Learning to Adjust As PF Worsens

Learning to Adjust As PF Worsens

Just breathe, passionate help for the PF journey

Adjust, adjust, adjust…

Part of living with pulmonary fibrosis is adjusting to changes that happen as our disease worsens. There is so much to adjust to that it can be overwhelming at times.

Supplemental oxygen

I first started using supplemental oxygen two months after I received my diagnosis. I was still overwhelmed with grief, and so embarrassed to use it in public. For months, I went grocery shopping five miles from my home in order to avoid running into anyone I knew. I did this partly because I was my embarrassed to use oxygen, and because I knew I would burst into tears if anyone asked about it. I didn’t think I’d ever get used to using it, but I did.

Using oxygen 24/7

Over a period of six months, I needed to use oxygen 24/7. For a while, I only had to use it when moving about. I thought I could never adjust to wearing it all the time and never get a break from it, but I learned to adapt to this as well.

Using oxygen in the shower

For about one year, I allowed myself to not use oxygen in the shower. It was the most wonderful 15 minutes of freedom! I really resisted using it, until my levels fell into the 80s. Then I was grateful for it and got used to it.

Giving up my career

One year after I was diagnosed, I was forced to close my counseling practice of 30 years. I grieved horribly about this, as did my clients. I used oxygen for six months during sessions, until the portable oxygen concentrator couldn’t give me the amount I needed. I didn’t think my clients and I could adjust to the distracting puff of the portable oxygen concentrator, but we did. Saying goodbye was really hard, but we adjusted.

Getting used to doing much less physically

It is rough spending so much time in my recliner. I try to stay as active as possible, but that has become harder in the last six months as my oxygen needs have increased to eight liters per minute sitting, and 10 liters per minute walking. I used to be able to go to the rehab gym and do one other errand every day. Now I can only manage one activity away from home. It is still hard to get used to, but I’m slowly adjusting.

Finding a new way to contribute to the world

I used to love counseling and public speaking about relationships, self-compassion, and parenting. I’m not able to do that anymore, but I have a wonderful online ministry that I love and can do from home. I write this weekly column, as well as one about being compassionate with ourselves through the challenges of life. I released a book two years ago, and have another one coming out at the end of October. I’m grateful to still be able to make a positive impact on the world. I didn’t think I could adjust, but I’ve found a way.

My current challenge

I’ve found that I need to use an oxygen mask at night when I sleep, rather than a high-flow cannula. I don’t like it, but I’m getting used to it. It makes it hard to get to sleep, so I use the cannula when I go to bed and put the mask on when I get up to use the restroom. I’m usually so sleepy when I get back in bed that I can sleep the rest of the night with the mask on. I feel more rested when I get up, but it is one more thing to adjust to.

Adjusting to many other things as my PF worsens

For me, this is what the process looks like:

  • I realize I have to adjust to something new.
  • I grieve, protest, and think I’ll never get used to it… and then I do.
  • It takes time to adjust, so I give myself the time I need.
  • I allow myself to feel bad for a bit and to feel and to process my emotions. After all, I am a trained counselor. Ha!
  • I talk to God about what I’m going through.
  • I find strength in prayer, the Bible, and the gentle comfort He provides me.
  • I talk with my supportive husband and friends.
  • I know which ones will let me vent without trying to fix my problem, and it releases the difficult emotions and realities I’m feeling.
  • Over time, I adjust to my new normal.

The current adjustment doesn’t seem as impossible as it initially was, and I seek to live the life I have to the fullest.

I hope this was of help to you. I’d love to hear the ways you’ve adapted to some of the changes you have faced. We are different and have different make-ups, so what works for one, might not work for someone else.

I’d love your response

What is it like to constantly have to adjust to new information from your doctor that is discouraging? How do you cope with having to adjust to new limitations? What helps you adjust and live life to the fullest?

We’re in this together! Please share this post with anyone you think could benefit, or on social media.

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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.

37 comments

  1. Dave Raedeker says:

    What you said is pretty much my life, or day of adjusting. It seem like changes happen with my health, body and then I make adjustments to accommodate the change. I always try to keep a positive attitude in each situation. I do one day at a time and thank God for another day. Thanks for this message it made me feel good.

    • Hi Dave, I’m so glad my column was helpful and accurately reflects what you go through. I try to keep a positive attitude too, and am also grateful for every breath and every day. Thanks so much for taking the time to respond 🙂

  2. Mary Lasowski says:

    Thanks Kim for your help, I saw you on the webnar recently, it’s good to see that there may be help out there for that contest, I hope it can be a new happening for breath.

