It is easy to assume that a disease characterized by fibrotic tissue in the lungs, preventing a patient’s ability to breathe, would affect them physically. This is a very basic description of a cruel, widely misunderstood lung disease called pulmonary fibrosis (PF).
While there are many credible websites filled with a plethora of information on PF, the most informative and helpful pieces of information for me, as a patient living with IPF, have always come through connecting with other patients. That’s why I am excited to be a blog contributor for the IPF Foundation. It is my sincere hope that sharing some experiences of my life with IPF as a young adult will help others navigate this life-threatening lung disease.
While the blog topics will widely vary, I’d be open to hearing from you about helpful topics for you or your loved one affected by IPF. Please feel free to connect with us on social media, including the IPF Foundation Facebook page or right here on the website.
For those in the PF or IPF communities, my name may be familiar to you as I also write a column for Pulmonary Fibrosis News. I plan on continuing this role, and also look forward to helping others further understand the type of pulmonary fibrosis I have, which is “idiopathic”. The disease progression and treatment of IPF can differ from other types of fibrotic lung diseases, and the IPF Foundation is committed to advocating and fundraising for the most promising research to accelerate cures and end IPF. In my opinion, the many different fibrotic lung diseases are still widely misunderstood by the general population and the more information we have, the better to help generate earlier diagnosis’, accelerate treatment options, and fund research. A large component of achieving these goals comes from the willingness of patients to share their stories, so I am honored to be involved with these two organizations doing brilliant work on behalf of all of us.
For my first blog post, and in an effort for new readers to get to know me, I thought I’d begin by dispelling the myth that IPF affects patients only in a physical way. Understandably, this is the most well known way someone could assume a lung disease could affect a patient. That said, there are so many more ways this disease impacts us. I will elaborate on each of these in future blogs as I continue to write for the IPF Foundation, but for now, I want to talk briefly about the different ways this disease has changed my life.
- Financially: Much of my identity as a young adult was wrapped up in a career that I loved and was good at. Not only did my career help me feel accomplished in helping others—which has always been something I strive for—it’s also given me financially security. Having completed two post-secondary degrees, I was well on my way to paying off student debt when IPF crept into my life three years ago. As a result of my lung disease, I’ve had to reduce my hours at work and establish special accommodations to ensure I am safe, comfortable, and effective in my work. IPF has changed my feeling of financial security; always threatening my ability to earn an income if it flares up, requiring me to be off work for an extended period of time.
- Socially: No one wants to hear that their family member, friend, or loved one has a life-threatening lung disease. Sometimes when that information is revealed, it can be too much for someone to cope with and they begin to stray away. Sadly, this has happened with some of my friendships. But the exact opposite has happened as well—friends have stepped in at intensely close levels, wanting to care-give and be involved in every aspect of this disease progression. While this latter aspect is appreciated, it is not sustainable, and I’ve had friends burnout from this role and our relationship has never been the same.
- Mentally: My ability to remember the fine details of a task, or problem-solve without frustration has been drastically affected by IPF. I can only attribute this to the brain-fog many patients experience as a result of being chronically under-oxygenated. It could also be as a result of the medications I am on to help manage this disease. Regardless of the reason, both my mental problem-solving abilities and my memory have been changed as a result of IPF.
- Emotionally: I pride myself on being able to cope fairly well with my disease, but sometimes it becomes unbearable and all my coping skills are lost. In these moments, I feel so far from normal that I withdraw from my environment and just cry for days. Thankfully, I know the importance of seeking professional help for the emotionally tough days, and I would encourage everyone to do the same.
This is just a quick glimpse into my life and the way IPF has affected me—beyond the presumed physical implications of a lung disease. I look forward to continuing to share more of my story with you as a blogger for the IPF Foundation.
Sincerely,
Charlene Marshall
I am only 3years I to this journey.
Though my function has dimished, I am currently considered stable ( whatever that means). I know I have alot to face and sometimes it scares me. But I try to maintain the attitude that it is what it is and take it as it comes. I also have Rheumatoid arthritis, Sjogrens and fibromyalgia.
