- This topic has 73 replies, 44 voices, and was last updated 1 month ago by
.
-
Posts
-
-
-
Hi @pammckee
Welcome to the forums! I’m glad you found us, though sorry you have to be here with a new IPF diagnosis. I did want to chime in quickly to assure you that the 3-5 year prognosis is not for everyone! Actually, that data was released before the anti-fibrotic medications were approved by the FDA for use to help slow the progression of IPF, and as a result, are very outdated. I know many people who have long exceeded that 3-5 year prognosis, not only living past it but not even requiring oxygen within that timeframe. Does this help?
Feel free to write any time and ask us questions. This is a wonderfully supportive platform!
Charlene.-
I recently had the same discussion with my Respirologist. I was diagnosed IPF ( they believe familial) 2017. Have been taking OFEV. My PFT is every 6 months with an xray every year. My xray shows no advancement of the scarring and my #’s on the PFT have not decreased. I am not on oxygen. But the effects of this Disease are ever present. I have one brother and one cousin also diagnosed with IPF. My brother is recently diagnosed and my cousin is at 7 years. My cousin is on OFEV and oxygen. My mother , three aunts and one other cousin (all deceased) all had IPF. They were dealing with this disease before any drugs were available. My mother and aunts all surpassed the 5 year mark ranging between 7 and 11 years. Only 1 was on oxygen. My other cousin though passed while waiting for a lung transplant at 3 years. It just goes to show that it certainly does mean that we all are individual and subject to the fate of not really knowing. I am grateful for being here, walking , talking and still breathing :-). And have the determination that whatever they say the expectancy may be…they will still be wrong. We have a truly awful disease but we are not alone in this world with our plight. I truly hope that you all surpass any estimate and you all live your life to the fullest and happiest that you can make it, given the hand you have been dealt. Cheers to you all.
-
-
-
Good Morning. I was diagnosed in March with IPF & ILD. I never heard of these diseases let alone ever think I would have a rare incurable illness especially at 59 years old. Hearing this news was very hard for me to swallow. I’ve since made progress. I was on Prednasone for 2 months i started tapering off 11 days ago . I was put on oxygen at the same time and still am on it . I will be starting Pulmonary Rehab soon hoping that will help me eliminate the oxygen. My O2 levels drop with exertion from 98 to 90 sometkes 88 with oxygen. I’m waiting to receive my prescription for Pirofedene. They say that medicine really helps slow down the scarring process. I glad I joined this group I like hearing stories about others having the same illness as me. There is hope for every one of us . I’m going through this with a positive attitude and determination.
-
-
-
I am very glad Pam asked the question and got Char’s response! I have also heard that 3-5 year prediction and worried about it. Of course, when you consider almost any disease and think about the ongoing progress in treatments, that is likely the case almost every time. It is very reassuring to hear you “say” this right out loud here. 🙂
And, welcome, Pam. I was diagnosed in November 2017 and have been taking Esbriet since August 2019. Still here and kicking, although maybe not at the same rate as before, but happy to have this forum to turn to for information and support.
Karen
-
My pulmonologist currently has two ipf patients who were diagnosed 10 years ago. The longest patient case he has ever had is 17 years. I have interpreted his guidance to believe that the disease acts differently in different people. It is also dependent upon how well you take care of yourself and any other ailments you might have. I myself was just diagnosed last August 2020.
-
- What reassurance Char and Greg & Karen ! Thank you ?
- It is a great uplifting thought to hold
- I work hard to keep a positive attitude
- because as a retired RN I have seen the power of positive thinking and taking the best possible care of ourselves
- stay safe everyone and take care
- Mary W
-
Hi @mary-ward
I’m so glad to hear some of this dialogue and the responses have been helpful! Of course no one can say for sure or speak to our life span with any sort of certainty, but I agree: positive thinking and optimism can go along way in navigating life with a chronic illness for sure .Taking care of ourselves both physically and mentally is equally important 🙂
Thanks for writing,
Char.
-
There are over 400 types of interstitial lung disease so that is why some will have a shorter life span than others. I believe that I have put mine into remission or stabilized it for over 4 years now. My IPF is nonspecific pneumonitis.