  3. Russel J Fabre says:

    Your actions to the inevitable worsening of our bodies due to IPF is definitely the sign a strong willed fighter. Your challenges and life adjustments are a true inspiration. I too have had to adjust to the same type of challenges. My answer has been to design, engineer, and build solutions to adjust my lifestyle. I love to travel, but am limited because of the need for supplemental 24/7 oxygen. So, I modified the RV to accept a concentrator and plumbed outlets throughout. I’ve modified a backpack to allow me to keep active outdoors. Now I’m modifying the house. Dr. says I need to patents some of my creative answers. I keep keeping on and won’t give up easily!

  4. Valerie says:

    My darling Sha Sha is living with this illness she is like a daughter to me, I am witnessing, the changes in her life wearing her oxygen daily,it’s so amazing your article touched my heart, as my ShaSha lives with illness, I ask the Lord to continue to bless her, I thank you for your courage and strength .

  5. David Ray says:

    Hi Kim, great column. Very similar to my story, but you just go through the steps. It’s ok to be angry, it’s ok to cry, just don’t stay there. Pick yourself up or let God pick you up, each one of us can help pick someone up.
    Thanks again Kim for writing this.

  6. Liwtep says:

    I was diagnosed in 2013, my first reaction, was “why me” then after investigating what IPF was, I decide to be very positive, and not let it beat me. I was given the normal 2 to 5 years, I am determined to reach at least 85 I am now 79. At first I needed 1/2 an hour of oxygen a day, I now need 2 hours, and I have learnt to pace my self. I hate sitting in a chair all day long, and try to keep as active as possible, in body and mind. Your posts are an inspiration, and have helped me.

  7. Russel J Fabre says:

    Thank you for putting your feelings into words. As a caregiver it helps me to understand better what my husband is going through. Prayers continue for all suffering with the this disease. Anita

  8. Donald Turner says:

    Kim, you are an inspiration to us all. I just went to 8L while resting and 10L active. The cannula is bothersome as it is larger and the home concentrater sounds like a tractor but I’ll get used to it. My body is going through some adjustment because I’ve been taken off Ofev, but I fight the fatigue and enjoy that my appetite has improved. I too, rely on my family and friends for support and my faith sustains me. God Bless.

    • Thanks for your encouragement Donald. Sounds like you and I are in the same boat. I use liquid O2 during the day, and my concentrator at night. I put a long cord on it and put it in the bathroom with the fan on. This reduces the noise and gets rid of all the heat it puts out. I’m so glad your appetite is improving, and that your family, friends and faith sustain you! Ditto!

    • Diane West says:

      Donald. My husband is where you are with oxygen therapy 8L at rest and 10L active. He’s going to try to put the “tractor” loud concentrator in the garage because it’s not only noisy but so very hot. We thought maybe we’d buy a baby monitor on low volume to make sure we can hear the beep if it malfunctions or gets disconnected when asleep. We shall see if it works.

  9. Robin Ives says:

    Hi Kim – Your columns have brought me much peace as I watch my husband go through this journey. It is very helpful to see what you need from others so I can provide that for my husband. He doesn’t vocalize as much but I can see it in his eyes the disappointment about things he used to be able to do that he has to ask for help from others. I try my hardest to be patient with him and I do not pressure him to do too much on my list of “things to do” in our new home. Thankfully we were able to pay for some updates in our 1970 “new to us” one story home. Thank you for your guidance.

    • Hi Robin, It does my heart good to know my columns have brought you peace and given you helpful information. Yahoo! That’s what I’ve been hoping for 🙂 So glad you are in a one story home that is working for you.

  10. Judi Zoboli says:

    Boy, do I ever know all of those adjustments. I’m not up to 10 yet, and certainly do not look forward to it. However, all of the ‘adjustments’ you talk about are a part of my everyday life. Hard, but doing it. I hate ‘housebound’, but that’s where it seems to be leading!

  11. Eileen Lewis says:

    Kim, What a wonderful article. I always love to hear of ways to adjust and take it in stride. I’m sure you are a wonderful counselor. I just read Charlene’s article about missing travel. Another area to adjust.
    Keep up the writing.

  12. Anne Tincher says:

    Kim, thank you for your encouraging words. I, too, have IPF..diagnosed since July, 2016. My O2 needs are not as high as yours, but I am on it 24/7. One thing that helped me was the Serenity Prayer in that I have accepted my new way of living. I gave up my horseback riding that was such an exciting and fulfilling activity. Now I just have the energy to go to rehab twice a week and run an errand or two every few days. I can’t change my disease, but I have made better food choices, lost weight, and make sure I get my rest. Acceptance helps me to stay at peace.