Hello Marilyn,
I have just discovered this blog and am happy to find it. I hope that we people who share this malady can communicate with one another and be supportive. Yes, we all have to maintain the attitude “it is what it is” and take it as it comes. When I was a kid this idea of “growing old and getting sick” happened to other people..it wouldn’t ever happen to me. I think all kids feel this way. We each may be older people now, but inside each of us is still that kid we once were. This illness is a learning experience and I suppose it is an opportunity to teach our loved ones how to face hard situations– since we have no choice. best wishes. JoAnn
Thank you, Charlene. Your insights into this disease are extremely valuable to our community.
I am an 82 yr old female diagnosed with COPD years ago! Last August I was diagnosed with PF in the middle double pneumonia from aspiration during an Endoscopy! Plus this was a major exacerbation for both diseases! I am in oxygen 24/7 but doing well right now! Majors coughing spells are my major complaint!
Dear friend – I can identify and empathize with you and the road we are on – sometimes a steep curve with no guard rails suddenly pops up. Fortunately we have the forums and many well placed educational and helpful comments by thoughtful intelligent people such as you… – Steve
Thank you my friend. So glad we’ve also connected on this platform. We’re in this together!
Charlene.
Charlene,
Thank you for your observations and insights, most of which I can relate to personally. I am 74 and was diagnosed with IPF four years ago. Have been on Esbriet for 3 years and regularly participate in pulmonary rehab programs. There has been a decrease in my lung function and I am on poc at night , in car, and lately in theater and while working in yard. Your comments on mental effects of IPF are really interesting.
Just wanted to say “thanks” and look forward to more discussions.
Dear Charlene,
You really hit on all the aspects of this disease. I appreciate your frankness and look forward to viewing your blog.
Barbra Russell
I look forward to reading and sharing in our travels along this “twisted” path before us. From your brief description on your professional background it appears we are a few generations apart age wise but perhaps our experiences can help each other and our fellow travelers.
Thanks for your courage to blog on your experiences with IPF.
Warm Regards,
I am a 45 year old man and diagnosed with IPF 7/2017 after thoracotomy surgery. My right lung was 1/2 the size of the left. Have had flare ups and seem to only get better on steroids. This forum will be good for me. Thank you for opening the door.
I am 76 yrs old, was diagnosed with IPF 10 yrs ago. I am on oxygen 24\7. The past few months have been the worst with O2 levels going to 60’s and 70’s when I walk. My daughter was recently diagnosed also.
Looking forward to your blog.
Thank you for sharing your story.
At age 84 my mother was diagnosed with IPF. She is adjusting and doing well. This foundation and your blog helps me to better understand my Mom and gives me guidance on what to expect and how I might be better at supporting her.
thanks for all the comments i have ipf,had it since 2-7-2017.i was on two kinds of medicine the side affects was so bad i had to stop with it.i am on oxygen 24-7,can not go without oxygen.i am under a dr. at st vincent right nown.these are the first people i have heard from since i have been sick,good to hear from some one.rosa lloyd
I was diagnosed with IPF in April 2017 and was
put on oxygen shortly after. Have been relatively stable with gradual decline. Need
O2 at 3 ltr resting and 4-5 while active. I’m so glad and grateful for your blog. It’s so comforting to read and share this crazy pathway we find ourselves on. What you’ve shared rings so true. This does affect much more than our breathing. Thank you.
I’m a 72 year old male who was diagnosed with IPF in 2012. I’ve been on Esbriet for about 18 months. The first four months were rife with gastric issues but lately just occasional mild stomach upsets. Had triple bypass 8/2017 and I believe that revascularization has helped slow the inevitable conclusion of this insidious disease. Currently on oxygen (5 lpm) 24/7 and any exertion leads to breathlessness as my saturation levels drop into the 70’s. I can’t say I’ve gotten used to the feeling but it has taken concentration to overcome the fear of not being able to get enough air until I can recover my breath. One of the most frustrating things for me is the loss of strength and inability to be as active as I’ve been all my life. Latest spirometry tests showed I lost about a third of perfusion capacity while the most recent CAT scan showed negligible difference.