Denny
-
-
I was diagnosed in August 2019 and have been taking Esbriet since Dec 2019. ”Still here and kicking, ” like Karen have less energy than before, but happy to have this forum to turn to for information and support, as well. Do lots of outdoor sports to keep the body working, helps</span></span>
-
-
Hello, Pam and others – I have been blessed. When I was diagnosed in the spring of 1996 (25 years ago), I could not take more than a few steps without being breathless. I could not shower as the warm, moist air made it impossible to breathe. I coughed so much my throat was raw. I was prescribed a steroid. The pulmonologist gave me 6 months to a year to live; said my lungs were “filling up fibrosis.” I was very discouraged with my outlook, only compounded by suddenly facing family issues and upheaval in my job. The stress was incredible. I was encouraged to exercise, which was difficult. I pushed myself to bike and walk. I took breathing tests and image studies frequently, and persevered. This went on until 2012 when my pulmonologist retired and passed my case management to my primary care provider, who took image studies annually. Because I am a recent prostate cancer survivor, my PCP suggested I get a consult from a pulmonologist to establish a new baseline on my ILD. Consequently, I was prescribed OFEV, although I do not present common symptoms of the disease. He said the medicine can slow the disease, but he did not/ could not provide an estimated time of my demise. This caused me to do more fresh reading about ILD, and I found this Wonderful forum. Clearly, some of these diseases move incredibly fast, while others are slowpokes (that’s good). If a person who is newly diagnosed is able to exercise, I think this helps lung functionality, but I’m no medical professional so listen to you doc. Nothing can stop the disease. I’m 68 and am walking 3 miles a day. As for stress and anxiety, i have worked hard to manage theses things that weigh down my attitude. That said, Iam still dealing with the sticker shock spurred by the price of the prescription. I don’t know what God intends for me. I am grateful for every day.
-
Hello Mark B., what s great story. May you continue to persevere. So happy to you are doing well. Thank you for sharing. Mark
-
My mom was just diagnosed with pf and I found this forum in hopes that I could learn something that seems to help her heal or get better. My mom was working right up till she just couldn’t go anymore and went to the hospital. She was there two weeks and they sent her home with her oxygen and medicine which I’m not sure what they have her on. I am gonna find out, I don’t live near her sadly and so my sister is helping take care of her. She had an appointment today and just the walk to the car and the drive there was to much for her. They almost sent her back to the hospital cause she was collapsed in the hallway. Any advice will be much appreciated. She seems to be doing much better since she got home and rest and her oxygen was at the strength needed. I worry the Florida heat may not be good for her. Thank for any advice in advance. Best wishes to everyone struggling with this, my prayers and heart goes out but I am so glad to read that there is positive stories out there.🙏
-
Hi Jamie, fellow daughter of PF mom here. Sounds like your mom’s case is pretty similar to how my moms was. She was eligible for a lung transplant and is doing well three years on from that. Doctors might bring that up for discussion with her, and I’d be happy to chat with you about making that choice, caregiving, or whatever you need as you go through this with your family. It’s a good thing your sister is able to be there and help take care of her. The more hands-on, the better until she recovers some. Sounds like doctors are on to a good start with oxygen and medications but if she is feeling ill enough that she’s already been hospitalized, best to keep a close eye on her oxygen saturations and other symptoms. Acute exacerbations of this disease can come on quickly and end poorly. Not trying to scare you, just want you to err on the side of caution rather than a “wait and see” approach. If she isn’t yet under the care of a pulmonologist, specifically, get her in to see one. General physicians are usually not too knowledgeable about this disease as it is rare.
-
-
-
Reading these posts are so helpful and uplifting. I’m 71 and in pretty good health so it helps to know there are others living longer than expected.
Years ago my husband was given six months to live with cancer, but he lived six years.
My dad was told he had five years to live with heart failure and he lived 20 years.
Hope is a wonderful thing. -
Sorry about your diagnosis Pam. I too have asked the question, but can not get anyone to provide realistic statistics, which must exist somewhere. “Everyone is different”is true, but there must be some information that will help those with IPF evaluate how to plan their future. Rather than discourage me, it would help me feel informed and therefore empowered. Clinical trial reports from many countries currently use 3-5 yrs in their reports. If 5-9 yrs with the two fibrotic drugs is a better figure, why is it not published?
Stay strong, optimistic, and positive! -
I have IPF. I was diagnosed in 2012 and began taking Ofev in 2018. I went on oxygen for sleeping in 2018 and use it if active and exercising. I too received the 3-5 year and it was scary. What you have to understand is that everyone is different and there is no way to predict. I know totally ignore the 3-5 year guestimate and feel great and plan to keep on for many more years.
-
Welcome Pam to the forum. My husband was diagnosed 4 years ago and we read with dismay the 3-5 life span. He has been taking Esbriet since being diagnosed, sees his pulmonologist every 6 months and is in great shape – no oxygen. I too wish that the outdated information would be remove especially since there is now medication that works to slow the progression of the disease. Ignore that info – we are!!!
