Dealing with a Recent Exacerbation

Dealing with a Recent Exacerbation

Just breathe, passionate help for the PF journey

Pulmonary fibrosis (PF) patients often experience a sudden worsening of their disease — this is referred to as an “acute exacerbation.” An event such as infection often triggers the exacerbation, and sometimes the cause is unknown.

About three weeks ago, I started needing more oxygen. I now require 1 extra liter per minute (lpm) while sitting, 3 extra lpm while standing, and 4-5 extra lpm while exercising. The change was quite a shock. I hadn’t been sick, but I had just returned from a trip with my husband to attend my 95-year-old father’s memorial service.

When we got home, I told my husband that I thought I’d done well on the trip and wasn’t as tired as I’d expected to be. I guess my lungs didn’t agree. After a week I noticed I wasn’t bouncing back. I saw my pulmonologist who agreed I wasn’t sick, but my lung function, measured by forced expiratory volume (FEV1) was definitely worse. It had fallen from 47 percent to 38 percent, which explained my need for more oxygen. While my doctor didn’t say the drop was due to getting overly tired, it was the only thing that had changed.

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Life is harder

As you can imagine, my lung function decreasing by such a significant percentage is quite discouraging and has made life harder. I get tired more easily and need more help. I’m allowing myself to grieve. I am asking for more help from my husband and others — something I’d rather not do.

My new normal has also led me to prioritize how to spend my precious time and energy. I’m going to cut back on some activities and also make sure I take care of some things I’ve put off. I want to make sure my husband has all the information he needs to take care of me as my health gets worse. I’ll be writing some columns about this in the future and will share the checklists that I create.

It’s normal, but a shock

All PF patients fear an exacerbation. It’s one of those things you know is coming, but when it hits, it hits hard. I was sad for a few days and just watched Hallmark movies. I’m now in the “figuring out what to do now” phase. This involves praying and making lots of lists. Although I’ve retired as a marriage and family therapist, I spend some time each day on social media promoting the three books I’ve written, including the latest one for PF patients and their loved ones.

It’s been a blessing to connect with others online, but I’m not going to be able to keep doing all of that. I’m pondering what to keep and what to give up. All of these steps involve grieving new losses, which is healthy but hard to go through.

Compassion as our disease progresses

We need to be gentle with ourselves about is how hard it is to have a progressive lung disease. The reality is that over time the scarring in our lungs increases. When this happens, we need higher levels of supplemental oxygen to provide us with the amount our body needs. We get more tired and our limitations increase. We go out less over time. The progression of our disease requires adjustments to each change and this can be exhausting and discouraging. Being a friend to ourselves about what we’re going through can really help.

Here’s a short video I made about this:

We can show ourselves kindness and compassion by telling ourselves that:

  • It’s OK to be learning how to manage this disease and not know how to do everything.
  • I have a disease that is slowly progressing, and I will continue to adjust to my new normal with each change.
  • It’s normal to be sad, angry, confused, and scared about each loss and challenge.
  • I won’t be hard on myself for struggling or making mistakes.
  • I’m doing the best I can, and I’m heroic for hanging in there.
  • It’s OK that I may not know how to do this yet; I can learn.

I know I’m not the only one to go through an exacerbation. Call your doctor if you suddenly get worse over two to three days or even sooner if your symptoms are severe. Your doctor will order tests to figure out what is wrong and determine how to treat you; some patients require hospitalization, while others do not.

I’d love to hear from you!

Have you gone through an exacerbation? What tips can you share to make this a little easier?

Please leave a comment below and share with those who could benefit via email 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.

44 comments

  1. Rachel San Miguel says:

    Hi Kim I’m so sorry you’re going through this disease. In March it will be one year that I was diagnosed with the same disease.

      • Jacqueline Lovelk says:

        I was diagnosed two years ago. My recent CT scan shows progression of PF and breathing tests show a decrease in ability.I also have a large hiatal hernia needs yo be repaired, pushing against left lung. Dr says anesthetic could cause having to be on oxygen permanently. Also wants me to start Ofev. Anxious about cost and side effects.

