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Life span
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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.
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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
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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.
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Hey Randy, I read this thread thoroughly and until I saw your post, I thought that I was alone. Around one year ago, I was treated for colon cancer. The surgeon did a great job, but the radiologist who read my CT scan, while looking for traces of cancer, saw my IPF. That diagnosis didn’t concern me. I was thrilled that I beat the cancer, and was working on getting back my energy. After 2 months, I suddenly couldn’t walk 500 yards without being very winded. I then had an exacerbation in April, and I thought I was dying. I didn’t, and so I saw a pulmonologist, an expert at a prestigious Boston hospital. I started on Efov, and oxygen. My lung capacity is decreasing rapidly. My sister had IPF, and died in 2 years. And she was a health nut. I was casual about my healthcare, and was a smoker. I worked as a roofer and never used a mask. I worked with asbestos, benzine vapors and many hazardous materials. And when I came home at night, I relaxed by working in my wood shop in my basement, causing clouds of dust. My luck ran out this year, and now 7-8 months since diagnosis, my O2 requirements are rapidly increasing. I don’t want to discourage any fellow IPF travelers, but my prognosis was 3-9 months. I’m sure that my lifestyle made my IPF inevitable. But I think of my younger sister. 24 months. And I’ve read some studies that put life expectancy after diagnosis as 3-9 months. The point of my post is only to say that IPF is different with every person. I too have heard of people living 20 plus years after diagnosis. I wish the best for all my fellow IPF travelers. But for many of us, we should accept that it can move fast. I was always a believer, but my recent travails have increased my belief in the promises of Jesus, and I am happier and more contented than ever in my life. Trust in Him.
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I was diagnosed with Hypersensitivity Pneumonitis and resultant Pulmonary Fibrosis at age 40 and transplanted at age 62. Four separate medical reviews including National Jewish in Denver. Began using O2 about 2 years prior to surgery. Now 6.25 years post-Txp.
There IS HOPE! Don’t lose yours.
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The best advice I every read was from the late Steve Jobs in a commencement speech he gave at Stanford in 2005, five years before he died of pancreatic cancer. Jobs says we should live each day as if it were our last day, as inevitably that (our last day) will be the case for all of us some day. It’s about attitude. Fix what you can and accept what you can’t. Most certainly, if you are a believer, then you know with confidence that God is with us each step of the way. With a chronic illness there are many struggles – physical, mental, physical, financial, and such. We must persevere. Enjoy each day and to the extent it is possible, be a blessing to others.
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I was diagnosed in September 2015. I am 75 years young and still going strong, although I caught covid in June 2022 which added to the scaring significantly. I have now been approved for drug treatment to slow the progression down and apparently extend my life by up to a further three years.
I do get highly breathless when undertaking any physical activity, but I can recover quickly. So I just carry on as normal! Dog walking, gardening, and DIY for instance, I just have to take little breaks every now and then. I trust this will help and encourage you.
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I was diagnosed with FPF in Feb. of 2019 and on Esbrit since May 2021. No side effects. I don’t think anyone should avoid the two drugs because of side effects until you try them. Clinical trials show they can slow things down. No oxygen yet. Coughing and a lot of fatigue. Sept. scan showed no progress over June. My understanding is that the makers of Espirit have stated that their patients survive an average of nine years. Last month I added a diagnosis of Bronchitis which has been a son of a gun to overcome. But I am just getting better now and hope to get back to the treadmill. .
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Hi, I was diagnosed July 2018 w/ IPF and prognosis was 5 years. Today 4-1/2 years later I’ve had very little worsening and see no reason why I shouldn’t go another 5 years or more. I work part time at Home Depot. This allows some physical activity along with the socialization I get from working with customers. I’m 74 and have been retired since 2008.
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Hi! I was diagnosed in March 2016 but was suspected early. I was Esbriet for 6+ years but got off it due to all the side effects. They kept getting worse. I have now been off for15 months and feel much better. Quality of Life verses Quality of Life is my motto. I have not proceeded to get much worse – a little bit but know I have more years left. I do go to Pulmonary Rehab twice per week and I’m is very beneficial both for physical and metal health. Being with others with similar breathing issues creates a strong bond! I am 75 years old and plan on being around for awhile yet!
