What I Wish I’d Known When I Was Diagnosed
I’m coming up on the fourth anniversary of being diagnosed with pulmonary fibrosis. It’s caused me to ponder what I wish I’d known before my diagnosis. Three things are at the top of my list.
Ignore information online about life expectancy
My disease progressed rapidly because it was caused by chemotherapy and radiation treatment for breast cancer. My doctor told me I had a few months to a year to live and gave me very little other information. The basic message I received was: “You’re going to die. Get your affairs in order, there is nothing you can do.”
I headed to the internet to learn about my disease, but that wasn’t very helpful, either. Many websites list life expectancy as three to five years, and I believed this, not knowing any better. Over time, I realized that this prediction doesn’t take into account a lot of factors such as new medications, good healthcare, and being proactive in treatment. We can do many things to keep ourselves as healthy as possible.
I know many people who have lived way past the five-year mark. The reality is that everyone is different. I think a healthy viewpoint is to take the terminal illness diagnosis seriously, and do all you can to stay as healthy and positive as possible.
Start exercising as soon as possible
Fortunately, my doctor referred me to pulmonary rehabilitation within four months of being diagnosed. I went through a 12-session program, which included exercising and information about living with lung disease.
This program is a huge help, but there is a drawback I want you to know about. The respiratory therapists come by every 10 to 15 minutes to check oxygen levels and heart rate. They want to make sure I don’t go below 90 percent oxygen saturation level or over 120 beats per minute for my heart rate. While I feel very safe there, I didn’t realize until six months ago that they weren’t pushing me to expand my lung capacity and increase my level of fitness.
(Photo by Kim Fredrickson)
I learned I needed to push harder from Noah Greenspan, a doctor of physical therapy who specializes in cardiovascular and pulmonary diseases. He helps patients increase their fitness level. He has dedicated his life to helping patients achieve the best pulmonary health possible, and has written a book that I bought called “Ultimate Pulmonary Wellness.”
I have really benefited from his work as well as his website, which has a lot of wonderful information and videos. His book is available to read (but not download) online. Here is a link to his chapter on exercise. He also runs a Facebook group that I belong to, where he provides answers to patients’ questions as well as wonderful webinars about pulmonary health.
I really wish I’d found Dr. Greenspan four years ago and pushed myself to exercise more vigorously. It feels good to know that although we have the deck stacked against us as PF patients, there are things we can do to increase our fitness level. I wrote more about my exercise program in a recent column if you’d like to learn more.
Do breathing exercises regularly
I learned how to breathe in pulmonary rehabilitation, but never understood how critical breathing exercises are to maintain lung health. It is normal to breathe shallowly when short of breath. Unfortunately, this habit causes our muscles to decondition and use oxygen less effectively.
I learned about some breathing techniques from Dr. Greenspan that have helped my lungs stay as flexible as possible. This is especially important with a diagnosis of PF. Over time, the tissues deep in our lungs become thick and stiff, or scared. These breathing exercises help them stay as pliable as possible.
I also practice qigong for pulmonary health with the Institute for Rehabilitative Qigong and Tai Chi. This program is a series of gentle exercises I do at home while sitting. It has helped me breathe deeply and improve my cardiopulmonary function. You can purchase a DVD or the streaming version to watch on your computer. Here’s a short video that will tell you all about it. I don’t get any compensation for telling you about it.
I hope that hearing about the three things I wish I’d known before diagnosis helps you. Next week, I’ll be sharing even more tips I learned from other patients about what they wish they’d known when first diagnosed. Be sure to check back!
I’d love to hear from you
What do you wish you’d known when first diagnosed? What has helped you the most to live with pulmonary fibrosis? Please leave a comment below.
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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Barb
I totally agree with your statement that our life expectancy is not in the Drs hands but our own. 6 months after my diagnoses I read a book, The Triumphant Patient, it talks about taking charge of your own care. I did just that and placed my decisions on what meds, exercise, diet, and frame of mind I. the Lord's hands. I research alot and discuss the options I find with the Dr and then pray for guidance in making the best decision for my body. I am happy to say that by the grace of God I just passed year 20 after being diagnosed in 1997 with an original life expectancy of 2 years.