-
Hello everyone. Just reading all the predictions everyone has been given. I too was told 2-5, which put me into a shock. All I could do was set there with my mouth open. It will be 1 year this next month. I am trying to stay active but the cold is keeping me pretty much inside. I would love to go for a walk, but the cold, even on a short 1 block walk to the mailbox, freezes my oxygen line. With my fake knee, the cold freezes it up and I cannot move. So, the boring inside of the house reminds me of the hospital room. I do the exercises I did in the hospital to keep some movement. My wife asked me the other day if we are going to do the landscaping we had planned on doing last spring before I got hospitalized and I told her I sure hope so. Working in the yard has always been my fun thing to do. So, we’ll see if it comes to pass. Everyone, have a great weekend and yak at you later.
-
-
I’m an 83 year old female who was diagnosed with IPF in 2008 and was given 2-5 years. Surprise!!! Here I am still kicking. I have slowed down this past year and have had some progression and have to decide whether I want to go on Ofev. I’ll probably try it but if the side effects make me too sick I’ll just take my chances. I still feel fine just can’t do the things I could do a year ago. I have a cough and I’m on oxygen 24/7. Once Covid is over I plan to get out and get active again. Oxygen makes it possible to stay active for me. Stay positive!!!!
-
Thanks for asking the question Pam, and for all uplifting comments. The 3-5 year is the first information you get after being diagnosed, both online and also all information from the hospital. It`s so scary so getting balanced information is very helpful. I try to keep a positive attitude, eat properly and work out as much as I can. This group helps a lot, so greatfull to be part of it. I understand that a protein rich diet is the best. Any experiences in terms of diets? Stay healthy and have a great w/e. Best regards, Ida
-
I am a 67 year old male and was diagnosed 4 months ago. I have resisted my doctor’s advice to start taking Ofev or Esbriet in recent weeks. He thinks I should choose one of the 2 to avoid an acute progression since it’s in early stages now. I plan to see another doctor at Baylor College of Medicine before I do that. I am worried about the side effects of both of these drugs. I made big dietary changes in recent months and focus on anti inflammatory products such as ginger, turmeric, cinnamon, green tea and EGCG capsules. I avoid coffee, milk, tomatoes and red meat. I also work out at least 5 times a week. My oxygen level is normal (high 90s). This group has been a godsend for me. You have given me inspiration, hope and support I needed to be better informed. Thank you all.
-
-
Manzurul,
I too will be 67 in a few months, I was diagnosed last year, started Esbriet September or so. My last two visits to my pulmonologist have shown steady gains in my pulmonary function tests. Is it the Esbriet? Is it the fact that I have kicked my exercise routing up a couple of notches? Is it the Galapagos GLPG 1690 clinical trial I was involved in? No one can say.
I am not pleased to be on any of these drugs. During discussions with my Galapagos Clinical Trial nurse, I shared this thought with her, and because I was showing improvement, I indicated that I was considering getting off these meds. Her response was interesting: her opinion was that IPF should be treated in a similar fashion to cancer, in that we should throw everything we have at it in the interest of prolonging quality of life. I thought that was interesting, and gave it great consideration, and have decided to continue with the path I am on, without the Galapogos trial as it has been discontinued. I have read and heard in many places that one can’t predict the rate of decline for IPF patients, but that often once the decline begins, it is steep. This was part of her reasoning.
I will continue with Esbriet. The side effects are tolerable, the expense isnt’, although I have the good fortune to be able to absorb that expense.
Everyone reacts differently to IPF, so I have been told. I am going to continue to fight it with every tool I have.
Good Luck!
-
-
Great positivity here! thank you…
I need a target. i am 73 years old ( shh, don’t tell anyone ) diagnosed with IPF September, 2020 and went on Esbriet. Do have side effects from the Esbriet, but want to know how others are doing walking ( now on a treadmill in doors because of the cold )
I walk for 30 minutes at 2.8mph on a slight incline ( no.4 ) and occasionally get down to 90 O2, when I ease up for a bit and then continue. What are others doing? What should be my target?