        • Denise Mitchell says:

          Don’t worry about the cost of ifev once the government opens back up you can get a federal Grant to pay for it

  2. I have heard that metformin hydrochloride decreases the progression of the disease. I have taken broccoli capsules or Brocolinol 500mg, licorice capsules, I take magnesium chloride every day and moneral water with pH above 8 or add sodium bicarbonate to water. for the cough to dissolve a chocolate 70% cocoa in the mouth. cocoa has a property to stop the cough. Search all this on google.

  3. Barbara Barr says:

    Hi Kim. I find it unusual that you’re quoting your FEV1 with PF. Generally, FEV1 is used as the measure for obstructive lung disease, and for a post lung transplant, while FVC or Forced Vital Capacity is used for PF. Since the PF lung is shrinking in size, the FVC is a more accurate measurement of PF progression. For COPD, the lungs are becoming larger and floppier and it is important to measure how well the COPD patient can exhale (FEV1). For post-transplant, the FEV1 helps to detect early rejection and other issues with the airways.

  4. Shelly S. says:

    I have never commented before… haven’t felt comfortable and my dad is a private person…but this really hit home. My dad has IPF. In April, a trip to the ER for kidney stones was just the beginning of what would turn into a week in the hospital, going under anesthesia twice for lasering (way to large to pass), and subsequent sepsis a week after the stones were broken which led to another 5 days in the hospital. Prior to all of that, he was on NO oxygen. He just knew his limitations and acted accordingly. At 75, he still drove and worked 5 days a week consulting in an industry he loved. Now he is on oxygen 24/7 and has so little energy and out of breath just by standing, he has almost no mobility. He no longer drives and relies on my mom for every day care. This acute exacerbation (now that I know what to call it) has been life altering. My brother, myself and other close friends help with doctor appointments and errands. I live out of town but am able to work remotely to spend more time with them. It has been shocking to see how something as routine as kidney stones could snowball into his current situation. But in the 5 years since his diagnosis, I’ve read what I can to learn and try to understand IPF. This page has been helpful. I pray for all who must endure this disease.

    • Hi Shelly,
      Thanks so much for commenting. What a horrible series of events for your dad’s health….starting with kidney stones and ending up on oxygen 24/7. Such a devastating turn of events. So sorry for how this is also affecting you, your mom and and your family. So glad my columns are helpful. I just published a book for PF patients and their families that might help. If you are interested it is available on amazon – “Pulmonary Fibrosis Journey: A Counselor and Fellow Patient Walks with You.” Your mom and dad are blessed to have you by their sides.

  5. Robin says:

    Hey my friend, it breaks my heart to hear of your exacerbation 😕 you are one of the most amazing women I know! Praying for you!! 🙏

  6. Darlene says:

    Thank you Kim that is just what I needed to hear at this time I have been feeling very tired since Christmas I received the last of my company Saturday and can’t seem to get going since had a good cry yesterday feeling the loss of all I was able to do before

    • Hi Darlene,
      I so understand…it is so hard to face how much less we can do than we used to. I’ve started saying lately that my lungs get 100% of the votes, no matter what I want to do or used to do. I’m glad you let yourself have a good cry. Sometimes it really helps. Please keep taking good care of yourself. We’re in this together.

  7. ivana bertazzo says:

    Mio marito l’anno scorso ad Aprile, in seguito ad una polmonite, ha avuto un’esacerbazione della malattia. Il suo pneumologo lo ha ricoverato in Ospedale e per tre giorni consecutivi gli ha somministrato 500 mg di cortisone. Incredibilmente la sua situazione è migliorata al punto che non ha dovuto usare l’ossigeno come gli è stato prospettato nel momento del ricovero. A dicembre la Tac è risultata migliore rispetto a quella di febbraio dove c’erano alcune opacità che preludevano alla riacutizzazione di Aprile. Ora prende Ofev 150 due volte al giorno e 10 mg di cortisone. Sta bene e la saturazione è sempre alta ( sui 96/97) e nel test del cammino ha iniziato a 96 ed ha finito a 94. Da quando ha avuto la riacutizzazione io vivo nella paura che ne abbia nuovamente una e per questo cerco in tutti i modi di evitare tutto quello che potrebbe farlo ammalare. Ivana