Kim Fredrickson
Hi Barb,
Thanks so much for sharing. That book sounds wonderful, thanks so much for sharing it with us. I think I'll get a copy. I love your approach of doing all you can, while placing your trust in God. This approach helps me so much too. Congrats on your 20 year anniversary. Your outcome is an encouragement to all of us.
Kathy Ann
Very thankful that I too found Noah Greenspan - in fact was looking for a way to suggest watching his webinars on You Tube - WONDERFUL - and after being diagnosed I realized I could give up and die or choose life so began my walk with every healing scripture I could find in the Bible (our owners manuel) - I can't imagine trying to cope without God's love supporting me. I was diagnosed 3 years ago - just started Ofev 2 months ago and have had very mild side effects. Little nausea if I have too much liquid on my stomach early - do much better with a couple pieces of toast and scrambled eggs - - sometimes a slight headache - other than that feeling fine !!! This site will be my new friend !!!
Kim Fredrickson
Hi Kathy,
Good to hear from you. I LOVE your attitude and way of facing into this illness while trusting God the whole way. That is my secret weapon too! So glad your disease is progressing slowly, and that you are having little side effects from Ofev. That is wonderful news! Many blessings to you.
Sylvia De La Parra
Amen God is good all the time! Congratulations!
Kind regards
Sylvia
Carol Petersen
You nailed it! I love your attitude and your information. I discovered Noah Greenspan the same way you did-- he changed my life. I don't have PF; I have emphysema, and when I was first diagnosed, my doc said I should go on disability. I said no, and like you, I did my own research. Exercise, exercise, exercise is now my mantra. The QiGong exercises are wonderful too. Thanks for writing--I hope lots of people see your column and check out the Ultimate Pulmonary Wellness book and website. Keep up the good work!!!
Kim Fredrickson
Hi Carol,
So glad you found Dr. Noah too! So good to hear all you are doing is paying off. Good for you!
Ron and Anne Reynolds
Hi, Kim. Thank you for this very helpful article. My respiratory team have been marvelous and had me at the hospital gym, where the physiotherapists put me through a twice-weekly programme and I'm feeling very well. When I was diagnosed 4 years ago the specialist panel said they could not give me a time line and my wife and I should carry on our adventures as much as possible and continue to make the most of life. Which we continue to do.
I had not thought about Quigong, or Tai Chi, but I will investigate our local centres. Thank you once again.
Ron.
Kim Fredrickson
Hi Ron,
Great to hear from you. So glad you are able to stay so positive and active. have fun on your adventures!
Winnie Hagenah
I was just diagnosed a week ago. I’ve been doing a lot of reading online and trying to find some balance in my life. O many things have changed in my life so quickly! Learning to live on oxygen. Trying to decide what to tell my employers. Learning to pace myself to avoid fatigue. Trying not to panic at the thought of enormous drug costs. Going back to work and trying to find ways to explain to my students as gently as possible why I now am on oxygen.(“Well, you see, my lungs don’t work as well they should, so I have oxygen to make sure my heart and other organs work properly.”)
Thankfully I was told almost immediately to ignore the 3 year life expectancy. Still, that’s hard to ignore completely. I have been told the closest pulmonary rehab is 5 hours away. I hope to get in a program over the summer, but once school starts again, that will be hard to do, so I am thrilled to see your recommendations of books and websites. I am overweight. I have not exercised for years, and I don’t have a good diet, so everything is goin to ave to change. I have a gas stove, so I’m going to have to switch it out for an electric one bc right now I’m living on whatever I can microwave.
Tomorrow will be my third day back at school since diagnosis. Just getting through the day right now is a battle against fatigue and keeping up my oxygen levels. Thank you for a beautifully written column. It gives me hope, and it gives me a direction to aim for. Maybe, just maybe, I can keep working for another 10 years.
Cynthia Scott
Finally, I have been seeking something concrete to do to improve myself. All I heard was exercise, not what kind or what to do. I was told to enroll in a health rehab type exercise class at the local hospital. I was appalled at what they had me doing. For all I know I could have been the only IPF patient at exercise time and I was probably the youngest there. There was no breathing exercises, just bike and treadmill which I can do at my community health facility. Thank you for finally addressing the exercise component of IPF. I have a 71 year old brother with COPD and am going to share the information I receive from the book to him. Thank you many times over.