thank all again
-
Hello Carlo, in order to get the information you desire I suggest you participate in phase 2 pulmonary rehabilitation. They will be able to gauge your performance and they will provide you with the METS required and desired. Here is a link explaining this process. https://www.health.harvard.edu/staying-healthy/met-hour-equivalents-of-various-physical-activities
-
-
Pam,
Esbriet received its FDA approval January 11, 2017, OFEV in 2014. Both pretty recent. My pulmonologist told me the 3-5 year expectancy is a bit of an artifact from the days before either of these drugs were available. As you can tell from this forum, there are very many people that have far exceeded that expectancy. Keep educating, keep positive, and don’t let it get you down. I think we all plan on hanging around longer than 3-5! -
Great topic! I was diagnosed with IPF in July of 2020. I have been on Ofev for 2 1/2 months with very little side affects. I think the reason I have minimal side affects is that I take my pills as close to 12 hours apart as possible. When I was first diagnosed with IPF, I was pretty down after reading about the life span on the internet. But after reading comments from others on this forum, my outlook turned positive. I’m going to live as long as the good Lord wants me too. And I am going to live as good of a life as possible. I don’t take breathing for common anymore. I thank God everyday.
-
Hello John, you have a wonderful positive outlook. Taking your medicine on time helps with the efficacy of the medication. You are right about the gastric effects. Some people do everything right, eat healthy and eat the small meals and have disheartening gastric effects. Others can eat pizza and wings and the medicine doesn’t have a negative effect on your digestive system. Take care, Mark
-
-
-
I assume that these life expectancy estimates are based upon real statistics. My father died from IPF in may 2003–and my recollection was that the 3-5 year window was what was contained in the literature back then. But so much of this is based upon when the diagnosis occured. My dad was misdiagnosed at the va –and on december 20 2002 was told by a private practitioner that he had end stage ipf. My point is that cases like his greatly reduce the prognosis–and back then there was no treatment. He was put on a drug to suppress his immune system (from the mayo) which hastened his demise. From reading this forum things have greatly improved.
-
Hi Steven, much of the literature still contains the estimated 3-5 years expected life span. I don’t know why they wouldn’t move to using a medium rather than an average for measurement. I do think many hospitals and institutions are trepid in their estimations until a large respected institution changes their numbers. I think a valid and reliable research study would facilitate this change as well. Thank you Steven for your input, Mark.
-
-
To Pete and all those who contribute,
I have gained so much from your shared experiences. I feel I belong to a community who are caring, selfless and pulling for one another. I am in early stages and the journey ahead will be long, I hope. And from what I have learned here, I will benefit in easing my burden. I want to quote the words of our national poet, Maya Angelou, “I can be changed by what happens to me but I refuse to be reduced by it.”.
Thanks, everyone.
-
My local pulmonologist stated my life span would be 2-5 years. However after getting a second opinion at a Center of Excellence (Univ. of Pa.) and after they doctor there reviewed my lung biopsy I was told I had over 10 years plus. So far it has been 5 years and still on Esbriet and stable. One thing to keep in mind sitting or lying around does not help. Find lung exercises to do and walk. Depending on weather I walk 25k-40k steps per week. YOU can do anything.
-
I was diagnosed in June 0f 2018 and told 3-5 years. I probably had this in 2014 or maybe earlier. Didn’t know until I went under for another procedure. I was initially on oxygen when sleeping, but upgraded to 24/7 in 2019. I am currently on 5 lpn pulse when out and 4 lpm when exercising. I was put on the transplant list in January 2021 as my doctors wanted me to have the surgery when I was more healthy. I will be 72 in June and have a positive outlook on things. The 3-5 year prognosis is debatable, depending on when they actually catch this. Stay positive and hope for the best. Listen to your doctors.
Mike Moses
-
I am 74 and was diagnosed Oct. 2017. Like just about everyone, I was told the median life expectancy was 3-5 years. Since I had no symptoms and my diagnosis was initially based on a CT scan of my abdomen due to kidney stones, I was told that my condition was caught early. To this day I have not received any prediction on how long I might have.
Aug. 2019 my sister (she was 77) recieved her IPF diagnosis. Six months later she passed. I later found out she had an earlier Enphysema diagnosis due to smoking. Being my sister was an extremely private person, she lived in another state, and we only talked every few months or so, she shared very little about how serious her condition was. I knew she was sick, but I had no idea how sick and that she would pass within 6 months of her IPF diagnosis. I suspect her Enphysema had as much, or even more, to do with her passing than her IPF.
I have no doubt my sister’s doctors told her how grave her condition was and possibly told her how long she might have. I can only imagine that it was much less than the typical 3-5 years.
-
I’ll share my story. I was diagnosed with IPF in 2011. For some time now I’m been waking up thanking God for my “shiny new marble” and asking God to help me be a blessing to others this day. Several years ago I read of an individual who studied the life expectancy actuarial tables to determine the number of days, on the average, that he had to live. With this info he purchased that many marbles and placed them in a large glass jar in his downstairs workroom. First thing every morning he’d go down to his workroom and remove one marble from the glass jar and thank God for the new day asking Him to make him a blessing to others throughout the day.