Thank you, Charlene, for creating a safe place for us to talk. At the age of 56 in 2014, I was exposed to mold spores and coughed for 6 months non-stop, no one could help me. I have been in the medical field all my life and was not going to leave one stone unturned. I was diagnosed with HP in 2015 via a VATS procedure and PF in 2016. I was told I had a year to live and go home and prepare. I am on oxygen 24/7 and always masked while in public. Life sure has changed as you stated in the bullet points, I could add being half the person and now my passion is wearing out trying to be that person. I like everyone else, was told 2000 mg of Mycophenolate and prepare for a transplant. I continue to travel to 3 ILD centers of excellence, use alternative medicine (3 ys) and now Eastern medicine (4 months). I do a lot on nontraditional supplements, to nasal sprays and organic sprouts. My PFT and walk numbers improved this week, have CT on Friday and an ILD appt on July 5th. A few any percentage of improvement – even 2 % is HOPE! While traditional medicine says lung transplant now, I just can not wrap my head around it. However, after 4 ILD specialist said please get the work up – just in case… I am going to start my testing in August, but I know in my heart and brain we need to keep holding on because there will be something for us – simply because NOW, there are so many of us, and our numbers are going to double every year as we all face flooding and wet buildings. Katrina was eye-opening for the medical community, but, not many people knew what to do except to ignore it. Again, I am so happy to hear stories of coping, compassion, and any improvements – as small as they will be with us. One of my greatest issues is falling into a state of great sadness. I am at peace with dying, made my arrangements and try to keep my drawers and closet in order (LOL). I keep telling my self “keep breathing for the cure – even if it only a little breath….
I was having trouble climbing basement steps and almost blacking out. Doctors run test. You have IPF. That was 2016. I was lost didn’t know what to do. I prayed a lot. Started having trouble taking a shower and walking in a store. I am on Facebook and I see the health lung institute. I called them, they said could help sense I was diagnosed early. They set everything up. I had two days of stem cell therapy in Nashville. Three weeks later I climbed the stairs without stopping. Things just seem to get better as time went along. Three months later I had my booster and was back to doing pretty much anything with in reason. The quality of life is great. Please research stem cell. Call the lung health institute. God bless.
Where is the Lung Health Institute located? I was just diagnosed with ILD and am 50 years old. My Pulmonary Function Testing results were normal but CT scans show bilateral fibrosis. I’m devastated but am hoping that this is early, there is hope….
Thank you for your plug sure when I find it very informative and will be looking for future additions. I am 84 years old and was diagnosed with IPF approximately 6 to 7 years ago. I was doing OK until December 2018 when I fell and broke my leg in two places It is healing slowly but I most you can. Or use a portable O2 generator when going out and find it very cumbersome with this candy cane.h it is healing slowly but Amos you can. Or use a portable O2 generator when going out and find it very cumbersome with this and a cane. I tried as rich for several months but could not handle the side effects and had to quit. I am currently in discussions with A position at Banner University Arizona to see if I qualify for clinical trials. I am scheduled to have some CT scans the end of July to see whether I qualify for the clinical trials Are use oxygen at home in the setting of three LPM and also when I go out it is sitting on three Again thank you for your blog And will look forward to hearing more from you.
My fiance Pumlnlogist thinks IPF is what is causing his symptoms. I will show him this blog and forum. So thankful I found it…
Hi, my father was diagnosed Ipf 4 years ago. He takes esbriet but we know that isn’t real a treatment for this uncurable disease. The way it’s hard but we are full of hope and pray. I think that this disease is horrible for the psychological consequences for the sick and his family. I will try to include my father in Galapagos international study. Hope for research and a therapy to overcome the disease. Thank you.
After being admitted 4 rimes in one year with pneumonia, I was diagnosed with COPD. I was immediately put on o2 at 2 ls.