Kim Fredrickson
Dear Cynthia,
So glad my column is so helpful to you. I know you will use this information to help yourself, and how cool that you can do this with your brother too. Many blessings to you...
Bill Hunt
Since my IPF diagnosis and a short time at rehab where they also did not teach breathing techniques I found your post helpful. I am still learning more about breathing techniques. Like you, I do exercise, but at home on my recumbant bikeatmy convenience. Thank you for your post. Bill Hunt
Kim Fredrickson
Hi Winnie,
Good to hear from you...it is so much to adjust to all at one time. I love your explanation to your students. It will take you a bit to figure out some tricks to use at work to conserve your energy. You'll figure it out! I love your can do attitude. You go girl!
Kathy Ann
Winnie I know how hard the beginning of this journey was for me - 3 years now. I had to have direction to fight fear - doom - so I listen to lots of the Christian programs that teach good Bible Healing - and getting power back to live. Fear - worry - panic - don't want to carry them inside me every minute of everyday. I have learned not to get on the computer and read things that only bring fear - and my absolute RULE nothing in the evening where I will be taking those thoughts to bed with me. Be determined to live healthy - to MOVE - and I too have just found this site and am happy to have a place where we can all encourage each other. I've heard great positive things about living longer & even newer science to improve meds - there is much hope !
efren cartagena
try 3 cups of carrot juice everyday my wife is healthier and stronger.her coughs are gone and she can walk shortness ot breath no more
John Klinkosh
Hi, I was diagnosed in November 2017 and I would say I was in disbelief about it, so I started to do some research as to what could be done and came upon the interview with Bill Vick which inspired me and have been doing exercises and Paleo diet. Since then I have lost 45 lbs. and increased my walking greatly, before I would walk 100 feet and would have to sit down as I was exhausted, just recently I walked 101 min. on a treadmill and 5.15.miles. I am dealing with a heart condition which I have 3/4 of a heart due to a heart attach in 1989. I am always trying to search for new clinical trials and information as to the research of how to stop and/or reverse IPF. I've seen Dr. Greenspan's interview on Bill Vicks post and plan to purchase his book. It sounds like the key to longer life with IPF is in Healthy eating and Daily exercise which should be #1 priority for IPF patients.
Kim Fredrickson
Dear John,
So good to hear from you. What wonderful progress you've made! You are an inspiration to all of us. I love your positive attitude. Best wishes to you!
Alfred Arnold
Hi Kim,
I am so encouraged by your comments. I was diagnosed with IPF at 69 years of age in Dec. 2017, following a course of chemo therapy for recurrent metastatic prostate cancer. I am happy to say that all indications point to the condition being in check and not spreading.
My diagnosis came as quite a surprise as a CT/PET scan was done at the end of treatment to evaluate what further steps needed to be taken. The scan gave me and my Oncologist confidence that the chemo was successful and that 3-month check ups are all that is currently necessary in addition to ongoing hormone therapy provided by my Urologist.
Unfortunately 3 additional medical conditions were identified: hyperthyroidism, CAD and IPF. The IPF was confirmed by via a high resolution CAT scan.
As I indicated this came as quite a shock since as of today I feel healthy and would not suspect that I have other serious medical conditions to address. I do a 50 minute walk up and down hills with no angina or shortness of breath. I do not have a dry cough or feel particularly fatigued unless I push harder. One of the first things I did was to research just what IPF was all about. Shocking to see 2-3 year life span the expectation.
This forum has given me hope and confidence that everything you read on the internet is not always accurate.
I have researched ways to improve my health which have included books by renown Cardiologists, Fuhrman and Ornish. A healthier approach to diet and exercise are the essence.
Thank you so much for sharing the information you provided. I will definitely look into your findings.
Kind regards,
Al
Kim Fredrickson
Dear Al,
Good to hear from you. Thanks for sharing your journey with ipf. I'm so glad you are doing so well. Continuing to pursue healthy eating and exercise will help you so. You are taking such a pro-active stance with many conditions. Good for you, and best wishes.