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I was diagnosed 4 years ago due to Md thinking I had pneumonia . One doctor gave me 5 years. It’s not true cuz I have no symptoms.!!! Changed doctors and still no symptoms. Open up to self healing! Meditate daily. I am having more blowing tests but after changing pulmonologist he said there is no way I can tell how long! Don’t believe the crap and enjoy your life! If these tests come back ok I am going to say “ see you when I start a cough or sob!!!!! Nina????
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DXD Jan 2012. Ended up losing my job, but was old enough to take retirement. Qualified for SS so did not have to face the uncertainty of looking for employment. Initially given a prognosis of 3-5 years possibly seven.
Early on, I investigated clinical trials thinking that they might give me an opportunity to prolong my life or at least improve the quality of life. Did not qualify for either available trials for the medications we now call Ofev and Esbriet. Did get into early trial with Fibrogen which did improve my health. Unfortunately, after 3 years, Fibrogen felt it was too expensive to continue and the program closed for those of us on extensions.
Started on Ofev the fall of 2016 and have been enjoying life despite the many side effects of which I have endured many of….diarrhea, muscle tears, dizziness, nausea, constipation, cramps, headaches, spontaneous bleeding have all been a part of the journey.
Long story short….thousands of miles of travel by plane, car, motorcycle, RV….remodeling projects…joys of being a grandparent have been my journey over the last 11 years since being diagnosed. I am currently going to begin the third (?) clinical trial, or is my fourth. But more importantly, I have just recently started using supplemental oxygen and then only for times of exertion.
So, my story should tell you that the prognosis is something that a doctor will tell you based on historical data that is old. It is based on the numbers that are already three years old if not older. Everyday, new drugs are being tested, new treatments being evaluated, and more importantly new knowledge about this disease is coming to light. Information that helps people who are facing this disease now.
So don’t despair because your doctor gave you a prognosis of 3-5 years. He is trying to give you an idea that your life, may be shorter than you anticipated. If anything, it should be a reminder that we are mortal. Don’t think of it as a goal, but just a reminder that all good things will come to an end….just probably not today and probably not tomorrow
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John,
Thanks for sharing your jouney of 11 years and counting. Your story brings hope to those of us in despair and searching for an answer. Fibrogen has a Phase III trial ongoing. Are you in this trial? I am participitaing in another one called Teton 3 from United Therapeutics. There is also another Phase III trial from BI called Fibroneer. Any one of them can likely extend mortality for us. Are you on supplemental O2? After almost 28 months since diagnosis, my O2 is in the 98% range but my FVC and DLCO have both declined. I am confused about the results as I don’t feel much noticable change.
Good luck to you and everyone else on the forum.
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While working in the yard I started feeling more tired than I should have while sawing tree limbs, removing debris etc. so I went to see a thorasic doctor. That was around 2003. In 2005 I had both Lyme Disease and a Mold infection at the same time. It affected me a bit but I could still do my 1.5 mile jog. I was never a good runner and liked cycling more…but I switched it up. I did the 1.5 mile job on a Friday, Saturday had a crown replaced and felt lousy the entire weekend into Monday. Tuesday I went out for a jog and literally could not jog a block! My heart felt like it was going to burst out of my chest. CT Scan showed a mild sandstorm in each lung along with a cluster in each lung the size of a tennis ball. It scare the heck out of me. Diagnosed with IPF in 2005.
The pulmonary function test I took showed Prednisone didn’t do much of anything straight into my lungs so I opted not to use it. I did probably 75-100 IV’s of either Hydrogen Peroxide, Ozone, and Vit C. I still exercise, don’t eat much junk food, never smoked cigs or weed, don’t consume alcohol, mostly veggie diet with eggs, salmon, sardines, sometimes shrimp, brown rice etc. I meditate, do yoga, do lift weights but not as often as I should.