I was diagnosed with IPF in 2018 after being admitted to the ICU with resp. failure. Anyway I was put on Esbrit In January after another admittance to hospital. When I left the hospital they sent me home with some home health care for 5 weeks. I am now on 6litres and consequently had to replace my home concentrator for a larger one and had to return my portable unit and have to use the E tanks. I was having so many problems with sores in my mouth from nebulizer treatments. One with steroids. I got to the point that I could not eat or drink without being in pain. My pulmonologist suggested that I just use the steroid every 3 days. The pulmonoogist also gave me different medications to help with the pain. I couldn’t take it anymore and totally quit the nebulizer trearments 2 weeks ago. There is absolutely no difference that I can tell. Still short of breath when moving around, but, had that before stopping treatments. I really enjoyed your article and posts from others.
I was diagnosed with IPF in 2015 and I have been on Esbriet for about 3yrs. My pulmonary Doctor does not know if it is helping. I have had unexplained weight loss but I was wondering if anyone else on Esbriet also had weight loss.
No, I haven’t seen any difference. I’ve been taking Esbriet for 5 years and it seems to have been halted. I had a CD scan and it hadn’t progressed. I’m lucky so far
Hi John,
Yes, unfortunately weight loss has been common on both anti-fibrotic medications (Ofev and Esbriet) in my experience of talking with other patients. Have you had any pulmonary function tests (PFTs) to measure your lung function since starting the Esbriet? This might help you and your doctor determine if the drug is working. Hang in there!
Charlene.
Enjoy the blog. I had the “TALK” in ’16. When active, I drop to the 70’s, after 2 min. or so. My big no-no is bending over. Do yall have that? Also, I have not fainted or evan gotten dizzy. Will that become part of it?? thanks, homer.
Hi Homer,
I find myself extremely dizzy and light-headed if I bend over for a long time, including tidying shoes or picking up bags off the floor. I haven’t experienced fainting, but did have one episode of syncope where I fell down unexpectedly. I didn’t lose consciousness, but we thought it may have been connected to an abnormal heart rhythm as opposed to my IPF. Thankfully, the tests didn’t reveal anything so I consider it a “random” incident. Hang in there- not everyone experiences fainting as a result of this disease, just ensure your oxygen levels are maintained adequately through supplemental 02 use.
Charlene.
I was diagnosed with old in September of2019 i was out on disc and doing well. In October i was diagnosed with co!in cancer has surgery and was out on chemo. I finished chemo the end of June but my old seem to have gotten worse. I truly believe that taking chemo has made me worse every time q try to stand my oxygen level drops so you think I will ever get better
hello.. my name is JoAnn and I am a retired R.N. I will be 82 years old this month (Sept of 2019). For 25 years I worked in a hospital, often on a respiratory floor. My friend was a unit secretary on the same unit. Another nurse named Cheryl, in her 50s worked on that unit. We all developed Pulmonary Fibrosis.Cheryl was first, had a lung transplant and then died at the age of 53. Last year the unit secretary was diagnosed with it and took Ofev, which made her very sick. She was never a smoker and exercises every day and has for years. She is not on oxygen as yet. She is now 76. I have not been diagnosed yet, but will be Sept 11th when I see a pulmonary specialist. Three years ago I had chest xrays that showed scars on my lungs for the first time. The doctor who ordered the xray made no comments about the scars.
I was diagnosed with a second degree heart block five years ago and feel that my “blacking out” when I rise from a sitting position is due to that cardiac problem.
Why would three people who worked in a respiratory unit at the same time develop this disease when it is fairly rare? There is so much we do not know. Are there are support groups active in Phoenix?
best wishes to all
JoAnn
Banner University Medical Center PF Support Group
755 E. McDowell Road
Phoenix, AZ 85006
If interested in attending please call the Banner Advance Lung Institute directly at (602) 521-3400 for date and time.
Westgate Pulmonary Fibrosis Support Group
Raymond Kellis High School, Library
8990 W Orangewood Ave
Glendale, Arizona 85305
Group meets: Fourth Thursday of every month
Time: 7:00 p.m. – 9:00 p.m.
