time to be with them and cherish the time you have aside from the required medical appointments. My mother had PF for seven years and we were in denial of what was happening and now have to live with that.

My daddy passed away on 19th December 2020 from this awful disease. He was 70 and had been diagnosed in 2018. It was very quick at the end as my dad put of going on oxygen fulltime to just a month before he died. It is so hard to watch a loved one deteriorate near the end. Heartbreaking.

I want to thank you all for all I have read here. You are brave and have been through and are going through a lot. I understand. No, I do not have pulmonary fibrosis, my brother does. We live many states apart and do not get to see each other. I spend nearly every day looking for information, praying I will find something of a miracle. Logically I know that will not happen but I believe in God and what He can do. I am a retired RN and worked both in hospital setting and in hospice care. I wish so much that I could be there for my brother as I was for so many patients. I loved them all. Please know how much your family and friends care about what you are going through. Be honest with them because they are hurting also What they imagine is far more difficult for them than what you can share with us. God Bless you all. You are and always be in my prayers. LOVE

I must say it was such a relief to read all your messages. I am in the UK and caring for my husband with IPF. The thing that amazes me is that the hospital recommended steroids to slow the process down. However he refused, due to being on prednisone for 18 years to treat another virus. The use of steroids for 18 years is the cause of IPF. He is now in his 7th year and the cough is gradually getting worse.. You have all answered my question... "what happens after the cough gets worse"... thank you to you all and bless you all.

My comment is short,. I was diagnosed with IPF 5 years ago. Got Oxygen 2 years ago. All my paperwork is in order. Got Hospice 3 months ago. Gradually getting harder to breath. Use morphine every few days. Try very hard to control my anxiety. Mostly successful. Pure willpower. Try to be kind and gentle to my wife. Some chest pain today. Have been almost pain free for the entire time. I think that it is a day or so now. September 23, 2021.

My dad is 84 years of age and has pulmonary fibrosis. He got admitted to hospital for 11 days as he got so weak and had to sort his oxygen levels out. Now he has deteriorated really fast, hardly eating and not able to move about and getting really breathless. I'm now coming to terms that he may only have days left. My poor sons one who us still at home and youngest is in the Isle of Man and now had to warn them both that he has not got long. It's breaking my heart just putting this into words, my poor mum has bern his rock and now she will be losing her husband to this horrible disease. I feel for you all on here we are all experiencing something that is so hard to except.

hi, my uncle recently passed away due to this disease just wanted to know if you're there and staying strong

Hi everyone I am now 60 last year I was told I have NSIP fibrosis. I don’t really know what to expect. I have been put on mycophenolate to help with the lung swelling. Before this I had pneumonia a few times then put on steroids but that didn’t help. After having X-rays and scans and cameras they found ground glass and fibrosis. I don’t know if this is the same or different than pulmonary fibrosis. It’s all new to me all I know is my doctor said “sorry”. So it must be bad.

Just a general comment. I too am a IPF patient and understand the many questions that occur and visit our minds. Just a few thoughts that have come to me as I try to manage my life and my illness. After the initial diagnosis and my understanding of it, and this did not take long as my husband died from it in 2003. I decided to take charge of how I was going to live my life. Next, I reached a point of wanting to live well and then of also wanting to die well. Impossible, not really! But not easy I know. So, the main activity was to be informed. The Pulmonary Fibrosis Foundation, pulmonaryfibrosis.org, became my go to place. My Pulmonologist and I both learn from this, and this keeps me as current as I can be with all the variants that happen with PF/ILD patients. My diagnosis was in 2019, actual fibrosis seen on x-ray as early as 2015. Now it is 2022 and it has been an interesting trek. I have learned about myself, my illness and am trying to use that to live my time left with meaning. I also am helping to prepare not only me, but my family how to accept the grace of my life and death. It is a choice, so find the best medical care you can, learn all you can, live life to your fullest with what you have. I used to go everywhere, do everything and had energy to spare. Now I cannot but I still find that knowledge, volunteer work from home, zoom meeting from my chair, phone conversations with family and friends. Do I have times that I hate this, of course!! But I am not going to give up the joys of my life to my illness. I have to fight for this, but it is worth fighting for. I have a good idea of the end, since I was my husband's caregiver when he was ill and with him up to his death. We do not choose our method of death, but we can choose how we deal with it. I wish to the best of my ability to die with some measure of grace and with a family that has been prepared for it. When my new zip code is John 3:16 I will be at rest, and I want my family to know and understand that. So, at my age, I have come to grips, it is easier when you are already past your normal life expectancy, and you are in your frosting years. When you are younger it is much harder to face. My blessing is that my life is being impacted at a time where my acceptance of end time is much easier. Not any answers in all of this, just sharing a bit of my journey. I suggest that if you can do so take mental charge of your life while you can and set up a plan with some plan b, c and d as well. Share with family, share with anyone who will listen. PF/ILD and IPF and all of the other illnesses in this group need exposure to the light so that care is available, science is involved, and cures and treatments are developed. KNOWLEDGE and AWARENESS are the key to a better future. My prayers are for all with challenges in their life which could be illness or any of a thousand other things. May strength come to you as you travel your journey. Look at the time you have as a gift and treasure it as you move forward. Not everyone has the opportunity to prepare and manage their remaining days. I do Lord and I thank you for that. God Bless you and your families. In the name of the Father, Son and Holy Spirit Amen.