Kathy Ann
Al after I began my journey with IPF and doctor visits & testing every 6 months I was told by the doctors - nurses - therapist STAY OFF THE INTERNET. Glad to have this forum to encourage & lift each other up on !
Tula Oreilly
Thank you so much for this article Kim. I was diagnosed 2 months ago with IPF, and am starting pulmonary rehab shortly. Your insights and recommendations are taken to heart, I’ve ordered Dr Greenspan’s book and qigong/Tai Chi program. I’m hopeful to only realize a mild progression for as long as I can.
Kim Fredrickson
Dear Tula,
So glad my column was helpful to you. So glad you are taking such pro-active measures on your behalf. Excellent! Wishing you the very best :)
Bill hunt
Thank you for your article on Life expectancy. Because I am new at this I found it uplifting for my future. Tomorrow I go for my second appt. with my pulmonary specialist to have a 30 minute walk test. I will run this article by him. Thank you!
Kim Fredrickson
Hi Bill,
So glad this was helpful. Hope your appt with your doctor goes well, and that these tips help you as you care for yourself. Wishing you the best!
CAROL J ALLEN
You are an inspiration! Will do as you suggested. There's nothing to lose but weight and bad attitude! Who needs those?
Kim Fredrickson
Hi Carol,
Loved your comment, made me giggle! Go for it!
Dianne Eldridge
Thank you for your encouraging words. Exercise seems to be the number 1 top suggestion in helping ourselves live longer lives. I was diagnosed 5 months ago. For the last 3 years I have dragged my right leg around from pain of osteo-arthritis. Needless to say I have not been able to walk or exercise because of this. One month ago I had a total hip replacement. I am still not able to walk at length because of surgery pain and stiffness. My hope is to someday be free of pain to begin an exercise program. I would love to connect with others that deal with osteo-arthritis and fibromyalgia to see how they manage pain and a vigorous exercise program.
Kim Fredrickson
Hi Dianne,
Congrats on your hip replacement. I hope it will help you become pain free and better able to move around. You have so much to deal with on top of pf. Good for you for all you are doing to improve your health. I know there are exercises you can do while sitting that might help. Maybe search on youtube for some possibilities. Wishing you the best!
Esther Landers
My husband passed away 4 weeks ago at 76.He was diagnosed with ipf July 2015. From a cat scan ordered for shortness of breath. First they said it was copd then they said it was ipf. By nov 2016 he was on oxygen 24/7tHe went thru pulmonary rehab last yr but his progressed rapidly. What I don't understand why they didn't see it on the many x rays he had in 2014 after heart surgery nothing was ever said about ipf at that time. I feel possibly the heart surgery may have triggered the ipf to progress fasterI just don't know. He also went thru chemo in 2007 for colon cancer which was cured. Drs couldn't blame it on smoking as he never smoked . I know he is in heaven with Jesus so I have peace. I wish you all the very best.
Kim Fredrickson
Dear Esther,
So very sorry about the passing of your husband. It does help to know he is in heaven, out of pain. My faith helps me too. My heartfelt condolences to you.
Esther Landers
Thank you
Erica
Loved this article...felt like I was reading my own life story. 3 years ago, I was told that I had a year left. Was on oxygen 24/7 and had become obese from steroids and comfort food. I hit the gym down the hall in my building. Lost weight and can be off oxygen for several hours at a time now. I've just applied to the fb site you recommended.
Thanks.
Kim Fredrickson
Hi Erica,
Thanks so much for sharing your incredible story. Congrats on all you've done to improve your health. So glad you shared!
Sue Francis
Hi Kim, thank you so much for your article. It has given me so much to follow up. My partner was diagnosed with IPF about 18 months ago and since then it has been a very difficult time trying to get appointments with Drs as well as any sort of medication. Of the two drugs used for this disease, only one is now available here in Australia and he has been taking it for five months now as well as using oxygen. There appears to be no rehab services available here in Canberra and thus he has had little assistance. Lately he has started blacking out and has found himself on the floor a few times. No reason for this has been given and he is getting very depressed. He has badly swollen ankles, again with no reason given which results in his walking being very much reduced. I am very heartened to read all the above and will now follow up on the book and web sites recommended. Thank you so very much.
