PatientsLikeMe

“My new normal.” PatientsLikeMe member Jeff tells his personal journey with interstitial lung disease

Have you met PatientsLikeMe member Jeff, also known as NinerFan? He has been living with interstitial lung disease (ILD) since 2004 and he recently took some time to share his journey with us. He spoke about everything from getting diagnosed to being a newlywed, and gave a great list of advice for others going through a similar health experience.

Jeff1

In Dec 2004 we decided to move to another apartment and I was becoming so short of breath I couldn’t take it. I was 37 and had gotten into the best shape of my life that year, so I knew that there was something wrong. I was getting night sweats and coughing, so I figured maybe bronchitis or something. My primary care physician (PCP) sent me for X-rays and they came back abnormal, not really viable because I could not take deep enough breaths, so I went for a CT scan. That’s when I first heard the term ILD and I was scheduled to see a pulmonologist.

I did some web searching and got really worried. A week later the pulmonologist was arranging a biopsy. I didn’t understand why, but we did it. I had my case sent to a specialist at UCSF, and they started me on treatment nine weeks after I first noticed symptoms. I was in terrible shape. The recovery from surgical biopsy was rough and my breathing was still very labored. But, a couple weeks later the prednisone kicked in and I was feeling better. I wasn’t back to original shape, but I was able to walk around a bit without panting.

My new normal is what I call it. I could walk about 100 feet before I needed to stop and catch my breath, but forget about stairs or running ever again. I would need supplemental oxygen when walking any distances and for sleeping. My new normal left me at about 40% lung function, but it’s enough to keep my saturation just above 90% on most days if I’m sitting. So at least I can work a desk job. This new normal has lasted about 8 years so far, and seems to be stable since about 4 months after treatment.

Jeff2

Being a 37 year old newlywed man and developing this was a tragedy of epic proportion. I have learned to deal with it, but have gone through times of deep depression. I cannot sugar coat this because my symptoms and condition have completely altered my life. I never can let go of what should have been or should be. But, knowing others that are much worse has opened my eyes to the quality of life I still have. I still get to work and provide for my wife and haven’t missed more than a few days here and there dealing with this condition. And I know that there are opportunities for medical advances as long as I’m hanging in there. Also, should things worsen, I’ve known many that have lived richer lives over ten years after transplant and the advancements in that procedure are outstanding.

Hear are some warnings that I have learned the hard way and from others in the community.

  • You are your best advocate, so be sure to stay on top of your appointments and get second opinions from specialist.
  • Be careful to monitor yourself for side effects and secondary conditions because there are many.
  • Be sure to create a support system with family and even online with others in your condition.
  • If you need supplemental oxygen, then use it. You can develop other conditions if not.
  • When you’re researching online, don’t believe everything, especially in regard to life expectancy because most data is old and there are so many forms of ILD and progression.
  • You will need CT exams regularly to check your progression or stability.
  • If you got this from some kind of environmental or other trigger, you need to stop exposure to it forever.

I hope that anyone who lives with ILD gets the kind of support from loved ones and online friends as I have. I know many will not be able to control the progression of fibrosis from the inflammation in their lungs or end up like me, basically at snail speed, and I wish them all the best in life.

9 comments

  • Thank you for this. I can relate to some of it as I am a two-time lung cancer survivor. I was not supposed to survive even the first time but I just say they forgot to tell me. Yes there is a new normal and I have become a real advocate for cancer survivors to the point that I helped start a support group in our area. We are still small but have been going since 2009.

  • My mom was diagnosed with ild 3 years back .had been under control dose of steroids since then .was also given vaccination for pneumonia and other bacterial infection diseases . nevertheless she couldn’t survive and died in ventilation .her loss is unbearable to me .

  • I am in the hospital with fourth stage sarcododis , it progressed at a rapid rate first hospitalization, UC Davis team of thirty doctors God is here and I am expected to be here many months, and then Skilled Nursing Facility

  • Thank you for sharing your story. I had a very similar story–in shape, started having trouble breathing, then CT, lung biopsy and treatment at UCSF for ILD (follicular bronchiolitis). I, however, switched from prednisone to antibiotics and feel much better. I also decided to strictly follow the “Autoimmune Fix” plan by Dr. Myers. I really recommend it if you want to naturally reduce inflammation. I am just starting this but already have more energy. good luck and thank you for sharing your story.

  • Thanks for this post. I can see it was a few years back so I hope all is well with you. I have recently been diagnosed with ILD. Gone from running a marathon last year to being severely out of breath after just half a mile. I guess the good news is I can still walk around normally and can still run half a mile. The negativity I get from my diagnosis has sometimes made me feel guilty as there are so many more people worse off than me, however reading this has helped so thank you. Fingers crossed the treatment stops any severe progression.

  • I was diagnosed years ago but it has gotten worse. I had a another lung biopsy 2 months ago and it has gotten worse. Yes, that was very painful to get through. I take prednisone when I need it. I try not to because I gain so much weight, but it helps. I use oxygen at night and when I’ m home. When I am gone for awhile my oxygen drops to mid 70’s to low 80’s. I have a hard time breathing when walking and steps. Sitting still is the best and that is hard to do. The bad thing is that I don’t have much support. Just my sister. My parents have already passed away. The few friends I hang with don’t give much support. I’ve put it in God’s hands