Madeline Wollmer
cprmandy@gmail.com
602.818.5688
Rebekah English, DNP
Rebekah.english@dignityhealth.org
East Valley ILD Support Group
Mesa Library
Board Room
64 East First Street
Mesa, AZ 85201
Group meets: First Monday of each month
Time: 6:00 p.m. – 7:00 p.m.
Contact: Trevia and Sam Allen
602-463-1883
samuel.allen1968@gmail.com
Contact: Deljean Buenaventura, FNP-C
Deljean.buenaventura@dignityhealth.org
Today is 9/24/19. I am 75 years old and I smoked for 40 years and stopped in 2011. In 2013 I was diagnosed with pulmonary fibrosis, but I did not notice the difference until January of 2018. I had several respiratory infections in a row with no relief, I was extremely exhausted, short of breath, etc. Finally I was started on oxygen 2L 24 hours. It took several months but now I use my concentrator at home and E tanks when I am away and set it at 4 when moving or talking too much in a group. I can easily drop to 69 or less taking a shower, cleaning up, doing chores even with my oxygen on at 4. I can drop my level even while sleeping with the oxygen on. My PF is advanced and I really want to know to what degree. So I will ask for more tests to be done to give me a better idea of where I am at. We just ordered a lightweight, but sturdy wheelchair so I can go shopping in department stores with my families help. I use a cloth wagon to do my laundry (just two loads at a time), and carry garbage to the area on a flat bed. My husband cooks and I clean up and do the dishes. I cannot do much cleaning, and I do nap each day or after being out for two or three hours or after exerting myself like doing the laundry. The brain-fog is disturbing but I am learning how to let others help me and help me find the right words. My family wants to do everything for me, but as long as I am able I need to do some things. I enjoy reading what you all have to say, and I look forward to hearing more.
I am 84 years old [male] and was diagnosed with interstitial lung disease in 2004. I have been on oxygen at night [2L] only for most of that time. About a year ago I felt I wasn’t getting enough information on my condition and asked for a referral to UCSF Interstitial Lung Clinic. My breathing had gotten much worse over the past year and for some reason my pulmonologist was reticent to put me on oxygen. The Pulmonologist at UCSF immediately put me on oxygen 24/7, suggested pulmonary rehab and explore medication [Esbriet]. I started at 1L but in doing rehab, I needed at least 3L. 3L’s help but need to rest often when I walk any distance. I have started using a cane for balance and security. I bout a rolling walker and able to walk for about 30-40 minutes on 3L if I don’t walk too fast.
My cough is getting worse and I’m losing weight for unexplained reasons. My life expectancy is far beyond the 2-5 years expected but I’m wondering if my worsening is just the beginning of that 2-5 year expectancy. No one really knows do they? Thanks you for this blog. Now I can communicate with others in my condition. John H.
Hello all. I was recently diagnosed with PF (June 2019). I am going through tests ensure it is not anything else but, so far, it is looking like IPF. I’m currently 55 years old. Old medical records and x-rays indicate I may have been diagnosed with PF since 2011. I am prescribed O2 at 2 liters (up to 5 liters) while ambulatory. My O2 saturation is 95% while resting but quickly drops into the 80’s as soon as I become ambulatory. If I use O2 at 5 liters while ambulatory, I can maintain in the 90’s. But, if I exert anything more than walking, it drops quickly. I just started taking Esbriet (on my 3rd week). From the sounds of others on the blog, I am fortunate so far. A couple questions…
1. Am I doing any more damage to my lungs if I am not on O2?
2. I am in line for a transplant but question the quality of life afterwards. Is there any place with more info on quality of life after a transplant?
Thanks and good luck to all who are dealing with PF.
I am 69, and pulmonary fibrosis just “popped up” in my chart although I’ve never been diagnosed with it. I have to admit I’m scared. Is there a pulmonary clinic in the Denver area? I really need to talk to a specialist. I have no idea what to do and would appreciate some guidance.