Kim Fredrickson
Hi Sue,
Thanks so much for sharing. Your partner is so blessed to have your help and support. So sorry for the difficulties you are having getting the treatment you need. How scary to find him passing out. Ugh! This could be from his O2 levels getting too low. It is common to get swelling from the medications. I am on a diuretic that helps excessive fluid to not build up. His depression is so understandable. Many of us struggle with this. He may benefit from trying an antidepressant. So very sorry for all you are both going through. Good to hear from you.
Sue Francis
Hi Kim,
Thank you for your kind words and encouragement. I feel rather useless and hate seeing him fading away before my eyes. He eats little due to nausea and vomiting and does little exercise due to the fainting spells.
I am finding this forum helpful and again thank you.
RoseMary
It is very helpful to read about individual struggles and. Helpful to realize how many different symptoms IPF patients have. My husband at age 80 was diagnosed with severe IPF He is now. 83 and struggling with his symptoms of dizziness and very weak. He sleeps for several hours every day which our Dr says is ok. He is on full time oxygen . I continue to question health providers about the dizziness which is the biggest problem he has but have not had any real solutions for help. Going to bed is his only help. Does anyone else suffer with dizzy and what help do you have to treat it. I am very frustrated.
Mary phillips
My husband has just been diagnosed with hog after undergoing triple bypass last May. His pulmonologist said could be 3 to 5 years. He's already in cardio pulmonary rehab because of his heart. He's 75 years old and also has diabetes. Should we seek another opinion or accept what cat scan showed and his symptoms? Really having a hard time knowing what to do. Appreciate any help.
efren cartagena
my wife diagnose 2 months ago we dont know at first what is pf at first until i read in the internet...a was shock and panic knowing that theres no cure..i immediately buy a juicer just the ordinary one and began juicing carrot juice atleast 3 cups a day.. everyday she drink carrot juice no medication now she can walk farther no more shortness of breath no more lots of dry coughing no chestpain...to god be all the glory..by theway im a filipino 48 yrs old same with my wife
richard
Having spent the best part of 12 years seeing Doctors and consultants, all of which kept telling me I didn’t have IPF, when I was eventually diagnosed in Dec 2018 it was surprising just how little information I was given.
My diagnosis came from a leading UK IPF hospital, so looking back now it is very disappointing that they didn’t provide me with anything like the information they probably should have.
I had no advice about Pulmonary Rehab. No questions or advice about exercise or diet, and how they also play a key role in keeping well. Having read a lot online by Dr Noah Greenspan about using Oxygen therapy to allow you to exercise more strenuously, I was shocked when I asked my consultant whether I could have Oxygen, he said it was pointless as my O2 levels at rest were too high at 95% ! A mistake in my opinion.
The overriding thing I have learned is that IPF patients need to take charge of their own care as best they can. Do as much research as you can online, and push the Drs to make sure you are receiving the best treatment and advice possible. It is your life!!
Lastly, IPF is a cruel master, and you need to be prepared psychologically for the battles ahead. This thing comes at you relentlessly and will push your mental strength to the limit. It’s hard to prepare for this, but it helps a little if you know what to expect in advance. Keep positive, keep moving, and make sure you cover all of the available avenues to keep you alive as long as possible
Mike Turner
I started having shortness of breathe about a year ago. My primary sent me to a cardiologist and I had tests done. My heart was fine. I then had chest x-rays and a MRI and my primary sent me to a pulmonologist. He said that I have interstitial lung disease which I had never heard of and which I still know little about except what I've read online which does nothing but scare and discourage you. Now after a year of more scans, breathing tests etc I don't know anymore now than I did a year ago. I am so disappointed. I feel like the pulmonologist didn't give me enough information about the disease and went to long without doing anything further. About 3 months ago on my last visit I asked "What's next ?" His reply "Well I guess I can refer you to a Interstitial Lung Clinic" So...I have an appt Sept 8th 2022. I'm anxious and scared.