    Translated comment:
    My husband last year in April, following a pneumonia, had an exacerbation of the disease. His pulmonologist admitted him to the hospital and gave him 500 mg of cortisone for three consecutive days. Incredibly, his situation has improved to the point that he did not have to use oxygen as he was told at the time of admission. In December, the Tac was better than the one in February where there were some opacities that were a prelude to the April flare-up. Now he takes Ofev 150 twice a day and 10 mg of cortisone. He is well and saturation is always high (96/97) and in the test of the walk he started at 96 and he finished at 94. Since he had the exacerbation I live in fear that he has one again and for this I look for in all ways to avoid anything that could make him sick. Ivana

    • Dear Ivana,
      Nice to hear from you. So appreciate you sharing about your husband’s exacerbation. So glad his treatment helped him recover. That is very good news. He is blessed to have you looking out for him, and trying to prevent anything that could make him sick. Take good care of yourself too.

  8. Bob Bradley says:

    Sorry to hear about your situation, Kim. I, too, suffered my first acute exacerbation early last month. I wound up in the hospital for several days after becoming so weak that I couldn’t walk 10 feet — even on oxygen. Now, my new baseline is much lower than it was & I’m a declining IPF patient on oxygen 24/7 and largely homebound.
    Due to this extremely serious incident, I have begun the process to see if I can get a lung transplant, even though I’m 74. Unfortunately, it is my only option. I pray for a new lung. Kim, I wish you the very best.

    • HI Bob,
      So sorry you just went through an exacerbation too. I’m getting to be largely homebound too. It is so hard. Good for you for taking steps to see if you can get a transplant. Some centers have age limits and others do not — they look at each patient individually. If one says no, try another one. So appreciate your well wishes…right back at you!

  9. Hi Kim
    Sorry to hear things have got worse for you i was diagnosed with I.P.F.about 4 years ago and i fear the future however luck seems to be with me as it has not progressed since it was diagnosed, 3 months before that i was told that i had cancer of the bladder and prostate underwent radio and chemo therapy and have beaten it and recently was given the all clear once all put down to positive thinking, at 76 years of age each day is a gift i hope things will settle down for you and wish all the best.
    kind regards
    william.

    • Dear William,
      You are a fighter with a good attitude! So glad you were able to beat two types of cancer! Wow! So glad your PF hasn’t progressed. So appreciate your kind words and well wishes. Keep taking great care of yourself 🙂

  10. Dale Darling says:

    I am now going on 6 years with this IPF, last year I found out I have Afib, had the surgery but never seen to feel a whole lot better afterwords, but that’s just the way this disease goes. I was out outside about two weeks ago bending over and working on a pump in the cold down by my barn. It was about 20 degrees out and I was outside for about 30-45 minutes. My wife said I better go inside, and ask if she should get the car and drive me up to the house because my hill has been a challenge for me to walk back to the house this winter. She got me in the car and drove me to the door. When getting out of the car I tried to take a deep breath and couldn’t even with the POC on my side take in any air. That was the most awful feeling not be able the breathe, I did manage to get to my chair and put on my large home concentrator and the POC together and in about 5 minutes my lungs were working again. Well, now I am real careful about the cold and even bought some Boost Oxygen in a can just in case this happens again, I will have some sort of emergency back up .