In my case, as I said, I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) in 2011. At the time webMD projected the longevity for IPF patients to be three to five years after diagnosis — just as many of you have read. It did not take me long to quickly figure out that my glass jar had been empty for quite some time. BUT every morning I can thank God for my “shiny new marble” — another day given to me as a gift from God. Daily my prayer is to be a blessing to those around me. God certainly is Good! These marbles help me to keep life in perspective!
So yes, one can live quite a while with IPF. I’ve been on oxygen now for about a year and doing quite well!-
You have a great attitude @dongraybill ! I have no doubt that will serve you well throughout the course of your journey with IPF. Thank you for taking the time to write and share your story — I appreciate your attitude and positivity.
Char. -
-
-
Randy, I am not sure what you were diagnosed with or if you are taking either Esbriet or Ofev. My husband was diagnosed in October 2014 and he started out on the generic version, Pirfenex and then on to Esbriet; 6 years together. He is doing remarkably well and is Pulmonologist is very pleased as to how he is doing. He also got the 3-5 years statistics which obviously he has surpassed. I know that someone was frustrated that no one gave a study as to why 3-5 years is not correct anymore. I am not sure what or if there is a study. My husband asked his Pulmonologist if Esbriet is even working and not just all the other things that come in to play. The Pulmonologist just asked my husband why he would get off a winning horse?! I just know he is doing well and really no side effects other than some days he feels “fuzzy” which does not last longer than a hour or earlier on he got a bad sunburn. He now wears sunscreen. I hope this helps to remain optimistic as we are.
-
-
When I was diagnosed with IPF (over 5 years ago) I, too, was totally set back by the 3-5 year median life span after diagnosis. Over the last 5 years I have determined the following facts:
1. The statistical analysis apparently was conducted on data from 1992 to 2003
2. Diagnosis of IPF was apparently made much later in the progress of the disease because of the lack of information about the disease and the inability to use equipment and methods that we now have to diagnose much sooner in the progression of the disease.
3. There was no treatment specifically for IPF. Treatments that were used were usually based on other forms of fibrosis which have since been proven to be ineffective for IPF. We now have two drugs approved for IPF that have been proven to slow the progression of the disease.
4. There have been no further studies on the mortality so we keep getting quoted the 3-5 year life span because there is no other study using more up to date information.
I challenge the Pulmonary Fibrosis Foundation to commission a study that will provide much more current and reliable information. Updating this outdated information is really critical for those who are recently diagnosed. You just have to look at the posts on this site and other forums to see the anguish that quoting this completely outdated information creates.
-
Hi William,
Thank you so much for sharing these important points about the 3-5 year prognosis! We often talk about how they’re outdated on this forum and it’s important not to go by just those numbers but we don’t often elaborate on why, so your post is very helpful. Thank you for taking the time to write it! 🙂
I’d also like to see the PFF amend their information on this. Hopefully soon!
Char.
-
-
-
Hi, The 3-5 years is nothing but an old guideline that some doctors dont bother to correct so no one holds them accountable for anything that comes out of their mouths. The reality is that the 3 – 5 years was inaccurate even in the old days prior to new medication, because not all patients were diagnosed as soon as their disease started, many were late diagnoses which meant that IPF patients on average lived longer than those 3 – 5 years. So now that there are earlier diagnoses and better medication the life span is for sure longer than that. In any case, i believe the most important thing is to stop listening to these generalisations and live your life as best and as active as you can. Be proactive with your doctors, do some research and learn more about things you can do and take it one day at a time.
-
-
-
Jim–I am so sorry to hear about your prognosis. But for many the timing of prognosis is everything. Let me re-tell you my story. My father died of ipf in 2003. His sister died of ipf approx 2018. MY dad was 72 when he passed–my aunt was over 80.My dad was misdiagnosed by the veterans administration–when he received a correct diagnosis he was end stage—less than 6 months to live. So what have I done? I went to my primary shortly after my dad’s death (2003) and had a c-scan ran. It was negative. In 2019 I went back for another c-scan also negative. I also “blew” into the breath machine—which by the way they do not explain clearly. when you think you are no longer exhaling–you actually are because the instrument is so accurate. Diagnosis and early diagnosis is everything. My dad’s physician told him this nasty stuff was growing in him for a decade. How would he know that? I do not know–but he is an expert and was strident in his statement. Everyone should keep the faith.
