In honor of Pulmonary Fibrosis Awareness Month, I’d like to tell you, in my own voice, what it’s been like living with a terminal lung disease as a young woman. Naturally, I felt very alone, unsettled, and isolated from my peers when I was diagnosed. Sharing about my experiences, however, has not only helped others, it’s also helped me live with IPF. Here is my story—listen along or read!
Audio Transcript:
After returning home from an overseas vacation in early 2015, I found myself persistently short of breath, fatigued, and dealing with a cough that wouldn’t subside. My career at the time involved working with children, so naturally, I assumed my constant exposure to their germs was the reason I was getting sick so often, or that the virus I had just wouldn’t clear. I had also spent nearly a month overseas and over 15 hours breathing in recycled air in a plane returning home, so I didn’t think much of the fact that I’d gotten so sick. A variety of prescribed inhalers, steroids, antibiotics and other medications only alleviated my symptoms for short periods of time and then they would resurface.
Despite that, I went overseas again toward the end of 2015 and after being so active my whole life, I knew something was wrong with my lungs when I had to stop during the climb to the top of the Sydney Harbor Bridge. It wasn’t a strenuous climb and I remember counting in my head how many more minutes until the tour guide stopped the group to point out some sights throughout the harbor. At that moment, I knew I’d need to go back to the doctor and push harder to convince them that the symptoms I was experiencing were not just viral.
I returned home from Australia and went to the doctor in December 2015. There, I shared the struggles I’d been having with my lungs and that I was fearful of how difficult it was becoming just to breathe. This was the first time I remember the nurse putting a probe on my finger to measure my oxygen saturation, and it was the first real external indicator that something wasn’t right. The reading was 91 and my non-medical brain compared that number to grades in school; I thought 91 was pretty good, unaware that for someone my age, their saturations should be 97 or higher.
The doctor sent me to the Emergency Department right away for further diagnostic imaging, tests and blood work, which would be read right away, as opposed to waiting for the results as an outpatient. Things were very confusing at this time for me, and I remember wondering why I was being admitted, because I didn’t feel particularly worse than I had in the months prior. I re-told the story of where I’d travelled in the past twelve months, along with what I did at each destination to multiple doctors. I told them about my career, where I’m regularly exposed to germs and then re-iterated how persistent my symptoms had been throughout all of 2015.
By the time I was seen in the Emergency Department, I’d been experiencing shortness of breath, fatigue, and a chronic, pesky cough for nine months. We reviewed my previous doctor’s visits and prescriptions in great detail, and in order to alleviate some of my acute symptoms and open my airways, the doctor gave me multiple nebulizer treatments to try and improve my ability to breathe. I was released the next day with several outpatient appointments set up: HRCT (high-resolution CT Scan), an appointment at the adult asthma clinic, PFTs (pulmonary function tests), more blood work, and a meeting with a specialized respiratory physician at a hospital about an hour away from me.
It was April 7th, 2016 that I was diagnosed with Idiopathic Pulmonary Fibrosis, also known as IPF. I was only 28 years old.
This is part 1 of a 4-part series. Stay tuned to find out why I chose to write about my experience, why PF Awareness Month is important to me, and how you can spread the word about IPF.
Please don’t hesitate to reach out by leaving a comment below. I look forward to hearing from everyone while I continue to share my story with you all.
Check wei Institue natural Chinese medicine for ipf. No side effects I been taking for almost month.
I’m 76 and have IPF. I’m taking a drug called OFEV and it’s suppose to slow down the scarring in my lungs. It must be working cause my last 2 breathing test remain about the same.
Is this the nasal spray that I’ve heard about? If so, how did you get it since it’s not available yet in the USA?
The symptoms sound very similar to mine, the difference is I am 80 yrs old, versus your 28. I am currently on Esbriet 267 mg for life. My heart goes out to you, but you can beat this thing more than you think you can. Just keep taking one day at a time, then it becomes one week at a time , then on and on you go into your life.
I found for me it was exercise…exercise….and more exercise when you can. My breathing tests seem to be under more control between my medicine and walking exercises daily, but I do know what is in the future somewhere down the road. Just try to remember there is always a next day coming your way just like me. Good luck to you and I will save a big hug just for you when you need one.
Rusty
God Bless you My husband had IPF it is a cruel disease. I pray for a cure for you and all the others suffering from this.
I am going through all t his now although I am 79 years old. Just had a pulmonary dr tell me he was afraid to treat me and indicated that I should go elsewhere!! Another one told me to “live with it” and if he had bothered to try and find out why I was having problems when I first went to him I may have not gotten this bad so quickly. I can imagine your frustration because I am feel it now. My prayers are with you
and am looking forward to hearing the rest of your story.