  11. David Raedeker says:

    Hi Kim, I also have lost a lot of lung capacity in the lsat 9 months. I am on 8-10 lpm at rest and 15 + lpm active. I was in the hospital 3 weeks and returned to my daughters home. I am treated like a king. Everyone is so helpful. My biggest problem is going to the doctor appointments. I have a nurse come to the home to check me over, but I still have a doctor appointment every once in a while. It has taken me some time to adjust to the new me, but I am making it. I am hoping I can get an equipment upgrade to meet my needs. Have gpa good day. Dave

    • Hi Dave,
      Thanks for sharing about your situation. I’m so glad you are getting such good care. That is so good to hear. I hope you will be able to get portable oxygen that makes it easier to get to your appointments. It is hard enough to leave home as it is, never mind not having the O2 flow you need. Love your positive attitude. Take good care.

  12. Kathi says:

    Hi Kim,
    I’ve read several of your articles. They have been very helpful to me as a newly diagnosed person. I just want you to know that I appreciate all you do for the PF community. Your willingness to share your experiences are a tremendous and generous gift to us. I’m praying things start looking up for you!

    • Hi Kathi,
      So glad my columns are helpful. I so appreciate your encouragement about the ways I’m trying to help my fellow PF friends. So appreciate your prayers. I know it is SO HARD being newly diagnosed. In case you haven’t heard, I just published a book for PF patients and their families that might help. If you are interested it is available on amazon – “Pulmonary Fibrosis Journey: A Counselor and Fellow Patient Walks with You.” Hope it is a blessing to you. Thanks again for all your encouragement 🙂

  13. mary lynch says:

    So sorry you experienced an exacerbation of the disease, Kim.
    You are such a wonderful source of encouragement, information and comfort so many.

  14. Joyce Douglas says:

    Hi Kim. I don’t believe I have written to you as yet. I’ve had the IPF diagnosis since May of 2017. Had 3 exacerbations. Two last spring when A.Fib decided to join my problem. I had a cold and bad cough for 2 wks. Went to my Dr but he didn’t think it was bad enough for meds so went home and of course became worse. I began taking a cough medication (Benlyn)and finally got the cough slowed up. My ears ached and my teeth were giving pain with hot or cold. Went back to my Dr. He finally gave me some antibiotics. Told me I couldn’t come in for every little thing! I am changing doctors! If I can’t depend on him he’s not worth having. When I get worse I expect some help, verbally, but I think he doesn’t know what to do and just sluffs things off. I am going to check with my Pulmonary Dr. and get his advice. Since my cold and cough I have had an oxygen drop from 2 l to now needing 3 around home sitting and 4 l when walking. I too find I just run out of air, need to stop and recover before I carry on further. Scary and I’m thinking I’m losing ground quicker than I should. I’m on Esbriet so wonder if it is no longer working. Will see my new Dr. (if I can get one) next week.

    • Hi Joyce,
      So sorry you’ve had such a terrible time this last year and a half. I’m so glad you are changing doctors! With PF, even the smallest cold can go south fast. Do whatever you can do to see your pulmonologist this week, and get a recommendation to a new primary care doctor who will take you seriously. You deserve the very best care! Take good care my PF friend.

  15. Ada Steenekamp says:

    Hi Kim,
    When I read your story, it was as if it was my own. I am 63 and have been diagnosed with NSIP (a strain of IPF) in Jun2016. My FVC at that stage was 47% and it stayed stable till July 2018. On a visit to my lung specialist, my FVC has dropped by 13% in less than a year, leaving me with 34% lung capacity.

    It was after we flew to visit my daughter and grandchildren in Johannesburg. We stay in Cape Town, South Africa. I was on no oxygen at that stage. When we arrived at Jhb airport, I immediately felt so tired I could almost not move. That whole weekend it felt as if I was lame; couldn’t lift my arms and couldn’t walk 10 meters. After that I was in bed for more than a week.

    It seems as if flying is not good for people with this illness. What scared me the most is that one such “error” can cause permanent reduction in lung capacity and to such a large extend!

    I am now using a portable oxygen machine, stopped working and do only very small tasks before I need to rest.

    What I realised after this ordeal, is that we must be very careful not to over-exert ourselves and get to grips with the reality that scaling down is compulsory; not a luxury.