What sparked me to continue exercise is what a Surgeon who wanted to biopsy the part of my lung with NO scarring said when I told him I could walk OK on flat ground but the hills were a killer. His response…”yeah, simple physics, the steeper the angle the harder the work”. So, one needs to exercise even with diminished lung capacity because the better shape you’re in the easier it is to perform a task. Last I checked with my spirometer my FEV1 was only 1.3-1.4 but I still have never used supplemental oxygen. One has to remember to breath deep and low….diaphragmatic breathing!! Also once in a while I do Wim Hoff breathing techniques. I had a bad sinus infection that threw me for a loop in Oct-Nov… but I’m feeling better now. The downside is that I’m also prone to kidney stones and have to go and have laser treatment in a few weeks so it’s going to slow my recovery a bit. Still…One MUST keep a positive attitude! In a few months I’ll have been living with IPF for 18 years and I’m not going anywhere soon! I did read an article that said Metformin had an effect on reversing lung scarring so I need to do some research on that. I’m not big on meds…tried a few…don’t agree with me. We also have 3 AirDoctor air filters in our house. For the guys there’s also a lot you can do, as you get older, to keep your “T” levels up. No alcohol, low sugar intake, eat only good fats, you need carbs but don’t overdue it. Yeah, my mistake…too many carbs but I’ve changed that. Oh…and this summer I turned 70, my hair is only about 40% gray, I’m not overweight, and have a SUPER supportive wife which also helps.
OK…so I hope you’re all doing well and perhaps have a little boost of confidence that you can, at the very least, slow the progression.
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At the age of 69, I was diagnosed with IPF in June of 2015 and of course was given the 3-5 year lifespan. I am able to function on no oxygen but on rare occasions use it to sleep. When I travel I do carry it with me, especially on airplanes. My wife and I continue to walk 5 days a weeks on some local trails that vary in length from 2.5 to 4.0 miles. I am on OVEV at a very reduced prescription (100 mg per day) due to significant side effects. I am at peace with my future, whatever comes. At last check, there are none of us who make it without facing death. So, I try and face each day as a blessing that I may be able to be a blessing to someone else. Think a positive attitude is a critical component of facing a diagnosis of IPF.
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I was diagnosed with basically the same information. I am happy to say, I am on year 20. I know I’m not the norm. The first year was the roughest, but mostly getting the medd to a tolerable level. I’m a firm believer in positive attitude, I had young children, and was basically told I wouldn’t be around to watch them graduate. My doctor had me set goals. Live to 50, watch my children graduate, turn 60, turn 65, become a grandmother. I’ve met all my goals, and still going strong.
I have not let this disease define me or stop me from living the best life I can. There are tough days, but I just regroup, and keep going.
About 6 years ago I started taking Ofev, it allowed me to go off other medications, I deal with the side affects the best I can, but I seriously feel better than I have in the previous years. Hang in there, make goals, keep moving.
Good luck to you. ????
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I don’t know much about IPF or the treatments that are effective and have no idea why that 2-5 year life span. I can only go on my own experiences but I’m glad that there are people around who have survived and lived well past the five years. I live in London England where we have free health care but I rarely used it over the 62 years I’ve lived here. In fact I don’t take any medicine not ever aspirin. But I developed a cough in 1971 and my usual lemon and honey treatment did not have any effect but my partner insisted I see my GP more I think because it irritated her. My GP sent me to the hospital where they conducted various tests scans and what not, gyhwhich I found fascinating, and made more appointments and sent me home. Only when I googled did I find out I had at the most 5 years to live which I found disturbing but soon forgot all about it, except of course my every six-month each at two different hospitals were if anything I still found fascinating. There was a treatment they said but it was so expensive that only patients who had passed a certain stage could be put on and supplied with oxygen and other types of aid. This seemed to me much like closing the doors after the horses had escaped. They diagnosed my IPF when I was 80 in 2011 and here I am soon to be 92 not having talen any medicine excep for a while Omniprozle which is for acid reflux. My wife, 96 is in a care home and I visit her daily to help her eat (she has Alzimers and had a stroke which makes her wheelchair bound). This makes me walk 3 kiometers daily except when the weather is bad when I make use of our free freedom pass on tubes and buses. I must say though that I’ve lost 10 kg and feel not as able as I used to be. Perhaps the time has come to say goodbye to the world. Oh by the way I’m careful what I eat: lots of fruit and vegetables, no red meat. I also meditate and do yoga and am almost going vegan. And no sugar or milk, which anyway I never liked. Dark chocolate that’s my reward. I hope you can extract something out of this.