-
Hi everyone,
I believe the 3-5 years estimate given by a pulmonologist is a disservice to most patients. When I was diagnosed on October, 2020 and told I had 3-5 left to live, it triggered a series of reactions inside me which were mostly harmful. Fortunately for me, I had a supportive family who refused to accept this and pointed to my overall health. Since then, I have done everyone in my power to feel better. I had my 2nd set of breathing tests and 6-minute walk test last week. My lung functions have become stable and moving in the direction. My 6-minute walk test results also improved from 600 meters to 660. I walk 60k-70k steps each week rain or shine, freezing or in humid Houston heat. I am staying away from medicine for now. All the posts here have been a source of inspiration and encouragement for me. My thoughts and prayers go out to all those who are facing acute conditions. I believe most of us will easily beat the 3-5 years prediction and far outlive 5, 10 or 15 years. I know I plan to and unwilling to surrender to this terrible disease.
-
Manzurul, that’s terrific! How do you get the inspiration to walk every single day? I am a 73 year old and was diagnosed in September 2020. I am struggling at 3 times a week. I walk at 115 steps per minute for 40 minutes at 2.8mph. So that would be 13,800 on my treadmill. Your total steps at my rate would be almost an hour and a half per day. Geez, if I could get to half rate??
-
Hey @Carlo that’s not bad at all! 2.8 mph is a really healthy pace. 🙂 And I think if you tracked your steps throughout the whole day (fitbit, or pedometer) you would be surprised at how many you take outside of dedicated exercise time. That said, I also think it’s great that you’re committed to 40 minutes 3 times per week. Keep up the good work!
-
-
-
I was diagnosed in December 2020with a 50% life expectancy for 5 years. Very upsetting and depressing. However after seeking more info, it seems from and old CT that this disease started in 2010. That means eleven years ago. Also more tests showing it has progressed but not that bad as yet. Will be taking meds to slow it down. I plan on will sticking around long enough for a cure.
-
Augusta, Glad to hear your optimism! I have a similar history. I was diagnosed in September 2020 at which time it was noted that I was probably with IPF in 2015. There has been some progression in the disease in the 5 years but at a slow pace…good news to me. I have a CT scan and breathing tests coming up in April so we will see what effect Esbriet has had on the disease progression.
Live one day at a time as much as the good Lord gives you…..
-
I lost my husband, my soulmate last week to a combination of heart failure and PF. I am posting to actually let those with this horrible disease know that the lifespan is variable and not written in stone. My husband was diagnosed over 20 years ago when a heart attack revealed the crackling in his lungs. We had an amazing life and shared many adventures together. I can’t say the end wasn’t hard, but we did finally let hospice (frightened as we were of that very word) come in to help. So keep fighting and God Bless y’all.
-
@edot Edward, I am so sorry to hear about the passing of your husband. It makes me happy to hear that he lived a long and adventurous life after his diagnosis. This disease is so unpredictable, it’s nice to hear stories of people who prove the prognosis wrong. I hope that hospice, as scary as it can seem, was a help to you both in making this transition. Sending you love and comfort during this time,
Christie -
I’m so very sorry for your loss. Please know that I am thinking of you during this difficult time. Amid your grief, I am so grateful you’ve taken the time to write us and help others based on your husband’s experience. I agree with you that lifespan is a variable, and it is always helpful to hear of others who endured IPF much longer than the prognosis. Thank you again and take good care of yourself.
Charlene.
-
-
-
Pam,
Sorry to hear about your IPF diagnosis. I was diagnosed in November, 2015 & was totally shocked to read the 2-5 year prognosis! I cried every day for the first 6 months. My pulmonologist is very pro-active & ordered bloodwork to rule out about 40 autoimmune disorders since I had no precipitating factors. She also referred me for a barium swallow, which showed that I had terrible GERD, in spite of no symptoms. My GI followed up with an endoscopy which confirmed a “silent” GERD diagnosis, & I started on Prilosec twice daily. After a lung biopsy indicated I had the UIP type of IPF, I went to National Jewish Health in Denver for a 2nd opinion in June, 2016. The docs there felt that my IPF was not “typical” & felt that my fibrosis might have been caused by the untreated GERD causing acid to spill into my lungs. Upon their recommendation, I made the decision not to start medication but to have PFT’s & 6 min. walks every 4 months to closely monitor any deterioration. I am happy to report that 6+ years later, there has been no progression of my disease based on HRCT scans, PFT’s & 6 min. walks. I am not on medication (other than the Prilosec) & now have PFT’s & 6 min. walks every 6 mo. & an HRCT every 1-2 years. I also exercise regularly. 2-5 years is an average & does not apply to everyone. A lot depends on how early you were diagnosed, how severe your fibrosis is, & how well you take care of yourself with diet & exercise. Best wishes & welcome to the forum!