If your Dr. doesn’t have a knowledge of IPF find one that does. I had to change drs 4 times before I found one that would advocate for me in getting the proper care and testing on a regular basis. You have to educate yourself, join a support group in your area or online. You need to discipline yourself to do exercise on a regular basis & eat healthy.
I’m a 76 yr young woman who was diagnosed 9yrs ago with IPF. At that time I was told I had 2 to 5 yrs to live. I’m at 9 yrs & and still going. I also had a friend who lived 13 yrs with it & died from another cause. So take heart. Take good care of yourself. Exercise, exercise, exercise and stay positive. God bless us all in hopes for a cure soon.
Sending love and prayers to all of you. ⚘?⚘
So sorry you have IPF at such a young age! I was diagnosed six and a half years ago, but am now 89 so it is not so bad for me. I am not on oxygen yet and the disease is progressing quite slowly. I will pray that you have the same experience!
My husband is 50 and has this terrible disease. We just finished testing to see if he is a candidate for a lung transplant. It doesn’t guarantee a much longer life span but his quality of life hopefully will improve so we can enjoy our life together and he will be around for our children for as long as god is willing.
Thankyou for your story Charlene. I am 73 years old and in 2016 a spot appeared on my lung. The doctors urged me to go to a specialist but I didn’t see a pulmonologist until 2017 when she confirmed that I had IPF.
I also get very tired easily and have shortness of breath climbing stairs or pushing a suitcase or walking without my cane. So far I do not have a cough. I saw my doctor recently and she said that nothing had changed over a year. It appears that my case is slow moving but one never knows. I have told no one about my illness yet. I do worry a lot about what happens if or when it progresses. It is so great to share my story with others. Prayers!!!
I was diagnosed in 2019. Diagnosis was prolonged as people told me I needed to exercise more. Symptoms persisted.
I was diagnosed two months ago but I’m 78 years old. I’ll be praying for you that our Lord gives you many more years cause you’re so young. The specialist told me that she’s not putting me on any therapy right now but I’m going in for tests next month. ???
Charlene l have lPF was with Pen Medicine from 2014 went through all testing in 2019 of May was going to get on list for transplant in middle of August of2019 l was dropped from transplant side l am now going to Cleveland Clinic for second opinion in Nov for testing l am 67yrs old trying to stay positive good luck in future
Iam 85 have IPF FOR THE LAST 8 years on ESBRIET 801M G also take OFEV 300 MG a day MY DOCTOR IS at temple in Philadelphia
Thank you Charlene for sharing. I’m 47 and was diagnosed with ILD interstitial lung disease 9 months ago after getting dental work done I was having trouble breathing, that was is January they told me I would not make it to my 47th birthday in July which I have thank God. Everyday I’m getting worse I’m on oxygen 24/7 I can no longer work very difficult to
socialize, a struggle to get to my dr’s at Massachusetts General. Also I need a double lung transplant which the time frame is not in hand I’ve been dealt. I pray that your health improves and you get your transplant you have a long life ahead of you.. I’m sending you prayers and support. I’m so glad I saw this I didn’t know so many people go through what I have been . Thank you
Diagnosed in 2005, 85 now. IPF with about 200! subsets
Exercise. Healthy muscles take less O2. Exercise pushes the lungs and maybe…. Gastric Refux controlled thru drugs, surgery, nasal drainage controlled. Positive Attitude. Hard to argue with 14 years. But ….
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Thank you for sharing your stories. I am 73 and was told I had IPF 2 years ago, but was still very active, working 6 days a week. I had noticed increased difficulty breathing, short of breath more often. I didn’t know or understand O2 saturation at that time, but didn’t seem to slow me down much, guess being stubborn. Then this past April I needed back surgery to relieve a pinched nerve in my back, which got infected with bacteria and was bad. Had to have another surgery to clean that out. Then all of that exacerbated my IPF which landed me in the hospital in respiratory distress. From then on I have been on oxygen full time. I have been in and out of the hospital 7 times sense April for cardiac and pulmonary issues. I am home now recovering very slowly, but all of this has taken a big hit on my outlook. Doesn’t take much activity to get me winded. I wouldn’t wish this disease on anyone. Going form active senior to basically confined to home with the use of oxygen is not fun.
God bless you all I have it and it is harder and harder to do the things I used to do . Some of you said exercise but what kind ? I can’t walk very far I need my oxygen if anyone can help me thank you
Find a Pulmonary Rehab program; they will help you figure out what the best exercise is for you and how much/long.