    Thanks for your articles.

    • Hi Ada,
      Our stories are so similar. So sorry for what you’ve been going through. I’m amazed you were able to fly at 47% lung capacity. So sorry it took such a horrible toll on you. It is scary but necessary to take extremely good care of ourselves. So glad you’ve been able to make some important changes to ensure you stay as healthy as possible for as long as possible. So appreciate you sharing your experience. So glad my columns are helpful. I just published a book for PF patients and their families that might help. If you are interested it is available on amazon – “Pulmonary Fibrosis Journey: A Counselor and Fellow Patient Walks with You.”

  16. DJ HIXSON says:

    Kim so sorry to hear of your decline. I bought your book, being a new IPF pt I needed all the help I could find. Thank you for writing it, it helped a great deal now and for the future. God bless and keep you in his hands.

  17. Peterdavies says:

    Hi Kim very much appreciated by all of us that you keep writing this blog , I have had enough now awaiting lung transplant can’t hardly do anything even walk in dogs very sad I must just wish you all the very best and to other sufferers of I p f try to keep up with your life x Pete Davies

  18. Dear Kim: I follow your column and I link and translate those publications that seem relevant to patients through my blog (epidi). I have always found them very useful, especially the way you comment aspects of the disease and the coexistence with it that I have only found in your writings. I would like to send my best wishes for you, warrior, and wish you a good recovery.

  19. Tiffany says:

    Hi! My father has been living with pulmonary fibrosis since 1991. His doctor regularly adds a prednisone regimen in addition to his normal albuterol rescue inhalers, controller inhalers such as advair and around the clock nebulizer treatments of albuterol and more recently Duoneb which has ipatropium bromide. This seems to really help. I see his disease progressing but they are yet to put him on oxygen. Maybe some of his treatments will help others.

  20. Annetta Berghorst says:

    My husband was diagnosed in May 2015. He started Esbriet immediately and first 2 years did pretty good. He has had two pulmonary embolism, pulmonary hypertension and this past summer he had to have a heart stent, and then was hospitalized with a- flutter a month later had a ablation . This all took him down. Right before Christmas he was hospitalized with bronchitis. He now realizes his life is completely altered. 24/7 oxygen therapy. 5 liters. Uses a walker or a wheelchair if we go out. Through all of this his greatest pleasure is driving and traveling. It’s hard to see him deteriorate. Four times we have been denied lung transplant. He is 72. They told us his situation was too complex. We take one day at a time and he enjoys being pampered by our four children also. Thank you for this blog. I just discovered it and will definitely buy your book!!!

  21. Beverly Mix says:

    I was diagnosed with ILD, PF in 2014 at the age of 59. Confirmed to be IPF in late 2016. Started on Ofov then, oxygen April 2017. End of June 2018 had my morning shower, coughing more than usual, by 10 am feeling unwell enough that I thought maybe I should see my PCP. By noon couldn’t walk without holding onto something for support, so went to ER. Nothing showed but the attending put me on 2 intravenous antibiotics and Prednisone. Took 4 days to feel better. It was not dramatic, no fever, but I still remember the absolute feeling of too tired and sick to do anything. My pulmonologist did confirm that it was an exacerbation, reason unknown.

    And now we have discovered that my very healthy heart has developed “severe” Pulmonary Hypertension in less than a year. My oxygen needs have increased significantly also, now on 12 to 15 lpm at home. And using Hydromorphone Syrup to help control cough and chest pain.

    Being housebound with the cold we are getting in Edmonton, AB Canada is tough right now. When the weather moderates, I will go out more but it will take planning and being careful. 1 outing every 2 to 3 days seems to be the most I can handle. A new normal.

    But I am still having coffee with my husband of 46 years. We are planning some renos to our Motor Home to accomodate two concentrators and then I should be able to do some traveling with my Tony and the grandkids, even though I will have a 50′ leash to the MH. Wishing you and all of us dealing with this disease, to be as well as possible and try to find some peace everyday.

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