-
Pam,
Sorry to hear about your IPF diagnosis. I was diagnosed in November, 2015 & was totally shocked to read the 2-5 year prognosis! I cried every day for the first 6 months. My pulmonologist is very pro-active & ordered bloodwork to rule out about 40 autoimmune disorders since I had no precipitating factors. She also referred me for a barium swallow, which showed that I had terrible GERD, in spite of no symptoms. My GI followed up with an endoscopy which confirmed a “silent” GERD diagnosis, & I started on Prilosec twice daily. After a lung biopsy indicated I had the UIP type of IPF, I went to National Jewish Health in Denver for a 2nd opinion in June, 2016. The docs there felt that my IPF was not “typical” & felt that my fibrosis might have been caused by the untreated GERD causing acid to spill into my lungs. Upon their recommendation, I made the decision not to start medication but to have PFT’s & 6 min. walks every 4 months to closely monitor any deterioration. I am happy to report that 6+ years later, there has been no progression of my disease based on HRCT scans, PFT’s & 6 min. walks. I am not on medication (other than the Prilosec) & now have PFT’s & 6 min. walks every 6 mo. & an HRCT every 1-2 years. I also exercise regularly. 2-5 years is an average & does not apply to everyone. A lot depends on how early you were diagnosed, how severe your fibrosis is, & how well you take care of yourself with diet & exercise. Best wishes & welcome to the forum!
-
I’m so happy to read that your doing good and thank you so much for the information. I’m trying to understand and learn about this and it’s very hard to take in. I just want to help her and make her better but reading other people’s experiences with dealing with this makes me feel better to know she can make it and keep her mind focused on getting better.
-
Hi Pam,
I was diagnosed April 2021, so pretty recent.
I was told the same thing, three to five years. That was quite shocking.
The more I investigated that statement the more I realised that this is an average. The data has been collated over many years, including data from before any drugs were available to us. Certainly OFEV was not available to anyone in the UK unless you were really bad with your FVC something like 40% (I stand to be corrected here).
Since 14th February this year, with recommendation from the Consultant, it is available to anyone who has lost 5% lung function on the initial test or the last test.
This has happened to me and I am now taking OFEV (Nintedanib). I was worried about the side effects, but so far afetr a week I have had none at all so I am indeed lucky.
This 3-5 year statement all depends on your personal circumstances. Age, environment, if you were/are a smoker, exposed to dust, chemicals or other nasties like asbestos all your life.
I expect your consultant has discussed this with you.
As you see from the replies on here, this average has gone way out.
I am also chasing pharmaceuticals all over the world to find out where they are with drugs that can stop and reverse our condition. They may not exist right now, but they are coming!
Above all stay positive, be happy, there are drugs that can help and with this great Forum there is great advice and support.
Regards
Jeff
-
I was diagnosed 16 years ago and I have been on oxygen 24 seven for a number of years now. I have been on Esbriet since it has been approved and take it religiously. I highly recommend pulmonary rehab which I have done several times and plan on doing again. Mindfulness has also helped. At 76 I feel the idea of a lung transplant is not for me. Good luck and you do have reasons to be optimistic.
-
I’m convinced that the 3-5 years can be misleading. For many people, there have been years and years of bouts of shortness of breath, dyspnea, coughing, etc., and the person is diagnosed with pneumonia, the flu, bronchitis, or some other respiratory illness. Many suffer for a decade or more with those symptoms until they actually see a pulmonologist who orders the required testing which confirms IPF. My sister passed within days of her diagnosis of IPF. She walked into the hospital with yet another bout of ‘bronchitis,’ one of many, many rounds of that misdiagnosis over the years. She was hospitalized, grew steadily worse, and died within a few days of her hospitalization.
My diagnosis was 10 years ago, initially diagnosed by an ER doctor who looked carefully at my x-Rays after a bout of difficulty breathing. He referred me to a pulmonologist. I had X-rays, CT, and VATs over the next year which confirmed the diagnosis. Because my diagnosis was made when I barely showed honeycombing in my lower lobes, and had few symptoms, I have had little concern about the 3-5 year life expectancy because my disease advanced slowly. However, within the past six months, there has been a noticeable change, intensified symptoms, so maybe I am now at the 3-5 year threshold.
Only God knows!