Desmond
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I am Chuck and i was diagnosed in 2013. I am 81 in 5 days. I have been on OFEV for the last 5 years or so and really believe that it has been very helpful. Hope that this helps.
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My first symptoms were experienced in 2015, with diagnosis in June 2018, following a lung biopsy. Since then, I had taken Esbriet for one year, discontinued because of a significant Erithroderma. I have been on Ofev for 3 years to date, with the “usual” side effects which are manageable. For the last three years I have been on O2 at two liters at night.
My IPF progression has moved slowly, with long periods apparently dormant. The occasional decline seen in my PFTs have not been statistically significant. I am told that I present well clinically, which is consistent with my own view. I live alone in a rural area of VA and continue to manage my own groundskeeping on approximately six acres. My dogs, a Border Collie and a Dachshund provide valued companionship and quality time together outside. We three are compatible “seniors” (they’re 12 and 14 years old respectively). I’m 73 years old, retired from a senior management position in the railroad industry.
I remain engaged and active as a 20-year member of our Volunteer Rescue Squad and within my Church I have managed a Scholarship Program for our college students for the past 11 years. I cannot overemphasize the value of such engagements, especially these and others that advance the principles of my faith.
Many years ago, my flight instructor gave priceless direction when I was on final approach to my first landing: He said, “LOOK LONG!! You’re diving toward the numbers at the beginning of the runway!! Look instead at the numbers at the distant end!” I did as he suggested, and we made a perfect touchdown.
My habit, in meeting with my Pulmonologist, is to ask his view of my “glidepath”.
His guidance at diagnosis in 2018 was the standard 3-5 years, which means that 50% of us with IPF will SURVIVE FIVE YEARS. At our most recent examination, his prognosis remained the same: I have a 50% probability of surviving five years, considering my progression – so far – has been slow.
Notwithstanding, I recognize the need to prepare for “The Greater Journey”. For this, I believe I will experience the Judgment of my Creator and my Redeemer, whose Judgment is complete and perfect, yet – by the mystery of faith – whose Mercy is even GREATER!!
Perhaps your views will vary. I pray for comfort, healing, and abiding hope for all.
Paul.
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Truthfully no one is going to be able to tell you that they lived 7 years with PF and then died. We only have the day we are living in.
The trick is not allowing yourself to compare your case to others. Every person is different. The amount of oxygen, hours used, test numbers, hours spent walking don’t really help you.
Be reasonable, do what your doctor says to do, eat healthy meals, protect yourself from the thoughtless things some people say. If you are well today, be happy. If you need to start using oxygen therapy or raising your O2 level just do it and don’t worry about what other patients are doing.
I don’t know why I have IPF, I was afraid of oxygen, I had to switch antifibrotics, I’ve had an exacerbation. Today I am feeling great. If that’s not true tomorrow I’ll call my pulmonologist.
Keep moving forward, don’t stop to compare, do the next right thing no matter what others are doing.
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Well, I will tell you that I was diagnosed bc I saw it on my chest scan results that, I had requested. And the doctor there said, I am sorry you have Interstitual Pulmonary Fibrosis. But, my doctor who is also a Pulmonologist never told me for two years , I kept going crazy thinking why am I coughing so much? That’s major medical negligence. So, I went to 5 other pulmonologists and each one was worse then the other, They didn’t ever give me cough syrup, so I thought then why are you a LUng Doctor? So annoying, I a now seeing an eighth doctor also a nightmare. I unfortunately moved back to New Jersey and it’s been a nightmare. I don’t have Medicare bc of my age, so my Insurance does not cover my Oxygen so, I will be paying it out of my pocket. Do any of you feel excruciating pain? Because I cough so much that, at times my lungs feel like I am getting whipped, I am constantly falling bc I lose oxygen in my brain. And this last doctor, I just came out and asked here, how much longer do, I have and she came out and said not that much. In a way it makes me try to move faster on days that, I have some energy so that, I can pack and leave to the Sunshine State. I think your question is a valid question. After all it is very sad and depressing for any human being to hear that they have a terminal illness.