  13. Lorna says:

    Wonderful words. I was diagnosed in 2014 at 66. Did not want to wear oxygen but had to. Found a place that had oxygen glasses. If u are under 5 they are wonderful when u go shopping or out to dinner. Ck out oxyview.com. Prayers to all of us for a cure and strength!

  14. Uzor says:

    Newly diagnosed with IPF. Had initially been told that I had Asthma/ COPD but continued to feel more breathless on excertion.
    This prompted me to see the doctor again and I was told that my oxygen levels keeps dropping.
    I have now been referred to the lung specialist
    Glad I found this site as it helps me to hear other people’s views on how they cope with this disease and for the support.
    Peace and love to all.

  15. Diane West says:

    Yes, thank you for confirming our adjustments each and every day with IPF. My husband was diagnosed two years ago and he pretty much goes along with exactly how yours has progressed. He is now on 10 liters while moving around and 6 liters while sitting. Yep, now uses it in the shower too! He checked his oxygen level the other night when he was ready for sleep and had to adjust it up to 6 from 2. He’s planning on getting a transtracheal Oxygen catheter inserted to help him get more from the oxygen he uses.

    He does not give up easily however. He literally puts his oxygen hose out the bedroom window and runs the hose up the hill where he’s working in the yard. He’ll put the whole home concentrator outdoors so that we can still work on our landscaping! He’s a trooper for sure!

    • Thanks so much for sharing Diane. I’m so glad that my column accurately reflects your husbands experience. What an amazing man! I love his fighting spirit…and yours too, by the way! He is so blessed to have you by his side!

  16. Melissa says:

    Thank you for sharing. Our family has been touched by this disease twice in the last two years. It’s so frustrating to be so helpless. Our strength comes from God. We have no control over this disease, but we have a choice how we are going to live our lives. My father has it and my father in-law had it. It is heartbreaking to see your loved ones suffer. I appreciate how you chose to find other ways to help to continue to reach out. God wants us to use the time we have doing what we can. Thank you and God bless.

    • Thanks so much for your comment Melissa. I am so very sorry that you’ve been touched by this disease…twice, on both sides of the family! I cannot even imagine how helpless that must feel. I too find my strength in God. Just like you and your courageous family, I try to live my life to the fullest with the time I have left. So sorry for how heartbreaking it is to see your loved ones suffer…it is a different kind of suffering you are going through. God Bless you and your family as well.

  17. George Clayton says:

    Kim
    I was diagnosed in Nov 2016 with RA and discovered much to my amazement all the areas my body would be attacked by it. I was also diagnosed with Interstitial Lung disease a form of PF.

    I really appreciate your column. It is the only place I can get the needed info on what will this actually look like as it progresses. Medical definitions and possible treatments are all easily located on the web but your column is the only one where I can hear from other patients about the real impact of this disease on daily living.

    Thaks so much for providing the forum to help us learn and cope

    • Hello George,

      Thank you so much for your comment. It means the world to me! I write this column just for this purpose, so your comment lets me know I’m on track. It is hard to get straight answers from doctors about what to expect. We can all support one another with solid information, encouragement and empathy. Thanks so much.

  18. Elizabeth hohlakis says:

    Dear Kim,
    Thank you so much for putting into words what we are feeling and having a tough time expressing. I was diagnosed in April of 2016 with ILD. My world has very quickly run out of my fingers. The changes came almost on a daily basis so that now I m on 4 liters of oxygen 24/7. I can do very little without my oxygen dropping into the 70’s. I try to stay strong and keep smiling but do have some bad moments. Keep writing and thank you again.

  19. Katherine (Katie) Broach says:

    I wonder if other IPF sufferers are noticing the joint discomfort that comes with this disease. I had arthritis and stenosis and bad knees long before IPF came along and for a long time, I assumed they were all worsening with age until I read painful joints come with IPF. My only relief is Tylenol arthritis. Any suggestions?
    My family thinks surely exercise and activity are the answers; both are very painful. I am 79, female, and live alone. By God’s grace I have a homemaker who comes in 2 hrs a week. I miss the healing qualities of a pet but cannot care for a dog and am allergic to cats. As an only child, I have often been alone but never lonely. As this disease progresses with its restrictions, i have been lonely for the first time in ages. I do love to read and have an active email connection with many friends. Opened to suggestions here as well. Blessing abound nonetheless.

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