-
I absolutely agree with you @ebeth! The 3-5 year prognosis was published and made public before the two FDA antifibrotic drugs were approved, so the data is very much outdated but unfortunately its still readily available on Google and many other sites. Hope you continue to do as well as possible with this disease, thanks for sharing a bit of your story with us.
Char.
-
-
Hi All,
Aside to all the known drugs that slow progression for us all, there is some encouraging research developments.
I dont profess to understand it all, but if you care to Google “REMAP-ILD” then hopefully you will see what is happening right now.
REMAP is a reconfigurable (that’s what the R is for) method of speeding up drug trials.
It was used for COVID, and that is why the various Covid drugs came to market as soon as they did.
We are all hoping that REMAP-ILD will get a drug that A) Stops the progression, and B) reverses the fibrosis.
Wouldn’t that be something?
PS I would be happy with (A) right now.
Jeff in England.
-
I was diagnosed in October of 2017 and began takings esbriet in November. I have not had any significant decrease in my lung function and continue to be active. I do have to deal with fatigue and coughing but overall been manageable. Last PFT there was actually a slight improvement over the previous test. I too was. Dry concerned when the doctor told me the 3-5 life expectancy. I am 5 years removed and feel very fortunate and and hopeful for those like yourself.
-
Hi to everyone. I was originally going to reply to Pam at the very top, but after reading so many of these remarks, i guess what i have to say is for all of you die hards. (Pardon the pun!) I was diagnosed in late 2013 and was told the same as you all have been told, or if you are from the south, ya’ll have been told. 3-5 years. I lived at 6000 feet altitude and after four years had gone bye, my pulmonologist (by the way, did you know the the word pulmonologist is not in the dictionary. So is it really a word?) said that i had to move to somewhere around sea level because the air at 6000 feet was waaaaay too thin. So i did. I am now at 300 ft. It is going on 9 years now and i have recently had to increase my oxygen that i have been on from time to time to almost full time. Not good! If i am sitting fairly still, maybe watching T V or on the computer my oxygen level is about 88 to 93, but if i get up to go to the bathroom, which is about 20 feet from where i was sitting, my oxygen drops to 82 ish and if i do anything physical like making the bed, or vacuuming my oxygen drops to 70 ish. This all tells me that my days are numbered. I find that my appetite has diminished and when i do eat, i have to go slow and usually can’t finish a normal size dinner although i do force it down as best as i can. I have been on OFEV for about 4 years and have had no side effects. But that is me. I have never had any kind f stomach problems all of my life no matter what i eat or drink. But i have never had a headache, and maybe 2 or 3 mild colds in my entire lifetime. I only get the big stuff, IPF and heart attacks. I will be 81 come January and i am hoping to see me age a little more. God willing!!! There are just somethings that we all have NO control over. So, i hope that some of you can reap the harvest from some of my words, like get the hell to sea level, take your OFEV as prescribed, do exercise as much as possible and hope for the best for all of us. No matter when we were diagnosed, we are all in the same boat. So row like hell and maybe some of us can last until some drug company wants to invest the time and money and find a cure before it’s too late. Sorry for bending your ear for so long, but i hope that it was worth it for some of you. Charles (Chuck) Gerson
-
Hi Charles. Read your entre and thought you sound a lot like me. I live at 4500 ft, on the Colorado, Utah line. It is considered high desert but just to the east of us start the mountains. They gradually go up until your at Silverthorn at 12,000. I was diagnosed in March of 2020 when I couldn’t get my breath, sweating like crazy. It took 3 hospitals and a biopsy to find out that I was minus 1 lung. I think I actually had IPF before this. I had an old lung doc who said I had emphysema. He never did anything to prove it or disprove. I was on an emergency inhaler. This was 2 years before the final diagnose.
I was at my lung doctor yesterday and told some news we don’t like hear. I have been using an Inogen portable when out and about and a oxygen compactor at home set a 8. The Inogen only goes to 6 but not really. It is actually 4. She said I need to go back to the tank to get the help I need to walk or do anything. She said I am getting to the point of not being able to do anything and not traveling. She cancelled the volumn test for Dec. because she already knows what to expect.
My wife was with me when we where told this, I haven’t told my kids yet. I don’t know exactly how to put it to them. My oxygen ranges from 92 down to the 70’s. Lately in the 80’s alot. She said that if things get much worse, it will be time for hospice. I am trying real hard to not to get to that point. I am trying to get help for my wife for around the house, none available we can afford. 3 hours, once per week to do some house cleaning–$120.
Well, Chuck, here’s to us and the other IPF people who are struggling too. Have a good weekend.
-
-
-
- You must be logged in to reply to this topic.