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Elle, if you have IPF you should qualify for Social Security Disability. There is a 24 month wait period after that and then you will qualify for Medicare. In the meantime, if you income has been affected (mine sure was, I could no longer work) you may qualify for Medicaid, depending on your assets, etc. Also, the medical company that I have for my oxygen had a sliding scale fee for the oxygen based on my income. I hope you find the Dr. that can help you.
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I rarely participate in the forum but do scan it now and then. I felt sorry for you as you begin your search for understanding and answers to your questions. I took that time frame reference to heart and felt driven to ‘get my affairs in order quickly’. Seven and a half years later, my affairs are in order, have been corrected when friends moved away that were listed in my paperwork and very slowly I’m fading. There is nothing you can count on with IPF except it won’t go away! I live in the US and have been on and off Hospice twice. I have a wonderful supportive network of friends and neighbors. I live alone and all my kids/grandkids live 12 hours away. I have the best doctor who takes good care of me. I stopped going to a pulmonary doctor because the pulmonary function tests were always a little bit worse which would put me into depression for a week or so. I decided I could rely on the Pulse Ox to see if I needed to up the oxygen. I’ve been on 4L for about a year. Est thing I ever did was to go to the Pulmonary Workshop (not the real name but I can’t remember what it was. There my class learned everything we ever needed to know about the disease and the importance of exercise, diet, and how it might progress. I’m sure you’ve heard, no two cases are exactly alike. Ask your doctor if a class is offered in your area. I went from a very active person to a house-bound person. I’m just too tired to go anywhere. I’m currently looking for an assisted living facility. I don’t want to exhaust my friends with all my needs on top of the Ophir own. They would say it’s not a problem but they didn’t sign on for an eternity of care either. I’m 78 but have always been a long distance hiker, taken long car trips and stayed active in the community. Being house bound has been the biggest adjustment. I’ve had other health issues that complicate IPF. I have chronic spinal issues and all except the Thoracic region has been
permanently fused with titanium cages and rods. I’m on high levels of pain meds because I can’t have anymore surgery to correct new spine bulges that cause pain. Things are not all gloom and doom. You meet incredible people in the medical field and I find out about services in you neighborhood. I’ve discovered I can donate my whole body to the medical schools of large Universities and made new friends at my local funeral home and Duke University. What an honor to let grad students see what IPF does to the lungs and maybe contribute to a discovery of a cure. I’m also a strong believer that Jesus is preparing a home for me in heaven. I keep reminding Him I don’t need a mansion, just a little cabin will do. I don’t fear death as many say but I could skip the final process! I hope you are as blessed as I am and your journey can even be exciting at times. You can contact me directly and I’ll do my best to answer any questions. This is a great forum with a lot of caring people who know a lot more than me….I always type too much. Hugs, Gweneeth -
My older sister has IPF over 10 years. She tried both the prescribed meds and couldn’t tolerate either one. But she did stick with a prescribed exercise program until recently. She is finally having some trouble when moving around and uses supplemental oxygen. She is now 86 and hanging on.
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Everyone is different, even with the same flavor of PF. There is also a lot of research and a couple new meds coming online in next few years. One of which is considered a “breakthrough” drug by FDA, and is in Phase 3 trials right now.
Here is a big study that has a lot of info on this.
QUOTE: A recent analysis from the US Medicare database [2] indicated that the median survival time in IPF was 3.8 years, with survival time decreasing sharply based on age at diagnosis. Patients between 66 and 69 years had a median survival of 8 years, compared with 4.5 years in those diagnosed between 75 and 79 years, and 2.5 years in those diagnosed at ≥80 years.
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Anyone have information on lung trandfustion life span???
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I was diagnosed in 2014 and am still in the moderate range. Text book longevity is not accurate. I will add you to my prayer list. It out of our hands now.
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I was diagnosed in March of 2018, but I’m pretty sure I had it for a few years before that. I’m currently considered ‘Stable’ and on 2L of O2 resting. I will be turning 60 on the 27th of this month. I know that every person is different. I also have other health issues I’m dealing with along with the IPF.
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I was diagnosed in March of 2018, but I’m pretty sure I had it for a few years before that. I’m currently considered ‘Stable’ and on 2L of O2 resting. I will be turning 60 on the 27th of this month. I know that every person is different. I also have other health issues I’m dealing with along with the IPF.
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