Sandy, give me a call when you want to talk. This is a reply to you note on this PF News site. I'm writing this on 2/23/22. Send me an email with your phone # and we can chat if you would like. We are all in the same boat and trying not to be a burden to those who care for us.
Earl

I have been under hospice care for a year. I also started out with 2 & now am on 8
I can't get around very good. I bought a 3 wheel scooter to move around the house.
I'm 85 years old today but know my time is getting shorter. But I'm just leaving my life in God's hand's. There are times when I when I wish it was all over as the coughing is tough.

J Ward, sorry to learn about your dad. I'm 83 and have been diagnosed with IPF since 2019 and I'm limited to about 20' in walking distance and I'm on 10-12L of O2 during the day and 6L at night. I'm not sure you can get a good estimate of when the end is going to be but one thing for sure is to know where you're headed when we leave this good ole earth. Jesus made a way for us and if we believe in that way, we're all set. And let me tell you, when we get to the other side there is no more IPF, that's the good news. For those of left here alone we just need to be ready, so when the time comes, we can be with them again. For now, if we can stay busy, helping others with the rest of our faculties that still are working that is the best we can do. Only God has our number and when He calls it we need to be ready to go. All the best, John 3:16 someone said on this blog is their next zip code, I like that!!

Cheryl,
Y connectors should be available from your concentrator supplier. We use 2 concentrators so we can shut one off with the switch and just run one at 6L and then in the morning turn on the second one at 4L. Our supplier didn't want to run one concentrator at 10L all the time so he supplied 2 concentrators at no additional charge. That is very nice and makes it easy for my wife to just shut off one switch at the end of the day. I find that the "D" tanks on a dolly give better reliability especially when there could be a power failure or are away from home and need a back up.

Thank you so much for your time in research and posting it. I have had PF for about 5 years was found in early stage because I insisted on answers and the doctor finally did lung biopsy. Anyway I have slowly progressed and last year went to Duke for testing for a possible double lung transplant. I was approved but made the decision not to go thru it because of the risk at my age. Decided to live the rest of my days enjoying what time I have left. I stopped taking a lot of medicines such as sleeping pills and antidepressants have lost some weight and I am feeling much better about myself. My husband and I started doing some traveling and just enjoying life when he had a grand mal seizure which was worsened his parkinsons to the point that I am now his caregiver. This has taken my mind off myself and I am doing fine. The Lord has given me the strength that I needed when I had to have it. Looking forward to every day we have left together.

When I first was diagnosed I blindly search for answers and found none so just recently I decided to turn to the internet for support groups and forums relative to IPF/PF as a patient myself. I am glad I did after I got over the initial shock of being told and then reading every medical venue that mentioned IPF/PF and saw the broad spectrum of what it is, what to expect, and/or what to do. So broad that anyone in their right mind could not begin to even make sense of it. The real clincher and what truly took me by surprise was to find out 3 years into my diagnosis that almost every doctor I have seen in these 3 years has been totally ignorant to what IPF/PF is and/or the prognosis and even diagnosis is. Of course only one of these doctors admitted to their lack of any knowledge of IPF/PF, the rest of them resorted to covering up their ignorance with arrogance and if pushed this arrogance could become quite insulting and demeaning, so needless to say for this reason and several other reasons not related I have been through about 7 doctors in 3 years and yes, I mean pulmonologist. The one doctor that admitted to not knowing jack about IPF/PF was a primary care doctor, not a pulmonary doctor but the rest were pulmonary and they knew very little some of them nothing at all. On a different site or forum, someone suggested to me that I seek out something called a "Center of Excellence" i.e. "COE" on pulmonary issues. I found that I really don't have any so-called COE close by but a secondary suggestion was Schooling Hospitals such as Shands or the University of Florida in Jacksonville etc... as they are closer to me I will let you know how this goes

Thank you so much! I have pulmonary fibrosis secondary to Sarcoidosis. I, too am a mental heath professional (Clinical Social Work) and continue to provide psychotherapy through a Telehealth service. I purchased your book and really enjoyed it, especially the part about considering a lung transplant as I am in the same situation. I don't think I'm going to opt for the transplant and found your discussion of that choice very helpful. This recent thread has been very helpful and I thank you for your honesty. Keep up your great work for the PF community!!!

Thank you for this website. My husband Russ started on it in 2014 when he was first diagnosed with PF. It definitely was a blessing in his life. He passed away peacefully in 2018 without ever having to be hospitalized. We were able to travel in our RV until 2017 when it got too much for him. Luckily he had a wonderful Dr. in Seattle during that time and he also went through all the testing for a lung transplant, but did not qualify. We had the benefit of hospice care his last 2 months. It has been interesting reading all your stories. I have kept this website available as it helps me keep up with changes that may be happening for people struggling with this disease. PF was unknown to me when we started. Our strong Faith made our journey much less strenuous. Our journey was difficult too with many ups and downs. I keep all of you in my prayers on a daily basis. May God's strength carry you through all your struggles.

Finally an honest answer! Thank you so much!